thats what my NS tells me everytime i go back to him with what i think is achiari related incident. He orders a MRI. It comes back with "Stable Chiari Malformation with noted surgical changes" what does that mean when my head is about to implode, i stumble around like a drunk person on some days,ive noticed lately when trying to type or write something< it appears Im dyslexic i invert letters in words if im not extremely careful. Thats one reason im so slow typing. First of all they do theses MRIs with me laying down ,which might make it look "stable". However Im not stable nor are my headaches,etc
just wondering if anyone else has stable Chiari in an unstable body?
i am very unstable with balance and my vision. i dont know what my test shows. my nurologist is sending me to a surgeon cuz i have a syrinx . from what i have read online that is not good. anyone else here have a syrinx?
i am just really scared and reading alot trying to educate myself. its njust alot of information to understand.
jessica
Julie that's what I get from things I have read about diagnosis and prognosis regarding Chiari. A stable chiari without regression would most likely result in no surgery or maybe not even any treatment. I believe I have also read that the size of the opening can always result in a diagnosis of "stable" chiari. At least that's the way I understand it. I'm not real sure what that translates to; but it sounds as though it has to do with the possibility of the tonsils being able to herniate further down. As for me, since so many things mimic Chiari symptoms, I have to tell myself that maybe what's causing my problem is not Chiari related........it's just hard to tell sometimes. We just have to listen to our bodies and be persistent to find out what's wrong. If you aren't satisfied with the doctor's findings, I hope there is someone else you can go to or someone to review the films, at least for a second opinion.
Hugs
Shirley
there are only 2 NS in this city that my insurance would cover. I guess I need to approach the other NS with my symptoms and get another updated MRI. I think my GP can order the MRI and i have to have a referral to the other NS . I go back to my GP the middle of May so Ill approach him then about my concerns. He pretty well lets me direct my own care which is good. Personally I think its because he knows nothing about ACM so he does as I ask him to do
jessica.....
can you please explain where you syrinx is in the cord?
i think my surgeon might be wrong with my dianosis
Jessica-
I had a syrinx with my chiari too. I did the same thing that you are doing now--reading all the information that you can find! It helped me feel better to know as much as I could, plus it made the appointments with my NS seem very worthwhile because I knew exactly what he was talking about and I asked a lot of useful questions.
From my understanding, if you have a syrinx along with chiari, surgery is almost always recommended because the syrinx can't go away on it's own. Plus, the medical field believes that Chiari is what caused the syrinx in the first place. So, you can't just drain the syrinx, you also need to correct the chiari, or it will come right back.
I had decompression surgery June 2010, and the syrinx is almost completely gone, and my cerebellar tonsils are no longer prolapsed. I did however have several complications from the surgery for which I am still getting treatment.
If you have any questions, feel free to ask me--I feel like a walking encyclopedia on the subject!
Stacy
Stacy,
It is great to know that someone here has experience and knowledge regarding syringomyelia. I don't know much about it except what I have read. I am lucky enough to not have one! It does make sense that the Chiari needs to be decompressed to help relieve the pressure on the syrinx. I'm glad that you researched it and we can come to you with questions! Thanks for commenting and letting us know:)
Carla