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Calcinoid Mass Removal


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#1 ladyfay

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Posted 11 May 2010 - 07:47 PM

Along with other scleroderma complications, I have unfortunately developed a dangerous calcinoid mass in my buttocks that continues to grow at a rapid pace. My orthopedic oncologist says it requires a "very risky" surgery to remove, risky because the mass is very close to and threatening major arteries. This would require several follow-up surgeries to make sure they remove every bit of the mass.

My rheumatologist, a scleroderma specialist, agrees that surgery is the only way to remove the growing calcinoid mass.

Has anyone had this type of condition, and can offer any insight or advice?

Also can anyone recommend a doctor for this type of surgery, just to keep my options open? I live in Oregon.

#2 Catty

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Posted 12 May 2010 - 03:32 AM

Hello...I am so sorry you are having this problem sweetie. You called it a calcinoid mass...I am assuming you mean Calcinosis?
I had a huge one removed from my lower left arm...was 6 inches long...about 6 inches wide. It was huge. I did fine with mine...a plastic surgeon took mine out...I live in Alabama. He did not want to do it...I insisted. Where it is located on your body is very important.
I wish you the best if you have it removed. Surgery is the only answer for these things. It is also very important to be sure to get it ALL out if possible. In saying all of this...I am assuming you are talking about calcinosis.
Good luck!
Shirley aka Catty

#3 Sweet

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Posted 12 May 2010 - 04:42 AM

Hi Lady,

Welcome to the Forums. I'm sorry to hear about your recent issue with calcinosis. I've never had a problem with them, but I know many have, and I'm sure they will chime in soon. Shirley who has already posted to you, has had MUCH experience with it.

I wish you the best, and please keep us posted.
Warm and gentle hugs,

Pamela
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#4 Catty

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Posted 12 May 2010 - 05:56 AM

You got that right Sweet! LOL...I have had way too much experience with it....
Speaking of surgery...I have had about 15 operations because of calcinosis....
Hugs,
Shirley

#5 Amanda Thorpe

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Posted 12 May 2010 - 10:23 AM

Hello Ladyfay

Welcome to the forum although I am sorry it's because of such an unpleasant problem. I have never had calcinosis so can't help but many here have and will no doubt join in.

Take care and keep posting.
Amanda Thorpe
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#6 ladyfay

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Posted 12 May 2010 - 08:18 PM

Shirley:

Thank you (and the others) so much for responding. I feel lucky to have found this forum that has some folks with real experience. Sorry to hear that you have so much problems with calcinosis, and yes, that's the term they used with my condition. I'm very concerned that I have the right doctor for the surgery. Any ideas about how to know I have the right one? Is the one you mentioned in your state a good one to contact, or can you suggest anyone with good calcinosis & scleroderma experience? I also have Thalassemia minor blood condition, which is a complicating factor.

As mentioned, the surgery will be so risky because the mass is very close to the artery, so the chance of fatally bleeding out is very large.

My calcinosis is also very bad in my fingers where I have Raynaud's Phenomena. Calcium deposits are constantly bursting through my fingertips, usually right under the nails. The pain is sooo bad.

Crazy days,
Ladyfay

#7 Catty

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Posted 13 May 2010 - 04:25 AM

I know what you mean about your fingers I also have them in my fingers. I started out having them in the tips of my fingers but I don't have them there anymore they are all in different places in my fingers but are not terribly noticeable unless I point them out to people. I use a lot of bandaids.

The Plastic Surgeon that took mine out in my arm did not want to do it so I could not recommend him to you. He had Never done that type of surgery before.

You just need to ask around to see if you can find someone who knows something about SD at least although my doctor did not know anything about SD and did a good job. The doctor that did mine had never operated on anyone with it before. I know how scared you must be to find a good doctor and in making the decision to do this surgery but you are the one who suffers with it and you will have to make that decision however hard it will be. I feel like all calcium deposits are close to arteries and nerves. I found that with the doctors I went to if they did not want to do the surgery that they would always come up with an excuse
not to do it BUT I was at the end of my rope hon...mine was large...infected...killing me...making my life miserable. I had to do something. I was living off of antibiotics. Good luck with your decision and know that I do know exactly what you are going through with.
Hugs,
Shirley