I have put a lot of thought into wanting a movie made about my story; especially because there is already a book written about it, "It's all in Your Head." I think that a movie made after my book would be wonderful, and it would reach so many more people than my book probably ever would. I think a movie is an excellent way to get my story out there in a real life version so that people could "see" what I went through, as compared to reading about it. I am hoping one day, that will be a reality.
When I sit there and think about a movie, I do think of things like; who would play me, my ex-husband, and my doctors. For me, I'd like either Michelle Pfeiffer or someone like her, to play me. I sometimes envision Keanu Reeves playing my ex-husband, and I am not sure who I would want to play my doctors. Probably William Hurt to play my surgeon, but the neurosurgeon who followed me after my shunt and who allowed it to overdrain, I am not sure. It would have to be someone who could portray his mannerisms just so - his rudeness, cockiness, non-emotional and non-sympathetic personality traits.
If my story were a movie, it would follow me from being diagnosed with my rare brain cyst, through surgery and how everything turned downward for me and I developed my Chiari and brain sagging. It would follow me in trying to get medical treatment and being turned down and having to beg for help and medical treatment. There is so much to my story that a lot would have to be cut-out to make it a two hour movie....but it could definitely be done and I think, should be done. Especially because a book has already been written about what I went through and is out now; "It's all in Your Head." I would want to hit the important, key points that made my story, well....a story.
The message I would want to convey to people watching my movie is that these brain cysts are real. Chiari - it is real, and all the symptoms that go along with these conditions, are very real. I want to convey to people that Chiari is a serious brain issue and that people living with this condition are strong people to have to contend with all they contend with on a day-to-day basis. I would want to convey to people and doctors alike that these brain conditions are serious and they deserve the utmost care.
I have never seen a movie on such a medical condition and it would be great to see a movie made about what people with such rare brain problems live with. That way, people and doctors alike, could see what people with these conditions go through, live with, and in the end, hopefully understand them better.
Movies are something people can relate to even more-so than books because they can see how the story plays out, which helps them really relate to the people. I am working on having a movie made, and maybe one day, it will happen. And...maybe more people will see and understand more of what Chiari Malformations are, as well as brain cysts. That is my hope and my prayer.
Thursday, May 31, 2012
Wednesday, May 23, 2012
Your Brain and Balance Problems
If I had to say which of my symptoms bothers me most, I would have to say it is my balance. It's really hard to choose, because all of the symtpoms I live with bother me a great deal, but my balance problems really, really get to me. I have days where I feel like I should just "sit" all day and not even try to walk. And actually, the strange thing is that although my balance is bad enough when walking, it happens to be when I'm standing still and not moving at all, that it's the worst.
The brain stem is the governor of balance. And although I had problems with balance when I just had the Arachnoid Cyst, it got much worse when I developed my Chiari Malformation. My cyst was putting pressure on my brain stem, so I was already having enough trouble with balance. But once my brain stem herniated into my spine, WOW! I noticed a huge difference! I found that suddenly I was walking like I was always on a boat, rocking in the waves. I would have to reach out and grab onto something, or someone sometimes when I was walking, or when standing still. Over time, I got to where I would hold my legs different....tight. My knees would get thrown back to keep my balance, or I would cock a leg out to gain my balance when just standing there.
Bending over has become a thing of dread! I get so frustrated some days when I feel like all I do is bend over to pick something up. Those days are usually because I'm having a bad day of dropping everything that gets in my hands, and I have to bend and pick them up. Or my kids have dropped things on the floor that I'm having to clean up after them. I will bend to retrieve the item, lose my balance, wobble, almost fall over, miss the object I'm trying to get, then have to regain my balance and try again. It's a process - and an ordeal.
Once I've gotten whatever it is I was aiming for, it usually always makes me stop to think how people who don't have this problem, just don't know how lucky they are to be able to just bend over and pick something up off the floor. It's just a normal function, that most people don't ever put any thought into. I mean, why would they? Their brains work properly and they just do whatever it is they need to do without any thought. I have to think about everything I do today - every move I make. I have to put thought into every action, and it can be exhausting!
What I have learned is to slow down. I try not to do things too fast, but to concentrate on the task I'm doing so that I am more apt to do it right and without incident, the first time. Like emptying the dishwasher, for instance. That is a prime time for me to lose my balance and drop things. Unloading the silverware seems to be a chore that is very difficult. Because my hands don't work as well either, today, I tend to drop things easily when unloading the dishwasher - especially the silverware. I don't grasp things like I used to, so getting too many pieces of silverware in my hand is prime, dropping time for me. Then there's just losing my balance in general when bending over the dishwasher to pull things out. That is cause too, for dropping whatever is in my hand because suddenly I'm needing my hand free to grab onto the counter or something to get my balance. So over time, I have learned to only get a few pieces of silverware or one or two glasses at a time. I don't overload myself with items. It may take me longer to get the chore done, but at least most times now, I'm not having to bend and pick up items off the floor. I mean, there are still days that it just doesn't matter what I do, how I do it, or the thought and care I put into the task to avoid dropping things, I'm just going to drop whatever is in my hands, regardless.
There are things like balance therapy that I have talked to my doctor, my neurosurgeon, about. He recommended I try it, but I have yet to seek any treatment or therapy sessions. For some reason, for me and my case, I am just not sure that it will really help. I look at it as....until my herniated brain stem is corrected and not dangling down into the spine anymore, there is no therapy that's going to work. I could be wrong about that, I don't know. And I may opt to get the therapy or try it, one day. But for now, I just keep trying my tricks of standing in a certain way when standing still, stopping before I bend over to consciously think about what I'm doing and concentrate on the task before I just dive into the bent-over position. I make sure that I have my balance as best as possible, before I just bend and pick. Even so, I can still topple, but it does help.
I do still fall sometimes, too, and believe me, at 43 years old, falling down isn't pretty. If something takes me off guard and off balance enough that I can't recover from quickly enough, I have been known to hit the ground. Let me tell you, it hurts more today, falling as a grown woman, than when I was a kid. I don't know if I'm falling harder or if it's that I'm not able to fall as gracefully, like you do when you're a child. What I remember is that you tend to know how to fall when you're a kid, and just fall easier, more gracefully, something. Today, it is ugly, and it hurts! For a while, I seemed to have these constant bruises on my knee like I did when I was a kid.
If you suffer from balance problems with your brain cyst or Chiari, maybe you would benefit from balance therapy - I don't know. I just know that everyone is different and responds to different treatments differently. What may not work for one, may work for someone else. I do know that it is something to think about and maybe look into. Just because I don't think it will work for me, doesn't mean it wouldn't work for someone else. Like I said, I may follow through with it down the road. I have actually been thinking more about it recently.
Here is a link to learn more about balance therapy. http://www.medcentertherapy.com/balanceTherapy
And if you suffer from balance problems with your brain cyst, or have a Chiari Malformation or other brain issues that create balance problems, try to just slow down and concentrate a little harder on your task and what you are doing. That's what I can recommend. You can't just "do" anymore. You have to think about what you do - every step of the way, and prepare yourself.
Although I still have my days, like I said, where it seems like no matter what I do, I am just off balance, I can usually make it at least a little bit better by slowing down and using more concentration on what I'm doing, and on my every move.
Today I also try to be more forgiving of myself and my inadequacies. It used to really bother me that I always bump into things, or lean, or topple. Today, I try to laugh it off more. I also find myself explaining to others - people I know, or even don't know that see me lean, wobble, and almost fall. When I see them looking and staring at me like maybe I've been drinking, I just flash them a smile and say, "Brain surgery." And then they usually smile, and they seem to get it. Many times I get a sympathetic look or an, "awwww."
Below are a few links to some balance exercises you can try at home. I do, do them sometimes and plan on getting into a more regular routine with them to see if I can do any good for myself with some balance exercises. I will post down the road about my experience with them and let you know if they do help. And remember....my story may help you get through whatever it is you are dealing with - "It's all in Your Head," now available on Amazon, through Barnes and Noble, Tate Publishing and wherever you buy books.
http://www.amazon.com/Its-Your-Head-Maria-McCutchen/dp/1613460716/ref=sr_1_1?s=books&ie=UTF8&qid=1337510970&sr=1-1
Links to balance exercises:
1. http://physicaltherapy.about.com/od/balanceexercises/p/BalanceEx.htm
2. http://www.strongshape.com/balance-exercises.html
3. http://www.bodyresults.com/e2balanceexercises.asp
4. http://www.livestrong.com/balance-exercises/
The brain stem is the governor of balance. And although I had problems with balance when I just had the Arachnoid Cyst, it got much worse when I developed my Chiari Malformation. My cyst was putting pressure on my brain stem, so I was already having enough trouble with balance. But once my brain stem herniated into my spine, WOW! I noticed a huge difference! I found that suddenly I was walking like I was always on a boat, rocking in the waves. I would have to reach out and grab onto something, or someone sometimes when I was walking, or when standing still. Over time, I got to where I would hold my legs different....tight. My knees would get thrown back to keep my balance, or I would cock a leg out to gain my balance when just standing there.
Bending over has become a thing of dread! I get so frustrated some days when I feel like all I do is bend over to pick something up. Those days are usually because I'm having a bad day of dropping everything that gets in my hands, and I have to bend and pick them up. Or my kids have dropped things on the floor that I'm having to clean up after them. I will bend to retrieve the item, lose my balance, wobble, almost fall over, miss the object I'm trying to get, then have to regain my balance and try again. It's a process - and an ordeal.
Once I've gotten whatever it is I was aiming for, it usually always makes me stop to think how people who don't have this problem, just don't know how lucky they are to be able to just bend over and pick something up off the floor. It's just a normal function, that most people don't ever put any thought into. I mean, why would they? Their brains work properly and they just do whatever it is they need to do without any thought. I have to think about everything I do today - every move I make. I have to put thought into every action, and it can be exhausting!
What I have learned is to slow down. I try not to do things too fast, but to concentrate on the task I'm doing so that I am more apt to do it right and without incident, the first time. Like emptying the dishwasher, for instance. That is a prime time for me to lose my balance and drop things. Unloading the silverware seems to be a chore that is very difficult. Because my hands don't work as well either, today, I tend to drop things easily when unloading the dishwasher - especially the silverware. I don't grasp things like I used to, so getting too many pieces of silverware in my hand is prime, dropping time for me. Then there's just losing my balance in general when bending over the dishwasher to pull things out. That is cause too, for dropping whatever is in my hand because suddenly I'm needing my hand free to grab onto the counter or something to get my balance. So over time, I have learned to only get a few pieces of silverware or one or two glasses at a time. I don't overload myself with items. It may take me longer to get the chore done, but at least most times now, I'm not having to bend and pick up items off the floor. I mean, there are still days that it just doesn't matter what I do, how I do it, or the thought and care I put into the task to avoid dropping things, I'm just going to drop whatever is in my hands, regardless.
