Hello all here is a small update. I saw my GP yesterday for follow up from hospital stay. He really angered me because I am trying to discuss my issues with him and he says when was your last mammogram and cholesterol check. I was so mad I started crying. Not the reason I was there. My breasts and cholesterol are not a major concern today. Saw neurologist today. He has put me off work at this time for a month. Started on another medication for head pressure. So now taking topamax 50mg twice daily, fiorcet 1 tab every 6 hours, Ambien 5mg at bedtime which don’t work I am still only sleeping 4 hours if I am lucky and now diamox sequels 500mg daily for the god awful head pressure. Still have to see neurosurgeon Thursday and have appointment with cardiologist on February 4 and my neurological psychological evaluation February 6 for occipital neurostimulater. Hope you are all feeling well.

I am so sorry that the Drs are not listening to you. I can relate to that as can many on this site.

IMHO I think you need to see a Chiari Specialist and not a regular NS or NL or even your GP.

That was an unacceptable and very rude response you got from your GP and to me sounds uncaring and dismissive.

I hope you told him so! I usually think of all kinds of stuff to say when I get home but in the moment I am so stunned by the rudeness and in a state of disbelief that I never do! Lol

Please hang in there and don't give up.

Can you possibly see a Chiari Specialist?

I am researching for one now. I don’t know of any here in Michigan. The thing that is the problem is my health insurance. At this point though I am getting to the point to where I don’t care what I have to pay anymore. Even my husband has become fed up. He sees what I go through on a daily basis and has decided it is time to seek out another opinion. We are just tired of hearing surgery was a success because of what MRI looks like compared to previous. I feel it should be about how the patient feels not what a scan shows. Being down to one income hurts also. I get short term disability but that takes forever to get approved.

I'm sorry you are having a rough time. I hope you get some answers from your upcoming appts and that the meds help with the pressure in the meantime. It's so frustrating when doctors dismiss you or focus on something unrelated to your visit. For some reason my GI doctor always asks 100 questions about the arthritis in my spine and I'm pretty sure he's way more concerned about that than my stomach, it's frustrating to say the least!

Saw neurosurgeon today he has ordered a TENS unit and an LP. Still have the neuro psych eval for neurostimulator and cardiology appt to check for POTS.