So as I said I was going to do in my video, I FINALLY got a copy of my MRI image CD (two actually) and brought one copy to my NF doctor. Now I just have to wait. (the other will go to my girly doc because I think she should know about this tumor too).
I have so many doctors that I think I just need to explain who is who when it comes to who takes care of me.
My NF doc/Neurologist - Dr P
My neuro-ophthalmologist (he, along with Dr. P, monitors my optic tumors)- Dr. L
Primary care physician- Dr Q
Gastroenterologist - Dr. B
Surgeon Dr. S
Oncologist Dr. K
Girly Doc- Dr. M
Shrink- (yes I have a shrink now!) Dr. H
I see/talk to my Gastroenterologist more than anybody else, so while he is the one that orders most of my tests (since they have all been abdomen related), he is not connected to or in communication with my NF doctor. Why? Someone told me at one of the hospitals I frequent that since 9/11, information from doc to doc is now the patient's responsibility. This is why things get fucked up. This is why I had to spend 1/2 of TWO different days going from one hospital to the next to make sure everything goes where it should. And I hate it.
I wrote a long letter to my NF doc, attached with my image CD and pathology report telling him 1) I want a biopsy of this new tumor because if it's the reason for my pain, I want it GONE (biopsy to make sure it's not cancer and to make sure whether or not it's plexiform,meaning 'regenerative')and 2) I want a pelvic MRI because of my pains there and I can JUSTIFY getting one because it took SEVERAL scans to find this retroperitoneal mass, who the hell knows what's in my pelvis. Maybe nothing, but I want to know.
We'll see.
Anyway, I did another NF study (even though I swore I'd never do one again). All they did was take some kind of laser to scan my skin to measure my outer tumors. The purpose of this study is to see whether or not this can be used in routine NF screenings. Boring. They will probably call me back for another round of it, but I am not going to do it. I'm glad this guy is all "fascinated" with NF and all- but I am tired of being asked to do studies that are so longitudinal that I'd never know information taken from MY body (info is not released til study is done). I thought this would be a good thing to do since it will benefit NF screenings, but, as I should have know, it's just EXPLOITATIVE.
I also had my eyes checked my a regular optometrist who was great and didn't make me feel shitty for having such a phobia of equipment going near my eye. He had somewhat of a hard time with the puff test - the first puff was fine, but my eyes freaked out and didn't really cooperate for the second puff since they knew a second puff was coming- but they eventually stayed open for the next one. While he was curt and efficient, he was totally OK with taking time for my eyes to stop fluttering an spasming when he wanted to get near it- first doctor to TELL me, "you have a lot of neurological trauma, of course your eyes are going to react this way!". I wish my neuro-opthamologist was as nice. HA I felt SO retarded telling him who my N-O was and saying, "he' sat the Mass Eye and Ear Infirmary" (I'm not used to my doctors knowing each other) and toward the end of our session he said my N-O is WORLD famous and he has sat in many of his lectures. I am surprised he didn't wave me off and say "I know who Dr. L is!!" he just let me explain!
Looking forward to getting new glasses.
And hopefully the next few blogs will be unrelated to NF til I get a response from my docs about what to do next!
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