There are things like balance therapy that I have talked to my doctor, my neurosurgeon, about. He recommended I try it, but I have yet to seek any treatment or therapy sessions. For some reason, for me and my case, I am just not sure that it will really help. I look at it as....until my herniated brain stem is corrected and not dangling down into the spine anymore, there is no therapy that's going to work. I could be wrong about that, I don't know. And I may opt to get the therapy or try it, one day. But for now, I just keep trying my tricks of standing in a certain way when standing still, stopping before I bend over to consciously think about what I'm doing and concentrate on the task before I just dive into the bent-over position. I make sure that I have my balance as best as possible, before I just bend and pick. Even so, I can still topple, but it does help.
I do still fall sometimes, too, and believe me, at 43 years old, falling down isn't pretty. If something takes me off guard and off balance enough that I can't recover from quickly enough, I have been known to hit the ground. Let me tell you, it hurts more today, falling as a grown woman, than when I was a kid. I don't know if I'm falling harder or if it's that I'm not able to fall as gracefully, like you do when you're a child. What I remember is that you tend to know how to fall when you're a kid, and just fall easier, more gracefully, something. Today, it is ugly, and it hurts! For a while, I seemed to have these constant bruises on my knee like I did when I was a kid.
If you suffer from balance problems with your brain cyst or Chiari, maybe you would benefit from balance therapy - I don't know. I just know that everyone is different and responds to different treatments differently. What may not work for one, may work for someone else. I do know that it is something to think about and maybe look into. Just because I don't think it will work for me, doesn't mean it wouldn't work for someone else. Like I said, I may follow through with it down the road. I have actually been thinking more about it recently.
Here is a link to learn more about balance therapy. http://www.medcentertherapy.com/balanceTherapy
And if you suffer from balance problems with your brain cyst, or have a Chiari Malformation or other brain issues that create balance problems, try to just slow down and concentrate a little harder on your task and what you are doing. That's what I can recommend. You can't just "do" anymore. You have to think about what you do - every step of the way, and prepare yourself.
Although I still have my days, like I said, where it seems like no matter what I do, I am just off balance, I can usually make it at least a little bit better by slowing down and using more concentration on what I'm doing, and on my every move.
Today I also try to be more forgiving of myself and my inadequacies. It used to really bother me that I always bump into things, or lean, or topple. Today, I try to laugh it off more. I also find myself explaining to others - people I know, or even don't know that see me lean, wobble, and almost fall. When I see them looking and staring at me like maybe I've been drinking, I just flash them a smile and say, "Brain surgery." And then they usually smile, and they seem to get it. Many times I get a sympathetic look or an, "awwww."
Below are a few links to some balance exercises you can try at home. I do, do them sometimes and plan on getting into a more regular routine with them to see if I can do any good for myself with some balance exercises. I will post down the road about my experience with them and let you know if they do help. And remember....my story may help you get through whatever it is you are dealing with - "It's all in Your Head," now available on Amazon, through Barnes and Noble, Tate Publishing and wherever you buy books.
http://www.amazon.com/Its-Your-Head-Maria-McCutchen/dp/1613460716/ref=sr_1_1?s=books&ie=UTF8&qid=1337510970&sr=1-1
Links to balance exercises:
1. http://physicaltherapy.about.com/od/balanceexercises/p/BalanceEx.htm
2. http://www.strongshape.com/balance-exercises.html
3. http://www.bodyresults.com/e2balanceexercises.asp
4. http://www.livestrong.com/balance-exercises/
Monday, May 21, 2012
Contact Me
Hi all,
I have received some comments and responses to some of my posts, and am having trouble responding to them. If you'd like to contact me with questions or comments, you can reach me at mariarich40@yahoo.com.
I enjoy reading your comments and would love to address your questions, so if you'd still like me to respond, contact me at the above email address and I will!
Thanks for reading and following my blog. My goal is to be as helpful and supportive as I can to others dealing with brain issues; particularly, Arachnoid Cysts and Chiari Malformation. I look forward to hearing from you.
Best wishes to all!
Maria
I have received some comments and responses to some of my posts, and am having trouble responding to them. If you'd like to contact me with questions or comments, you can reach me at mariarich40@yahoo.com.
I enjoy reading your comments and would love to address your questions, so if you'd still like me to respond, contact me at the above email address and I will!
Thanks for reading and following my blog. My goal is to be as helpful and supportive as I can to others dealing with brain issues; particularly, Arachnoid Cysts and Chiari Malformation. I look forward to hearing from you.
Best wishes to all!
Maria
Thursday, May 3, 2012
Sleeping With My Cyst
Oh sweet sleep! Something that I have had to fight to get for a long time. I remember when I used to love to sleep. I loved to sleep in, and I loved to lounge in bed. How many years ago was that? A lot of years ago...probably since 2004 when my symptoms first began. For me, it became a chore, rather than a natural process.
Through the years I have tried multiple things to help me sleep. I consider myself master of sleep tricks, although they aren't really "tricks" but things that many people do to help themselves sleep. I just have gotten good at trying, choosing, rotating, and combining.
One of the first things I did when I first became symptomatic with my cyst and noticed that my head ached at night, was to change pillows. I couldn't figure out why my pillow suddenly felt like a rock rather than the soft, fluffy thing I used to love laying on.
After an MRI discovered the large Posterior Fossa Arachnoid Cyst on the back of my brain, it made sense. It was putting pressure on the back of my brain and pressing on the skull, so my head ached when I laid on it. Once the cyst was discovered, it all made sense and I knew I had to do something about the aching, so I began shopping for a different pillow. I went through about 4 pillows before I settled on the softest, down pillow I could find. It used to be that I didn't like down pillows, now, it is my best friend and the only pillow I can and will use. I have had the same down pillow since 2004, and it goes everywhere with me - on vacation, whenever I've moved, everywhere.
Today, not only does my cyst cause me to lose sleep, but also my Chiari Malformation and brain sagging. So more than the pillow, I have had to adopt tricks for sleeping. A few of the things that have helped me, and they may seem simple and no brainers, but they have helped many people get sleep, and for many - they do work. My remedies are all-natural remedies because I cannot take medication easily. With all my neurological issues, I have reactions to medications and simply cannot take sleep-aids.
If you have trouble sleeping, maybe you'll find that one of my tricks works for you, and helps you too.
Try a couple of these home remedies the next time you can't sleep. See which ones work for you. You may have to try it a few times to let your body adjust, or a combination of two remedies. I now am so glad I don't need medication to help me sleep, since medications and I don't mix well. I can get some sleep and not have any side effects.
Through the years I have tried multiple things to help me sleep. I consider myself master of sleep tricks, although they aren't really "tricks" but things that many people do to help themselves sleep. I just have gotten good at trying, choosing, rotating, and combining.
One of the first things I did when I first became symptomatic with my cyst and noticed that my head ached at night, was to change pillows. I couldn't figure out why my pillow suddenly felt like a rock rather than the soft, fluffy thing I used to love laying on.
After an MRI discovered the large Posterior Fossa Arachnoid Cyst on the back of my brain, it made sense. It was putting pressure on the back of my brain and pressing on the skull, so my head ached when I laid on it. Once the cyst was discovered, it all made sense and I knew I had to do something about the aching, so I began shopping for a different pillow. I went through about 4 pillows before I settled on the softest, down pillow I could find. It used to be that I didn't like down pillows, now, it is my best friend and the only pillow I can and will use. I have had the same down pillow since 2004, and it goes everywhere with me - on vacation, whenever I've moved, everywhere.
Today, not only does my cyst cause me to lose sleep, but also my Chiari Malformation and brain sagging. So more than the pillow, I have had to adopt tricks for sleeping. A few of the things that have helped me, and they may seem simple and no brainers, but they have helped many people get sleep, and for many - they do work. My remedies are all-natural remedies because I cannot take medication easily. With all my neurological issues, I have reactions to medications and simply cannot take sleep-aids.
If you have trouble sleeping, maybe you'll find that one of my tricks works for you, and helps you too.
- Warm Milk - Most of us have heard that a cup of warm milk before bed helps you sleep. Well, believe it or not, it does actually work. Milk contains the amino acid, L-Tryptophan, the same amino acid in turkey that makes many people sleepy after a big turkey dinner. L-Tryptophan triggers the feeling of being tired and sleepy and can get you relaxed, like a natural sleep aid. It works for me, and it is one of my favorite tricks to use.
- Warm bath or shower - A nice warm or hot shower before bed can relax tense muscles, relax your body, and for me, relax those sore, tense muscles in my neck that flare up due to my cyst and Chiari. A good 20 minute hot shower before bed can be enough to relax me so that I get more hours of sleep, rather than not doing anything at all before bed. It is especially effective when done in combination with another one of my remedies.
- Heating Pad - Sometimes a nice warm heating pad on my neck or the back of my head in bed, can help me relax enough to sleep. I own one that shuts off automatically so that I don't have to worry about it lying there all night, turned on. The warmth will help me relax, get sleepy, fall asleep, and many times - stay asleep.
- Chamomile tea - Matricaria recutita, or Manzanilla, is the main herb in Chamomile tea. This herb has been brewed and drank for centuries, especially as a sleep-inducer. It has a good flavor, is smooth, and about half way through a cup, I am relaxed and sleepy.
- Meditate - Some nights before bed, I will turn the TV off, put on some soft, relaxing music, and I will meditate. I sit on the floor in Indain style, close my eyes, and zone out. I try to think of nothing, but rather just get in touch with my inner self. I picture myself getting sleepy and before I know it, I am. I have even been known to doze off, right there in my spot on the floor.
Try a couple of these home remedies the next time you can't sleep. See which ones work for you. You may have to try it a few times to let your body adjust, or a combination of two remedies. I now am so glad I don't need medication to help me sleep, since medications and I don't mix well. I can get some sleep and not have any side effects.
