Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

Neck surgery


  • Please log in to reply
7 replies to this topic

#1 Margaret

Margaret

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,001 posts
  • Location:Pennsylvania

Posted 14 September 2015 - 06:42 AM

Hi Everyone,

 

After what seems like an eternity, we have finally gotten all results from X-rays, MRI, and neurosurgeon on Gareth's neck issues.  The MRI showed severe neural stenosis/compression of spinal nerve from C3 to C7.  Myelomalacia is also present from C4 - C6.  The severity of the arthritic degeneration has the doctor confused.  He showed none of these changes on his neck X-ray 3 years ago -- none of it!!  I have Googled to see if this is an autoimmune issue connected with his UCTD but couldn't find anything.  Any thoughts or words of wisdom?

The doctor said his severity is the reason for the chronic neck, shoulder, and leg pain/weakness.    :crying:

The good news is that the doctor remembered Gareth was going on vacation and said he would schedule surgery after we get back.  Surgery will be in late October, with no brace afterwards, but 8-12 weeks of recovery at home.  I said to my hubby *why can't he just break a leg or arm, like a normal person his age?!?!?*   :lol: :lol:

 

Thanks to all for your help and advice,

Margaret

Mom to Gareth,  27 years old, DS/ASD



#2 judyt

judyt

    Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPip
  • 640 posts
  • Location:Auckland, New Zealand

Posted 14 September 2015 - 11:58 AM

Oh Margaret!,

 

Lots of us would say that about our kids - "why can't they do something like normal people do??".

 

I wonder sometimes what is normal!   We have an adult son who has his own way of reacting to the world, and we too wonder why he can't just see and do things the way others do.   But then he wouldn't be him would he?

 

My heart goes out to you and I just trust that all will go smoothly with Gareth's surgery.

 

Best wishes from the upside down side of the world

Judyt



#3 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 15 September 2015 - 06:08 AM

Hi Margaret,

 

Poor Gareth, no wonder he has been in such pain; it does sounds as if the arthritic degeneration is very severe now. It does seem to have progressed very quickly; I found the same thing with my arthritic hips, which suddenly became very much worse in a comparatively short time.

 

I do hope the surgery will improve things greatly for Gareth and that the 8-10 week recovery period passes very soon. (Having just unfortunately broken my wrist, Colles fracture, the recovery time is about 6-8 weeks for that! :wink: :sad: )

 

Best wishes,


Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#4 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 15 September 2015 - 06:14 AM

Hi Margaret,

 

I think of you two often, and my heart always goes out to you!!


Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,274 posts
  • Location:Minnesota

Posted 16 September 2015 - 06:05 PM

Hi Margaret,

 

I'm terribly sorry that Gareth needs to have neck surgery.  I sure hope that it will fix things, and reduce his pain level.

 

It is absolutely delightful that you all get to go on vacation first!  I'm sure you'll have a terrific time, and cherish every moment not being spent in doctor's waiting rooms!

 

Please give Gareth an extra hug, just from me.

 

:hug-bear: :hug-bear:


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.

#6 Buttons

Buttons

    Senior Silver Member

  • Members
  • PipPipPipPipPipPip
  • 610 posts
  • Location:UK

Posted 23 September 2015 - 07:34 AM

Hi Margaret

 

Sorry that Gareth will need surgery on his neck but I'm sure he will feel much better from the pain point of view once he has recovered. I have had this surgery and did find it helped with my pain. I do hope you have a good holiday.

 

Buttons



#7 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,274 posts
  • Location:Minnesota

Posted 09 October 2015 - 08:16 AM

Hi Margaret,

 

I'm thinking of you and Gareth, and hope that he is enjoying (as much as he can) these last few weeks before surgery.  I'm delighted you were able to go on vacation, how refreshing and distracting for everyone, prior to a big surgery!

 

I'm sending more hugs for Gareth.

 

:hug-bear: :hug-bear: :hug-bear:


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.

#8 miocean

miocean

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 10 October 2015 - 03:32 AM

HI Margaret,

 

I am hoping you are enjoying your vacation and the Gareth is having a great time. I hope all goes well with the surgery at the end of the month and that the recovery goes smoothly. 

 

By the way, we all know that nothing about scleroderma is normal!

 

:hug-bear:  :balloons:  :hug-bear:  :balloons:  :hug-bear:  :balloons:  for Gareth!

 

miocean


ISN Artist