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!
Tuesday, July 12, 2011
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.
Thursday, April 15, 2010
To Get Chiari Surgery or Not to Get Chiari Surgery
When I was diagnosed with a chiari malformation in October of '06 I was devastated. I knew exactly what that meant, that my brain stem had herniated into my spine. I was also aware of the symptoms that a chiari could bring and was already living with many. It was the reason I was almost falling down all the time, the reason I had such horrible nausea, and the reason my right eyelid was sagging. And I had excruciating pain on top of my head that felt like someone had taken a good shovel to my head. I was miserable. But at least I knew now. I now had a diagnosis, that for months I had to guess as to what was wrong with me.
My chiari was not one I was born with, a congenital chiari. It was an acquired chiari, meaning that it developed due to other reasons. And my reason was my shunt. For several months my shunt overdrained and caused me to lose precious cerebral spinal fluid. With that, my brain began to sag and the brain stem fell below the skull line and into the spinal column leaving me with unbearbale symptoms at times.
After living with this condition for nearly four years, I am done. My balance and dizziness drive me crazy. I am tired of feeling like I am on a boat all the time. So I am looking into corrective surgery to be done at the Chiari Institute in New York. I have been recommended the Institute by my neurosurgeon at Duke University. I will follow his recommendations and send the institute all my records and films and let them review my case to see if I am a candidate for the surgery. If not, I may just have to live like I have been and try to find a way to make peace with my body and my brain.
My chiari was not one I was born with, a congenital chiari. It was an acquired chiari, meaning that it developed due to other reasons. And my reason was my shunt. For several months my shunt overdrained and caused me to lose precious cerebral spinal fluid. With that, my brain began to sag and the brain stem fell below the skull line and into the spinal column leaving me with unbearbale symptoms at times.
After living with this condition for nearly four years, I am done. My balance and dizziness drive me crazy. I am tired of feeling like I am on a boat all the time. So I am looking into corrective surgery to be done at the Chiari Institute in New York. I have been recommended the Institute by my neurosurgeon at Duke University. I will follow his recommendations and send the institute all my records and films and let them review my case to see if I am a candidate for the surgery. If not, I may just have to live like I have been and try to find a way to make peace with my body and my brain.
Thursday, March 25, 2010
Functions of the Many Areas of the Brain
The brain is composed of many different areas. They all have a name and they all have their specific functions they are responsible for. When any of the areas of the brain are compromised, it can cause the brain to malfunction, which in turn can cause areas of the body to malfunction, the compromise can cause unnerving symptoms, or in certain situations, even cause death. Many times you can tell which part of the brain is being compromised by realizing the symtpoms you are having. If you know what areas of the brain are responsible for which tasks, then you may be able to detect which part of the brain is being compromised.
Some of the areas of the brain and their functions are:
Brainstem:
The brainstem has several functions. It is the base of the brain, or the lowest extension of the brain where many of the brain's functions pass. It is responsible for breathing, digestion, heart rate, your blood pressure, and your arousal, whether you are awake and alert, or asleep. The majority of the cranial nerves stem from the brainstem. The brainstem is the part of the brain where all fiber tracts pass up and down from the peripheral nerves, pass down the spinal column, and up to the highest part of the brain.
Cerebellum:
The cerebellum is located at the back of the brain and is responsible for balance and coordination. When the cerebellum is compromised, you may notice problems with ataxia, dizziness, balance and coordination problems, problems walking, talking, or eating. And even problems performing every day tasks.
Frontal Lobe:
The frontal part of the brain is responsible for planning, organizing, attention and other cognitive skills. When your frontal lobe is damaged or there is pressure being put on it, you may notice problems with your emotions or behaviors. You may have difficulty performing simple tasks, much less difficult tasks. Your frontal lobe is responsible for your higher cognitive functions.
Occipital Lobe:
The occipital lobe is the area of the brain that processes visual information. It is the area that helps to process shapes and colors. If there is any damage to this area of the brain, you will notice visual distrubances.
Parietal Lobe:
There are two parietal lobes, (left and right). They are located behind the frontal lobes. Damage to the left parietal lobe will cause problems with your ability to understand either written or spoken language. Damage to the right parietal lobe will cause problems with such things as getting around new and unfamiliar places, or even recognizing old and familiar places. The parietal lobes are also responsible for recognizing such things as touch, size, judgment, texture and weight.
