Ok, so I saw my NS yesterday who I love and he said I'm continuing to hold my own. He can't do the decompression surgery right now because I'm having an issue with my bone, where it's dissolving in certain areas so he doesn't want to mess with the bone in my head and neck until we figure that out. So I am in a holding pattern right now for indefinite period of time. The question I have is who helps you with being symptomatic? Would I just see my primary? I am learning the NS mainly focuses on surgery and nothing else. Are there Chiari "doctors" or are all "Chiari specialists" neurosurgeons? I'm confused about that. If anyone could help, I'd really appreciate it!
Melissa
I've found neurologists basically useless when it comes to chiari but I've heard there are some who are actually knowledgeable about the condition so if you could find one that would be a good start. Sadly most doctors aside from NS don't know enough about it and like you said NS basically don't deal with non-surgical issues.
Thank you so much for your reply. Sometimes I feel like no one sees what I post. I will continue to search to see what I can find. I'm hoping someone out there will be able to give me some information--then I can share it with all of you! Thanks again!
Anglyn said:
I've found neurologists basically useless when it comes to chiari but I've heard there are some who are actually knowledgeable about the condition so if you could find one that would be a good start. Sadly most doctors aside from NS don't know enough about it and like you said NS basically don't deal with non-surgical issues.
Beeba… im presuming an orthopaedic spinal surgeon may be best… or a rheumatologist. They both deal with bone diseases.
Melissa - I think it is NLs who sort out pain meds for headaches. I have been on propranolol (beta blockers) which aren’t doing anything for me really.
I havent heard of dissolving bones… could that be degenerative disc disease? Or is that just cartilage. …? Hmm…
But that does seem like a good idea to wait and see what that is before going down the surgical route. Xx
Thank you so much for your reply. I am sorry your situation progressed so fast--seems you didn't even have time to get more information or a choice about what you wanted. How did your surgery go? Has it helped the symptoms? I'm not sure what a NL is but I'm going to try to find out. Thank you for your encouragement!
Melissa
Beeba said:
Who do you see for bone issue? A spine dr? I don't know who you go to when surgery is not on the table. It is very frustrating not to be in anyone's box. A nl can give it a shot. It just hurts and I can't tell you what helps as I never left the hospital from dx to surgery. IV dilauded didn't even take it away - I really didn't care but it still hurt. I am so sorry you are in this predicament.
It's not so much headaches that I'm having an issue with, it's neck pain. And they found the bone process disorder when they did my MRI. My skull is changing shape and we need to find out why and how that has affected the development of the Chiari and how it will affect the treatment if I do have surgery down the line. I was on propranalol at one time but for my heart issues (I have a lot of other medical problems)...don't know if it affected or helped my bone. Thank you so much for taking the time out to reply and I will look into a NL, after I find out what it is! LOL Your support is appreciated!
Melissa
bozzylozzy said:
Beeba.. im presuming an orthopaedic spinal surgeon may be best.. or a rheumatologist. They both deal with bone diseases.
Melissa - I think it is NLs who sort out pain meds for headaches. I have been on propranolol (beta blockers) which aren't doing anything for me really.
I havent heard of dissolving bones.. could that be degenerative disc disease? Or is that just cartilage. ..? Hmm..
But that does seem like a good idea to wait and see what that is before going down the surgical route. Xx