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Is "debulking" a calcification good or waste of effort?


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#1 enjoytheride

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Posted 15 October 2009 - 05:26 PM

I had an area of calcification "debulked" about 6 mos ago. More areas of calcification have spread around the site of the surgery but on the whole it has made the spread much slower.

I have a much larger area over the first joint of the same finger and wonder what has been the experience of this procedure for other people. Has it ever successfully stopped calcification or just slows it down like my only experience indicates?

#2 Amanda Thorpe

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Posted 20 October 2009 - 06:12 AM

Hello Enjoytheride

I have never had calcinosis so have no presonal experience to call upon. I have had a look at the infomation here on this site and read:

no treatment has convincingly prevented or reduced calcinosis.

Lesions of cutaneous calcinosis were removed in four patients. Calcinosis was effectively removed using a high-speed dental burr. The results of hand surgery for systemic sclerosis are reliable, but goals must be limited and patient expectations should be modest

Have a look at the information on calcinosis which is where the above information has come.

I hope this helps and take care.
Amanda Thorpe
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#3 enjoytheride

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Posted 20 October 2009 - 06:41 AM

Thank you for the response,Amanda. I had read some of those reports but as they were pretty negative as to results, I was fishing for something that a member might have found helpful.
I guess the fact that no one had something to offer is meanful in itself and maybe I better let that one go. :emoticon-bang-head:

#4 JBG

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Posted 21 October 2009 - 04:12 PM

I've had 2 areas of calcification (right wrist and right forearm) removed 5 years ago during the same surgery. I have not had any calcium return in either area. I do have calcification on my fingers, both hands, but at this time I don't plan to have it removed unless they get more painful. Right now I take pain medication to reduce the pain. I have CREST/Limited SD.

#5 enjoytheride

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Posted 21 October 2009 - 05:51 PM

Thank you for you answer, JBG and welcome back to the forum :thank-you:

#6 Catty

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Posted 22 October 2009 - 10:48 AM

My name is Shirley and I have had SD for about 30 years now. My main problem now is Calcinosis. I have had about 15 operations over the years to remove them. They are very painful and come to the surface and then get infected. My main problem with Calcinosis now is in my fingers. I try to take care of them myself. I am scared to have surgery on my fingers because of the Raynaud's being bad there. My thoughts about the ones I had removed is, if the doctor gets all of it out there is less of a chance that they will come back in that place again. So it is according to how much trouble your doctor goes to.

I think of them sort of like a cancer: get it all out and you will have less chance it will return. So I would tell any doctor that if I had surgery again because after all, I am the one that lives with this problem and I have the experience of knowing what happened with my other surgeries and whether or not they came back. Surgery is the only thing that ever helped me and I appreciate the doctors so much that operated on mine and I let them know how much I appreciated it also. Most of them do not want to take them out period. I did a lot of begging over the years...lol...

Hugs,

Shirley AKA Catty

#7 Alice02

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Posted 23 October 2009 - 08:48 AM

Hi I can't agreed more with Catty, I too have calcinosis cutis for more than thirty years I lost count on how many surgeries I had over years. But, I did have surgery on two of them about several years, one on my arm, and the other one my leg they didn't grow back after surgery. I always dream if the same thing would happen on all of them. However, I have a lot of them on my both knees, and hips. I just had a very painful surgery on my left knee I am hoping every minute that they won't grow back again. And, yes most surgeons don't even want to operate on me to remove them. I am lucky that I have a dermatologist doctor for years, who never says no to me, and always helps me. He is wonderful, he just couldn't operate on my knee, because calcinosis cutis were too close to my knee cap. But he did send me to one of his colleagues.

On this note, it is definitively a terrible thing. They didn't kill me, but they certainly destroyed my quality of life. I'm sorry to sound so negative.

Much love,


Alice

#8 Catty

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Posted 23 October 2009 - 11:27 AM

Hi Alice,

Believe me when I say I totally understand what you have been through with these very painful deposits. I have had surgery on both of my knees. Both were FULL of deposits. It took me 3 months to get over each one. I walked with a limp for a while then it finally got better over time.

I have had surgery everywhere (just about) because of them! People who do not have them really do not understand how painful they are and how they can mess up your quality of life but good.I am very thankful to the doctors who operated on me but I always had to beg them.

PLastic Surgeons especially don't want to do it. They want to do boob jobs and face lifts cause that pays them more money...lol...it is the truth! Plus, these deposits are probably a pain for them to remove and they don't get paid that much to take them out.

One of mine got paid around $2,000.00 to take out a huge one on my left arm (It was 6 inches by 6 inches!). I hugged his neck and thanked him over and over. I am so sorry Alice that you and I and many many others have to deal with these things. Guess it can always be worse though. All we have to do is look around us. I am very thankful that I am in remission with this disease and I hope it stays that way.

It saddens me that they do not have one single thing to help us dissolve these deposits. If you ever find anything that helps you, send me a P.M. Please...lol...

Big Hugs from someone who understands sweetie,

Catty