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Member
Posts: 37
Location: Fairfield Township, Ohio | Hi All!
I know I have been absent for a long time. Sorry! I would like to say I have found the solution to world peace or something equally as thrilling in this time, but it has just been normal every day stuff.
For those that may not remember me or Erin: Erin is 6 1/2 and had her VEPTR surgery done at Cincinatti Children's Medical Center Hospital in March of 2005. She was the first VEPTR recipient at that facility. Since then, she has had 3 expansions, the most recent being done this past June. She is doing very well and she is tall!
She had an appointment with her orthopedic surgeon today as a check up and due to the fact that she has been experiencing a lot of pain in the anchoring area of the rib-to-rib rod.
It turns out that the skin at that particular anchoring point has gotten very thin and has basically fused itself to the metal of the rod, so that when she moves around a lot, as a 6 year old is wont to do, it is pulling on the skin and causing the pain. So what are our options?
Well, Dr. C wants me to start to manipulate the skin around the anchorange in hopes of loosening it off the metal. It's not a massage but more of a gentle stretching and releasing of the skin - sort of like when you roll out pizza dough: you stretch it, then you lift up the edges to let it relax again, and repeat. Of course if somehow the skin tears, I am to get her to the hospital ASAP and they even gave me an "Emergency Bandaging Kit" (oil bandage, gauze pads, and Tegaderm) in case that occurs.
The other option is to excise the skin and then suture the area closed with the thicker skin from either side. He would prefer to do this at the next expansion, which will also be a replacement as the rods cannot be expanded any more.
I am wondering if any of your children have had this "skin adherance" issue and what you did.
She is also "a case" being presented to another another surgeon during a symposium next week. I have lost track of how many times her case has been presented to other surgeons.
I look forward to catching up with all of you and meeting the new faces.
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Expert
Posts: 3243
  
Location: Utah | Hi Gail and Erin! I emailed you on the other list, but just wanted to say HI and that I hope Erin does very well with the skin "manipulations". It should work, and then when she has another expansion, Dr. C should be able to pull up extra layers of tissue to place between the rod and her skin. Braydon had this done (no skin adhesions prior) and it was successful. My best and hopefully you'll pop in more frequently.
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Extreme Veteran
Posts: 599
Location: Southern California | Hi Gail,
We've experienced this on several occasions, but it's never been bad enough to require any intervention or manipulation as has been suggested to you.... Someone else recently posted about this "sticking" occurance thing, too--so you might want to search back a few weeks for input on that string of threads... For Alex, over time. the skin, scar tissue eventually released on it's own a nd we haven't had the problem of it tearing the skin or anything. Best of luck to you and your dear, Erin!
Wendy |
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Expert
Posts: 3970
Location: Plymouth, Pennsylvania | HI GAIL,
NOT FAMILAR WITH THIS IN REGARDS TO ZOE, BUT I HAVE HEARD OF
IT...
JUST WANT TO WISH YOU WELL, AND SAY WE ARE GLAD TO HEAR FROM YOU...
BUT I AM SORRY THAT SHE IS GOING THRU THIS....
GOD BLESS...
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Elite Veteran
Posts: 806
Location: Divide, Colorado | Hi Gail and Erin,
We haven't had experience with this personally, but I was curious if you used Vitamin E while doing the skin manipulations if it would help. We use it to keep Nikki's scars soft and to help her scar tissue. Maybe it would just help nourish it a bit? Just a thought ..... Hope all goes well! |
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Member
Posts: 37
Location: Fairfield Township, Ohio | Brenna,
Funny you should mention Vitamin E as my sister called me the other night and said the very same thing (she is a PT). Dr. C. had said we didn't need to use anything, but I think a little lubrication helps. I haven't been able to get to the store yet for the Vit E, so I used a bit of mineral oil. |
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Elite Veteran
Posts: 795
Location: Levelland, Texas | Kenzie also has skin fastened to her incision. Our private duty nursing all think it looks more like a keloid has developed, I e-mailed Lori in San Antonio and she recommended massaging it gently with Gold Bond. |
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Expert
Posts: 3243
Location: Utah | I forgot we used to use Vitamin E (we used the gel that came in a bottle - squeeze on). Very good stuff! I used it on my elbow scar - it helped keep the scar tissue moist. Braydon doesn't like anything touching his back, so we've just stopped doing much of anything. This should help, Gail. Like you said, if nothing else, it's lubricating and helping the tissues. Keep up the good work.
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Skin fastened to VEPTR