Thursday, April 26, 2012
Dealing With a Chronic Medical Condition, and Difficult People
After I was diagnosed with a rare brain cyst, I was just sure I would be getting the best treatment. I just knew that my case would be viewed as urgent and critical. Boy was I wrong! Instead, what I got was the big blow-off. I got the run around, condescending looks, and told to go home and stop worrying - my problem wasn't really a problem at all (so-to-speak).
I tried, Lord knows I tried to believe in the doctors that were "taking care" of me. I wanted to believe that the cyst wasn't "the" problem that was causing all the odd symptoms I was living with, but turns out it was. How wrong they were. Two brain surgeries later, including inserting a shunt into my cyst, and now, a whole new set of problems were developing. I had a boatload of new problems and was, in a sense, back to square one in trying to find a doctor to take care of me - to believe me and want to help me. But once again, that would prove to be a difficult task. What I got was more doctors to give me more sideways looks, and more of the brush-off that I had become accustomed to.
Turns out that my shunt had been over-draining for too long, and this over drainage caused my brain to sag and for me to develop what is known as a Chiari Malformation, where the brainstem herniates into the spine. I was in trouble. In the end, my shunt pressure had to be adjusted over and over again to get more fluid in my head, around the brain to help float the brain back up. In the end, it would help a little, but not enough. It never did float up, back to its normal position, and not all of my symptoms were resolved.
It was one thing that doctors didn't believe me and wouldn't listen to me. It was one thing to have them ignore me and my problems, and for them not take me seriously- that was all bad enough. But when certain family members, even close friends began to belittle my situation and try to make me feel as if I needed to just "get over it," and "move on," that was almost harder to take. That was almost too much to bear. You expect that the people closest to you in your life will be supportive. You expect that they will always be there for you. But for me, their denial of support and their disbelief, although it didn't affect me in the way the doctors' disbelief did, but it was almost as devastating. I needed those closest to me to be supportive, and I needed their care and support. When I didn't get it, I realized I had a decision to make - to keep them in my life? Or to cut them loose? So, I decided to cut them loose. I decided to "clean house" and only keep those that were supportive and those that were kind and understanding, in my life.
It was hard. It was a tough thing to do, but their negativity, their condescending remarks and even looks, were only making my health issues worse. I decided to surround myself with only positive, supportive people. I, nor my health, could afford the stress of worrying about whether people in my life were on my side. Whether they were going to support me, or doubt me. I found myself feeling sicker, both physically and mentally, with always worrying about whether or not certain people would listen, believe and support me. I couldn't stand the worry with what I should share with them about my condition, and the worry of not being able to talk to them about what I was going through and dealing with for fear that they would tell me I need to "Get over it," or "You've already had your surgery....move on." No, I couldn't do it anymore; not if I was going to heal; physically, emotionally, and mentally.
I have missed some of my old friends that I no longer have contact with, but it has also been a relief. I feel relieved that I don't have to make sure I say the right thing to them so that I don't get a sermon about "getting over things" or "why do I want to stay in the negative?"
I do understand that those who have never lived through what I have, cannot truly understand or appreciate what I've been through and what it is like. But I also don't think that they should try, or judge. To be preachy and bossy about a situation that they have no experience in, does no good. If anything, it is damaging and can make you feel worse - physically, mentally and emotionally. It can destroy relationships, and apparently so, because it destroyed several of my relationships.
One reason I wrote my story, "It's all in Your Head," was to help others better understand what all I went through and continue to go through. I want to help doctors and medical staff understand what patients go through, as well to help others who are living with a long term, chronic medical condition. I want them to see what a patient goes through, especially when they do not listen. I have heard that it is doing all that I have mentioned. It is out there and reaching all kinds of people. It is a human interest story that many people can identify with - whether it's a brain cyst they live with or some other medical condition. And I hope to reach many more as time goes on.
"It's all in Your Head" can be found on Amazon, through Barnes and Noble, on Tate Publishing's website and ordered through any bookstore. It is under Maria McCutchen and will make a nice gift for someone you know who lives with a chroinc medical condition, or for yourself.
I tried, Lord knows I tried to believe in the doctors that were "taking care" of me. I wanted to believe that the cyst wasn't "the" problem that was causing all the odd symptoms I was living with, but turns out it was. How wrong they were. Two brain surgeries later, including inserting a shunt into my cyst, and now, a whole new set of problems were developing. I had a boatload of new problems and was, in a sense, back to square one in trying to find a doctor to take care of me - to believe me and want to help me. But once again, that would prove to be a difficult task. What I got was more doctors to give me more sideways looks, and more of the brush-off that I had become accustomed to.
Turns out that my shunt had been over-draining for too long, and this over drainage caused my brain to sag and for me to develop what is known as a Chiari Malformation, where the brainstem herniates into the spine. I was in trouble. In the end, my shunt pressure had to be adjusted over and over again to get more fluid in my head, around the brain to help float the brain back up. In the end, it would help a little, but not enough. It never did float up, back to its normal position, and not all of my symptoms were resolved.
It was one thing that doctors didn't believe me and wouldn't listen to me. It was one thing to have them ignore me and my problems, and for them not take me seriously- that was all bad enough. But when certain family members, even close friends began to belittle my situation and try to make me feel as if I needed to just "get over it," and "move on," that was almost harder to take. That was almost too much to bear. You expect that the people closest to you in your life will be supportive. You expect that they will always be there for you. But for me, their denial of support and their disbelief, although it didn't affect me in the way the doctors' disbelief did, but it was almost as devastating. I needed those closest to me to be supportive, and I needed their care and support. When I didn't get it, I realized I had a decision to make - to keep them in my life? Or to cut them loose? So, I decided to cut them loose. I decided to "clean house" and only keep those that were supportive and those that were kind and understanding, in my life.
It was hard. It was a tough thing to do, but their negativity, their condescending remarks and even looks, were only making my health issues worse. I decided to surround myself with only positive, supportive people. I, nor my health, could afford the stress of worrying about whether people in my life were on my side. Whether they were going to support me, or doubt me. I found myself feeling sicker, both physically and mentally, with always worrying about whether or not certain people would listen, believe and support me. I couldn't stand the worry with what I should share with them about my condition, and the worry of not being able to talk to them about what I was going through and dealing with for fear that they would tell me I need to "Get over it," or "You've already had your surgery....move on." No, I couldn't do it anymore; not if I was going to heal; physically, emotionally, and mentally.
I have missed some of my old friends that I no longer have contact with, but it has also been a relief. I feel relieved that I don't have to make sure I say the right thing to them so that I don't get a sermon about "getting over things" or "why do I want to stay in the negative?"
I do understand that those who have never lived through what I have, cannot truly understand or appreciate what I've been through and what it is like. But I also don't think that they should try, or judge. To be preachy and bossy about a situation that they have no experience in, does no good. If anything, it is damaging and can make you feel worse - physically, mentally and emotionally. It can destroy relationships, and apparently so, because it destroyed several of my relationships.
One reason I wrote my story, "It's all in Your Head," was to help others better understand what all I went through and continue to go through. I want to help doctors and medical staff understand what patients go through, as well to help others who are living with a long term, chronic medical condition. I want them to see what a patient goes through, especially when they do not listen. I have heard that it is doing all that I have mentioned. It is out there and reaching all kinds of people. It is a human interest story that many people can identify with - whether it's a brain cyst they live with or some other medical condition. And I hope to reach many more as time goes on.
"It's all in Your Head" can be found on Amazon, through Barnes and Noble, on Tate Publishing's website and ordered through any bookstore. It is under Maria McCutchen and will make a nice gift for someone you know who lives with a chroinc medical condition, or for yourself.
Wednesday, April 25, 2012
To Decompress, or Not to Decompress?
When you live with a Chiari Malformation, there isn't a whole lot, medically, that can be done for treatment. The most common form of treatment for a Chiari is, decompression surgery. It is an in-depth surgery that, like any other surgery, is not without risks. As a matter-of-fact, there are quite a few risks involved with a decompression surgery.
Because the tonsils of the brain are herniating into the spine, below the base of the skull, they must be made to be kept within the skull so that they no longer "dangle" below the skull. It is when they get too low, or fall beneath the skull line that you can have horrific symptoms. It does not matter whether they have herniated just a couple of millimeters, or several, each individual will experience different degrees of symptoms.
Symptoms that are common amongst those with a Chiari are:
Other problems I deal with are:
Maybe one day I will decide I've grown tired enough of living the way I do, to where I want to have the surgery. Maybe one day I won't have a choice, but to have the surgery. I do not know what my future holds, but whatever it holds, I just hope that I will at least be able to live life with some sort of quality. I hope that I live well enough that I am able to enjoy my two boys, watch them finish growing up, and am well enough to be able to be an active part of their lives.
So, until then, it is a question of, "To Decompress, or Not to Decompress?" Everyone has to make the best decision for themself at the time, and as of yet, I have no decision. I do not know what is best for me, and until there are substantial guarantees that I would walk away from such a major surgery feeling better and doing better than before I went in....I will probably stay just as I am.
Because the tonsils of the brain are herniating into the spine, below the base of the skull, they must be made to be kept within the skull so that they no longer "dangle" below the skull. It is when they get too low, or fall beneath the skull line that you can have horrific symptoms. It does not matter whether they have herniated just a couple of millimeters, or several, each individual will experience different degrees of symptoms.
Symptoms that are common amongst those with a Chiari are:
- Pain
- Headaches
- Numbness
- Balance issues
- Problems swallowing
- Nausea/Vomiting
- Muscle weakness/Tingling
Other problems I deal with are:
- Vision disturbances
- Audio disturbances
- Sleep disturbances
- Restless leg syndrome
- Sleepiness at odd times
- Muscle twitching
Maybe one day I will decide I've grown tired enough of living the way I do, to where I want to have the surgery. Maybe one day I won't have a choice, but to have the surgery. I do not know what my future holds, but whatever it holds, I just hope that I will at least be able to live life with some sort of quality. I hope that I live well enough that I am able to enjoy my two boys, watch them finish growing up, and am well enough to be able to be an active part of their lives.
So, until then, it is a question of, "To Decompress, or Not to Decompress?" Everyone has to make the best decision for themself at the time, and as of yet, I have no decision. I do not know what is best for me, and until there are substantial guarantees that I would walk away from such a major surgery feeling better and doing better than before I went in....I will probably stay just as I am.
Monday, February 27, 2012
Chiari Malformation - One of Several Medical Issues I Live With
It's been a while since I've posted here ...and I do plan on getting back to regular postings. I want to help others who are going through similar situations as I have been through, and possibly similar problems that I still deal with today.
