My husband’s consistent complaint has been intercranial pressure. Most other symptoms have subsided. We found a nice neurologist but is going in a direction I am a bit unsure of. Lonnie had eye doc appt today. The point was to see if he needed a spinal tap to relieve pressure. All looks great. Neuro set him up for spinal steroid injections to relieve pressure and inflammation. . He really doesn’t think Chiari and pressure are linked. We left with script for antidepressants and more Ibuprofens. When I get in front a doc and hear what they say it seems logical then I go home and wonder what they are thinking. Why we are the only ones who think Chiari is serious? Most doctors kind of give us the feeling that we are being dramatic. I Feel like I am searching in the dark and getting no where. Does any of this sound right? Any guidance?
P.S. I think it’s so funny when docs come in and explain Chiari to us like we have never known a thing about it and then they are not even explaining it correct at all
Yes they sound normal to me.I have gone through many doctors and I am to the point now where I have a good doctor trying to help me and I have shutting down with him,not wanting to communicate my issues to him.I flat out shut him down the first visit when I told him I have Chiari.He asked me have I ever thought about getting the surgery to help me with it and I basically told him I have never had a doctor that didn’t want to shovel hand full of meds down my throat,then tell me that Chiari wasn’t my problem.So to excuse me if I wasn’t jumping on the chance to get his help with Chiari,he grind and in agreeably and then I told him I was afraid also to get cut up and find there was a cure the next week. It is a long road for most of us and our families,the best we can hope for is finding an out of state doctor that will be aggressive.I have been sick for 6+ yrs and have yet to find that.I have a new doctor now so we will see,the good news is that his nurse has a brother that suffers from Chiari so my hopes aren’t completely smashed.There is HELP out there it is just hard to find,You have to find a good doctor and stick with them.The more doctors you see the harder it will be to connect the dots…
Yeah, ya gotta love it when the NL's come in and try to bluff their way through..like they actually know something about Chiari!! I personally found them (the NL's) I saw..infuriating and such...One NL couldn't pronounce Chiari..should have been my 1st clue to get the heck out of there...Another one said, yeah, Chiari..liver disease..THATS BUDD CHIARI!!! I think all of here could go on about the sily NL's comments!!!
has your husband gotten seen yet by NS?? Keep us posted.