I just left the dr. office, I’ve been with him for a year and a half and have had 2 brain surgeries. I continue to suffer from numerous symptoms, but when I tell him, he makes me feel like there’s nothing wrong with me and wants to send me back to my PCP. What the heck?? Maybe he’s to proud to admit that the surgeries haven’t worked like he thought they would. Does anyone else deal with this issue?
Susan and Abby, thank u so much for ur response. I’m gonna take both your advice . I’m gonna start a journal and I’m gonna learn to stand up for myself and “talk their talk”… we’re fighters and survivors!!! Why am I gonna act weak now! We deserve to live a rich life and not a defeated one.
Cannot really add much to what Abby, Carla and Susan said..100% agree with them...just wanted to say hi, YOU ARE NOT CRAZY..you still have symptoms..sometimes the NS leads us to believe we should be A-OK once the scars heal..BS!!!!!!
I have never had good luck personally, finding a NL that knows a damn thing about Chiari..so I deal with my PCP who..Thank the Lord is compassionate and caring. I am sure there are some NL out there that have dealt with Chiari...but I think they are few and far between...I have said this before and I think it really holds true with Chiari patients and NL...Doctors are small business (sometimes BIG BUSINESS!!) owners...a NL doesn't make $$$ on Chiari patients..mainly b/c there is no drug out there for us, thus no followup visits for meds with NL's....Just my opinion...
NL's do not handle pain management....a good PCP can do that...that has been my experience anyway.
Juda, so glad you are here..this is a great place for info and support..and mainly, for me..friendship..we all 'get it', ya know???
OMG!! I love my new friends! U guys r warriors… I mean WE r warriors for our cause. I’m in it to win IT!
My sister who is an RN and has worked in the OR, ICU, and now in a Cardiologist office has told me that basically once a surgeon is done with your after care he basically writes you off. This happened to me after I had shoulder surgery. I had lasting complications and he told me I was fine. They just want to close their file and move on to the next patient. It’s very sad that we are treated this way. I know it’s not with every surgeon. Juda, I really feel for you and I am sure you will find a doctor that meets YOUR needs!! Just hang in there and don’t give up!!!