I have inoperable Chiari. My C1 and C2 are up in my brain. During development my spinal Colom followed my spinal cord up into my brain so for a visual my brain is the mushroom cap and my spine in the stem. I have zero options. My worst complaint is my lack of balance. I have double vision corrected some what from glasses. I am on Celexa for panic attacks but its not working anymore. It makes me very stiff and this adds to my balance problem. Does anyone have sever balance issues and how do you deal with it. After 4 years of dealing with onset issues due to my two pregnancies at 41 and 43 I have really been down. I cant play with my kids like I should be able to and I get fatigued after I start to take a walk. I need to try and build strength. This is overwellming me and I find myself crying alone a lot.
Nadine, I am so sorry you are feeling so bad. I can understand why you are so upset and tearful, and I’m glad you reached out. This is such a difficult affliction to have, it can be very isolating. But you are not alone Nadine. A few questions… Is your condition considered a basilar invagnation? Do you have cranial settling? Why is it inoperable?
If the celexa is no longer working and making the balance issue worse, then can you revisit the anxiety issue with your doctor? This just came to mind - there are neuropsychiatrists who deal with brain injuries, they may be another option for anxiety med treatment with an understanding of how our brains are under duress.
I have balance issues. Mine got worse after decompression last year. Then got a little better and back to bad. I walk with a cane . I got it from PT after surgery used it for a few weeks, got rid of it then my balance issues resurfaced spring this year. Have you been checked for POTS-Postural Orthostatic Tachycardia Syndrome. I have awful fatigue too. I was just recently diagnosed . I have always been easily fatigued and had BP issues but no one could give me a reason. For strength building I use a resistance band, 1lb weights and an exercise ball in the hallway where I have two walls to sort of help. Ask you Doctor about POTS or at least a referral to a cardiologist. You can also buy a BP cuff (upper arm is the best)and keep track of your BP. Good luck and get a lot of rest in between your fatigue and stay hydrated.
If you were told it is inoperable, then you need to seek other opinions. If it is cranial settling (where the spinal column goes too far up into the skull cavity), can be fixed by traction, then cranial/cervical fusion to hold it in the correct position. That, with decompression can often give a better quality of life.
Here are some articles to read on cranial settling:
Your info is great. I do not know what it is I exactly have but will have Neurologist go over notes from Borgus at Mass General Boston. The last 5 years have been a bluer with the fact my babies came into my life at 40 and I was told I would never have any. I had a beautiful Italian patient pray to St Anthony for me and I told her to pray for the lottery because I couldn't have babies. Well she showed me I won the human lottery. The pregnancies did add to my condition that was lying under the surface my whole life.
2014 is the year for me.
take care god bless
Nadine
jcdemar said:
Nadine, I am so sorry you are feeling so bad. I can understand why you are so upset and tearful, and I'm glad you reached out. This is such a difficult affliction to have, it can be very isolating. But you are not alone Nadine. A few questions... Is your condition considered a basilar invagnation? Do you have cranial settling? Why is it inoperable?
If the celexa is no longer working and making the balance issue worse, then can you revisit the anxiety issue with your doctor? This just came to mind - there are neuropsychiatrists who deal with brain injuries, they may be another option for anxiety med treatment with an understanding of how our brains are under duress.
That sounds a lot like me. I have to see my Neurologist and do some research. 2014 is the year for me. Its just like "the summer of George. :)"
LizSpencer said:
I have balance issues. Mine got worse after decompression last year. Then got a little better and back to bad. I walk with a cane . I got it from PT after surgery used it for a few weeks, got rid of it then my balance issues resurfaced spring this year. Have you been checked for POTS-Postural Orthostatic Tachycardia Syndrome. I have awful fatigue too. I was just recently diagnosed . I have always been easily fatigued and had BP issues but no one could give me a reason. For strength building I use a resistance band, 1lb weights and an exercise ball in the hallway where I have two walls to sort of help. Ask you Doctor about POTS or at least a referral to a cardiologist. You can also buy a BP cuff (upper arm is the best)and keep track of your BP. Good luck and get a lot of rest in between your fatigue and stay hydrated.
:) Yes do some research please! I hope you are doing a little better.
naspeers said:
Hi Liz
That sounds a lot like me. I have to see my Neurologist and do some research. 2014 is the year for me. Its just like "the summer of George. :)"
LizSpencer said:
I have balance issues. Mine got worse after decompression last year. Then got a little better and back to bad. I walk with a cane . I got it from PT after surgery used it for a few weeks, got rid of it then my balance issues resurfaced spring this year. Have you been checked for POTS-Postural Orthostatic Tachycardia Syndrome. I have awful fatigue too. I was just recently diagnosed . I have always been easily fatigued and had BP issues but no one could give me a reason. For strength building I use a resistance band, 1lb weights and an exercise ball in the hallway where I have two walls to sort of help. Ask you Doctor about POTS or at least a referral to a cardiologist. You can also buy a BP cuff (upper arm is the best)and keep track of your BP. Good luck and get a lot of rest in between your fatigue and stay hydrated.