I’m not sure if anyone is in a wheelchair, but I thought I would ask. My husband has been in one for the last 3 years. We finally found a specialist in our area that was knowledgable and willing to see him only to be told there’s nothing else that can be done. We’re wondering if anyone else has had a similar experience or better success with a specialist. It’s hard on my husband and I’m looking for ways to support him emotionally and physically. Thank you all in advance for just listening.
Cathy, it’s so great to see a spouse that’s so supportive. I am not in a wheelchair so can’t offer my experience with that (but I know several members are using a wheelchair), but do have a few questions…has your husband had any surgeries? Does he have Ehlers Danlos? A syrinx? Not trying to be nosy, but I’ve learned that many Chiari “specialists” are really not all that specialized, and lacking in a greater understanding of Chiari and the conditions that come along with it.
Glad you found us,
Jenn
The original doctor in 1995 didn’t really give us much information because he said there wasn’t much research on the subject. He has a shunt implanted and the doctor said don’t come back unless you have problems. We moved from the area and have been searching for a doctor for years only to find no one with knowledge. His official diagnosis is Syringomyelia. The recent doctor said that he did have cm and there wasn’t anything he felt could be done. When I asked about another shunt or something else I was told no. He was walking three years ago and it has taken this long to find a doctor. We don’t know where else to look.
Cathy,
I am in a wheel chair. It came after sever falls after my decompression. I am also told that therec is nothing else the doctors can do. I am willing to answer anything I can
mike
Cathy,I agree keep looking. There is a member recommended dr list under the DOCTORS tab at the top of the page. You may even see a few NSs. I hope that there is something more that can be done, and since he’s only had a shunt placed I think there may be plenty of room for improvement- surgically.
Jenn