I not only live with a very large brain cyst; I live with a significant Chiari Malformation as well. And, to add insult to injury, I also have brain sagging - my brain literally fell away from the cortex and sags downward. While many people are born with their Chiari Malformation, known as congenital Chiari, mine was acquired - meaning that it developed later in life and due to another reason.
My Chiari developed from the shunt that I have, over-draining and causing my brain to sag. When the brain sagged, my brain stem herniated into the spine. Mine is a significant Chiari of approximately 8mm, and is very symptomatic for me.
I have lived for over 5 years with my Chiari. I was 38 years old when I developed my Chiari and I was diagnosed with an MRI. There was no mistake in the diagnosis. It is a significant herniation of approximately 8mm, and is very symptomatic for me. The doctors told me that just by my symptoms alone, they knew I had a Chiari. They didn't even need the MRI - but the MRI confirmed it.
I was told that I may need to have the Chiari surgery one day. If my symptoms continued to stay bad for me or get worse, then surgery may be the route I would have to take. As of yet, I haven't had it, and mainly due to the fact that my brain is sagging. Most neurosurgeons I've seen have told me they are afraid to touch my case because they are afraid they'll make the sagging worse. They have all recommended I go to the Chiari Institute in New York, claiming they would be the ones to know if I can be helped. But I just haven't been able to muster the nerve, the strength, or the financial resources to go and to look into it. So as of now, I am not a "Zipperhead." Only a "Zipperhead" from the two brain surgeries I've already had, but not the Chiari surgery.
As far as treatment for my symptoms, I mostly try relaxation treatments. Sometimes I may have to lie down, or do deep breathing in order to help control the pain, but I have not sought outside treatments for my pain and symptoms. I do not take strong painkillers - I can't, due to all my neurological problems. Basically all I can take for pain is Tylenol or Motrin, and sometimes, an occasional portion of an Ativan. I have to be very careful with medications like Ativan, because my neurological system does not handle medicines well today. Regular exercise does tend to help my particular condition most days, but even with that, I have to be careful not to overdo it, because that can cause my problems and symptoms to be worse.
My most odd symptom, that I still have bouts with today, is that I cannot sleep on my left side or back....only my right side. I can lay on my back or left side, but to fall asleep on those sides is horrible. After I'm asleep, while on those sides, I will usually wake up to the feeling that my brain is being wrung out. I get extremely dizzy, feel nauseous, and can hardly stand or walk - I am very weak. It is frightening. There is talk that I may be having nocturnal seizures now, and my doctor is looking into getting a sleep study done, and I'm due for another MRI. So I have no idea what it could be. I have plenty of symptoms related to my Chiari, but that is, to date, my most annoying, frightening, and bizarre.
Living with Chiari is hard to explain to others. Even family members don't understand. If I could get friends and family members to understand Chiari and just one thing even, it would be that Chiari is very unpredictable. People tend to think that because you seemed normal or good one day, that if you have a bad day the next, you are either making it up, exaggerating, or being a baby. I'd like people to understand that you have no control over how things will be for you; day-to-day, hour-to-hour, minute-to-minute. If they think your up's and down's are frustrating for them because they cannot plan something with you, or they see you as "fine" one day and the next, you are a wreck....how do they think you feel about it?
Attitude does play a big role in how I feel. I have had a lot of ups and downs with my frame of mind and attitude. One of the biggest things for me that helps keep me sane and in a pretty good frame of mind, is exercise, as I mentioned earlier. The natural endorphins that flow with exercise can be like a drug. They are a natural mood enhancer. They not only help with keeping me in a good frame of mind, but help with pain as well....unless I overdo it. When I feel better about my body physically, then I feel better all the way around.
There are days when I don't think the bad feelings will end. Sure, I get discouraged and I will feel down. On those days, something my mother always used to tell me when I was younger, comes to mind and today, I try to remember it and live by it....the quote is simple, but for me, powerful. It is...."And this too will pass." When I feel like the pain is awful, or I'm having a bad neurological symptom day, I say that quote over and over in my mind and remind myself, that tomorrow will be a better day...."And this too, will pass."
A couple of years ago I wrote my story. I wanted to tell my story of what I went through and where I was today. My book was published and just came out this past October - it is called, "It's all in Your Head." It is now available through the publisher...Tate Publishing.com, on Amazon.com, through Barnes and Noble, and other places where books are sold.
If you or someone you know has ever dealt with a chronic medical condition, whether it be neurological, has had brain surgery, a Chiari Malformation, anything....it is a book that will inspire and help you to realize that you too, can get through what you are going through. Even if you haven't lived with a chronic medical condition....it's a good read. At least that is what I have been told, and keep hearing.
For anyone living with Chiari and you feel alone...know that you are not. There are many others out there who totally understand what you live with, and are going through, and we will all band together and comfort each other. If only through a blog.
I not only live with a very large brain cyst; I live with a significant Chiari Malformation as well. And, to add insult to injury, I also have brain sagging - my brain literally fell away from the cortex and sags downward. While many people are born with their Chiari Malformation, known as congenital Chiari, mine was acquired - meaning that it developed later in life and due to another reason.
My Chiari developed from the shunt that I have, over-draining and causing my brain to sag. When the brain sagged, my brain stem herniated into the spine. Mine is a significant Chiari of approximately 8mm, and is very symptomatic for me.
I have lived for over 5 years with my Chiari. I was 38 years old when I developed my Chiari and I was diagnosed with an MRI. There was no mistake in the diagnosis. It is a significant herniation of approximately 8mm, and is very symptomatic for me. The doctors told me that just by my symptoms alone, they knew I had a Chiari. They didn't even need the MRI - but the MRI confirmed it.
I was told that I may need to have the Chiari surgery one day. If my symptoms continued to stay bad for me or get worse, then surgery may be the route I would have to take. As of yet, I haven't had it, and mainly due to the fact that my brain is sagging. Most neurosurgeons I've seen have told me they are afraid to touch my case because they are afraid they'll make the sagging worse. They have all recommended I go to the Chiari Institute in New York, claiming they would be the ones to know if I can be helped. But I just haven't been able to muster the nerve, the strength, or the financial resources to go and to look into it. So as of now, I am not a "Zipperhead." Only a "Zipperhead" from the two brain surgeries I've already had, but not the Chiari surgery.
As far as treatment for my symptoms, I mostly try relaxation treatments. Sometimes I may have to lie down, or do deep breathing in order to help control the pain, but I have not sought outside treatments for my pain and symptoms. I do not take strong painkillers - I can't, due to all my neurological problems. Basically all I can take for pain is Tylenol or Motrin, and sometimes, an occasional portion of an Ativan. I have to be very careful with medications like Ativan, because my neurological system does not handle medicines well today. Regular exercise does tend to help my particular condition most days, but even with that, I have to be careful not to overdo it, because that can cause my problems and symptoms to be worse.
My most odd symptom, that I still have bouts with today, is that I cannot sleep on my left side or back....only my right side. I can lay on my back or left side, but to fall asleep on those sides is horrible. After I'm asleep, while on those sides, I will usually wake up to the feeling that my brain is being wrung out. I get extremely dizzy, feel nauseous, and can hardly stand or walk - I am very weak. It is frightening. There is talk that I may be having nocturnal seizures now, and my doctor is looking into getting a sleep study done, and I'm due for another MRI. So I have no idea what it could be. I have plenty of symptoms related to my Chiari, but that is, to date, my most annoying, frightening, and bizarre.
Living with Chiari is hard to explain to others. Even family members don't understand. If I could get friends and family members to understand Chiari and just one thing even, it would be that Chiari is very unpredictable. People tend to think that because you seemed normal or good one day, that if you have a bad day the next, you are either making it up, exaggerating, or being a baby. I'd like people to understand that you have no control over how things will be for you; day-to-day, hour-to-hour, minute-to-minute. If they think your up's and down's are frustrating for them because they cannot plan something with you, or they see you as "fine" one day and the next, you are a wreck....how do they think you feel about it?
Attitude does play a big role in how I feel. I have had a lot of ups and downs with my frame of mind and attitude. One of the biggest things for me that helps keep me sane and in a pretty good frame of mind, is exercise, as I mentioned earlier. The natural endorphins that flow with exercise can be like a drug. They are a natural mood enhancer. They not only help with keeping me in a good frame of mind, but help with pain as well....unless I overdo it. When I feel better about my body physically, then I feel better all the way around.
There are days when I don't think the bad feelings will end. Sure, I get discouraged and I will feel down. On those days, something my mother always used to tell me when I was younger, comes to mind and today, I try to remember it and live by it....the quote is simple, but for me, powerful. It is...."And this too will pass." When I feel like the pain is awful, or I'm having a bad neurological symptom day, I say that quote over and over in my mind and remind myself, that tomorrow will be a better day...."And this too, will pass."
A couple of years ago I wrote my story. I wanted to tell my story of what I went through and where I was today. My book was published and just came out this past October - it is called, "It's all in Your Head." It is now available through the publisher...Tate Publishing.com, on Amazon.com, through Barnes and Noble, and other places where books are sold.
If you or someone you know has ever dealt with a chronic medical condition, whether it be neurological, has had brain surgery, a Chiari Malformation, anything....it is a book that will inspire and help you to realize that you too, can get through what you are going through. Even if you haven't lived with a chronic medical condition....it's a good read. At least that is what I have been told, and keep hearing.
For anyone living with Chiari and you feel alone...know that you are not. There are many others out there who totally understand what you live with, and are going through, and we will all band together and comfort each other. If only through a blog.
Saturday, January 7, 2012
It's all in Your Head
If you haven't seen my book yet....it was released in October and is now available to purchase on Amazon and through Barnes and Noble. My goal is to reach as many people as possible, in hopes that not only my story will help and inspire those going through any medical issue - but particularly brain cysts and brain issues.
So check it out....for you or for someone you know who think could benefit from someone else's experience in "dealing".....dealing with doctors, pain and suffering, and life.
I hope you will find it inspiring and find it in yourself to never give up!
http://www.amazon.com/s/ref=nb_sb_ss_i_0_12?url=search-alias%3Dstripbooks&field-keywords=maria+mccutchen+it%27s+all+in+your+head&sprefix=maria+mccutc
So check it out....for you or for someone you know who think could benefit from someone else's experience in "dealing".....dealing with doctors, pain and suffering, and life.