Temporal Lobe:
The temporal lobes are located at each side of the brain (left and right) just about where the ears are. The temporal lobes are responsible for short term memories. The right temporal lobe is responsible primarily for visual memories. The left temporal brain is primarily responsible for verbal memories such as with names and your words.
Some of the areas of the brain and their functions are:
Brainstem:
The brainstem has several functions. It is the base of the brain, or the lowest extension of the brain where many of the brain's functions pass. It is responsible for breathing, digestion, heart rate, your blood pressure, and your arousal, whether you are awake and alert, or asleep. The majority of the cranial nerves stem from the brainstem. The brainstem is the part of the brain where all fiber tracts pass up and down from the peripheral nerves, pass down the spinal column, and up to the highest part of the brain.
Cerebellum:
The cerebellum is located at the back of the brain and is responsible for balance and coordination. When the cerebellum is compromised, you may notice problems with ataxia, dizziness, balance and coordination problems, problems walking, talking, or eating. And even problems performing every day tasks.
Frontal Lobe:
The frontal part of the brain is responsible for planning, organizing, attention and other cognitive skills. When your frontal lobe is damaged or there is pressure being put on it, you may notice problems with your emotions or behaviors. You may have difficulty performing simple tasks, much less difficult tasks. Your frontal lobe is responsible for your higher cognitive functions.
Occipital Lobe:
The occipital lobe is the area of the brain that processes visual information. It is the area that helps to process shapes and colors. If there is any damage to this area of the brain, you will notice visual distrubances.
Parietal Lobe:
There are two parietal lobes, (left and right). They are located behind the frontal lobes. Damage to the left parietal lobe will cause problems with your ability to understand either written or spoken language. Damage to the right parietal lobe will cause problems with such things as getting around new and unfamiliar places, or even recognizing old and familiar places. The parietal lobes are also responsible for recognizing such things as touch, size, judgment, texture and weight.
Temporal Lobe:
The temporal lobes are located at each side of the brain (left and right) just about where the ears are. The temporal lobes are responsible for short term memories. The right temporal lobe is responsible primarily for visual memories. The left temporal brain is primarily responsible for verbal memories such as with names and your words.
Sunday, March 14, 2010
What Does Pressure in Your Head Feel like?
One of the most common symptoms for a patient with an arachnoid cyst, is pressure in the head. At first you may not be sure anything is wrong. You may feel a little strange in the head, and it may fade in and out - or come and go. But as your cyst grows, it can start to put pressure on the brain and on in the inside of the skull.
If your cyst is growing, you may start to notice odd symptoms that you are not quite sure if the symptoms are real, or imaginary. They may be subtle at first and increasingly grow over time. Because the symptoms can emerge slowly and subtly, you may even wonder if they are real, or all in your head.
Some of the most common signs of presure on the brain are:
(1) Dizziness - Pressure on the brain can make you feel dizzy - whether it is a spinning dizzy, or off-balance dizzy. It may be subtle at first, but the dizziness can grow and get increasingly more bothersome. You may even experience nausea with the dizziness.
(2) Pressure - The pressure that arises in your head due to a cyst can feel similar to the pressure you may feel when a plane ascends into the sky. It feels like there is not enough room in your skull for everything in there - as if your brain is growing and pressing on the inside of your skull. It can also feel like a lot of fluid in your head, as if you were filling a waterballoon and the fluid gets to be too much in the balloon, so that the insides of the balloon are bulging and ready to burst.
(3) Tight - Too much pressure can make the inside of your head feel full; crowded. It can feel like your brain is being squished. You have an unrecognizable fullness in your head and you want to constantly shake your head to relieve the fullness and help to regain cognitive thinking. You can't think straight. You lose your ability to focus and concentrate.
(4) Vision Disturbances - Your vision may become distorted. Gradually it may seem as if you are looking at the world through distorted glasses. The world may seem more cartoon-like, like images are not real. You may have blurry vision or tunnel vision.
If you are having any of these symptoms, you need to be checked. If you already know that you have a cyst and develop these symptoms, keep record of them and rate them on a daily basis with 1 being not so bad and 10 at it's worst.
Only do what you can do, physically. Do not push yourself too hard or put yourself in dangerous situations, like driving long distances if you know that you are having problems with dizziness, or cognitive skills.
Talk to your doctor about all your symptoms, the severity of them, and if new ones develop.
