I`m probably out of line here BUT! .Chiari pain is totally unpredictable compared to usual pain.I`m trying to choose my words carefully.To each of us who suffers this problem,we are all different .Not one pain management program will fit all.Why must we have to fit within set guidelines set down by those who do not have any idea what we go through.If I visit a PCP I will only get what they are able to prescribe within there known guidelines.I believe that the pressure on our brain stems is all different, and should be treated on individual merit .My pain is not yours, but your pain is not mine,if you know what I mean.We are all different,please treat us that way.When will the medical profession get it, that we are totally out of the box, and not main stream.I am sorry for this rant,but like many of you I`m tired and ready to give up.
I haven't seen a doctor yet who can even pronounce chiari correctley yet let alone prescribe me the right pain meds.
I agree with all of you,my MD had no idea what I was telling him the last time I was there,he had never heard of chiari.I took my surgery records to have him put them with my records in his office.When I told him I thought the dysautonomia was the reason for my sweating and sleeping problems he still acted as if I was speaking in a foreign language.He did prescribe a beta blocker and it has helped,it lowered the blood pressure and heart rate so he helped me by accident,isn’t that rediculious!!
Putty, I feel your frustration. You’ve got their number, for sure! It takes a lot of strength to have Chiari. I believe that there are people who can help us, albeit few, and part of our journey is getting to them. Keep in there, ok?
Jenn
Thank you for your support.I am just at a stage where I don`t know where to go,or who to see for help ,apart from this group.Frustration is beginning to take it`s toll on me and my family.We all have our own problems with Chiari . We are all so different, yet so much alike.Thanks again for your kind words.