Acromegaly Support Group
Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). Acromegaly most commonly affects middle-aged adults and can result in serious illness and premature death. Join the group to discuss symptoms, diagnosis, and treatments.
Some of you know I switched Edno's last November. She was upset that my previous Endo didn't have a full team to monitor my condition and that I hadn't had an MRI in 2 years. She put together a team of other specialist (Neuro, Cardio, Vision, Psych) to add to my Orthopedic that I already had for my hip.
In December I had my first appointment with the Neuro and the first thing he did was send me over to their radiology department for an MRI. Pit looked fine and no evidence of tumor growth....but something did show up that they thought was an aneurysm. More testing determined it was not an aneurysm, but something called a Cavernous Malformation (CM). A ganglion mass of thin walled blood vessels that tend to bleed causing seizures, strokes, MS type symptoms, memory issues, migraines..... all the good stuff we fear with the beast. At the time I was only experiencing the migraines and of course the memory issues, which have also been attributed to the Acro. At that time it was decided that we would monitor the CM in a wait and see approach.
Last Monday, I had a follow up MRI. His first words when he walked into the exam room were, "I've seen the pictures and it ain't good.......in 3 months it has doubled in size." Which he said would explain why the migraines were getting worse and more frequent and why the MS type symptoms emerged when I was tired and fatigued.
So.... come April 11th, I will go in for a Temporal Lobe Craniotomy to remove this thing. Will have a surgery clearance exam with my Primary Physician on the 4th and between then and the 11th, will have another more intensive mapping MRI of the malformation for surgery.
When I asked what were the draw backs, he said each case, like Acro is different. If everything goes right and there are no complications, I would be in for about 3 days. As far as post op complications, he said that could run the gamut from mild confusion and short term memory lapses, to some fairly problematic motor skills, memory and speech issues...............I like this guy. He's one of the best Neurological Surgeons in Memphis for this type of AVM and he doesn't pull any punches.
I said okay let's do this. I'm not crazy about something in my brain that has doubled in size in 3 months and want it out........but, if this screws up my hip replacement on April 23rd, I'm really gonna be pissed. he just laughed and said he would do all in his power to see that it didn't.
I asked him if he thought this was a result of the Acro. He said, he wasn't sure, but since nobody in my family had ever experienced anything like this, he highly suspected that it was another one of the offshoots stemming from the Acro condition.
Ain't we all just some damn lucky.....I really need to start buying Lottery tickets.
In December I had my first appointment with the Neuro and the first thing he did was send me over to their radiology department for an MRI. Pit looked fine and no evidence of tumor growth....but something did show up that they thought was an aneurysm. More testing determined it was not an aneurysm, but something called a Cavernous Malformation (CM). A ganglion mass of thin walled blood vessels that tend to bleed causing seizures, strokes, MS type symptoms, memory issues, migraines..... all the good stuff we fear with the beast. At the time I was only experiencing the migraines and of course the memory issues, which have also been attributed to the Acro. At that time it was decided that we would monitor the CM in a wait and see approach.
Last Monday, I had a follow up MRI. His first words when he walked into the exam room were, "I've seen the pictures and it ain't good.......in 3 months it has doubled in size." Which he said would explain why the migraines were getting worse and more frequent and why the MS type symptoms emerged when I was tired and fatigued.
So.... come April 11th, I will go in for a Temporal Lobe Craniotomy to remove this thing. Will have a surgery clearance exam with my Primary Physician on the 4th and between then and the 11th, will have another more intensive mapping MRI of the malformation for surgery.
When I asked what were the draw backs, he said each case, like Acro is different. If everything goes right and there are no complications, I would be in for about 3 days. As far as post op complications, he said that could run the gamut from mild confusion and short term memory lapses, to some fairly problematic motor skills, memory and speech issues...............I like this guy. He's one of the best Neurological Surgeons in Memphis for this type of AVM and he doesn't pull any punches.
I said okay let's do this. I'm not crazy about something in my brain that has doubled in size in 3 months and want it out........but, if this screws up my hip replacement on April 23rd, I'm really gonna be pissed. he just laughed and said he would do all in his power to see that it didn't.
I asked him if he thought this was a result of the Acro. He said, he wasn't sure, but since nobody in my family had ever experienced anything like this, he highly suspected that it was another one of the offshoots stemming from the Acro condition.
Ain't we all just some damn lucky.....I really need to start buying Lottery tickets.
My daughter had brain surgery for seizures in October. Totally different thing: Corpus Callosotomy. However, for what it's worth, it can be less scary than you think. She was on very little pain medication, and only for 1 day, then tylenol for a couple of days.
Wish I could offer more.......
It didn't help that just before I went in for my surgery, my medical insurance company informed us that my BP meds were no longer covered and that I would have to change meds.........many of you experience the abrupt change in your meds and how hard it is to get everything balanced out again.........this was just piss poor timing to say the least.
Even on the new medication my BP has consistently been in the Hypertension II level (170's/117's)........it's slowly coming down now, but still hanging in the Pre-hypertension to Hypertension I levels, which certainly doesn't help the energy levels or the quality mental levels.
Last Tuesday, I had an appointment for a new bench mark MRI with my Neurologist......... by the end of the 35 minutes I was almost in full panic attack mode and have felt like this huge tidal wave of apprehension has enveloped me since.
The hip replacement was pushed out to the end of May to give my system more time to recover from going under. Hopefully, this one will go smoother
The thought of 'going under' again in a few weeks is not very appealing at all, I am certain. Last week I purchased 'Philadelphia Magazine' because it was their 'top docs' issue. Overall, I was not impressed (I guess I know too many doctors in this region!) but noticed that Dr. Grady, who did my pituitary surgery (and one of the few that I really like) was listed in there. It also noted that he operates on malformations like yours. Made me think of you.
I think we were told that the brain takes 6 months to heal. And, that is consistent with what we have seen with my daughter. Overall, 6 months later, we are back where we started. Another problem on my list. I do recall following up with the neurosurgeon after about 60 days, and he told us that was the point when the extra sleep should be starting to resolve. So, rest up......
The Somatuline Depot has become more of a problem than a solution for me. If I get a moment in the next few days, I'll post on that. Been feeling pretty awful, though.....
Be better & keep us informed. You are so right: Acro is 'the beast.'