Calcinosis!

[LucyJean]

Hello everyone, I would like some help with a dilemma. I have an appointment to have my right thumb 'debulked' this Friday. A good term huh?! Basically they are planning to take away some of the copious calcinosis in my thumb. I would really appreciate knowing if anyone has had any experience of this, good or bad. I searched through some of the historical posts on the site and they all said that no one would recommend surgery as the calcinosis comes back really quickly and thus the surgical risk is not worth it. I would appreciate all your thoughts on the matter.

Many thanks

Lucy

[Bagpuss1972]

Hi Lucy I'm really sorry I can't advise on this as I've only had minor calcinosis to date but wanted to wish you all the very best. X

[LucyJean in reply to Bagpuss1972]

Thank you, your support is greatly appreciated X

[Sarahbv]

What you've learned so far is exactly what I'd say. I had one lot done in the '80s and it came back so I vowed never to bother again. Some of it didn't but the bulk of it did, and worse than before so I'd say don't bother. Good luck making the decision. It's a tough one.

Sarah

[LucyJean in reply to Sarahbv]

Thanks Sarah, It is hard to know what the 'right' thing to do is and I don't really think anyone has the answer at the moment. I am still turning it over in my mind! X

[Monika]

Hi Lucy,

I had my thumb and two fingers done in early 2000 and, as Sarah said in her post, unfortunately it came back. However, I have spoken to people who had it done and theirs wasn't so bad afterwards. I now have loads of calcinosis in my elbows as well as my hands and feet and each year at my appointment with the rheumatologist we discuss "debunking" again but I'm not sure it will make it better so I am now leaving it at the moment - hopefully they will find a more permanent solution of dissolving the calcinosis in the not too distant future. I am sorry not to be more helpful and wishing you all the best for Friday. Much love x

[LucyJean in reply to Monika]

Thanks Monika, I really appreciate your comments. I have a left elbow like yours but as it doesn't get in the way and is mostly comfortable I don't want to touch that. The thumb is different because there is one area near my web space that is like a small boulder! About half an inch across. Very hard. Clearly a chalk ball rather than the toothpaste that usually comes out. Doesn't make holding anything easy. Still debating in my mind. X

[Monika]

Hi Lucy I know what that feels like as my thumb is so impacted that it is impossible to do anything with my right hand - have been quite adept at using my left hand! Please let me know how you get on and whether you decide to go ahead. Who is doing it? X

[LucyJean in reply to Monika]

hi Monika, excuse any dubious typing please as I am more one handed than normal. I thought I would let you know that I had my op. I have been debulked

I didn't go for the most radical option. I had most of Mr Boulder! removed and about 70% of the stuff packed into the stem of my thumb. It was really hard stuff. More chalk than toothpaste. I didn't want the thumb pad messed with as I thought that would be really messy and not worth it. We will now wait and see. Hand clinic review next Friday. Apparently the calcinosis has penetrated the skin too so it is likely to still look chalky on the surface. I have some 'souvenirs' in a specimen jar.

I had one of the Consultant Plastic Surgeons do it. He does a joint clinic with one of our Rheumatologists and I have known him for many years. I trust him as a surgeon.

All my best

Lucy x

[Monika]

Hi Lucy, I am glad it all went well and you made the decision to have it done. I'm sure it will feel much more comfortable once it has healed. Please keep in touch over the months so, if you feel it has been a success, it will help other people to make an informed decision whether to go ahead and have it done. I am under the Royal Free - is this is where it was done? Sending lots of love and healing for a speedy recovery xxx

[LucyJean in reply to Monika]

Thanks Monika, I also hope that it is going to be more comfortable and functional...and not come back too quick at least! I am in Norwich. So I come under the Norfolk and Norwich University Hospital. Lx