Scar Tissue Scraping

[admin]

Does anyone have experience with scar tissue scraping only. I think it is actually called neurolysis, but without grafting or transplanting? Please help me with any information that you may have on this, whether it is something you have been through or something you have heard. I am desperate for information. Thank you.

[admin]

Hi! My name is Renee.
My son, Michael, he's now 2, had neurolysis (can't spell it) when he was 9 months. They were planning to graft and said that when they did some tests during surgery on his shoulder, it seemed to have enough reaction to the test, (as much as they felt the grafting surgery would have done) and so, they just cleaned the scar tissue area, where the injury had occured at birth. This was supposed to, over time, help the nerves work better. This was more than one year ago and for sure he has had improvement but not a big deal but some. He does use his arm somewhat. Hopefully soon, he'll be going for shoulder surgery and tendor transfer.
The first doctor I originally went to was, at least in my opinion, not as specialized in this injury and had done very few grafting surgeries so I don't know if I had gone somehwere else, if indeed gafting would have bee done. Hope this helps. Write me again if you need to. Sincerely, Renee

[admin]

How do you know if the progress you have seen over the past year is due to neurolysis or the natural progression that many of our children continue to see over time? I would imagine it would be hard to truly know what to attribute it to? If you think the progress you saw came from the neurolysis, what type of progress was it? Did you see something very soon after surgery that made you correlate progress to the neurolysis?

Thank you very much for sharing and helping others gather information.

[TNT1999]

My daughter's first surgery (primary) involved nerve grafting (as well as neurolysis). Then, she had a second surgery 5 months later. The 2nd surgery was going to possibly involve nerve transfers, depending upon the results of the intra-op EMG. The EMG showed some slight biceps activity, so TCH took a conservative approach and rather than doing nerve transfers at the time, they just did neurolysis. I don't know how much the surgery helped, but I do know that it did something b/c when Nicole (15 months old at the time) was in the recovery room, we saw some flickers in her fingers -- more than we had ever seen before. It was pretty cool b/c although it wasn't a lot, it was something immediate for us to see and know that the surgery definitely had some benefit. Of course, everyone's results will be different, but I remember that when we mentioned this to the dr., he wasn't surprised and said that was not uncommon.

Generally, I think it is hard to know exactly what to attribute progress to, except in cases like that where you see immediate progress (as we did with the Mod Quad, on a much greater scale, post splint removal).

-Tina

[njbirk]

My experience with this is similar to what Tina describes with Nicole.

After the mod quad surgery, where I had muscle and tendon transfers and releases as well as nerve decompressions and neurolysis, I had immediate changes that can only be attributed to the decompressions and the neurolysis.

As soon as I came out of the anesthesia, I moved my fingers and immediately was able to touch the ring finger to the thumb and spread the fingers. I had not been able to do either of those things my entire life (I had the mod quad at age 47). This can only be attributed to the neurolysis and it was an unexpected and joyful change.

Nancy

[BrookesMom]

My daughter Brooke had scar tissue removal when she was 15 months. This was her only surgery. After surgery I immediately saw improvement in her range of montion. Her strength is still very weak. I know that part of the problem, as Dr. Karen Pape explains, is that she is in the habit of using her noninjured arm and it is difficult to see improvement. I have been working with Brooke to get out of her bad habits and have seen improvement.

Cheryl

[admin]

Thank you all for responding to this topic. I still would appreciate any more info that anyone has on this. My sons surgery is soon and I am still in agony about if I am making the right decision. I truly appreciate the support that I have found here. I am sorry that I HAVE to post as a guest for now. Thanks for understanding.

[admin]

I was wondering how the recovery is after neurolysis? Is there a lot of pain? How about the therapy after? How careful do you have to be not to reinjure the nerves?

[Joni]

My daughter went in for explorative surgery with anticipation of necessary nerve grafting and they ended up just removing scar tissue. Before surgery she didn't have any hand/finger movement, and since she has gained a weak grasp between her thumb and pointer finger. She also gained a little sensation on that part of her hand. Everything else is still dead so to speak. We are planning tendon transfers after shes 6 or 7 years old. I'm glad we did the surgery and don't have any regrets. It gave us the full picture of what was avulsed, etc. Also I know her movement improved from the surgery because the same night she had the operation, there was a paper towel next to her on her bed and she managed to pick it up, when the day before she had no finger movement. It was awesome. Also recovery wise its not that bad. My child was wrapped in a bandage for a day or two then only had to keep her incision covered for like a month or something. It would have been much worse to have been splinted like what they do when nerves are grafted, etc. Just sharing our experience and my opinion of our situation. You need to trust your instincts and good luck with your decision. Joni

[Karen Hillyer]

Dear Guest
my heart goes out to you at this very difficult time,
we can only base our decisions on what we know at the time and go with our gut instinct as parents.
we waited for 6 months before our son had a nerve graft, he too, was down for an exploration with a possibility of a nerve graft if it was necessary (this was 12 years ago) he had regained very little movement and by the time he was 6 months he still had no active elbow function at all - there was virtually NO information available to us as parents 12 years ago, and I'm afraid that by todays standards we jumped in feet first with little or no information or support.
We did know the surgeon had performed 9 other nerve grafts ( yes really, only 9!!) and that he had achieved some success with those patients.
We handed our son over and he had 4 grafts done
it took 12 months before any function returned and I suppose I will never know if he might have regained that function anyway- or if it was the surgery.
I suppose I have convinced myself that the surgery did do the hard work and fix the nerves, but I do know that I have never regretted the decision we made for our child.
Do what YOU think is best for your baby - and try not to look back and think "I wonder what would have happened if......"
I wish you well with your decision, I am sure you will make the right one for your family .. whatever that is.
Karen