Susans Diagnoses

"Hi,
I was diagnosed Jan 3rd of this year. I went to the ER with severe headaches. I screamed the whole way to the hospital, my poor husband didn't know what the hell was going on. I almost put a hole in the floorboard of his Jeep with my uncontrollable thrashing and pounding of my feet. The pain was immesurable! I think I scared everyone out of the ER, as they pretty much immediately responded to my vocal cries for help.

The doctors did a routine spinal tap and then gave me some morophine. It didn't help much. The wheeled me in for an MRI where there was a large tumor on my Pituitary. It was a crazy night. They admitted me and transferred me to another hospital the next day. I was to have surgery immediately. The only problem was that for some reason I also developed hives. All over my body!!! I had to take Prednesone for 5 days in the hospital to try to get rid of them before surgery.

The doctor's told me of all the complications regarding surgery, and told me the tumor was very close to the carotid artery. They would try to remove as much as they could without killing me or leaving me blind. They went in transphenoidally. I did ok during the surgery and spent 2 days in the Intensive Care Unit, hooked up to a machine that kept the packing in my nose wet. It was awful!!! The worst was the removal of the packing!

It wasn't until my 1st appointment postoperatively with the endocrinologist that I ever heard of Acromegaly. He told me I had "it". He didn't know alot about it, other than there are treatment options. He had me go in for bloodwork. At this time my HGH count was in the 80's. I had more MRI's and even 28 rad's of radiation, as they couldn't remove all the tumor. During the summer. Believe me, I slept most of it away, and my headaches were getting increasingly worse.

My HGH count rose up to 222. I was put on Sandostatin Sub-Q injections. These seemed to help my headaches, but I had to inject every 4 hours. After about the 3rd hour my headaches would come back. The last MRI showed my tumor had enlarged again. The neurosurgeon wanted to do more surgery. I of course didn't want him to do it since he didn't get much of it the 1st time.

I was referred to Shand's hospital in Gainesville, FL where the head of the neurosurgery department performed my 2nd surgery. This was August 23rd. The procedure was less complicated than the 1st. There was no nasal packing!!! I was out the next day. He got most of the tumor, but yet a little bit remains, that should be eliminated within 5 years since I had the radiation.

I also saw an endocrinologist up there, he's from Ireland. A nice man who is very familiar with Acromegaly. He suggested that I start on Sandostatin LAR depot. This was done and the 1st injection went very nicely. I had alot of energy and no headaches for a month!!! The 2nd injection didn't work at all. The endocrinologist here in Orlando didn't "suspend" the medicine correctly. We even went back for an early 3rd injection which hasn't helped at all either, as they had a hard time with the mixing of it.

So, now I am also on a bromocriptine medicine called Dostinex. I also self inject myself with the Sandostatin on an as needed basis to keep the headaches down. This is the only thing I have found that helps with my headaches. My last blood test showed the GH level to be in the mid 40's. I have been taking oxycontin as well as percocets. I'm not a drug user, but these really don't seem to work like the sandostatin does.

Anyway, that is my story to you. I have really bad days and my life has never been so turned around. I have a very supportive husband, but I feel like a burden (self-imposed). I'm just praying that one day soon I'll feel good again. My husband says to take baby steps, which I do, then I just fall again. It's very frusterating! Anyway, I look forward to hearing from fellow acromegalic survivors! "

 

Susan has kindly updated this 28/08/09

"Well, as far as my condition now goes.  The growth hormone levels are within normal limits, thanks to Somavert.  I inject myself,   The Lar was really elevating my blood sugar levels.  But the self-injecting on an every other day basis of 15mg has leveled off my blood sugar.  I also inject Sandostatin every 2 hours, yes, even at night, my head will start hurting and the Somavert will lower some hormones I guess, the doc still hasn't figured that one out yet.  Anyway, other than my every 2 hr headaches, I get bad headaches still 3 -4 tmes per week and have to see a neurologist for pain management.  He classifies them as migraines, but there can't be something that hurts so bad that sends you to the ER a couple of times a year classified as a migraine.  Mostly they go away after some serious medication, and a dark room.  I also have arthritis, mostly in my back.  I don't know for sure if that all has to do with the acromegaly, because most doctors tend to try to declassify me. But all my facial features have returned to "normal" but my feet are still pretty BIG. 

I tend to live for TODAY, and think that I am very lucky that the doctor's found the tumor when they did.  Yes, I have struggled, everyday, like most of us.  But, I thank God that this is what he gave me, otherwise I wouldn't have looked at Today the way that I used to.. I used to be in a hurry to get things done, you know work and work, till life ain't fun.. (There is a song to this)  I now look at the things that I can do, when I can do them, and things are MARVELOUS!!!!"