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.
Hello All,
I know there have been topics posted on this disorder way back in the archives, however I have questions myself to all of you who have dealt with this issue.
My Dentist has x-rays on file from 2006 that show my lower jaw has grown 8 mm outward. This is outward from a normal bite to an underbite formation. He is a great Dentist, he says I have one of the worst underbites he has seen, not in the fact for the unusual growth, but by how locked my muscles on my face are... He literally hooked his finger into either side of my mouth and yanked side to side, where my jaw muscles should have 'relaxed' my muscles felt like a bone, taught and unnerving.
I myself have had painful jaw locks, facial 'charlie horse' like pains... I am now just getting a dental plate or device that will allow my underbite to 'rest' as to not constantly be in conflict with the upper bite for conformity.
For longer term acro issues how other can I deal with this? The bite, the pain? My IGF is still uncontrolled.
I know there have been topics posted on this disorder way back in the archives, however I have questions myself to all of you who have dealt with this issue.
My Dentist has x-rays on file from 2006 that show my lower jaw has grown 8 mm outward. This is outward from a normal bite to an underbite formation. He is a great Dentist, he says I have one of the worst underbites he has seen, not in the fact for the unusual growth, but by how locked my muscles on my face are... He literally hooked his finger into either side of my mouth and yanked side to side, where my jaw muscles should have 'relaxed' my muscles felt like a bone, taught and unnerving.
I myself have had painful jaw locks, facial 'charlie horse' like pains... I am now just getting a dental plate or device that will allow my underbite to 'rest' as to not constantly be in conflict with the upper bite for conformity.
For longer term acro issues how other can I deal with this? The bite, the pain? My IGF is still uncontrolled.
Sorry to hear about the jaw pain. Seems like you really need to get your numbers down so that the growth stops. Are you considering GN still?
I don't have TMJ but I do have trigeminal neuraliga which is similar. Unfortunately it's the one kind of pain that I haven't been able to resolved yet. My tumor is resting on those nerves and hoping the radiation and drugs will start to shrink the tumor so that I have relief.
Headed to a new pain doctor in a couple weeks and will keep you posted.
How have you been feeling now that it has been a few weeks after your experience with GK? How is your energy levels at work?
Yes, I have an appointment with the Neurosurgeon for my consultation on July 12, and then after that hopefully get started asap.
I have read some articles about cavernous sinus invasion of the trigenimal nerves of the tumor and related GK and the results were promising on recovery. Just search for GK and Tumor Right Cavernous Sinus Invasion... On Google Scholarly Articles. Great resource!
Spiegal, Krwicke... Funny note, I was originally misdiagnosed by the ER doctors that my 'searing pain' in my head was Trigeminal Neuraliga. I was sent home with Carb; and I got a NASTY headache in response from it. The meds that is, but I didnt need them in the first place it was my pit tumor.
How do you both find the Carb?
All I know with the GK and my trigenial stuff is as soon as the radiation was done it triggered massive nerve pain for hours and hours. How can it all not be related? When the removed my first tumor, I had relief from the nerve pain within a day. I'm thinking that with the GK it will take quite a bit longer. I have maybe 2 out 7 days per week that I'm not in a lot of pain. Hoping for good meds when I go down to Mayo next week. The carbamazepine didn't help with mine at all but I tried it before my tumor was removed, not since after.
My searing pain was also what led me to my acromegaly diagnosis. It hit fast and hard and I was fortunate that my primary took me seriously. She sent me straight to a neuro who initially thought it was just TN but then the MRI came back clearly showing a tumor and the blood work confirmed. I was pain free for a little over a year after they remove the tumor. I'm hopeful that shrinking it will give me similar results.
Good luck with the neurosurgeon. GK wasn't a hard decision to make for me when they said that considering the placement of my tumor, I had an 80% chance of them shrinking it.
You mentioned that your tumor is in your right cavernous sinus, is the right side where most of your pain is as well? Mine is on the left, and all my pain is left sided.
Take care!