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.
Having battled this beast for the past 13 years it has been an up hill effort the whole time...........this beast (Acro) just keeps on giving those little surprises. The physical changes were one thing, the chronic fatigue, the mental aspects, the limited stamina, the constant pain in the muscles and joints, the carpel, the migraines, the growing advanced arthritis, chest pains, enlarged heart, enlarged liver, then the chronic kidney disease, no diabetes yet and now deformed hip structure. This beast has put an end to my career in Architecdture and Construction Management. (since 2009)......it gets to the point where I wonder what's next.
Just wondering if anybody else has experienced problems with their hips. Last summer I slipped in some mud and fell very awkwardly. The result was a stress fracture in the femoral neck (where the femur turns and goes into the hip socket). My Orthopedic surgeon was highly surprised as he has never seen a stress fracture in an Acromegaly patient. Considering that my bone density is twice the normal, he said that I was lucky in the fact that the stress put on the bone to cause the stress fracture would have most likely resulted in a complete spiral fracture of the femur if my bone density was normal and instead of crutches I would have been looking at surgery.
During the examine (xrays and MRI), they discovered a deformed end of the femoral ball in each hip...........instead of being round about the size of a racquetball, mine are oval shaped (like an egg) with the smaller end going into the hip socket. At first they thought it was something I've had from birth, but since I never had a problem with the condition before this (competed at Olympic level gymnastics for 12 years) they pretty well concluded that the deformation is a result of the Acromegaly. To top it off, there is very little bone regeneration at the site of the stress fracture........now they are concerned that HGH inhibiting effect of the monthly shot ( Sandostatine for 12.5 years and now Somatulin) maybe inhibiting the bone growth.
Now here's the kicker. The deformed hip ball is now leaving my left hip very prone to displacement (popping out of the hip joint) if I turn the wrong way or shift my weight the wrong way..........it's usually just momentary displacement, but the other night it took about 5 minutes for me to literally physically lift my leg up and out till it slid back into position. My Ortho is talking hip replacement now, but my whole team ( Endo and Ortho) have concerns that the shot that controls my Acromegaly, may also adversely effect any bone regeneration around the hip implant. Nobody, including the med manufacture, seems to be able to offer a definitive answer one way or the other......
Just wondering if anybody has had a hip or knee replacement while on the Sandostatin or Somatulin shots and if you had any complications due to the Acro and your mediation treatament?
Just wondering if anybody else has experienced problems with their hips. Last summer I slipped in some mud and fell very awkwardly. The result was a stress fracture in the femoral neck (where the femur turns and goes into the hip socket). My Orthopedic surgeon was highly surprised as he has never seen a stress fracture in an Acromegaly patient. Considering that my bone density is twice the normal, he said that I was lucky in the fact that the stress put on the bone to cause the stress fracture would have most likely resulted in a complete spiral fracture of the femur if my bone density was normal and instead of crutches I would have been looking at surgery.
During the examine (xrays and MRI), they discovered a deformed end of the femoral ball in each hip...........instead of being round about the size of a racquetball, mine are oval shaped (like an egg) with the smaller end going into the hip socket. At first they thought it was something I've had from birth, but since I never had a problem with the condition before this (competed at Olympic level gymnastics for 12 years) they pretty well concluded that the deformation is a result of the Acromegaly. To top it off, there is very little bone regeneration at the site of the stress fracture........now they are concerned that HGH inhibiting effect of the monthly shot ( Sandostatine for 12.5 years and now Somatulin) maybe inhibiting the bone growth.
Now here's the kicker. The deformed hip ball is now leaving my left hip very prone to displacement (popping out of the hip joint) if I turn the wrong way or shift my weight the wrong way..........it's usually just momentary displacement, but the other night it took about 5 minutes for me to literally physically lift my leg up and out till it slid back into position. My Ortho is talking hip replacement now, but my whole team ( Endo and Ortho) have concerns that the shot that controls my Acromegaly, may also adversely effect any bone regeneration around the hip implant. Nobody, including the med manufacture, seems to be able to offer a definitive answer one way or the other......
Just wondering if anybody has had a hip or knee replacement while on the Sandostatin or Somatulin shots and if you had any complications due to the Acro and your mediation treatament?
deleted_user
I am 69 years of age. Have had acromegaly for at leat 30 years. Did not know of the disease until 8 years ago when the tumor was discover and removed. I am not receiving any treatment at this time. I had both of my hips replaced in 2000. At that time I did not know the source of the joint degeneration. I experienced no problems with the bone regeneration around the implant. I have experienced no problems of any kind relative to the two hip joint replacement procedures. But, at the time of my surgeries I was not taking any medications other than ibuprofen so my experience does not speak to the Sandostatin or Somatutin question. My wife just had a level-two discectomy with fusion. Since she is a diabetic her ortho put her on a bone growth stimulator in a effort to achieve successful bone fusion. It worked great. Total success. Good luck with your surgeries.
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