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Osteoporosis board


[QUOTE=mmee;3496355]Hi, lenormandista,
Did you ever get to have your surgery? If so, how did it go?

Hi Mmee -

Yes - I had surgery a week ago. The worst part for me was reacting to the anaesthetic afterwards, but I always do, and it wasn't the worst reaction I've ever had to it. It was also pretty scary going to Florida on my own, but everyone at Tampa General was super-nice, and so was everybody at the Hilton Garden - they even went out and found some chicken soup for me afterwards, cos that was all I could manage to eat. So if you do end up going there, it's a good place to stay, and again, everybody at the hospital is terrific too. Just wear short socks because they put your hospital ID bracelets round your ankle.

I was kind of scared pre-op, partly because I was alone (I'm not American), and also they couldn't localise the tumour even on the scan in Tampa. Dr Norman is both very kind and an excellent surgeon - we talked a bit and he said he thought it was about 85% he'd find the tumour if we went ahead with the surgery. Since I've had everything from heart arrhythmias to osteoporosis from this, I said yes. He did find it - it was really small and probably had been there only five years (still a long time but about the same time that I started getting the heart symptoms and total exhaustion).

Interesting good thing: The excruciating bone pain resolved that night. I also have fibromyalgia and RA, but after I got PTH disease I had such bad pain in my hip that it would routinely wake me up at night and I'd need to take morphine and then again in the morning - yes that bad. It's gone and hasn't been back and my overall pain levels have decreased.

The rest of it I think is going to be a pretty long haul. I'm still tired, and still having some discomfort in my neck, shoulders, and upper chest - no sore throat, though, that only lasted the first day, and this isn't really pain pain, just more sore from surgery (mine took about half an hour, which is long for them but I am so glad I went there - I don't believe anyone else would've found the tumour).

Still don't have my brain back in fully working order and that's my big concern but the few people I've talked to who've had this surgery say that's months to years to return, and as I said I'm still kind of tired and spacey.

No massive other symptoms (I had a little shakiness and twitching - not much - a couple of days, so took an extra calcium pill - it takes a while for your other glands to wake up so just bear with it), but I don't feel 10 years younger or like a new person or anything - I know it's going to take time. But I was totally shocked that the bone pain went away and stayed away that fast.

If you end up having to go there, well, I guess it's always a little scary but they definitely know what they're doing, and they're kind. Also, I really do only have a little tiny wound - a bit under an inch.

I think I'm going to be taking it easy for some while yet, mostly praying that my cognitive ability returns. I reckon if I stay on the calcium and he said after the third week also take multivitamins there's a good chance the osteoporosis will reverse and I'm not having heart symptoms anymore either but the MVP and left ventricular atrophy will still be there - at least they won't progress - and no more wild arrhythmias.

Put me in the 'I know it's going to take time, but I'm cautiously optimistic' category. And I am really glad that I had it done - I think I would've died the symptoms were so bad when my calcium spiked before. It never went super-high - maybe the highest was about 10.8 in American numbers and around 10.5 almost all the time and my PTH was always normal, but it doesn't take much excess calcium to really mess you up.

I hope it goes well for you if you have surgery too and I hope we *all* get better soon!