What is Acromegaly
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). ...
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Soft Tissue Issue
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I was diagnoised in August 2007 and since then I have had multiple blood tests and six MRI's..I recently saw my neurosurgeon and he showed me my MRI and said that my tumor encompassed one quarter of my pituitary so they are still forming a plan of action.
Well, in these eight months of no treatment , I now do not look like my photo on my license..My joints crack like when you crack your nuckles when I get up in the morning..Endo says it's fluid build up..I have gained eighty pounds, my hands, feet and head are growing and it is getting difficult for me to walk..Is this normal?? I am still young and I don't think so..My nureo is suppose to be the best so what is taking so long and will I go back to me original self after treatment? Posted on 04/10/08, 09:04 am |
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I know it can be frustrating. A friend recently told me to remember that doctors are only "practicing" medicene. LOL. My neuro recommended surgery immediately after my first MRI because the tumor was on my optic nerve and affecting my vision. It seems from this support group that doctors outside of the US try medications and injections before surgery. It apprear that in the US, most doctors do surgery first and then treat the residual tumor if necessary. It's my understanding that feature changes are very gradual. You have had many MRIs. Do the doctors think the tumor is growing rapidly? We are still young and this should be the best time of our lives...not just one doctor appt after another....I thought my surgery would be the end but it seems to have been the beginning to the rollar coaster ride of trying to maintain some semblence of good health...Hope you get some direction from your doctors soon.... 
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Tim, I was diagnoised in Sept.2007 and I had surgury as soon as my surgurn could get all the bloodtest done and make arrangements with the hospital. I had surgury in Nov.2007.My joints did the same thing yours do I could just lay down in the bed and they would all crack.I am some better with that since surgury, but not really, I can move just about any joint and pop it, I do have shoulder pain alot when I work it hard. I lost 10-12 lbs in the first 3 days after surgury, fluid build up.My tumor completely enclosed my pituitary and you could not even see the hypothalmus.My face has gotton back to where I look more like my self now,but it is taking a while.If your bones are still growing they will not change back, but the tissue swelling and muscles do change..DEBBIE1253
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Hi Timjo,
I think that you really need to get a new endocrine team, have you had a second opinion, my daughter also had 2 ops transphenodially, plus 5 weeks of RT because it was pressing on the optic chiasm, her face went down as soon as she came out of surgery, she still has a lot of on and off jaw pain, but I think this was the damage before diagnosis, doc sending her to a special dental clinic, so it goes on, you need to get a new team, Good luck let us know how you get on
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Hi Again,
Also< I find it odd that you have not had any medication, especially as you say you feel you are growing and changing, soft tissue does disapear, but bone stays the same, Take care
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Hi Timjo,
Something doesn't sound right about your surgeon not scheduling the pituitary surgery, also, you need medication now before your condition worsens. I agree with BJOS, in the US (&CANADA) they always recommend surgery and medication is used if your HGH & IGF levels aren't normal. Radiation is done if the tumor is inoperable, or is sometimes done for residual tumor. Get a second opinion sweetie. xx Mish
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