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Giant calcinosis


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#1 MaryFanPhilly

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Posted 20 March 2011 - 05:53 PM

Hello Folks,

It has been quite a long time since I posted, and am now living in California since the cold was too much for me to handle back east. You all have my hearty sympathy who've had to endure these past couple winters. Even here, I often need to wear gloves indoors.

However since moving here, I've had a calcinosis which has grown, and grown, and grown on my right index finger to the point where it has nearly doubled in size in the last year. It is so large that my knuckle is not visible on xray. All you can see are what look like shards of glass or rock salt.

The pain is so intense that the finger is completely useless. I cannot bend or straighten it. I can't type with it, flick a light switch, or even use it to help hold a cup, or a pen. I cannot use a knife and can hold a fork or spoon only with my other fingers, a tricky thing. If I accidentally tap it on something it can make me scream out loud.... stranger still, the first two joints are almost completely numb. How can something so numb be so painful?

So, I saw a hand surgeon, with an excellent reputation, to see if it were possible to remove it. His feeling is, he can try, but chances are I will lose my finger. He said eventually the skin will split and it will ulcerate, and at that time it will need wound care, but I could see where he was going. When I asked him point blank how long I would keep my finger, he told me either when the wound was uncontrollable or I couldn't stand the pain any longer.

My feeling is, this finger is useless anyhow, so I am considering having it amputated.

I have seen sclero patients who've lost their fingers. Has anyone else had to make this terrible choice? My gut tells me this is an awful thing, but so is living with this pain day in and day out.

Many regards to my fellow posters,

Mary
Diffuse sclero; diabetes; hypertension; GERD with Barrett's

#2 enjoytheride

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Posted 20 March 2011 - 08:53 PM

I have had a largish calcinosis on my finger joint but thankfully no where near as bad as your's. I have had one removed by a surgeon as it was keeping me from bending my finger. He did a good job for me.

Have you had it "debulked" at any time? It means that some of it is removed, which may delay future growth. I did that once. It slowed the growth but it did come back though so far not as bad.

I do want to wish you the best of results no matter what you choose to have done.

#3 Joelf

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Posted 21 March 2011 - 03:03 AM

Hi Mary,

It's lovely to hear from you again, but I'm so sorry that it's because you've been suffering so badly with the calcinosis on your finger.

I have Raynaud's, but thankfully have never had any calcinosis so can't advise you from my own experience, although I'm sure some of our other members will be able to. I've included a link to Calcinosis which I hope you'll find helpful.

I do hope you have a good outcome and that the dreadful pain in your finger is soon alleviated.

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#4 Shelley Ensz

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Posted 21 March 2011 - 10:08 AM

Hi Mary,

Welcome back, it is wonderful to hear from you again, although I'm sorry it's because of calcinosis.

I'm wondering, since you are in California, are you seeing the scleroderma experts at UCLA? Personally, I'd want to make certain to have advice from scleroderma experts before having any radical surgery done. It might be possible to remove the calcinosis (or a significant portion of it), without removing your whole finger. And they could advise you as to what they've seen with scleroderma patients who have had amputations, which I think is normally done because of gangrene instead of calcinosis.

I'm sending extra warm hugs your way in hopes that something settles this down for you soon.

:emoticon-hug:
Warm Hugs,

Shelley Ensz
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#5 Sweet

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Posted 21 March 2011 - 03:32 PM

Hello sweet Mary, it's so nice to see your face.

Goodness, I am so sorry about your finger. It must be a very difficult decision to make. Then again, if the pain is so horrible then maybe it's not. Just know you're in my thoughts, and hoping you'll make the decision that is best for you. :flowers:
Warm and gentle hugs,

Pamela
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#6 Amanda Thorpe

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Posted 21 March 2011 - 06:08 PM

Hello Mary

Long time no hear! It's great you're back but I am so sorry it's with this issue. I have never had calcinosis so can't say on the specifics, Shelley's point about checking the matter out with a scleroderma specialist is a god idea if you haven't already.

What I will say is that I can understand anyone amputating anything purely because of pain. I currently have 3 ulcers on my feet that can drive me bonkers. I went from 0 to 3 of them in 3 months and I know that anything on the digits is worse! I confess that I have fantasized about having a foot lopped off because no foot would equal no pain!

Please let us know how you get on.

Take care and keep posting.
Amanda Thorpe
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#7 Snowbird

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Posted 21 March 2011 - 08:29 PM

Hello Mary

Welcome back! I'm sorry to hear you are having such pain with the calcinosis.

I would also check with another doctor/scleroderma specialist, definitely good to get another opinion no matter what. It is a major decision you are facing and you will want to be sure that you have investigated all avenues fully. I hope you let us know how you make out and what you decide. Take care.
Sending good wishes your way!

#8 MaryFanPhilly

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Posted 22 March 2011 - 09:37 PM

Thanks for the input and it's good to see everyone here! As usual my rheumatologist shrugs his shoulders and says it's all part of 'my' scleroderma. It's hard to swallow that kind of response, and there is ALWAYS someone who knows more and I'm determined to find that someone.

Apparently if you catch them early on, they can remove them but they grow back, and because I have such poor circulation it's too risky. He has removed many but never saw one this large. I forgot to ask him if it can grow down into my palm because then I'd really be in trouble.

My feeling is, I spend more time keeping the finger out of the way and protected, I wonder if it would be much of a hardship to do without it. Or would it be a relief?

There's a local symposium this summer so I'll get some more information then. Surely they'll have a hand specialist.... on hand. Ha! I crack myself up! UCLA is something I've been considering Shelley, but it's a long way away (350 miles) - but eventually I'll make it there.
Lots of love and thanks,
Mary
Diffuse sclero; diabetes; hypertension; GERD with Barrett's

#9 enjoytheride

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Posted 23 March 2011 - 01:40 AM

Hi again- the one that the hand surgeon removed for me has not come back in 2 years. But the one he "debulked" has come back but at a much slower rate. It is no where near a bad as it was but it also took off the end of my finger. It is no longer round but square.
Everyone is different and the one you have sounds much worse than mine. I just wanted to let you know that they don't always come back.
Is UC San Francisco closer because they have a scleroderma clinic too?