If your cyst is growing, you may start to notice odd symptoms that you are not quite sure if the symptoms are real, or imaginary. They may be subtle at first and increasingly grow over time. Because the symptoms can emerge slowly and subtly, you may even wonder if they are real, or all in your head.
Some of the most common signs of presure on the brain are:
(1) Dizziness - Pressure on the brain can make you feel dizzy - whether it is a spinning dizzy, or off-balance dizzy. It may be subtle at first, but the dizziness can grow and get increasingly more bothersome. You may even experience nausea with the dizziness.
(2) Pressure - The pressure that arises in your head due to a cyst can feel similar to the pressure you may feel when a plane ascends into the sky. It feels like there is not enough room in your skull for everything in there - as if your brain is growing and pressing on the inside of your skull. It can also feel like a lot of fluid in your head, as if you were filling a waterballoon and the fluid gets to be too much in the balloon, so that the insides of the balloon are bulging and ready to burst.
(3) Tight - Too much pressure can make the inside of your head feel full; crowded. It can feel like your brain is being squished. You have an unrecognizable fullness in your head and you want to constantly shake your head to relieve the fullness and help to regain cognitive thinking. You can't think straight. You lose your ability to focus and concentrate.
(4) Vision Disturbances - Your vision may become distorted. Gradually it may seem as if you are looking at the world through distorted glasses. The world may seem more cartoon-like, like images are not real. You may have blurry vision or tunnel vision.
If you are having any of these symptoms, you need to be checked. If you already know that you have a cyst and develop these symptoms, keep record of them and rate them on a daily basis with 1 being not so bad and 10 at it's worst.
Only do what you can do, physically. Do not push yourself too hard or put yourself in dangerous situations, like driving long distances if you know that you are having problems with dizziness, or cognitive skills.
Talk to your doctor about all your symptoms, the severity of them, and if new ones develop.
Friday, March 12, 2010
Trying to Stay Positive
It's easy to get down in the dumps when you don't feel well. Your body feels like it is failing you, and this can easily cause you to feel depressed and discouraged. When you physically feel bad, it can cause an array of other symptoms, many of them mental and emotional. But it is important to keep your spirits up, however, even in the deepest, darkest moments of your life.
The brain is a complicated machine that is still not fully understood, even by the medical profession. It has even the brightest doctors baffled as to how it works. So if doctors do not fully understand the mechanics of the brain, it is certain that us laymen do not either. What we do know is that when the body starts to fail us; it gets sick or has mechanical problems, it does affect the brain. Knowing this, you can imagine that if it is your brain that is not working properly, due to pressure being put on it from a cyst, then you will certainly feel the effects of this both emotionally and mentally.
You have been running from doctor to doctor trying to get someone; anyone to listen to you about your symptoms, but all you are hearing is that these cysts do not normally cause problems for people. And that it must be something else causing your symptoms. Because of this, you are sent to more doctors; all different types and from all different branches of medicine. This can be frustrating. You feel all alone and frustrated. You may even start to get depressed because you don't feel right, or feel well, and no one is listening.
If at any time in your life, however, it is important to stay positive - and it is important to stay focused. Especially if you aren't getting anyone to listen to you and you are being handed off to other branches of the medical field, such as Ear, Nose, and Throat specialists, Internal Medicine doctors, etc. If you allow yourself to get depressed or down in the dumps, you cannot stay focused enough to make the right decisions for yourself.
The trick is finding a way to have positive thinking as you pursue your endeavors to get medical treatment. And the trick is remembering that if you stay positive, you will better be able to be your best advocate.
So how do you stay positive, how do you continue to stay focused and not let your emotions get the best of you?
(1) Set goals. If you set your goals on getting yourself the best medical treatment and work toward finding the best medical attention, this can help take your mind off some of the symptoms you are dealing with. It keeps you busy. If you need to, enlist a friend or family memeber to help you research doctors or facilities for your condition. Once you've made an appointment, allow yourself to get excited about seeing someone new, and view the appointment as a new opportunity to tell your story - the story of what is going on with you and your brain.
(2) Try to continue to do things you enjoy, or once enjoyed. If you can't do everything you once used to, find something you can still do, even if it's a walk around the block. This will help take your mind of your problem, if only for a few minutes. Also, getting fresh air and a little exercise can go a long way.
(3) Get plenty of rest. When your body gets run down, even if it isn't "sick" per se, but run down from not functioning properly, it can cause you to get depressed. Keeping your body and brain rested will help to keep your spirits up and your attitude positive.
