Went to NS yesterday I have a 20mm hernation and restriction of CSF and he said my symptoms can’t get worse. He also said surgery might benefit me but the surgery itself is risky. He said it was up to me. If it can’t get worse should I just hang in there and fight the symptoms I have?
My NS told me that symptoms would not get better on their own and that they would most certainly worsen but the extend to which varies by individual. I always advise people to get at least 2 opinions because this is a rare disorder and some doctors have limited experience with it!
Lawrence, my symptoms got worse over time plus I developed new ones too. I would like to emphasize ruling out EDS and cranio cervical instability- a serious matter to have worked out before you have surgery- if that is the way you decide to go. Have you had your C-spine imaged to see if you have syrinx?
Jenn
Hello Lawrence! I would in addition to all the info you just got try and see a chiari specialist. Your symptoms could possibly get worse everyone’s different. That to me sounds like a concern with that NS because saying that you won’t get worse is unpredictable. I would get a second opinion best of luck to you take care!
I’m new here, so sorry if this thread is too old, but I wanted to say, yes, symptoms get worse over time, and can get worse even after you have the surgery. It’s been almost 12yrs since my decompression, and every year I develop new and stronger symptoms related to chiari.
I also do not understand how he can say they wont get worse!! If you have csf blockage than you can get worse!!! The many many nerves all over your spine and brain can get damaged along with your eyes and ears and sooo on!! I think you should get another opinion!!! I would also check and see how many Chiari cases he has worked with. The specialist I seen recommend I have the surgery and I have a 6mm herniation of my right tonsil and my cerebellum is pretty crowded and putting pressure on my 4th ventricle. The left tonsil is where it should be. She is doing it all..... Removing tonsil, taking part of c1 and doing a dura patch. She told me that I will not get better in time.... I will only get worse if I do not make more room for my cerebellum.also if the surgery is not done you have a much much high risk of being paralyzed if in an accident, especially with a herniation of 20mm..... What state do you live in? I wish you the best of luck!!!
I was advised to have surgery and had 8mm I was told if I did not do anything things could get worse. that was after I tried all the meds out there to help the symptoms and they did not I did have to get a second opinion though when I was first diagnosed if that helps.