HI!
Thought I would do an official intro even though I have talked with a few of you on chat night a Minnie a few times. This may get lengthy so hold on for the ride!
My name is Annetta (Neda) and my husband Bill has recently been diagnosed with Acromegaly. It all started back in November. Bill is 34 yrs old and has been doagnosed with bipolar disorder (mainly manic and stable w/ meds) for about 7 years and has been diagnosed with glaucoma and successfully treated for about 4-5 years. Anyway, maybe a year ago his glaucoma dr felt that since his glaucoma had progressed from borderline to full blown that he needed to see a more specialized specialist (hope that makes sense). So Bill has been seeing his glaucoma dr and was at a routine checkup...wouldn't you know I wasn't there...when the dr. was looking at Bill's hands and messing with his fingers and suggested he might want to be tested for acromegaly. Thus, he made Bill an appt with Dr. Doty with East TN Endocrinologists.
Off he went to Dr. Doty's office and had his initial exam. Dr. DOty didn't immediately think he had acro as he had no real physical symptoms...no headaches, dizzyness, ect but did the IGF-1 test anyway. He was slightly suspicious because Bill's mom had had a pituitary tumor removed a few years ago. The IGF-1 came back as 2 1/2 times normal...900 I believe and Dr. Doty immediately ordered an MRI. So on Dec. 30 Bill had his first MRI. We didn't know he was mildly claustrophobic but we found out. He made it thru it though and the results show a small..approx 3mm enlargment of the pituitary but failed to clearly define the tumor. This lead Dr. Doty to Schedule an OGTT to check his growth hormone levels. We had this done on Jan. 9th. The results came back as all 2's on an assay that registers 5 as normal. This confirmed the diagnosis of acromegaly. But Dr. Doty and the redialogist felt uncomfortable with the results of the first MRI so they scheduled a Dynamic MRI (I am affraid to get the bill for that one.) with sedative medication. This was friday before last...ummm Feb. 6th. Everything went well and Dr. Doty's office called Wed to ask us to come in on Friday...yes Friday, February 13th ACK!....to discuss treatment options.
So in we went on friday and Dr. Doty confirms that the new MRI did show a 3-4mm tumor which the best option for fixing would be recommended as surgery. He discussed the 3 medication options....umm the pill that starts witha K I think that Bill can't take due to his other meds, Sandostatin..the very expensive shot and that other one where you give yourself a shot everyday. Bill, Dr. Doty and I all voted for surgery. Then it came down to picking a surgeon. It was a choice between Dr. Finelli who is affiliated with Baptist Hospital and had done Bill's mom's surgery or Dr. William Reid associated with the Univeristy of Tennessee Medical Center. We finally choose to go with Dr. Reid...one because that is who Dr. Doty recommended. He said if he was having it done that is who he would want even though he said Dr. Finelli was good also. Two, because Baptist is very wishy washy with our insurance and sometimes they take it and sometimes they don't. I currently think it's on the don't list. Three, and this is a funny coincidence, Bill has previously been a patient of Dr. Reid's. About 12 years ago Bill was in a car wreck and fractured one of the vertibrae in his neck and had to wear a halo brace for 10 weeks. Dr. Reid was the Neurosurgeon who treated him.
And that leads us to where we are currently which is awaiting the appt on March 10th with Dr. Reid to schedule surgery. That in itself is gonna be tricky as we have to be careful with pain meds due to bill's bipolar disorder and the meds he's on for that and we do not want a 6'4" 365lb manic patient recovering from surgery....NO NO NO!
Some other things to note that I missed is that Dr. Doty is classing Bill as MEN1 due to his mom having had one pituitary tumor removed which was the size of a pea and now just had another MRI done showing that it has recurred and is 1cm. Dr. Doty is also running a GHRH test to rule out possible tumors elsewhere as well due to the tiny size of the tumor he has causing the problems that it is. He also said that he would be having yearly screenings in the future for tumor recurrence or tumors in other palces due to being MEN1. He said Bill's was a very interesting case due to all factors involved and said even if he wasn't the one on call the week he had his surgery that he would probably come by to check on him. He said someone from thier group would be "All over Bill like a wet sponge." when it came time for surgery. He was very nice about answering questions and didn't want to rush us into picking a surgeon just because he recommended him. He said if we wanted Dr. Finelli he'd check on all the insurance stuff for us but I liked Dr. Reid the last time we delt with him so I feel comfortable there. Plus all his MRI's have been done at UT and UT has fabulous equipment since it's a teaching hospital and all.
I am currently arranging to take 2 weeks off if my full time and part time jobs and Bill has told his he will need at least two weeks off. He, along with another caregiver, take care of a young man who was involved in a car wreck 11 years ago and suffered brain damage. It's pretty much watching him and making sure he doesn't hurt himself and helping eat, ect so it's not terrible stressing work but he still needs time. Will discuss how much with the surgeon. They said 1-2 days in ICU and another 2 days in the hospital barring any complications which are not expected due to the tiny size of the tumor. Bill is concerned about the level of pain and doesn't look forward to the nose packing. Dr. Doty discribed the pain as feeling like you've been punched in the nose hard. More of a deep bruising pain than a sharp incision type pain. Then followup care at 2 weeks and followup testing at 6 weeks then yearly if everything goes as planned.
Anyway, that's my story. Comments, suggestions, and advice are all welcome. I have read some wonderful stuff that has helped keep us from freaking out during this fast paced couple of months. We've only been dealing with this for about 3 months now.
As for yearly monitoring Dr. Doty said that patients often know a tumor has returned before the doctor will. I asked if that would hold true in Bill's cause because he's not having any major negative symptoms and he said he may see an improvement in the way he feels, moves, ect that he's not even realizing now is abnormal. I also asked if he felt in anyway that the tumor may have triggered Bill's bipolar disorder and/or contributed to it and he said he didn't think so but it would be interesting to watch. He also mentioned that he thought Bill had had this tumor for probably 7-8 years or longer.
For those people who don't know what bipolar disorder is it's commonly refered to as manic depression. Bill was diagnosed 7 years ago with sudden onset and we had had no clues about it prior to this. The inital manic episode lasted about 3 weeks while they hunted for proper meds and he struggled with stability for about 4 months. He's had 2 episodes since both of which took about 2 weeks to cycle thru. Bill has been fairly easy to medicate and stabilize. He doesn't have to have therapy and is VERY med compliant. This really goes against a lot of what I have heard about bipolar disorder so we just counted ourselves as very lucky. Now I wonder if the 2 aren't related at least somewhat. Anyhow we shall see and even though I don't dare suggest that this might cure his bipolar...wouldn't it be nice? But I will take stability on meds anyday.
Once again I welcome responses to our story.
