Acromegaly Support Group

Spiegal, My jaw pain had quit before my surgury, I had had a splint and braces that I wore for years to help with the jaw pain. Maybe your jaw pain is from the jaw not closing right because of what the acromegaly does, I was told that the bone changes do not disappear after surgury,only the solf tissue swelling goes away.Just a thought.I could not sleep on the right side of my face or my jaw would hurt, some morning I could hardly open my mouth.You might want to read on TMJ.DEBBIE1253

Spiegal and Debbie, I have suffered with jaw pain for almost ten years. I had surgery on my jaw for TMJ, I sleep with a bite gaurd, (very attractive,) and I sometimes get acupuncture. The pain is about 50% better since my surgery. I was told that whatever damage the acromegaly had done is irreversible. I believe if the Hgh and IGF are under control, the bones should not keep growing. All of my pain is on the right side of my head and face, and lucky me my transphenoidal was through the right nostril
Spiegal, i'm happy to hear your jaw pain is gone.xx Mish

i have had surgery and radiation and my prolactin levels have to be monitored close because they didnt remove all of the tumor.its a good thing that there was no tumor on the MRI.as long as they arent very high i dont think theres anything to worry about??

Annette, If there is still some residual tumor left, you have to have your IGF and HGH monitored frequently, because if your levels are high, you probably need medication. Please ask your doctor about this. I am not sure about prolactin levels. Take care, Mishyxx

Annette was your tumor growth hormone producting, or maybe a prolactinoma a prolactin producting one? Thanks for your comments.

Mish7, I know what you mean about having to have your GH or IGF checked often, I have been waiting 2 weeks for my last results.It is nerve racking..

I just had blood work and went to the doctor April 4th (I think was the date) I drilled my endo with all kinds of question about levels, The GH, IGF-1 and prolactin are all linked.. one triggers the others to produce (can't remember the head hormone)They all have to be watched...my GH was almost normal. prolactin was 10.5 and they forgot the IGF-1, which is important so I have to go back...

Hi,
Debbie & Mish, Have only just seen replies about Jaw pain,Thank you,it was really bad last weeek for a few days, but the last 4 days been only niggling, but last night started again, also affecting my neck, I wonder if they will change my meds, or is it just going to be an ongoing thing, I thought it was because my GH had risen to 25 from 12, when it was 12 I wasnt having any pain, also IGI-F in the 900 gong to see endo this afternoon, but have not much faith in him, when you ask him anything, he just goes uuumm no feed back at all, will have to go and see a dentist, and go from there, you said something about TMJ is that a site Thanks

spiegal, TMJ stands for temporomandibluar joint.TMJ is a syndrome with terrible jaw pain.Some pain can be from nerve compression from acro and other pain is from the jaw moving its self. Go to emedicine health.com and search for TMJ and also www.aaoms.org/tmj.php they offer some info also you can just google TMJ Hopes this helps.

Hi Spiegal, Debbie gave you good links for TMJ, it is also referred to as TMD, Temporal Mandibular Disorder. Your HGH levels are too high! If your doctor isn't helping you, try to find another one. He should be able to give you educated answers to your questions, or at least say he is sorry he doesn't know the answer and refer you to someone who does. Trust me, don't waste time with inept doctors, (especially if you are in PAIN). All the best, Mish P.S. Sonny, how did they forget to check your IGF? What a shame you have to get poked again!!!