I hope you will find it inspiring and find it in yourself to never give up!
http://www.amazon.com/s/ref=nb_sb_ss_i_0_12?url=search-alias%3Dstripbooks&field-keywords=maria+mccutchen+it%27s+all+in+your+head&sprefix=maria+mccutc
Friday, January 6, 2012
Don't Give Up!
Boy is it frustrating when you don't feel well, you have medical problems and no one seems to be able to figure it out! You want to give up!
It plays out as: you go to the doctor with a medical problem and they either cannot find the problem or they tell you that what they have found, "shouldn't be causing you problems." They tell you that your problem isn't really a problem....essentially. Boy that is frustrating. Especially if you know that it is the cause of your symptoms. You just know, in your heart of hearts, that the diagnosis you've been given is the root of all your symptoms. But your doctor(s) keep telling you that your diagnosis shouldn't be causing your symptoms. And in that case, good luck convincing your doctor.
That was exactly what I had to deal with when my cyst was diagnosed - my brain cyst. Doctors just kept telling me that my symptoms shouldn't be, and weren't being caused by my cyst. I was essentially being told to "get over it." I was told that my type of cyst is normally asymptomatic and shouldn't be causing my problems. Hmmmmm! A gigantic water balloon on my brain and none of the neurological symptoms I was experiencing were being caused by the large water balloon. It made no sense.
For months, as I continued to go downhill and developed one frightening symptom after another, I begged for help. When help didn't come, I had to take matters, and my health, into my own hands. I got second opinions, I read about brain cysts online....as much information I could find about them anyways. I read about the brain in general....what the different parts are responsible for. And I began to put two-and-two together, and what I determined was that yes! My brain cyst was the problem and now, I just had to get a doctor to believe me and one that understood these brain cysts better than other doctors. Better than the doctors who had examined me so far. So I put my investigative hat on and found a doctor in Arizona who was very well informed on brain cysts - very knowledgeable.
He operated, fenestrating my cyst first, then 4 months later inserting a shunt. Everything was going well, until that fateful day when I met the doctor who would cause me more problems than what I started with. Another disbelieving, non-trusting and finger-pointing doctor. I will share that part of the story in my next post.....what this guy caused for me. But I wasn't going to give up....I never did. I almost did and there was a day when I seriously considered ending it all, but in the end, I fought to get the help and care I knew I needed.
It plays out as: you go to the doctor with a medical problem and they either cannot find the problem or they tell you that what they have found, "shouldn't be causing you problems." They tell you that your problem isn't really a problem....essentially. Boy that is frustrating. Especially if you know that it is the cause of your symptoms. You just know, in your heart of hearts, that the diagnosis you've been given is the root of all your symptoms. But your doctor(s) keep telling you that your diagnosis shouldn't be causing your symptoms. And in that case, good luck convincing your doctor.
That was exactly what I had to deal with when my cyst was diagnosed - my brain cyst. Doctors just kept telling me that my symptoms shouldn't be, and weren't being caused by my cyst. I was essentially being told to "get over it." I was told that my type of cyst is normally asymptomatic and shouldn't be causing my problems. Hmmmmm! A gigantic water balloon on my brain and none of the neurological symptoms I was experiencing were being caused by the large water balloon. It made no sense.
For months, as I continued to go downhill and developed one frightening symptom after another, I begged for help. When help didn't come, I had to take matters, and my health, into my own hands. I got second opinions, I read about brain cysts online....as much information I could find about them anyways. I read about the brain in general....what the different parts are responsible for. And I began to put two-and-two together, and what I determined was that yes! My brain cyst was the problem and now, I just had to get a doctor to believe me and one that understood these brain cysts better than other doctors. Better than the doctors who had examined me so far. So I put my investigative hat on and found a doctor in Arizona who was very well informed on brain cysts - very knowledgeable.
He operated, fenestrating my cyst first, then 4 months later inserting a shunt. Everything was going well, until that fateful day when I met the doctor who would cause me more problems than what I started with. Another disbelieving, non-trusting and finger-pointing doctor. I will share that part of the story in my next post.....what this guy caused for me. But I wasn't going to give up....I never did. I almost did and there was a day when I seriously considered ending it all, but in the end, I fought to get the help and care I knew I needed.
Sunday, January 1, 2012
Journaling for Your Doctor
When we see our physician because we don't feel good, or we feel something is wrong, we have faith in our physician that he is not only going to listen to us, but believe us. Butting heads with your physician, or feeling that you have to convince him there is something wrong, can be stressful. It can add to your problems of not feeling well or possibly make your condition worse. You need your physician to be on your side and trust you. You want to trust him. And you want to feel that you and your doctor are a team when it comes to your health.
There is something you can do to help doctors understand you, and to show him that you do know what you are talking about. By following this step, you can go into your doctor with confidence to discuss your health. You will be organized and have your facts straight.
The most important thing you can do to help your doctor understand what is happening is to keep a journal. You should always journal your symptoms. By keeping careful note of everything to do with your symptoms, you will know what to tell him when you see him. He will have everything written down so that he can refer back to it and see if there is a pattern. You will be more organized and he is more likely to take you serious if you know the pattern of your symptoms and have a record.
Things you should journal are:
There is something you can do to help doctors understand you, and to show him that you do know what you are talking about. By following this step, you can go into your doctor with confidence to discuss your health. You will be organized and have your facts straight.
The most important thing you can do to help your doctor understand what is happening is to keep a journal. You should always journal your symptoms. By keeping careful note of everything to do with your symptoms, you will know what to tell him when you see him. He will have everything written down so that he can refer back to it and see if there is a pattern. You will be more organized and he is more likely to take you serious if you know the pattern of your symptoms and have a record.
Things you should journal are:
- Date and time - Make sure to note the date, day of the week, and time of day the symptoms happened.
- What you were doing when it happened - This can be important because it will show if there is a pattern; for instance, does it always happen at the same time of day? Does it always happen during certain activities? Does it seem to be sporadic in nature? Make sure to note everything about your activity at the time of the symptom or problem arising. Were you sleeping, jogging, doing dishes, driving, or sitting at the computer? Whatever it is, write it down.
- How long did it last? - Try to notice how long the symptom lasted. Get used to wearing a watch or notice the time when the symptom(s) started and when it stopped. Write it down right away so as not to forget it. If you are not always used to wearing a watch, try to start so that you always have a way to monitor the duration. It could be a big difference in saying that it lasted a long time, when in reality it was 60 seconds.
- Diet - There are a few things you should journal about eating. First, note if you were eating at the time your symptoms happened, or how long before or after each meal. For instance, if it happened before you ate, how long before you ate? Or was it after you ate? If so, how long after? Did eating make you feel better or worse? Then, keep a separate record of your actual diet; such as, times you eat, and what you eat. Your diet may have an affect on your symptoms, so to note the details, may help your doctor. This should include all fluid intake during the day as well. Note all the fluid you drank during the day: what you drank, the time you drank, and how much you drank.
- How much sleep are you getting? - Keep record of your sleep pattern. Maybe your sleep pattern is affecting your symptoms; whether it be that your sleep pattern is causing your symptoms, or the symptoms are changing your sleep pattern.
Tuesday, July 12, 2011
Should I Have surgery, or Shouldn't I?
Ok, so it has been over five years since I was diagnosed with brain sagging and my Chiari. I have been putting getting it corrected for so long, but now, I no longer feel that that is an option. I am at the point where I feel like I "have" to get it done. I just hope that I didn't wait too long.
This fall, I plan on making a trip to New York to the Chiari Institute to see if anyone there can help me. I know there have been changes over the years; I see them, I feel them. My balance, as I've mentioned before, has really gotten bad. I have seen a difference in my vision, my dizziness and more. And the "more", is annoying.
I know I have to do this soon....now, or there may be no chance at all of them fixing these or helping these issues. I was told a long time ago, that the longer I wait, the less chance there is in making things better....making a difference for me. I don't remember what that window of opportunity was, but I hope I haven't missed it.
I am going to start being better about posting on my blog. Especially as I start back to seeing doctors for these issues. With my very bitter divorce last year, I really didn't go to the doctor. I was already so burnt out on the whole "doctor, MRI and everything that goes with it" scene, that adding a divorce to my life just seemed like too much. So I avoided going. I was simply unable to muster the energy to take care of things with "me" like I used to.
I am keeping my fingers crossed that they can help me. I am also keeping my fingers crossed that if I go through surgery - this major surgery, that it will make a world of difference for me and it will not have been in vain.
Fingers crossed!
This fall, I plan on making a trip to New York to the Chiari Institute to see if anyone there can help me. I know there have been changes over the years; I see them, I feel them. My balance, as I've mentioned before, has really gotten bad. I have seen a difference in my vision, my dizziness and more. And the "more", is annoying.
I know I have to do this soon....now, or there may be no chance at all of them fixing these or helping these issues. I was told a long time ago, that the longer I wait, the less chance there is in making things better....making a difference for me. I don't remember what that window of opportunity was, but I hope I haven't missed it.
I am going to start being better about posting on my blog. Especially as I start back to seeing doctors for these issues. With my very bitter divorce last year, I really didn't go to the doctor. I was already so burnt out on the whole "doctor, MRI and everything that goes with it" scene, that adding a divorce to my life just seemed like too much. So I avoided going. I was simply unable to muster the energy to take care of things with "me" like I used to.
I am keeping my fingers crossed that they can help me. I am also keeping my fingers crossed that if I go through surgery - this major surgery, that it will make a world of difference for me and it will not have been in vain.
Fingers crossed!
Saturday, June 18, 2011
Sorry for the Delay.....
I am sorry for not posting in a long while. There has been a lot going on over the months and I have been very busy, as well as, the "busy" wipes me out and can make me not feel so great.
I have been busy with my book, for one. It's getting close to time to get my book off to print and on to marketing, which I will be playing a big role. I have also recently gone through a move, packing up a house and then unpacking and getting settled in my new home.
With having a Chiari, even though it has been approximately 5 years now, one thing that I have never gotten accustomed to is how tired I can get. I get tired quickly and easily. I am always running out of energy and steam.