(4) Talk to Someone. If you do not feel like a family member or friend is your best option, talk to a counselor. They can help you by listening, and giving you tips on how to deal with and live with a chronic medical problem. They may even have connections or contacts for you in the medical profession; such as a neurosurgeon or neurologist to get you started or keep you going in your pursuit to find treatment.
(5) Lastly, be tenacious. Do not give up. Giving up on yourself can cause even more depression, and loss of self worth. Stay focused and keep trying. Set your goals and go for them. If you have a goal to see two neurosurgeons in two weeks time, go for it. Stick to your plans and your goals.
The brain is a complicated machine that is still not fully understood, even by the medical profession. It has even the brightest doctors baffled as to how it works. So if doctors do not fully understand the mechanics of the brain, it is certain that us laymen do not either. What we do know is that when the body starts to fail us; it gets sick or has mechanical problems, it does affect the brain. Knowing this, you can imagine that if it is your brain that is not working properly, due to pressure being put on it from a cyst, then you will certainly feel the effects of this both emotionally and mentally.
You have been running from doctor to doctor trying to get someone; anyone to listen to you about your symptoms, but all you are hearing is that these cysts do not normally cause problems for people. And that it must be something else causing your symptoms. Because of this, you are sent to more doctors; all different types and from all different branches of medicine. This can be frustrating. You feel all alone and frustrated. You may even start to get depressed because you don't feel right, or feel well, and no one is listening.
If at any time in your life, however, it is important to stay positive - and it is important to stay focused. Especially if you aren't getting anyone to listen to you and you are being handed off to other branches of the medical field, such as Ear, Nose, and Throat specialists, Internal Medicine doctors, etc. If you allow yourself to get depressed or down in the dumps, you cannot stay focused enough to make the right decisions for yourself.
The trick is finding a way to have positive thinking as you pursue your endeavors to get medical treatment. And the trick is remembering that if you stay positive, you will better be able to be your best advocate.
So how do you stay positive, how do you continue to stay focused and not let your emotions get the best of you?
(1) Set goals. If you set your goals on getting yourself the best medical treatment and work toward finding the best medical attention, this can help take your mind off some of the symptoms you are dealing with. It keeps you busy. If you need to, enlist a friend or family memeber to help you research doctors or facilities for your condition. Once you've made an appointment, allow yourself to get excited about seeing someone new, and view the appointment as a new opportunity to tell your story - the story of what is going on with you and your brain.
(2) Try to continue to do things you enjoy, or once enjoyed. If you can't do everything you once used to, find something you can still do, even if it's a walk around the block. This will help take your mind of your problem, if only for a few minutes. Also, getting fresh air and a little exercise can go a long way.
(3) Get plenty of rest. When your body gets run down, even if it isn't "sick" per se, but run down from not functioning properly, it can cause you to get depressed. Keeping your body and brain rested will help to keep your spirits up and your attitude positive.
(4) Talk to Someone. If you do not feel like a family member or friend is your best option, talk to a counselor. They can help you by listening, and giving you tips on how to deal with and live with a chronic medical problem. They may even have connections or contacts for you in the medical profession; such as a neurosurgeon or neurologist to get you started or keep you going in your pursuit to find treatment.
(5) Lastly, be tenacious. Do not give up. Giving up on yourself can cause even more depression, and loss of self worth. Stay focused and keep trying. Set your goals and go for them. If you have a goal to see two neurosurgeons in two weeks time, go for it. Stick to your plans and your goals.
Monday, March 8, 2010
Talking to Your Doctor
Talking to your doctor can be intimidating. You may not feel as adequate as him, especially someone like a neurosurgeon. Sure, he has a lot of degrees hanging on his wall and sure, he is no doubt a very smart man. But you are intelligent too. Especially about your body.
Some people may not feel like they know how to speak to their doctor because he does have a medical degree, and a very difficult and specialized one at that. He has studied the brain extensively and does know a lot about it. But remember this, he does not know "all" about it. Nor does he know all about you. It is up to you to convey to your doctor exactly what is going on with you, but if you are nervous, feel intimidated, or feel inadequate to discuss such things as your nervous system and brain, you may need to take these steps to be able to have an intelligent conversation with your doctor. You may need to follow these ideas in order to convey to him exactly what you want, and exactly what has been happening to you.
(1) Document everything. Carry a tablet or diary with you all the time so that when you need to write things down, document your symptoms, or think of a question you want to ask, you won't forget.
