Hi, I have been diagnosed with chiari malformation which means my cerebellum has herniated behind my spinal cord.
Over the past 3 years I have been getting episodes where it feels I have lost coordination of my whole body. It first started when I was out walking the dog in the woods, then I felt strange and realised that I could not judge where overhanging branches were, or quite where the ground was and felt very unsteady. When I got home, I tried to make myself a drink and found that when I reached out to get something I overshot to pick it up. Other things are not being able to get something in my pocket with one hand as I usually do and end up having to open the pocket with one hand whilst putting in the item with the other.
My vision goes askew during these ‘episodes’ also. I have found it hard to take in what others are saying - I can hear the words but they make no sense. My peripheral vision seems skewed also. It almost feels as though my eyes are moving all over the place.
I seem to get a warning of severe head pressure before I start to feel bad which is similar to my chiari pressure but I also get a feeling of being unwell before the symptoms start.
In between episodes things are absolutely normal. Just to add, I do find it hard to have a shower as my eyes are closed, or in the dark I struggle to feel steady. My eyes jump up and down when they are closed.
Please forgive me if I am on the wrong forum but sensory ataxia is the only thing I have found that resembles this.
i think you are inthe right place. my doc thinks I have SCA and you’ve just described much of the experience I’ve had over the years only yours is much more pronounced. Most of the docs I see have no clue of thses symptoms unless they are very pronounced but it is still very difficult to function at times even with mild symptoms. I sometimes can lose my entire sense of balance and fall over if the wind is blowing just right. And describing the problem with my eyes has been very tough. good neuro-opthamologist has been a great help to me i. u derstanding what is happening with my eyes and staying on top of the latest experimental treatments to try to ease symptoms.
My heart goes out to you. I really hope you get some help from this site. I don't know how to help you. I just had to write to you to let you know I feel for you. I will try not to complain about my illness after reading your story. Hence my favourite quote "I used to complain that I had no shoes until I saw a man with no feet" There is always someone worse off than me. .Have you seen a neuro? the best of luck . shirl
Hi Liz, I don't have any balance, I walk like I am drunk and I don't even drink,at times I feel like I'm walking on foam rubber .I get very bad Tinnitus ( I have just found out through this site that it could be caused from my SCA) SCA is Spino Cellebar Ataxia .I'm not sure if I have spelt it right. Sometimes at night my legs really play up. My arms are now doing the same It's hard to explain. They feel like they need to be stretched, it's like a painful ache. I take a sleeping pill but that doesn't help. I never get any sleep on those nights. Yesterday morn they were still playing up ( but not as bad as the night before.) I took a Valium tab. Within the half hour my legs had settled right down. I got them because of Sciatica and hadn't yet taken any. I know now to take one as soon as my legs start. I also have a weak bladder which I control with pills.Around the house I use a wheelie walker and for going any where I have a four wheel pavement scooter .I also have CIDP which is chronic inflammatory demythling polynuthopy ( sorry I can't think of how to spell it.) I hope this helps you to understand. rgds
Hi Liz, there can be many causes. I think I was born with it. I didn't walk until I was 2 years old. I don't remember ever having any balance .In 1970 after my son was born I developed painful pins and needles at the back of my knees. That's when I was sent to a Neuro and they told me I have SCA. Back then it was called Spino Cellebar degeneration. ( I can't spell it properly) You should Google and you will learn more about your illness. I thought my Tinnitus was bad but I don't think it's as bad as yours. My life is not that tough, I suppose I'm used to it. I believe there is always someone worse off then me. I think the CIDP is worse then SCA. Although I have had some funny things happen. Once I was eating a ice cream cone, and the next thing I knew it had flown through the air .I asked my son "did you see where that went" He was laughing that much. He said the look of surprise on my face was price less .We call it a CIDP attack. There is a lady that is on another site and her family wont even let her carry her coffee as it just flies right out of her hands.As for your legs, why don't you ask your Dr about a low does Valium, It might help.I hope this has answered some of your question and please write if you need a sounding board. The people on this site understand what you are going through.
Lizard said:
Oh Bron, so you have this daily in your life - that must be tough. I have trouble coping with my episodes so it must be real hard dealing with it on a daily basis.
I have restless legs syndrome for which I have to stretch my legs as they feel 'jittery' (for want of a better word) and very uncomfortable. I too have tinnitus which waxes and wanes but that is down to my chiari and CSS few around my brain. I have pulsatile tinnitus, thumping tinnitus caused by problems with crossed acoustic reflex and the normal ringing tinnitus. See with this once again, it is episodic compared to yourself but I hope that my symptoms do not progress and become constant. What is the cause of SCA?
Liz - SCA is spino cerebellar ataxia and it is strictly a genetic disease. There are many genes that have been identified. If you have restless leg ask your doctor for a sleep study. They tested me for this when they did my recent sleep study. I have apnea and use a BiPap machine at night. This has made a huge difference in my energy level and could be responsible for some of the improvements I’ve been noticing this summer after two years of use. Apnea is a main cause of Stroke and heart attack. Nothing to mess with.