Unfortunately, my primary doesn't think there's anything to the cyst either. I had to pull teeth to get the referral to the neuro. We're at Offutt Air Force Base, and they don't have any endocrinologists here. After all this happened, I was just so frustrated and my head was hurting bad so I just went to bed. My husband picked up the phone and called Dr. Ludlam. He was upset that the doctors involved weren't being co-operative, and told my hubby to ask them if they'd ever diagnosed Cushings Disease before, or Acromegaly, or hypopituitarism etc. Apparently he told hubby that because the CT's and MRI's from back in 2000 all showed the intrasellar cisternal herniation, and the CT is now identifying it as a cyst, and the radiologist called it a tumor, Dr. Ludlam said the point is there DEFINITELY IS pituitary disease occurring and they just aren't putting the symptoms together. He gave us some ideas on how to get around this since OHSU is part of the Tricare HMO network. With Tricare, you MUST have a referral to see any specialist. Well, I have a referral for a GI specialist appt. for tomorrow (Thurs) - so hubby called Tricare and asked if he could change the provider since we now know the GI problems are because of pituitary disease, and this would be a wasted appt. and they gave us approval to use Dr. Ludlam. So the good news is we were able to find a work around and have it covered. Unfortunately, when he called to book the appt with OHSU, they said they usually get the appt's from a provider, and they didn't know how to go about booking in this situation since military health care isn't the same as normal HMO's. When I get an appt with a specialist, it's my responsibility to get my records and get everything done. So they are going to check a few things and then get back to us on if they can book an appt. Once the appt is actually booked, then I can go back into my primary doc and tell him what is going on, and give him Dr. Ludlams phone number and have him call him so he can be told and made to understand the necessity of seeing a pituitary specialist. Hopefully that will take care of everything. Because there are different areas with Tricare, (or as we call them Try-and-get-care) I can't even go to Walter Reed Army medical center because they aren't in the Triwest region. OHSU is though, and so far they've accepted the change in provider on the referral. I'm so fed up of having to fight tooth and nail to get proper care. I don't know how some of you have managed to fight for ten's of years. The past 5 years has been enough to drive me over the edge. I can't thank you all enough for the support and input you've given me. I hope you understand how much this has meant to me. I probably would give up on life itself if I hadn't found this site and learned about this disease and found OHSU. One way or another, I WILL get the care I need. Thank you all again. | 