(2) Practice talking to your doctor prior to your appointment. Stand in front of the mirror and rehearse what you want to say, what you need to say, and what is on your mind. Practice talking to your spouse, family member or friend, with what you want to say.
(3) Practice relaxation techniques. Deep breathing exercises can help you focus and stay focused. Meditation or yoga can help relax you.
Try to remember that your doctor is a person too. First and foremost he is human and may have had his own medical problems over the years or a family member with medical issues. So he may surprise you and be as open, friendly, and understanding as you want him to be. Do not panic when talking to him and think that he's not going to believe you, no matter how crazy or strange your symptoms may be. Give him a chance.
If all else fails and he is still dismissive, rude, or berates you or makes you feel uncomfortable, you have the right to find and seek medical care elsewhere. Do not be afraid of hurting anyone's feelings if you want a second opinion, or simply just do not feel comfortable and want to try a different neurosurgeon. You can always request copies of your records and go elsewhere for your medical care.
Some people may not feel like they know how to speak to their doctor because he does have a medical degree, and a very difficult and specialized one at that. He has studied the brain extensively and does know a lot about it. But remember this, he does not know "all" about it. Nor does he know all about you. It is up to you to convey to your doctor exactly what is going on with you, but if you are nervous, feel intimidated, or feel inadequate to discuss such things as your nervous system and brain, you may need to take these steps to be able to have an intelligent conversation with your doctor. You may need to follow these ideas in order to convey to him exactly what you want, and exactly what has been happening to you.
(1) Document everything. Carry a tablet or diary with you all the time so that when you need to write things down, document your symptoms, or think of a question you want to ask, you won't forget.
(2) Practice talking to your doctor prior to your appointment. Stand in front of the mirror and rehearse what you want to say, what you need to say, and what is on your mind. Practice talking to your spouse, family member or friend, with what you want to say.
(3) Practice relaxation techniques. Deep breathing exercises can help you focus and stay focused. Meditation or yoga can help relax you.
Try to remember that your doctor is a person too. First and foremost he is human and may have had his own medical problems over the years or a family member with medical issues. So he may surprise you and be as open, friendly, and understanding as you want him to be. Do not panic when talking to him and think that he's not going to believe you, no matter how crazy or strange your symptoms may be. Give him a chance.
If all else fails and he is still dismissive, rude, or berates you or makes you feel uncomfortable, you have the right to find and seek medical care elsewhere. Do not be afraid of hurting anyone's feelings if you want a second opinion, or simply just do not feel comfortable and want to try a different neurosurgeon. You can always request copies of your records and go elsewhere for your medical care.
Saturday, March 6, 2010
What is an Arachnoid Cyst?
Arachnoid cysts typically develop during development while inuterine. The arachnoid membrane will sometimes, and doctors don't really understand why, but it splits and the split portion will begin to fill with cerebral spinal fluid. The arachnoid membrane is a protective mebrane around the brain.
Sometimes the cerebral fluid, getting into the arachnoid membrane, will cause the membrane to grow and get larger, creating a cyst. Not all cysts grow. Many times it depends on whether or not membrane walls build within the cyst. These walls collect cerebral fluid beind them. The fluid can get trapped inside the walls, unable to find its way out, so the cyst will grow.
Depending on where the cyst develops, it can then begin to put pressure on the different areas of the brain. Mine, is a posterior fossa arachnoid cyst. It sits on the back of the brain and has grown, over the years, to bigger than a grapefruit. It consumes a very large portion of my brain. My brain has essentially grown around it over the years, and it expects the cyst to be there now. The cyst has caused my brain to shift up and forward. It has also pushed the back of the brain, where the cerebellum and brainstem are, downward. My optic chiasm is narrowed. This is where the optic nerves pass. My fourth ventricle is narrowed, as well as my pituitary gland is compromised.
I began to have symptoms in 2003 when I was 35. I noticed slight differences in myself, like I would forget things easily; lose my train of thought easily. I also had physical symptoms. One of the first signs something wasn't right was when I would wake up in the middle of the night and my head would be numb, just like if a limb lost feeling. I couldn't move my head off my pillow. Then that developed into my head aching, right at the back of the head where the cyst was. It would hurt after leaning it against a recliner, or the seat in the car. After that, things just spiraled fairly quickly downward. I began to get dizzy alot, forgetful, confused and unable to put things together...like where was the dairy section in the grocery store I'd shopped in so many times. And does red mean stop or go on a stop light.
