Saw my neurosurgeon yesterday.

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I had been having a lot of pain in my neck in 2008; I had a prosthetic disk put in c5-c6 in my neck and I have never been out of pain since then. Now the surgeon is going to remove that disk and do a fusion at that level; he is also going to remove all the bone spurs in my neck that has formed around the last surgery.


First of all he has to contact my sclero specialist as he knows little about scleroderma and my sclero doctor has done all the tests recently that the neurosurgeon would need to do. I will be in a hospital instead of a surgery center as I have lung involvement with my scleroderma and am breathing in the 80% range. I am only the second sclero patient he has done this type of surgery on, so I am happy that he wants to consult with my sclero doctor. The surgery will not be until after the New Year, maybe January or February.


I am just hoping that we do not have to work with workmens compensation this time as it can be a real headache until after the holidays as I have some family obligations.  The original injury was from a work related incident in 2007; I had the neck injury and I also fractured my skull. The doctors think that is where the scleroderma came from, but so little is known about it


I hope everyone here has a great holiday; I plan on not worrying about all of this until after the New Year.

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Hi Quiltfairy,


I'm sorry to hear that you're having to undergo surgery; the pain in your neck must be very debilitating and I expect it will be a relief for you to get something done about it.


It does sound as if your neurosurgeon and Sclero expert are prepared to work together, which is a real comfort, as it will mean that you should get the best treatment possible.


I do hope everything will go okay for you and please do let us know the outcome of your surgery, when you have it.


Kind regards,

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 Quiltfairy


Sorry to hear your needing more surgery on your neck but even with those discs fused you should still have plenty of movement afterwards. I myself had to have 3 discs removed (all at once!) and titanium plates put in place to fuse the bones, it all seemed very scary at the time but my neurosurgeon like yours contacted my consultant about the Scleroderma aspect and everything went well. I had c6-c7, c5-c6 & c4-5 removed along with spinal cord decompression & removal of bone spurs. The only issue I have is when I look up which is slightly limiting but not too bad to stop me doing things. 

Hope you get get sorted soon.



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I hope to have the surgery shortly after the first of the year.   I take strong pain meds, it has helped most of the pain from the scleroderma but not the neck pain and there are times it is hard to get comfortable enough to sleep so I do hope it helps that.


Thank you for your replies.


Buttons it is nice to know I am not alone in this it gives me hope that things will get better.

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