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Margaret

A Tied and Tangled up mess!

16 posts in this topic

Hi Everyone,

 

Well, the good news is that Gareth's surgery is finished and his neck vertebra are replaced with cadaver bone and metal plate. He has mobility in legs/arms and could answer the doctor that we had 6 cats after coming out of anesthesia.

 

The bad news, like Kamlesh, is that his internal body is being taken over by the scleroderma/UCTD.  The surgery was suppose to be 2-3 hrs.  It lasted 7 hrs!!  The doctor got in and found that his esophagus, trachea, and aorta going up his neck was one balled mass of connective tissue.  He told us it took over 2 hours under a microscope, to snip away the adhesions just so he could work on the vertebra!!  He was not prepared for that and had never seen anything like it before.  I am very curious as to what the rest of his insides look like!!

 

I'll stay the night, at the hospital, with him and he will probably be discharged tomorrow. He's only got a 1-2" incision at the crook of his neck.   He'll have to wear a neck brace during the day for a week or two, depending on pain. 

 

Take care, Everyone.

Margaret

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Hi Margaret,

I am happy to hear Gareth came through his surgery and hope that his recovery will go smoothly. That is bizarre about the way his insides are though. It never showed up on any of the pre-testing scans or anything?

 

Thank your for sharing and give Gareth our best!

 

:hug-bear:  :hug-bear:  :hug-bear:

 

miocean


ISN Artist

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Hi Margaret,

 

I'm so pleased that Gareth's had his surgery successfully and hopefully it should improve his pain, once everything settles down.

 

The state of his insides is something else, though!! The amazing thing is that he's been able to cope so well, despite his gut being totally tangled and he looks so fit and healthy, which belies everything that's going on within!

 

Please give him a special hug from Robert and myself and wish him a speedy and successful recovery.

 

:hug-bear: :hug-bear:

 

Our best wishes to him,


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)

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Hi Everyone,

 

The doctor came in for a chat today and checked up on Gareth.  He said it was like cutting through wood around his tissues.    :wink:  Not the soft, pliable connective tissue one usually has.  He said he had to take multiple X-rays during it to pin-point exactly where he was through and how much deeper he needed to go. He also said he had his team on some Medical internet site searching for scleroderma related issues in surgery.   :wink: Gareth may have the UCTD label, but he said his insides are harden like wood and that is scleroderma. I did ask him to mail a copy of his report to his new rheumatologist.  Gareth had a horrible night and morning, vomiting from the anesthesia.  Tonight he is much better and doctor said he could go home tomorrow, barring any complications tonight.

 

Take care, everyone,  :thank-you: :thank-you:  for all the thoughts and well wishes for Gareth

Margaret

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Hi Margaret,

 

I'm delighted to hear that Gareth has had his surgery, and that he'll be able to get out of the hospital tomorrow. I'm sorry the surgery was so complicated by internal fibrosis. I sure do hope this helps to reduce his pain!

 

:hug-group:


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 Everyone,

 

He's home -- yeah!! :jump-for-joy: I had my arteries mixed up, though. It wasn't the aorta but the carotid artery that was tangled up with the trachea and esophagus. The doctor certainly did not want to nick that!! Anyways, about his insides. The gastro doctor said last February that his esophagus looked like a twisted, curly straw from the distortion caused by hardening. Now, I hear the extent of damage caused in the neck area by the hardening/fibrosis. Seriously, I am concerned about how much more damage he has on the inside. :dont-know: My sister said I should have a PET scan done and I'm seriously thinking about it!!

Take care, Everyone.
Margaret

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Hi I am glad Gareth is doing good; I hope he gets out in the morning. When I had my neck surgery I was in for a week because I got pneumonia; it was a side effect of the scleroderma. My surgeon said everything went well with mine except they had to straighten my throat to get the intubation tube in so I had a sore throat. My swallowing issues were quite a bit better for awhile but are starting to cause a few troubles again.

 

When I got home it was only about two weeks and I was back to my sewing. I hope Gareth recovers as well as I. did.
Please give him my blessing :hug-bear: :hug-bear: :hug-bear::balloons::yes: and a few of the good things on here.

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So glad that he has got through the surgery and is home. I do hope he recovers quickly from the surgery.

 

Buttons

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Morning Shelley,

 

He is doing VERY well.  He only wears the neck brace when up and around during the day, per doctor's orders.  I keep asking if his legs or shoulders hurt and he says no.   :yes:    He is sleeping though the night -- ALL NIGHT -- no waking up and asking for pain meds !   Another   :yes:   !  

I had to take him back in, on Monday, due to an allergic reaction to the tape used to cover the incision, Tegraderm.  It's the only one that he had not had a reaction to, in the past, but that changed.  That was totally gross; it was beet red, blistering, and pussing.  He also had signs of post op pneumonia, so the doctor put him on antibiotics as a precaution.  He felt well enough last night to go to his Halloween party.  He wasn't about to miss that one!!  :lol: :lol:

 

Hope all is well with you.

 

Take care, Everyone.

Margaret

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Hi Margaret,

 

That is really good news for Gareth; I'm so pleased to hear that he's not suffering with so much pain and is feeling a lot better. Sorry about the pneumonia, but hopefully that's under control now.

 

I do hope that his improvement continues and that he enjoyed his party! :bravo: 

:hug-group:

 

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)

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Hi Margaret,

 

I'm delighted that Gareth is recovering so well from the operation and feeling so much better!  What a huge relief that must be for all of you.  And I'm tickled pink that he got to go to the party!

 

:balloons::happy-dance-line::hug-bear::jump-for-joy:


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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It is wonderful to hear how well Gareth is doing since his op, it must be such a relief to you knowing that he has so much less pain.

 

Buttons

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Good 'ole Gareth, takes it all in stride, like the pro he is! Okay, I know, no one wants to be a pro at this but hey!

 

I am so glad he's home and well. Please remember to give yourself a break.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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