Another thing that is really tough to deal with is the lack of balance. I absolutely cannot stand that symptom. That is one thing that I had to deal with, when I just had my Charcot-Marie-Tooth, and here I thought it was annoying back then. Then I get a Chiari Malformation and my balance is no longer just a little annoying, it is non-existant now. I think sometimes, "How incredibly stupid of me to have been so picky about the little balance imperfections before." Now, I can hardly walk straight-up some days. Now, one little mis-step and I am wobble-city. I have to concentrate so hard some days, just to stay up on my own two feet. And as bad as I thought it was back in 2007, '08, etc., now, in 2011 there is a marked difference in its progression. Some days I don't even want to get off my couch much and do anything that's going to need me to walk too far, or have to use my balance. It frightens me.
When I picture myself in about 5 years from now, I sometimes envision myself with a cane or something that will help me walk with better balance, and that not only frightens me, but saddens me.
I try, most days, to just block it all out of my mind. I try to "pretend" for lack of a better word, that it is not as bad as it is. I don't want to think about it. I don't want to deal with it. But on the days that I'm willing to confront reality, I know that having to deal with it is just around the corner.
I have been busy with my book, for one. It's getting close to time to get my book off to print and on to marketing, which I will be playing a big role. I have also recently gone through a move, packing up a house and then unpacking and getting settled in my new home.
With having a Chiari, even though it has been approximately 5 years now, one thing that I have never gotten accustomed to is how tired I can get. I get tired quickly and easily. I am always running out of energy and steam.
Another thing that is really tough to deal with is the lack of balance. I absolutely cannot stand that symptom. That is one thing that I had to deal with, when I just had my Charcot-Marie-Tooth, and here I thought it was annoying back then. Then I get a Chiari Malformation and my balance is no longer just a little annoying, it is non-existant now. I think sometimes, "How incredibly stupid of me to have been so picky about the little balance imperfections before." Now, I can hardly walk straight-up some days. Now, one little mis-step and I am wobble-city. I have to concentrate so hard some days, just to stay up on my own two feet. And as bad as I thought it was back in 2007, '08, etc., now, in 2011 there is a marked difference in its progression. Some days I don't even want to get off my couch much and do anything that's going to need me to walk too far, or have to use my balance. It frightens me.
When I picture myself in about 5 years from now, I sometimes envision myself with a cane or something that will help me walk with better balance, and that not only frightens me, but saddens me.
I try, most days, to just block it all out of my mind. I try to "pretend" for lack of a better word, that it is not as bad as it is. I don't want to think about it. I don't want to deal with it. But on the days that I'm willing to confront reality, I know that having to deal with it is just around the corner.
Tuesday, April 26, 2011
Losing Me
There are days when I can't find a hint of my old self in me. I will look in the mirror, and even there, the picture I see is of someone new; someone different than the girl I grew up with. I hardly recognize myself at all.
There are days that not only do I not feel like I "look" like my old self, but do not feel like my old self either. I used to be so vibrant, care free and full of energy. I also had "feelings;" normal feelings that normal people felt. At appropriate times I would feel happy, sad, excited, depressed, and everything in between. I would consider my feelings to be very normal and appropriate. Now, today, my emotions are hardly what I would consider normal at all. I have found that over the past few years, the cyst has robbed me of my emotions. Slowly but surely I have felt my affect change from what I would consider normal reactions, to abnormal.
What I mean is that something that may have happened in my life years ago; pre-cyst days, would have made me laugh or smile....or feel elated. Today, something fantastic can happen and I will have virtually no reaction at all. It's as if my brain is void of all emotion. The joy I should be feeling, the joy I "know" I should be feeling, is anything but there. I will have to force myself to put on a smile, or laugh or be cheerful; whether it is for my kids or other people. It doesn't feel like a natural reaction to me anymore. And I will always.....always catch it, and it will always baffle me or make me think....."why did that not make me genuinely happy? Or why did I not laugh at that? The old me would have found that hilarious and I would have laughed so hard at that."
It is a strange sensation. I don't feel like there is anyone inside at times. Like I am just a body taking up space and consuming air. But my personality is nothing close to what it was pre-cyst days. It's as if, when I had my brain surgery years ago, that part of my brain was nicked, or removed altogether. I am not sure either, if it is truly physical or if it is more emotional than anything. I am going to do some research into it.....speak to my doctor about it and get his opinion and I will let you know. I have tried not to worry over the past couple of years as I've felt this emotional side of me slip further and further away, but it has actually gotten continually worse over the past, two years, to the point where I feel like I may wind up just a shell of who I was years ago and I can't do that to my boys. I want my boys to get the "real" me. I want to continue to be the mom I was years ago, that they were too small to really know. I want to laugh and have fun with them....enjoy life, and now, I find virtually no enjoyment in anything anymore.
I will post my findings, if there are any. I am hoping it is all just emotional....possibly stress after going through a very tough year with my health and divorce. I am hopeful that it isn't anything physical; such as the cyst putting pressure on an area of the brain that controls emotions. I just couldn't even begin to guess. And I hope my doctor doesn't have to guess either.
I have had to lose a lot of things in life due to this cyst, but the one thing I am not prepared for, is to "lose me!"
There are days that not only do I not feel like I "look" like my old self, but do not feel like my old self either. I used to be so vibrant, care free and full of energy. I also had "feelings;" normal feelings that normal people felt. At appropriate times I would feel happy, sad, excited, depressed, and everything in between. I would consider my feelings to be very normal and appropriate. Now, today, my emotions are hardly what I would consider normal at all. I have found that over the past few years, the cyst has robbed me of my emotions. Slowly but surely I have felt my affect change from what I would consider normal reactions, to abnormal.
What I mean is that something that may have happened in my life years ago; pre-cyst days, would have made me laugh or smile....or feel elated. Today, something fantastic can happen and I will have virtually no reaction at all. It's as if my brain is void of all emotion. The joy I should be feeling, the joy I "know" I should be feeling, is anything but there. I will have to force myself to put on a smile, or laugh or be cheerful; whether it is for my kids or other people. It doesn't feel like a natural reaction to me anymore. And I will always.....always catch it, and it will always baffle me or make me think....."why did that not make me genuinely happy? Or why did I not laugh at that? The old me would have found that hilarious and I would have laughed so hard at that."
It is a strange sensation. I don't feel like there is anyone inside at times. Like I am just a body taking up space and consuming air. But my personality is nothing close to what it was pre-cyst days. It's as if, when I had my brain surgery years ago, that part of my brain was nicked, or removed altogether. I am not sure either, if it is truly physical or if it is more emotional than anything. I am going to do some research into it.....speak to my doctor about it and get his opinion and I will let you know. I have tried not to worry over the past couple of years as I've felt this emotional side of me slip further and further away, but it has actually gotten continually worse over the past, two years, to the point where I feel like I may wind up just a shell of who I was years ago and I can't do that to my boys. I want my boys to get the "real" me. I want to continue to be the mom I was years ago, that they were too small to really know. I want to laugh and have fun with them....enjoy life, and now, I find virtually no enjoyment in anything anymore.
I will post my findings, if there are any. I am hoping it is all just emotional....possibly stress after going through a very tough year with my health and divorce. I am hopeful that it isn't anything physical; such as the cyst putting pressure on an area of the brain that controls emotions. I just couldn't even begin to guess. And I hope my doctor doesn't have to guess either.
I have had to lose a lot of things in life due to this cyst, but the one thing I am not prepared for, is to "lose me!"
Wednesday, March 2, 2011
The Motrin Meltdown
Living with a chiari malformation as well as with brain sagging, is not always a pleasant experience. Both conditions, in their own right, are painful and cause headaches and uncomfortable feelings in the head. When I was first diagnosed with both conditions back in 2006, I was given a prescription for Naproxen; an anti-inflammatory that is a little stronger than motrin. I was told this would help ease the pain and keep any inflammation down that may also cause pain. I was given the lower dose of 250mg, rather than the stronger of 500mg, but told that if I needed to take 500mg every so often, that was fine....just take two 250's.
The Naproxen worked pretty well for me. I would wake up in the morning and after lying down all night, now my brain was wanting to sag since I was upright now and that caused a pretty good amount of pain, aches and discomfort. So, I would pop a Naproxen in the morning, and within a half hour, most of the discomfort was gone. Evenings were the same thing; as the day wore on, my brain would sag a little more, tugging on all the nerves and vessels and I would be in pain by late afternoon or evening. So, again, I'd take a Naproxen and within half an hour I usually felt better.
The doctors were optomistic that over time my brain would make its way back up to where it was supposed to be, unfortunately, that would not be the case. My shunt had been adjusted to keep more fluid around the brain and this is what was supposed to help "float my brain up." But over time I learned that this would not be the case. Despite months of having more fluid around the brain, my brain continued to sag, and my chiari remained. Unfortunately, this meant so did the pain and discomfort. "Sure, you can take the Naproxen longterm," my doctor assured me when I realized that this may very well just be my life, popping a pill to help with the pain and discomfort. "Just try to use it only when you have to," which for me, was every day.
After a while, paying for the prescription every month got to be expensive, so I had an idea....if Naproxen is just a "stronger Motrin," why not just switch to Motrin? I could get a big bottle of Motrin that would last more than twice as long, and cost much less. So, without much further thought or even any research into Motrin and it's longterm use, that is what I opted to do.
I'm usually really anal about researching things. I want to know everything about everything before I agree to it, accept it, or try it. This time, I had convinced myself that it was harmless and because I had not been having any problems with the Naproxen, I figured that Motrin must be just the same....benign. I did already know; however, that Motrin is hard on the stomach - so take it with food. And it can be hard on the kidneys and liver. I made sure to take it with food and always drank plenty of fluids.
I suppose I should have done better homework on the subject and looked into "long term motrin use," myself, because as things slowly started to turn for me, I totally did not even correlate anything of what I started to experience, with something as simple as Motrin.
