Monday, November 14, 2011

Cost Of Surgery

(In response to my anonymous poster)

I had surgery in December 2006 for a 2.3cm pituitary macroadenoma. There were no complications, no CSF leak, etc. I stayed overnight at UCSF and was released by 11am the day following surgery. My insurance at the time was Health Net in California. My surgery cost almost $35,000. My copay was $250, that's all I paid out of pocket.

Tuesday, October 18, 2011

My Acro Monster

In response to an anonymous poster who didn't believe I looked like I physically had Acromegaly, here are before and after pictures. Oh, and thanks for the comment since I certainly don't wish to look like an Acromegalic :-) I never wanted to post my worst pictures because I was embarrassed and ashamed of the "monster" I felt that Acromegaly turned me into. But if it helps others, here it is. I'm including my reply to this person, although I forgot to include all of the physical signs of Acromegaly that I had, sorry my memory is still not the best. Another I can mention is I started developing an under bite and TMJ.

My Acro Monster (Pre- Surgery 9/2006, Surgery 12/2006)

Almost 5 Years Post Surgery (6/2011)

"Yes, I believe my Acromegaly may have been caught early. I did have the outward signs before I had surgery. Some of my physical symptoms of Acromegaly were: I gained 30 pounds, my nose and lips enlarged, my skin darkened and thickened, my brow started lowering and my eyes became further recessed. I had acne, I grew more facial hair. I also developed the body type of the Acromegalic with a barrel-like chest, and spade-like hands and feet. Going on a diet, having surgery 5 years ago, and the fact that I'm now on 40mg of Sandostatin every 3 weeks has gone a long way towards getting me back to looking normal, although I don't feel completely normal on the inside. I still have large knuckles and spade-like hands and feet, although my tissue swelling has reduced immensely. I haven't posted one of the worst pictures of myself before surgery, but I can do that so you can see more of a difference. Truthfully I'm embarrassed at the monster I became. This is my picture timeline."

My Picture Timeline

Monday, September 12, 2011

Raw Food Diet

I've been trying to change my diet for my health the last few years since I've had Acromegaly and as a result, high blood pressure. I grew up on a high dairy diet (I loved milk, cheese, ice cream and eggs), then as an adult I transitioned to a higher protein, higher fat diet (thank you fast food) which also included high dairy. It seems a 100% raw food diet may be much more beneficial than I first thought. When I tried to go raw before I didn't stick with it, in part due to habit and societal reasons. What I didn't realize at the time, was that I was also probably in a detox phase that was uncomfortable. If I can find the motivation I'm going raw/organic. It's sobering to think my own diet may have caused my Acromegaly. I wish there was a way to cure or reverse the condition without medications. I've already transitioned to a very low salt diet (way under 1500mg/day) and have lowered my blood pressure to a normal level so that I don't need blood pressure medication anymore. My skin also looks better, it's no longer super dry to the point of flaking, and I have less acne.

Why Raw Food?

Wednesday, May 4, 2011

Acromegaly Connections Chicago Event 5/21

Again, for any interested. Click the link below, when the image comes up in a new page you can click again to enlarge the details.

Thursday, April 21, 2011

Mini Update

I've been lifting weights a few times a week, and jog/walking a few times a week. I've done a lot of online research. I got a lot of useful information from on proper lifting techniques, they have some great videos.

The good news is I've been feeling so much more energy. I haven't been as depressed. I still have some issues with long distance driving causing me fatigue. And I still get extremely irritable, usually the week before my Sandostatin shots, as if the medication is wearing off. I hate everyone that week :-) I've told my children, you know the drill - ignore Mommy this week, I'll probably say a lot of horrible things that I really don't mean. I can't seem to control my outbursts even when I consciously try.

I've also noticed sometimes I still get the neck pain and headache on the left side. What's worked for me is a muscle relaxant. Once I've literally knocked myself out with that so I can relax and rest for a few hours, I feel wonderful afterward. I wish I didn't need my drugs, but they can be helpful when used carefully.

Wednesday, April 20, 2011

Acromegaly Connections Event 4/30

I received an email about an event in California that some may find interesting, details below.

Wednesday, February 2, 2011

Fantastic News!

I had lab work done in January, about 6 months since I changed from Sandostatin 40mg every 4 weeks to every 3 weeks. My GH went from 1.8 to 0.94. IGF-1 went from 379 to 356. I've been on Sandostatin around 4 years now and my numbers have never been so low, my GH had never been under 1.0 with the OGTT. My endo also stated based on my new MRI it's possible that the residual tissue may be shrinking a little. I see my endo again in June and may add Cabergoline to the treatment then.