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dslymtch

Hello, new member Dlsy from Australia

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Hello Everyone,

 

I'm from Australia-62 year young wife, mother, daughter, sister etc.

 

I'm due to have my 2nd operation for a mass on my spine due to Scleroderma and was wondering if anyone else has experienced this? I've had crest for 2+ years now have systemic Sclero.

 

Life sure has changed but I'm doing okay.

 

Hugs to all,

 

Dsly

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Dsly,

Welcome to the forum. I am sure you will find a lot of answers to your questions. Is the mass on your spine calcinosis? I hope your second surgery solves the problem.

 

miocean


ISN Artist

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Hi Dsly

 

Welcome to this helpful and informative forum. :bye:

 

I do hope the surgery on your spine is successful; I'm afraid I can't advise as I don't have any experience of your problem although like you I have Systemic Limited Sclero; unfortunately mine has affected my lungs.

 

I'm looking forward to reading your posts. :)


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,

 

It is written as synovial osteochrondromatosis? Last time it was on my lower back encasing the sciatic nerve and was almost completely removed.

 

This time it's on my cervical spine and doing a good job of wrapping around the nerve exiting from c7 and affecting my arm.

 

My legs don't move as good as they used to, due to nerve damage with the back operation.

:thank-you:

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Hi Joelf,

 

Thank you for your welcome. Sorry to hear about your lungs.

 

How does this affect your life? All my internal organs are good thus far.

 

Have a good day,

Dsly :thank-you:

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Hi Dsly,

 

Welcome to Sclero Forums! Synovial osteochondromatosis is a form of soft tissue calcification, which is a form of calcinosis. I mention that because many people here will be able to relate to calcinosis. I'm sorry you need to have another surgery on your spine. I send best wishes to you for a successful surgery and recovery!

 

Meanwhile, you have graduated from the Welcome forum into the Main forum now, so I am moving this topic there.


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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Hi Dsly

 

Thanks for your enquiry; :thank-you: I have received excellent treatment in the form of 6 cycles of IV Cyclophosphamide which did a lot to remove some of the inflammation on my lungs. Sadly they will never be perfect but I still manage to have a fairly good quality of life despite the fact that I am now absolutely paranoid about catching chest infections which always now go straight to my lungs. :unsure: :(

 

I'm very fortunate that I don't (as yet!!) have the gut involvement that some members have to deal with; I'm not ecstatic about my lungs being damaged but I don't think I could deal with bowel problems!! ;)

 

I do sympathise with your back problem; it sounds as if it's very painful. Here's hoping for a successful outcome to your surgery and a good recovery. :)


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 Dsly,

 

I have the lung involvement. What were you original symptoms for the back problems besides pain? I am curious because I can not stand very long before my back knots up and I have to sit down.

 

My daughter is checked periodically because she has Osteochronditis. I never connected this to any disease. She had one removed from her knee and one in her uterus. I guess I will have to do some reading.

 

Please let us know how you are doing. Welcome to the group.

 

Your friend,

Pawndy


Your Friend

Pawndy

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Hi Dsly,

 

Somehow I missed you sneaking into our forums, without giving you a proper welcome! I'm sorry that your CREST has has been causing such problems with your spine. I've never run across anyone with this particular problem before. I do wish your up coming surgery to be a success!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Dsly

 

Sorry to hear that you need yet another surgery on your spine. Just wanted to wish you good luck too and a speedy recovery to go with it. I hope you keep us updated on how you are doing. Take care.


Sending good wishes your way!

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Hello Dsly

Good luck with the spinal surgery.

I have a cyst on my spinal cord, called a syrinx, also at c6 - 7. The doctors haven't told me if its related to my systemic sclero. My internal organs are all affected by the connective tissue thickening, but I'm a lot better since diagnosis and starting on Cellcept (Mycophenolate mofetil) just over a year ago.

 

Let us know how you get on.

Hope you send some warm sunshine our way soon. Its too cold in the uk!

:flowers:

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