Saturday, December 18, 2010
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
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:
- Ataxia - lack of muscle control
- Increased Cranial Pressure- pressure in the head
- Hydrocephalus (water on the brain)
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:
- Sleep apnea
- Breathing difficulties
- Problems with speech
- 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
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
Some of the areas of the brain and their functions are:
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.
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.
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.
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.
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.
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
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
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
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
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
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.
I may accept ads and payments for ads on my blog.