Your Brain and Balance Problems

If I had to say which of my symptoms bothers me most, I would have to say it is my balance. It's really hard to choose, because all of the symtpoms I live with bother me a great deal, but my balance problems really, really get to me. I have days where I feel like I should just "sit" all day and not even try to walk. And actually, the strange thing is that although my balance is bad enough when walking, it happens to be when I'm standing still and not moving at all, that it's the worst.

The brain stem is the governor of balance. And although I had problems with balance when I just had the Arachnoid Cyst, it got much worse when I developed my Chiari Malformation. My cyst was putting pressure on my brain stem, so I was already having enough trouble with balance. But once my brain stem herniated into my spine, WOW! I noticed a huge difference! I found that suddenly I was walking like I was always on a boat, rocking in the waves. I would have to reach out and grab onto something, or someone sometimes when I was walking, or when standing still. Over time, I got to where I would hold my legs different....tight. My knees would get thrown back to keep my balance, or I would cock a leg out to gain my balance when just standing there.

Bending over has become a thing of dread! I get so frustrated some days when I feel like all I do is bend over to pick something up. Those days are usually because I'm having a bad day of dropping everything that gets in my hands, and I have to bend and pick them up. Or my kids have dropped things on the floor that I'm having to clean up after them. I will bend to retrieve the item, lose my balance, wobble, almost fall over, miss the object I'm trying to get, then have to regain my balance and try again. It's a process - and an ordeal.

Once I've gotten whatever it is I was aiming for, it usually always makes me stop to think how people who don't have this problem, just don't know how lucky they are to be able to just bend over and pick something up off the floor. It's just a normal function, that most people don't ever put any thought into. I mean, why would they? Their brains work properly and they just do whatever it is they need to do without any thought. I have to think about everything I do today - every move I make. I have to put thought into every action, and it can be exhausting!

What I have learned is to slow down. I try not to do things too fast, but to concentrate on the task I'm doing so that I am more apt to do it right and without incident, the first time. Like emptying the dishwasher, for instance. That is a prime time for me to lose my balance and drop things. Unloading the silverware seems to be a chore that is very difficult. Because my hands don't work as well either, today, I tend to drop things easily when unloading the dishwasher - especially the silverware. I don't grasp things like I used to, so getting too many pieces of silverware in my hand is prime, dropping time for me. Then there's just losing my balance in general when bending over the dishwasher to pull things out. That is cause too, for dropping whatever is in my hand because suddenly I'm needing my hand free to grab onto the counter or something to get my balance. So over time, I have learned to only get a few pieces of silverware or one or two glasses at a time. I don't overload myself with items. It may take me longer to get the chore done, but at least most times now, I'm not having to bend and pick up items off the floor. I mean, there are still days that it just doesn't matter what I do, how I do it, or the thought and care I put into the task to avoid dropping things, I'm just going to drop whatever is in my hands, regardless.

There are things like balance therapy that I have talked to my doctor, my neurosurgeon, about. He recommended I try it, but I have yet to seek any treatment or therapy sessions. For some reason, for me and my case, I am just not sure that it will really help. I look at it as....until my herniated brain stem is corrected and not dangling down into the spine anymore, there is no therapy that's going to work. I could be wrong about that, I don't know. And I may opt to get the therapy or try it, one day. But for now, I just keep trying my tricks of standing in a certain way when standing still, stopping before I bend over to consciously think about what I'm doing and concentrate on the task before I just dive into the bent-over position. I make sure that I have my balance as best as possible, before I just bend and pick. Even so, I can still topple, but it does help.

I do still fall sometimes, too, and believe me, at 43 years old, falling down isn't pretty. If something takes me off guard and off balance enough that I can't recover from quickly enough, I have been known to hit the ground. Let me tell you, it hurts more today, falling as a grown woman, than when I was a kid. I don't know if I'm falling harder or if it's that I'm not able to fall as gracefully, like you do when you're a child. What I remember is that you tend to know how to fall when you're a kid, and just fall easier, more gracefully, something. Today, it is ugly, and it hurts! For a while, I seemed to have these constant bruises on my knee like I did when I was a kid.

If you suffer from balance problems with your brain cyst or Chiari, maybe you would benefit from balance therapy - I don't know. I just know that everyone is different and responds to different treatments differently. What may not work for one, may work for someone else. I do know that it is something to think about and maybe look into. Just because I don't think it will work for me, doesn't mean it wouldn't work for someone else. Like I said, I may follow through with it down the road. I have actually been thinking more about it recently.

Here is a link to learn more about balance therapy. http://www.medcentertherapy.com/balanceTherapy

And if you suffer from balance problems with your brain cyst, or have a Chiari Malformation or other brain issues that create balance problems, try to just slow down and concentrate a little harder on your task and what you are doing. That's what I can recommend. You can't just "do" anymore. You have to think about what you do - every step of the way, and prepare yourself.

