Trey had his carpal tunnel release surgery today on both hands. The surgery was successful in that the surgeon was able to do the release and take out the GAG buildup in the carpal tunnel, however, the nerve in his right hand has been compressed for so long, that she doesn’t think Trey will be able to move his right thumb again (she tested his nerves during the surgery and with the most juice, could barely get a flicker out of his right thumb).
When we went for the complex upper limb consult on November 7, Trey was able to put his left thumb and pinky together, but he was not able to connect his right thumb and pinky. The plastic surgeon said she did not know if the surgery would help this or not because (from my lay person understanding) any nerve compression can lead to permanent damage which means that the communication between the nerve and muscles go and do not come back. The longer the compression, the higher the chance of permanent nerve damage.
So it looks as though Trey does have permanent damage in his right hand. His left seems to be okay. And although Trey has never complained of pain, numbness or tingling in his hands (it was the nerve conduction studies that told us his nerves are compressed), which is common for all kids this age who have carpal tunnel, Hunter Syndrome or not, now hopefully, the numbness and tingling will be gone in both hands, and give him increased fine motor abilities.
I have been told (and it makes sense to me) that this numb/tingling feeling in their hands is so normal for them, they do not know anything could be or should be different. If anyone has alternative knowledge or has tips on how to get damaged nerves back, please email me!!
In my experience, and from what I have been told, carpal tunnel testing for Hunter Syndrome in North America is recommended to start at age five at the earliest (Trey turns five in March). In Europe they start testing earlier. After Dr. Muenzer spoke at the International MPS Symposium in June about starting to test for carpal tunnel syndrome in Hunter Syndrome earlier than age five, I began asking Trey’s doctor’s to test for it ASAP. They listened and here we are today.
We were referred for nerve conduction studies in July and didn’t have carpal tunnel surgery until today. In addition, every single appointment we’ve had have been cancellations: the nerve conduction tests, the complex upper limb consult, and the surgery, and it still took six months to have the surgery done. So if I have any advice to newly diagnosed parents of an child affected by MPS II, it is: have your child tested for carpal tunnel syndrome ASAP. We caught Trey’s too late.