It was a slow and gradual turn; neurological issues that of course, I blamed on my chiari, my brain cyst and my neurological issues. My balance started getting worse...I was wanting to tip over all the time. Bending over became not only something I dreaded, but something I avoided. My vision started changing; I was seeing double a lot and even saw an opthomolgist and was ordered glasses - one lens with a prism to hold my vision straight. My right eyelid had begun to droop more, I had weird and unnerving symptoms at night - my head felt strange, terrible dizziness lying on my back or left side, even excessive dizziness during the day. I also began having long runs of insomnia. I was tired through the day and started to need naps. I thought it was all because I wasn't sleeping great at night. But eventutally, being tired turned into; "I had to sleep." I'm not a nap person by nature, but by now, naps were part of my routine, and many times 2 or 3 naps a day. Then, to top it off, I would be exhausted by 8:00, barely able to stay awake to get my kids to bed. I was miserable to say the least, and still, I blamed it on the gradual decline of my chiari, brain sagging and stress. You see, I am going through a very hairy and bitter divorce. It's stressful, and stress can take a lot out of you and cause some pretty wild symptoms, so who was I to say that it wasn't all that I've mentioned. My stress was aggravating all my other issues. But then, one day....for whatever reason, I decided not to take my Motrin. I thought I'd see if I could handle the discomfort without anything. That day, as the day wore on, I felt better than I had in a long while. So the next morning, just beginning to question if it all could be the Motrin, since I knew that was the only thing I'd done different was to not take it, I didn't take it again all day and by the third morning, I felt more like my old self than I had in....well, I couldn't remember when. My eyelid was even more perky than I'd seen it in a while, hardly drooping at all! Hmmmm!
Immediately I got online and started looking up longterm use of Motrin and side effects, and there it was....my answer! Everything that I have just mentioned is listed; double vision and visual disturbances, weakness, balance problems, insomnia, dizziness, everything! Oh my gosh, I was killing myself with Motrin! An innocent, over-the-counter medication that turned out to be "not-so-innocent" for me. It was a lot more potent and dangerous (for me) than I would have ever guessed.
I have been off the Motrin for over a week now, and although I still have some issues, they are much less and minimal compared to....and I would say "are" related to the chiari and brain sagging. This is what I "should" be feeling and dealing with with a sagging brain and chiari malformation, and not all the added neurological and other medical issues.
My warning to anyone would be to do your homework on everything. There is so much information at our fingertips now, and now there is no excuse not to look things up, read about it and learn. I wish I had, a lot sooner....a long time ago. Because if I had, I would have saved myself the trouble of trying to fight to figure out what was wrong with me for several years now. I could have been living, rather than sinking into a deep, dark hole. But I know now, and that is what is important. I cannot go back, so I will go forward and make sure I always reasearch everything, especially when it has to do with medications. Now, I just try to muddle through some of the pain and uncomfortable feelings. I pop a single Tylenol when I have to have anything and do not take them daily. I am finding out how to relax the pain away, taking a few minutes to lie down to help it relieve itself, but not taking Motrin! No matter how benign and harmless you may think something is, do your homework. Ask your doctor questions....learn from my experience!
The Naproxen worked pretty well for me. I would wake up in the morning and after lying down all night, now my brain was wanting to sag since I was upright now and that caused a pretty good amount of pain, aches and discomfort. So, I would pop a Naproxen in the morning, and within a half hour, most of the discomfort was gone. Evenings were the same thing; as the day wore on, my brain would sag a little more, tugging on all the nerves and vessels and I would be in pain by late afternoon or evening. So, again, I'd take a Naproxen and within half an hour I usually felt better.
The doctors were optomistic that over time my brain would make its way back up to where it was supposed to be, unfortunately, that would not be the case. My shunt had been adjusted to keep more fluid around the brain and this is what was supposed to help "float my brain up." But over time I learned that this would not be the case. Despite months of having more fluid around the brain, my brain continued to sag, and my chiari remained. Unfortunately, this meant so did the pain and discomfort. "Sure, you can take the Naproxen longterm," my doctor assured me when I realized that this may very well just be my life, popping a pill to help with the pain and discomfort. "Just try to use it only when you have to," which for me, was every day.
After a while, paying for the prescription every month got to be expensive, so I had an idea....if Naproxen is just a "stronger Motrin," why not just switch to Motrin? I could get a big bottle of Motrin that would last more than twice as long, and cost much less. So, without much further thought or even any research into Motrin and it's longterm use, that is what I opted to do.
I'm usually really anal about researching things. I want to know everything about everything before I agree to it, accept it, or try it. This time, I had convinced myself that it was harmless and because I had not been having any problems with the Naproxen, I figured that Motrin must be just the same....benign. I did already know; however, that Motrin is hard on the stomach - so take it with food. And it can be hard on the kidneys and liver. I made sure to take it with food and always drank plenty of fluids.
I suppose I should have done better homework on the subject and looked into "long term motrin use," myself, because as things slowly started to turn for me, I totally did not even correlate anything of what I started to experience, with something as simple as Motrin.
It was a slow and gradual turn; neurological issues that of course, I blamed on my chiari, my brain cyst and my neurological issues. My balance started getting worse...I was wanting to tip over all the time. Bending over became not only something I dreaded, but something I avoided. My vision started changing; I was seeing double a lot and even saw an opthomolgist and was ordered glasses - one lens with a prism to hold my vision straight. My right eyelid had begun to droop more, I had weird and unnerving symptoms at night - my head felt strange, terrible dizziness lying on my back or left side, even excessive dizziness during the day. I also began having long runs of insomnia. I was tired through the day and started to need naps. I thought it was all because I wasn't sleeping great at night. But eventutally, being tired turned into; "I had to sleep." I'm not a nap person by nature, but by now, naps were part of my routine, and many times 2 or 3 naps a day. Then, to top it off, I would be exhausted by 8:00, barely able to stay awake to get my kids to bed. I was miserable to say the least, and still, I blamed it on the gradual decline of my chiari, brain sagging and stress. You see, I am going through a very hairy and bitter divorce. It's stressful, and stress can take a lot out of you and cause some pretty wild symptoms, so who was I to say that it wasn't all that I've mentioned. My stress was aggravating all my other issues. But then, one day....for whatever reason, I decided not to take my Motrin. I thought I'd see if I could handle the discomfort without anything. That day, as the day wore on, I felt better than I had in a long while. So the next morning, just beginning to question if it all could be the Motrin, since I knew that was the only thing I'd done different was to not take it, I didn't take it again all day and by the third morning, I felt more like my old self than I had in....well, I couldn't remember when. My eyelid was even more perky than I'd seen it in a while, hardly drooping at all! Hmmmm!
Immediately I got online and started looking up longterm use of Motrin and side effects, and there it was....my answer! Everything that I have just mentioned is listed; double vision and visual disturbances, weakness, balance problems, insomnia, dizziness, everything! Oh my gosh, I was killing myself with Motrin! An innocent, over-the-counter medication that turned out to be "not-so-innocent" for me. It was a lot more potent and dangerous (for me) than I would have ever guessed.
I have been off the Motrin for over a week now, and although I still have some issues, they are much less and minimal compared to....and I would say "are" related to the chiari and brain sagging. This is what I "should" be feeling and dealing with with a sagging brain and chiari malformation, and not all the added neurological and other medical issues.
My warning to anyone would be to do your homework on everything. There is so much information at our fingertips now, and now there is no excuse not to look things up, read about it and learn. I wish I had, a lot sooner....a long time ago. Because if I had, I would have saved myself the trouble of trying to fight to figure out what was wrong with me for several years now. I could have been living, rather than sinking into a deep, dark hole. But I know now, and that is what is important. I cannot go back, so I will go forward and make sure I always reasearch everything, especially when it has to do with medications. Now, I just try to muddle through some of the pain and uncomfortable feelings. I pop a single Tylenol when I have to have anything and do not take them daily. I am finding out how to relax the pain away, taking a few minutes to lie down to help it relieve itself, but not taking Motrin! No matter how benign and harmless you may think something is, do your homework. Ask your doctor questions....learn from my experience!
Saturday, February 12, 2011
My Book! "It's all in Your Head!"
Great news! My book, titled, "It's all in Your Head," is due out this year! This is my story of what I went through with my arachnoid cyst. In this book you will follow my journey of what I lived through in trying to get medical attention for my brain cyst. You'll read about the ups and downs of my journey to get treatment, the treatment I received, and the obstacles I had to overcome to regain my health and life.
My goals in writing this book, were to not only tell my story, but to encourage others who are going through similar situations; to never give up.
I will keep my readers updated on its release. As of now, it is set to be out for presales in the late summer and on the shelves in the early fall, 2011. So if you, or someone you know is dealing with any medical condition; whether it be a brain cyst or other condition, I hope that my story will help others and encourage them to never give up!
I am going to try to make the book available to order through my site. I will also keep you updated on that as well.
My goals in writing this book, were to not only tell my story, but to encourage others who are going through similar situations; to never give up.
I will keep my readers updated on its release. As of now, it is set to be out for presales in the late summer and on the shelves in the early fall, 2011. So if you, or someone you know is dealing with any medical condition; whether it be a brain cyst or other condition, I hope that my story will help others and encourage them to never give up!
I am going to try to make the book available to order through my site. I will also keep you updated on that as well.
Thursday, February 10, 2011
Symptom Checks
Strange symptoms can be unnerving. When you live with a chronic medical condition, it can be a frightening way to live. You are always on "alert" with what could go wrong next and that is really "no" way to live. But the truth-of-the-matter is, that is life.
With a chronic medical condition, it seems like there is always something new, some sort of symptom that is popping up. Just when you think you have sunk into a routine and things are ticking along; there's another strange symptom that you've never felt before, or had to deal with. Instantly you go on alert; "What was that?" "I've never felt that before." "Is that dangerous?" You begin to ask yourself a million questions and you instantly try to decipher where that pain or sensation came from. What caused it? And is it there to stay or just passing through? If it doesn't go away or happens often, then there's the infamous call to your doctor to get it checked.
It is a lot of work living with a chronic medical condition. You have to be on your A-game all the time. You don't want to take any chances and let a symptom slip by that could have been caught before it lead to bigger and more complicated problems.
One of the best ways to make sure you didn't miss anything, is by keeping a diary. And keep it handy. If you are a woman, carry a little notebook that fits easily in your purse. For a guy, you can get a little book that slides easily into your back pocket. Write everything down when you get a strange feeling or develop a new symptom.
Document things such as:
Like your automobile, you need to stay on top of your body and how it works. Is it time consuming? At times. But it is important in order to keep your doctor updated and informed on your progress and problems. It is also important to help give you reassurance. If you do not know how to describe your problems or concerns to your doctor, he will be unable to give you answers that will help put your mind at ease.
With a chronic medical condition, it seems like there is always something new, some sort of symptom that is popping up. Just when you think you have sunk into a routine and things are ticking along; there's another strange symptom that you've never felt before, or had to deal with. Instantly you go on alert; "What was that?" "I've never felt that before." "Is that dangerous?" You begin to ask yourself a million questions and you instantly try to decipher where that pain or sensation came from. What caused it? And is it there to stay or just passing through? If it doesn't go away or happens often, then there's the infamous call to your doctor to get it checked.