Although I still have my days, like I said, where it seems like no matter what I do, I am just off balance, I can usually make it at least a little bit better by slowing down and using more concentration on what I'm doing, and on my every move.

Today I also try to be more forgiving of myself and my inadequacies. It used to really bother me that I always bump into things, or lean, or topple. Today, I try to laugh it off more. I also find myself explaining to others - people I know, or even don't know that see me lean, wobble, and almost fall. When I see them looking and staring at me like maybe I've been drinking, I just flash them a smile and say, "Brain surgery." And then they usually smile, and they seem to get it. Many times I get a sympathetic look or an, "awwww."

Below are a few links to some balance exercises you can try at home. I do, do them sometimes and plan on getting into a more regular routine with them to see if I can do any good for myself with some balance exercises. I will post down the road about my experience with them and let you know if they do help. And remember....my story may help you get through whatever it is you are dealing with - "It's all in Your Head," now available on Amazon, through Barnes and Noble, Tate Publishing and wherever you buy books.

http://www.amazon.com/Its-Your-Head-Maria-McCutchen/dp/1613460716/ref=sr_1_1?s=books&ie=UTF8&qid=1337510970&sr=1-1

Links to balance exercises:

1. http://physicaltherapy.about.com/od/balanceexercises/p/BalanceEx.htm

2. http://www.strongshape.com/balance-exercises.html

3. http://www.bodyresults.com/e2balanceexercises.asp

4. http://www.livestrong.com/balance-exercises/

It's all in Your Head

If you haven't seen my book yet....it was released in October and is now available to purchase on Amazon and through Barnes and Noble.  My goal is to reach as many people as possible, in hopes that not only my story will help and inspire those going through any medical issue - but particularly brain cysts and brain issues.

So check it out....for you or for someone you know who think could benefit from someone else's experience in "dealing".....dealing with doctors, pain and suffering, and life.

I hope you will find it inspiring and find it in yourself to never give up!


http://www.amazon.com/s/ref=nb_sb_ss_i_0_12?url=search-alias%3Dstripbooks&field-keywords=maria+mccutchen+it%27s+all+in+your+head&sprefix=maria+mccutc

Don't Give Up!

Boy is it frustrating when you don't feel well, you have medical problems and no one seems to be able to figure it out!  You want to give up! 

It plays out as: you go to the doctor with a medical problem and they either cannot find the problem or they tell you that what they have found, "shouldn't be causing you problems."  They tell you that your problem isn't really a problem....essentially.  Boy that is frustrating.  Especially if you know that it is the cause of your symptoms.  You just know, in your heart of hearts, that the diagnosis you've been given is the root of all your symptoms.  But your doctor(s) keep telling you that your diagnosis shouldn't be causing your symptoms.  And in that case, good luck convincing your doctor.

That was exactly what I had to deal with when my cyst was diagnosed - my brain cyst.  Doctors just kept telling me that my symptoms shouldn't be, and weren't being caused by my cyst.  I was essentially being told to "get over it."  I was told that my type of cyst is normally asymptomatic and shouldn't be causing my problems.  Hmmmmm!  A gigantic water balloon on my brain and none of the neurological symptoms I was experiencing were being caused by the large water balloon.  It made no sense.

For months, as I continued to go downhill and developed one frightening symptom after another, I begged for help.  When help didn't come, I had to take matters, and my health, into my own hands.  I got second opinions, I read about brain cysts online....as much information I could find about them anyways.  I read about the brain in general....what the different parts are responsible for.  And I began to put two-and-two together, and what I determined was that yes!  My brain cyst was the problem and now, I just had to get a doctor to believe me and one that understood these brain cysts better than other doctors.  Better than the doctors who had examined me so far.  So I put my investigative hat on and found a doctor in Arizona who was very well informed on brain cysts - very knowledgeable.

He operated, fenestrating my cyst first, then 4 months later inserting a shunt.  Everything was going well, until that fateful day when I met the doctor who would cause me more problems than what I started with.  Another disbelieving, non-trusting and finger-pointing doctor.  I will share that part of the story in my next post.....what this guy caused for me.  But I wasn't going to give up....I never did.  I almost did and there was a day when I seriously considered ending it all, but in the end, I fought to get the help and care I knew I needed.

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!"

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.

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:

• 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?

Anything you can think of to describe the symptom or odd sensation will be helpful to your doctor. Then, of course, if it happens again, this is even more beneficial to your doctor because it can show a pattern developing, etc.

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.

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:

1. Headaches
2. Dizziness
3. Ataxia - lack of muscle control
4. Increased Cranial Pressure- pressure in the head
5. Hydrocephalus (water on the brain)
6. 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:

1. Confusion
2. Sleep apnea
3. Breathing difficulties
4. Problems with speech
5. Nausea/vomiting
6. Papilladema-swelling of the optic nerve due to pressure
7. 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.

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.

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