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/
Showing posts with label brain problems. Show all posts
Showing posts with label brain problems. Show all posts
Wednesday, May 23, 2012
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.
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!
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!"
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.
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