It was a frightening and unnerving feeling, especially because I didn't know what was causing these odd symptoms. I saw many doctors, had MRI's, and no one wanted to associate these odd symptoms with my cyst. Even I began to believe them, that there was something else going on other than the cyst. Or maybe, I was just crazy. But when I started getting paralyzed at night when I slept, waking up not able to move an arm, a leg, or a finger, I knew it had to be my cyst. I even stopped breathing in the night, now having sleep apnea. This, I found out later, was due to the cyst putting pressure on my brainstem, which controls your breathing.
Something was gravely wrong and I had to get to the bottom of it. With no one else to believe me, or even halfway listen to me, I had to became my own advocate. I had to take charge of my body and of me. I was going to get to the bottom of this, and I was going to find a doctor who believed me and didn't think I was cuck-koo. I was going to make someone listen to me, because the way I was feeling, I just knew that my time was running out. If I didn't get someone to help me with this cyst, I was surely going to die!
Sometimes the cerebral fluid, getting into the arachnoid membrane, will cause the membrane to grow and get larger, creating a cyst. Not all cysts grow. Many times it depends on whether or not membrane walls build within the cyst. These walls collect cerebral fluid beind them. The fluid can get trapped inside the walls, unable to find its way out, so the cyst will grow.
Depending on where the cyst develops, it can then begin to put pressure on the different areas of the brain. Mine, is a posterior fossa arachnoid cyst. It sits on the back of the brain and has grown, over the years, to bigger than a grapefruit. It consumes a very large portion of my brain. My brain has essentially grown around it over the years, and it expects the cyst to be there now. The cyst has caused my brain to shift up and forward. It has also pushed the back of the brain, where the cerebellum and brainstem are, downward. My optic chiasm is narrowed. This is where the optic nerves pass. My fourth ventricle is narrowed, as well as my pituitary gland is compromised.
I began to have symptoms in 2003 when I was 35. I noticed slight differences in myself, like I would forget things easily; lose my train of thought easily. I also had physical symptoms. One of the first signs something wasn't right was when I would wake up in the middle of the night and my head would be numb, just like if a limb lost feeling. I couldn't move my head off my pillow. Then that developed into my head aching, right at the back of the head where the cyst was. It would hurt after leaning it against a recliner, or the seat in the car. After that, things just spiraled fairly quickly downward. I began to get dizzy alot, forgetful, confused and unable to put things together...like where was the dairy section in the grocery store I'd shopped in so many times. And does red mean stop or go on a stop light.
It was a frightening and unnerving feeling, especially because I didn't know what was causing these odd symptoms. I saw many doctors, had MRI's, and no one wanted to associate these odd symptoms with my cyst. Even I began to believe them, that there was something else going on other than the cyst. Or maybe, I was just crazy. But when I started getting paralyzed at night when I slept, waking up not able to move an arm, a leg, or a finger, I knew it had to be my cyst. I even stopped breathing in the night, now having sleep apnea. This, I found out later, was due to the cyst putting pressure on my brainstem, which controls your breathing.
Something was gravely wrong and I had to get to the bottom of it. With no one else to believe me, or even halfway listen to me, I had to became my own advocate. I had to take charge of my body and of me. I was going to get to the bottom of this, and I was going to find a doctor who believed me and didn't think I was cuck-koo. I was going to make someone listen to me, because the way I was feeling, I just knew that my time was running out. If I didn't get someone to help me with this cyst, I was surely going to die!
Friday, March 5, 2010
Hi Everyone,
My name is Maria and I am a fellow arachnoid cyst survivor! I have created this blog to gather with my arachnoid cyst friends, lend support, and offer information about these rare brain anomalies.
This site will be a place to get together and learn and gain strength to get through and deal with whatever challenges you are faced with when living with a rare brain condition, namely arachnoid cysts!
I hope to see you on here regularly and get to know you.
Disclaimer:
I may accept ads and payments for ads on my blog.
Maria
My name is Maria and I am a fellow arachnoid cyst survivor! I have created this blog to gather with my arachnoid cyst friends, lend support, and offer information about these rare brain anomalies.
This site will be a place to get together and learn and gain strength to get through and deal with whatever challenges you are faced with when living with a rare brain condition, namely arachnoid cysts!
I hope to see you on here regularly and get to know you.
Disclaimer:
I may accept ads and payments for ads on my blog.
Maria
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