Acromegaly in remission 7 years experiencing pain

[RideClimb]

Anyone have past Acromegaly...now in remission, but still experiencing chronic headaches and soft tissue pain.  I have a headache and muscle aches every day and wonder if this is a result of body changes due to Acromegaly.  Please advise any input.  Thanks so much

[Daniel M Prevedello, MD]

Dear Rideclimb

I am sorry I was not able to answer some questions for a while.
Thank you Ms. Rumpled for helping out. I agree with what she said.
It is important that you see an endocrinologist. It is important that you check your other hormones as well. Low cortisol secondary from surgery could also justify chronic pain and it can be improved with hormonal replacement.

[rumpled]

I had a Cushing's tumor and I can tell you I am in constant pain as well. I am post op 8 years. I am *not* really in remission though - I am thought to have a version of Nelson's - one of my hormones is super elevated. But I have a lot of headaches, joint pain etc.
It is crazy, but yeah, there is very little on us after we have surgery it is like they think all is ok and it should snap back and I know a few that do, but quite a few of us do not.

[RideClimb]

Thanks for your response...it is comforting to know others are out there I can relate to.  I just had my blood work  done over the last couple of weeks and everything is fine....total remission.   I am wanting to know if others are experiencing chronic pain as a result of past Growth Hormone secreting pituitary tumors.  The Tumor has been out for 7 years, but I have a constant headache and soft tissue and joint pain on a daily basis.   There is not a lot of information out there on Pituitary tumors and chronic pain.

I am reaching for straws at this point and am wanting to hear others experiences.  Thanks so much  

[rumpled]

This forum is not being actively monitored by doctors at the moment. As a pituitary patient myself I will tell you that once a pituitary patient, always one and you should be monitored forever - even if it is once a year - for recurrence and to make sure the hormones are in a good way. Please go back and see a neuro-endo and make it sooner rather than later. Then make sure you stay under the care of a neuro-endo so you catch anything quickly.
BTW there are medications now so they may be able to resolve this using meds instead of surgery.