United Brachial Plexus Network, Inc.

My daughter is 8 yrs old, has a RBPI and has seen Dr. Nath from TX for the first time in Newark last week. We have never had any surgical intervention. He is recommending the Mod Quad followed by the Triangle Tilt. My daughter does have limitation but is really "functional" (Some people don't even notice). I am really nervous about this especially since she is so much older. Has anyone had this surgery as their first surgery at an older age with great results? Do they last? What about the scarring... I am scared to death of making a bad situation worse. Also if anyone has been using the muscle stimulators, I would love to hear about your experience. Thanks

I recommend that you get a second or third opinion about surgery. Clearly you are not sure about this option. You are registered in NY. Dr. Andy Price is in the city and does surgery out of the Hospital for Joint Diseases (though he has his own practice). Also nearby is Scott Kozin in Philly (at Shriners) and Peter Waters in Boston (Children's Hospital Boston).

Even if you do decide to go with Nath, the second and third opinions will give you more information. Sometimes the multiple opinions are all the same (surgery is the best option) and sometimes they are not (some say do surgery, some say don't). But they all give you more information and that is ALWAYS a good thing.

good luck,
claudia

Your situation sounds similar to my daughters. She is 6 with LBPI and never had surgery (until 3 months ago) but has always been fairly functional. I kept asking doctors throughout the years if any surgery was available and all they would tell me was to keep up the physical therapy. I finally sought out Dr. Nath at a seminar he was having in Las Vegas. He recommended the Mod Quad and the Triangle Tilt (which Dr. Nath explained would leave scarring up her entire arm.) When I mentioned to my daughter's health insurance carrier that I was seeking Dr. Nath's help because no other doctor wanted to give us other information, I was referred to a Brachial Plexus specialist team in Los Angeles through Kaiser. We met with Dr. Edgerton and Dr. Pearl who wanted to do a surgery on my daughter called "Arthroscopic Release and Latissimus Dorsi Transfer". The doctors felt this was the best solution for my daughter, however she should have had the surgery a few years earlier. Anyway, after much consideration, I decided to go with Kaiser, and the results have so far been great. She has a tiny scar under her arm pit and has healed nicely. Her arm is in a much more neutral position. It is now 3 months later and she continues to regain strength and flexibility. Sorry the story was so long, but I think really researching and getting 2nd and 3rd opinions are a must. If you have any questions, dont hesitate to email me @ kelley.brimmer@gmail.com. Hope this info was somewhat helpful! )
Kelley

Just wanting to comment on the scarring...I have not had nor do I really know about the surgeries you are asking for info about but just recently I have started to have a lot of trouble with my scar from my last surgery. Although the scar on the outside doesnt look too bad the scar on the inside is starting to cause trouble. This particular scar is along my scapula (shoulder blade) on my side. The layers are starting to stick together again two years post op. Be careful where the scars go. I thought that would be a problem free area much like the one in my armpit...I now have trouble with both scars. THe one in my armpit causes ingrown hairs as they insist on growing through the scar.

Just something to think about.

I think you have been given great advice that if you are not 100% sure this is the way to go get another opinion. Also your daughter is old enough to voice an opinion if her options are explained to her. Follow what she wants...After all, thi is her life and her injury. She may be finew with how everything works and two surgeries have a lot of possible losses. Sounds like a "really functional" child has a lot to lose. Look at all the possible losses and all the possible gains and check it out.
Good luck deciding which way to go.
Hugs,
Amy 22 years old ROBPI from MN

My son is now 14 and just had Triangle Tilt surgery this past January for ROBPI. We have been very conservative with the surgery issue also and Tyler was also considered "not that bad". We finally had to face this when Tyler's shoulder became dislocated sometime between 12-13 yrs old. Dr. Nath performed his surgery, and I agree with Tim--Dr. Nath's book explains so many things and the pictures are extremely helpful all the way from what happens to these kids' shoulders fromt he beginning of the injury and exactly what the triangle tilt surgery accomplishes. The shoulder issues really play a major part in the overall movement. Hindsight is 20/20 and if I had known that a dislocation was going to occur, we would have had the surgery done earlier. The earlier it's done, I think the better the outcome later. Yes, the scars are bad, but that can be taken care of later with laser surgery. Tyler is having arm movement now that he has not had for the past 14 years and even he is excited--as much as a 14 year old gets when he's trying to be cool! Lol No Regrets here!

Donna

I thank you all for your posts - it really does help to hear about all of your different experiences. Claudia, I have heard of Andy Price, however insurance won't allow me to get in to see him. I will look into the other names that you have given me. Donna, I am excited to hear that your son is doing so much better. This certainly sounds encouraging to me. Kelly, I believe that I will email you. Perhaps at some point we can even talk. Your situation does sound so similar to mine and I like that fact that you got results with minimal scaring. I know that should be the least of my worries but my daughter already has excema that embarrases her, I don't want huge scars on top of that. I have been talking to my daughter and she is so looking forward to having a surgery that could help her gain some function. I am actually surprised at how well she is accepting a possible surgery. I have been doing a lot of reading on this board and am also concerned about her elbow contracture. Dr. Nath suggested doing nothing with it (most doctors say the same thing). After reading messages, I am afraid of it dislocating. I have never been warned that this could happen. My pediatrician wants me to look into the Hospital for Special Surgery here in NY. I will try there as well. I know I have to make a decision soon as to what I am going to do before she gets to old. Please don't stop posting - I need all of the guidance that I can get.

I had what would be considered a modified mod quad, as they only "moved" 2 tendons. I have good function generally. Normal hand/wrist/elbow, but am limited in shoulder flexion, abduction and external rotation.

I had surgery at age 14 and I did not gain much from it at all unfortunately. I gained some external rotation, but not much against gravity. Forward flexion I gained a bit, not a lot... BUT my shoulder joint is malformed which is why they think this did not work as well as it should have.

I do not regret having the surgery though. It allowed my arm to hang in a more "natural" way at my side and I did gain strength in it and confidence in my abilities. I only have 2 scars from it, one on the outside of my arm, which did embarrass me for a few years, and one that is in the front and goes into the armpit. That one is more or less hidden and never bothered me.

It was a LOT of hard work in PT and OT for years, but I was willing to work and for the most part I didn't complain (considering I was 14-17 years old).

I used a NMES as well to gain some strength and it did work, but at times was frustrating as you don't see results real fast (and teens get impatient!).

Get second and third opinions, and talk to your daughter. She has to understand that it will be along process with no "quick" results. I did see some "instant" results when the brace came off, but of course you need to work hard to strengthen after and maintain...

Good luck!
Marieke 33 LOBPI

Regarding the elbow contracture....before Tyler had TT surgery, he had to have his elbow casted which basically entailed stretching his arm out a few degrees each week and the OT changing the cast weekly to allow the muscles to stretch. He did this for about a month before he had surgery. His arm is not 100% straight, but better than before surgery. Right now he is about 12 weeks post surgery and so far we have not noticed the contracture coming back....so far!

Donna

My son had a contracture before triangle tilt, now it is so much better!! Dr Nath said we may have to do serial casting, but so far, so good!! Very satisfied with triangle tilt so far, 20 weeks post op.

I meant to say elbow contracture before triangle tilt...