Syringomyelia

[susie344]

My husband has been told that he has syringomyelia and that there is not much they can do for this and when we ask for info on it the doctors do not seem to want to tell us anything they say to look on the internet.  We did this and everything we found is very bad.  It almost sounds like we are just suppose to sit around and wait for all this awful stuff to start happening.  Is there anything you can suggest or are there any doctors doing research for this problem.  

[chriss163]

I am sorry to hear of your husbands diagnosis. My husband too has the same disease. It is not pretty. Most doctors do not have any idea what you are talking about when you tell them what he has. My husband has seen many doctors and all say there is nothing to help but pain management. Which unfortunately is pain meds. Check out the Chiari/syringomyelia foundation website. They have a free pamphlet they will send you. Bring it with you to each doctor. It saves the pain of repeating the symptoms and definition. I dont know what part of the country your are in but we have found The Franklin Pain and Wellness Center to be the most helpful so far. Get a lawyer, who only gets paid when you settle, and file for disabilty asap. It took us two years!!! There are good days and bad days. The weather low pressures are usually the worst days. Best wishes to you both.

[nita616]

To begin my prayers are with you. There are several web sites dealing with syringomyelia.
I know that there are two types one beings the result of injury the other hereditary. I cared for a friend in the last years of his life. He had been diagnosed 30 years prior. Yes bad things are going to happen.It is my hope that you will stand by your man. He will need you.
Try the Cleveland Clinic for info. Possibly they will arrange for you to come there. They deal with rare diseases and often are able to give far more help and or information then others. Take care of each other. nita