It is a lot of work living with a chronic medical condition. You have to be on your A-game all the time. You don't want to take any chances and let a symptom slip by that could have been caught before it lead to bigger and more complicated problems.
One of the best ways to make sure you didn't miss anything, is by keeping a diary. And keep it handy. If you are a woman, carry a little notebook that fits easily in your purse. For a guy, you can get a little book that slides easily into your back pocket. Write everything down when you get a strange feeling or develop a new symptom.
Document things such as:
- The time.
- What you were doing when it happened?
- Was there pain involved and how much - describe it on a level of 1-10?
- Other symptoms that accompanied the original symptom, such as; did you feel faint afterwards, develop a headache after the original sensation, nausea?
- How long did it last?
- Did it happen more than once?
Like your automobile, you need to stay on top of your body and how it works. Is it time consuming? At times. But it is important in order to keep your doctor updated and informed on your progress and problems. It is also important to help give you reassurance. If you do not know how to describe your problems or concerns to your doctor, he will be unable to give you answers that will help put your mind at ease.
Wednesday, January 12, 2011
Is my pressure back?
I never know what is what when it comes to my symptoms. That is what is so unnerving about being me. Like a car with a million problems, I am always having to check myself, "what was that I just felt," and "why did that just happen?" I have to do a quick run down of problems and symptom check daily. Many times I can figure it out, but not always. Like a problem that has developed this past year.
Several months ago I was sitting at my computer, late at night, and dozed off. What woke me was that I was getting a terrible twisting feeling in my brain, as if it were being wrung out like a rag, and then a horrible dizziness spread throughout my brain....a wicked dizziness that made me nauseas. I was confused, disoriented, and terrible weak and off balance. I tried to climb down from my tall kitchen chair and make my way upstairs to lie down. The symptoms lasted for at least half an hour, but finally subsided. It was frightening and unnerving. I couldn't figure that one out, no matter how hard I tried to think about what it could be. It would be the only time that happened for a few weeks - an isolated incident. Then, like I said, a few weeks later, there it was again....waking me up while I slept, the brain twisting, dizziness and nausea that ended with extreme weakness. I had no idea what this was, what was causing it, or how long it would last.
For months now, every now and again I get this. I also, over time, discovered that this happened primarily when I lied on my left side, so now, I have to sleep on my right side to ward these weird symptoms off. I have not had this newest development checked out yet by my doctor. When it doesn't happen for a while, I tend to put it out of my head...then, out of the blue, there it will be again.
I hope it isn't anything serious. My mother, a used-to-be-nurse, has mentioned nocturnal seizures. God, I hope not. I will keep a close watch on this for a while, and make notes of when it happens, and anything else I can think of to note to see if over time, I can find any common grounds as to what causes one episode and then another.
My car is obviously not in as good of shape as it was when I was younger. I have run out of warranties and now, I have to keep a close watch to make sure a major system doesn't go into failure.
Several months ago I was sitting at my computer, late at night, and dozed off. What woke me was that I was getting a terrible twisting feeling in my brain, as if it were being wrung out like a rag, and then a horrible dizziness spread throughout my brain....a wicked dizziness that made me nauseas. I was confused, disoriented, and terrible weak and off balance. I tried to climb down from my tall kitchen chair and make my way upstairs to lie down. The symptoms lasted for at least half an hour, but finally subsided. It was frightening and unnerving. I couldn't figure that one out, no matter how hard I tried to think about what it could be. It would be the only time that happened for a few weeks - an isolated incident. Then, like I said, a few weeks later, there it was again....waking me up while I slept, the brain twisting, dizziness and nausea that ended with extreme weakness. I had no idea what this was, what was causing it, or how long it would last.
For months now, every now and again I get this. I also, over time, discovered that this happened primarily when I lied on my left side, so now, I have to sleep on my right side to ward these weird symptoms off. I have not had this newest development checked out yet by my doctor. When it doesn't happen for a while, I tend to put it out of my head...then, out of the blue, there it will be again.
I hope it isn't anything serious. My mother, a used-to-be-nurse, has mentioned nocturnal seizures. God, I hope not. I will keep a close watch on this for a while, and make notes of when it happens, and anything else I can think of to note to see if over time, I can find any common grounds as to what causes one episode and then another.
My car is obviously not in as good of shape as it was when I was younger. I have run out of warranties and now, I have to keep a close watch to make sure a major system doesn't go into failure.
Saturday, December 18, 2010
Dizzy, dizzy, dizzy
Something strange has been happening for a while. I would say about the past 8 months, off and on, I have been having a very strange and un-nerving symptom. It is something that only happens at night; when I sleep...and only when I sleep on my back or my left side.
Like a car, I am always having a symptom that makes me stop, look and listen (listen to my body) to try and decipher what it was I just felt or heard or whatever. I get strange feelings and symptoms often. It has become a regular part of my life to stop and analyze what it was that I just felt, and "why" I may have just felt it. It can be frightening and annoying in the same aspect.
Several months ago, this odd problem began. It tall began one evening, late around 11:00. I was sitting at my computer and in pure exhaustion, had dozed off....sitting upright. I awoke to a strange feeling like my brain was twisting into a knot; starting at the bottom of the brain and working its way up. Once the twisting reached the top of the brain, an incredible dizziness came over me, spinning me as if I were in the teacups at Disney. It was frightening. I became extremely dizzy and weak, hardly able to lift an arm. Walking was almost out of the question....I stumbled and fell into the wall, trying to get upstairs to bed. My head was shaking uncontrollably like I had Parkinson's or something. I almost dialed 911.
When I finally made it to bed, most of the harnest symptoms subsiding, I finally dozed off with thoughts of "what the hell was that?" in my head. Later that evening, another episode happened, almost identical to the first. This went on for a few nights; but never during the day. Only when I slept, and would soon realize, only when I laid on ly left side or back....never my right side. So I avoided those positions.
Eventually, after about a week of this happening, the odd-nighttime symptoms subsided. I thought they were gone for good and chalked them up to being overtired or something. But they would return and I didn't know why. This has gone on throughout the the year, periodically returning for whatever unknown reason. I do not have any idea, or thoughts on why this happens, what initiates these episodes, or what makes them subside, when they finally do.
I thought they were nocturnal seizures. The dizziness, the shaking, the weakness and numbness. I suppose they could be and need to have this looked into because they are still happening....as a matter-of-fact, they are going on now....last night and the night before. I am anxious, as always, for them to pass. And until I have them looked at, I will have to go through my regular routine of bolting upright, grabbing my head to stop the spinning and hanging over the sink or toilet just waiting to be sick.
The joys of neurological problems.
Like a car, I am always having a symptom that makes me stop, look and listen (listen to my body) to try and decipher what it was I just felt or heard or whatever. I get strange feelings and symptoms often. It has become a regular part of my life to stop and analyze what it was that I just felt, and "why" I may have just felt it. It can be frightening and annoying in the same aspect.
Several months ago, this odd problem began. It tall began one evening, late around 11:00. I was sitting at my computer and in pure exhaustion, had dozed off....sitting upright. I awoke to a strange feeling like my brain was twisting into a knot; starting at the bottom of the brain and working its way up. Once the twisting reached the top of the brain, an incredible dizziness came over me, spinning me as if I were in the teacups at Disney. It was frightening. I became extremely dizzy and weak, hardly able to lift an arm. Walking was almost out of the question....I stumbled and fell into the wall, trying to get upstairs to bed. My head was shaking uncontrollably like I had Parkinson's or something. I almost dialed 911.
When I finally made it to bed, most of the harnest symptoms subsiding, I finally dozed off with thoughts of "what the hell was that?" in my head. Later that evening, another episode happened, almost identical to the first. This went on for a few nights; but never during the day. Only when I slept, and would soon realize, only when I laid on ly left side or back....never my right side. So I avoided those positions.
Eventually, after about a week of this happening, the odd-nighttime symptoms subsided. I thought they were gone for good and chalked them up to being overtired or something. But they would return and I didn't know why. This has gone on throughout the the year, periodically returning for whatever unknown reason. I do not have any idea, or thoughts on why this happens, what initiates these episodes, or what makes them subside, when they finally do.
I thought they were nocturnal seizures. The dizziness, the shaking, the weakness and numbness. I suppose they could be and need to have this looked into because they are still happening....as a matter-of-fact, they are going on now....last night and the night before. I am anxious, as always, for them to pass. And until I have them looked at, I will have to go through my regular routine of bolting upright, grabbing my head to stop the spinning and hanging over the sink or toilet just waiting to be sick.
The joys of neurological problems.
Thursday, May 20, 2010
Common Symptoms of an Arachnoid Cyst
There are an array of symptoms that you can have when you have an arachnoid cyst. It can depend where the cyst is located on the brain, as to what type of symptoms you have. However, there are some common symptoms; common to most cysts and they are:
- Headaches
- Dizziness
- Ataxia - lack of muscle control
- Increased Cranial Pressure- pressure in the head
- Hydrocephalus (water on the brain)
- Seizures
There are a number of other symptoms that can occur, and these listed symptoms can vary in degree of severity, depending on how large the cyst is and exactly where it is on the brain.
You may experience:
- Confusion
- Sleep apnea
- Breathing difficulties
- Problems with speech
- Nausea/vomiting
- Papilladema-swelling of the optic nerve due to pressure
- Trouble swallowing
You may have been diagnosed with the cyst at one point, and not have any symptoms. But if the cyst grows and begins to put pressure on different areas of the brain, you may begin to notice odd symptoms coming on. Typically, the symptoms creep up on you. You may not realize, at first, that anything is really wrong. But as the cyst grows and begins to put more pressure on the different organs of the brain, the symptoms will increase.
If you start to notice odd things happening - neurological symptoms, start writing them down. Now would be the time to start your journal and journal often. Keep records of all your symptoms, when you felt them, how frequent you feel them, and what you were doing when you felt it. Did you have trouble swallowing while eating? Or just sitting there doing nothing but swallowing saliva? Did you lose your balance just standing there? Or while doing an activity that might be common to cause loss of balance. Chart everything, and watch the pattern develop. This will not only be helpful for you, but your doctor.
Another reason you should keep record and write things down in a timely fashion, is because many people with arachnoid cysts, begin to start to forget things. Your short term memory can be affected. You may also forget how powerful the symptom was at the time, so you will want to chart it while everything about it is fresh in your mind.
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