miocean

Calcinosis on buttocks

22 posts in this topic

Four years later...

 

After a lull in the multiplication of the calcinosis on my buttocks it seems to have taken on a life of its own. Not only is it increasing in amount and size, the pain from it is also. It is very uncomfortable to sit on a hard surface and now it hurts when I am laying down in bed. When I awake in the morning I am aware of the pain from it. I am very fortunate that it has not ulcerated or become infected.

 

I am in a study on calcinosis with my scleroderma specialist but all she does is look at it and measure it. Surgery is the only option yet she could not recommend a surgeon. I finally contacted the doctor that coordinated the removal of the calcinosis on my neck and have an appointment with him in a couple of weeks. I did not want to have surgery due to the risk of infection but I am afraid it is the only option. I asked my dermatologist about laser and he didn't think that would work.

 

Of course, I don't want to have it done this summer and ruin my beach time! I will let you know what I find out.

 

miocean


ISN Artist

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Hi Miocean,

 

Oh no, what a complete pain....in more ways than one!! :(

 

I'm so sorry to hear that the calcinosis has worsened again and that you may have to have surgery to correct it and I'm really hoping that it doesn't interfere with your summer beach time.

 

Please keep us updated after your appointment.

 

Best wishes,


Jo Frowde

ISN Assistant Webmaster

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International Scleroderma Network (ISN)

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Hello Miocean

 

I just had that, an ulcer on the derriere that is and it's just the end...literally. Thankfully it healed quickly and was higher up as it were, an area of morphea just became sore and open, no idea why but thankfully it was short lived.

 

I am sorry that I know what you know, calcinosis has no real treatment and often returns, that said maybe surgery would work for you, if not permanently for some time? What have you got to lose?

 

Keep us posted.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

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International Scleroderma Network (ISN)

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Hi Miocean,

 

Ouch, I hurt just reading about this.  And yours, too, Amanda. Just ouch, ouch, ouch.  :emoticons-i-care:

 

I figure, you might feel a bit better just scheduling the surgery. For after bikini season, of course.

 

I don't know about you, but I feel miraculously better every time I've been scheduled for surgery. Why, it takes me about two seconds, when confronted with the reality, to convince myself I'm just a hypochondriac and that whatever needs fixing is just a figment of my doctor's imagination, a mix-up of x-rays, or that when I waken tomorrow, it will be mysteriously gone.  The pain evaporates on the spot! Why, even my rupturing appendix suddenly quelled its angst and told me it was just a stray cramp and that I should not listen to the surgeon, as I was being wheeled down the aisle.

 

Therefore my theory is that the sooner you get the surgery on the books, the better.  You might enjoy a few weeks of numbing relief from the calcinosis, once it realizes it has been scheduled for extinction!  At least, that's my hope for you. 

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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The meeting with the surgeon went as expected today except it was the fastest doctor appointment I have ever had! No one in the waiting room, no forms to fill out as I was already in the system, and a quick evaluation. I have a CT scan scheduled for next week and then will make a follow up to go over a plan. He spoke about the risk of infection and that the calcinosis can come back, things I am well aware of. He also mentioned bringing in a plastic surgeon in addition to doing everything to minimize the risks.

 

I'll see where that takes me. I feel I am in good hands. I just don't want anything to interfere with all the plans I've made to live life to the fullest!

 

miocean


ISN Artist

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Hi Miocean,

 

I'm so pleased to hear that your surgeon's appointment went well and that you're feeling happier and more positive. I'm hoping that your CT scan is good and it does sound as if this particular consultant is on the ball and aware of the risks of infection.

 

Here's hoping for a good result!! :yes:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Miocean,

 

This sounds encouraging!  Finally maybe something that will improve things a bit for you. Plus good timing, too, as by dilly dallying a few weeks, bikini season might be over before your surgery!  :terrific:

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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