I have Chiari malformation type two (moderate) with my last MRI about 2 years ago. The surgeon I met with then thought that I should have surgery but then I was diagnosed with cancer and we had to deal with that first. Now I have dealt with that...I hope... and have had a very bad cough and have I think, caused my brain to slump further... I don't have a syrinx as far as I know. Now I have pressure in my head and it keeps clicking when I turn my head and when I cough I get migraine pain that is blinding that lasts between 30 seconds and a minute and I feel nauseous and had vertigo the other day which went away after gravol. I'm really frightened that the coughing has caused things to really progress for me!
I have two young kids... I had to have c sections with them due to this as the dr said I could die giving birth the natural way...yikes.
Is there anyone on this board that knows the best surgeons to go to for the surgery in Toronto? I'm reading what other people say after their recovery it looks as if nobody really returns to normal? The dr I spoke to said that this only gets worse and that I will eventually lose the ability to swallow and really seemed to be pushing for the surgery but I wasn't given a lot of other info and felt really rushed...
Hi, Elsie! I understand you're going through tough times.
I'll be seeing a neurologist next year after an ~ 8 years long pause, and I haven't had any chiari surgeries. I can't tell you much based om my experience. But as far as I know from reading about chiari and watching lectures on youtube, the surgeries are done if a) the doctor believes it will prevent the condition from worsening; b) the symptoms are so bad that they outweigh the risks of a surgery. If I'm wrong, please correct me! As a doctor, whose name I don't remember, said- the surgery is considered a success by most surgeons if it goes technically well. They tend not to consider if the patient continues having the symptoms after. People are saying, the recovery takes usually between 6 months and a year, and for some the symptoms never go away, for some they go away, but then after a while come back.
One of the things you can do to see if anyone has a doctor recommendation for your city is to connect with other members in your area. Here are the search results for Toronto members.