United Brachial Plexus Network, Inc.

I just wanted to get some insight from people who had the surgery when they were young. My 4 yr. old daughter is about to have the Modquad procedure done. I wanted to be able to see what people were able to overcome after having the surgery. Did it take weeks, months, years to see results? How much improvement did you end up with? Things like that........

I had surgery when I was 14, so not so young, but it may have been better if I had had it younger (better results I mean).

Surgery was positive for me, even with all the hours (over 2.5 years) of PT/OT. Even though it was only partially successful I am glad that I had it done. I would rather live my life saying "well at least I tried all that I could to get more function" than to not have done it and wonder if I would have been better off...

Marieke 33, LOBPI

I had surgery when I was about 2. It was a muscle lengthening procedure. I remember nothing about the surgery or the recovery and my mom is unable to tell me anything now - dementia - so I can't tell you how long it took to recover or how soon improvement was evident, so I guess my reply won't answer your questions at all!

BUT....

I have been told by two or three docs - including Dr. Nath - that I wouldn't have near the range of motion that I do have now if it weren't for that surgery 38 years ago. Dr. Nath told me that I have more range now w/out any of the adult surgeries available than most adult patients end up with AFTER having the surgeries.

Try to be patient.... I may not have seemed any better for months after, but in the end I AM better.... If it takes weeks or months to see improvement than that is what it takes. Every child is different. But please know that in the end, when she'd grown, she will have such a better life. THAT will make it worth it, no matter how much time it takes now to get to where you see improvement. (I have a feeling that once you see improvement, you'll be so thrilled about it that you won't care how long it took!)

Hang in there .... your daughter is very lucky to have a loving mom that asks questions and educates herself about what is going on! I'll keep good thoughts for her as she goes through this!

Lisa
LOPBI/41

P.S. My brother lives in Houston. Next time we visit, we'll have to drive over to Lafayette and meet you all for dinner at Mulate's! (I'd know my hubby'd love an excuse to go to Cajun Harley again!)

I just wanted to give an update.....Kylee had the Modquad surgery in late August. She had to only wear the splint for about 4 weeks, 12 hrs a day. We used it for an extra 2 weeks due to the fact of needing her scapula shaved a little, which was not expected. She has gone a full week of no splint at all! And I am happy to report at therapy today she had hardly any tightness! The therapsit has been using kineseo-tape on her shoulder/scapula and triceps areas. Today for the first time she only applied it to the triceps area! Now we have to work on stregthening the triceps and her external rotation. We are hoping to not have to do the serial casting to try and straighten her elbow, b/c there is not much of a crease. Hopefully the tape will help. We are going to have a CT scan done next month to check out the shoulder/scapula area to see if she will need the Traingle Tilt surgery. Dr. Nath said that the shaving of her scapula might have done the job and she may not need the surgery. We hope so. I see her improvement daily! I am on facebook and have some albums set up with pics. If anyone is interested in seeing them let me know or you can send me a friend invite......Kimberley Gautreau.

I had surgery when I was 10, and now I'm 20. I think, as was said before, it would have been more effective if I was younger. It was kind of a trade-off, results-wise. I have more mobility and strength now than I used to have. There are some things that I couldn't do before (that I remember distinctly) that I can do now. There are also some things that I could do before that I can't now. It's weird... and kind of hard to explain. When I was a kid, I felt like more was taken away than given. The experience in my cast was horrible and painful. Taking a bath was the worst part. When I finally got out of the thing, I had to rebuild strength, and intensive physical therapy often made me cry. Now I feel glad that I had it. I can do push ups, go kayaking, and I'm sure there's more to come. I haven't been pushing myself as hard lately to keep strengthening it, but I have been trying new things.
My goal is to one day be able to do a pull-up. Something that since I was little I've never thought was possible... but I didn't think I'd be able to do a push-up, either.

I had surgery at the age of 30! I had the mod quad procedure done. I gained 40 % more range of motion. My arm was shrinking and paraylzing itself so for me it was the best thing I had ever done. I still have pain issues and probably always will from over use but it really was worth it for me. I think it just really depends on everyones individual situation. I'm sure as a mom of a young child it isn't easy to decide for your child to have surgery. Best of luck to you on whatever you decide.

rachelcasa wrote:I had surgery at the age of 30! I had the mod quad procedure done. I gained 40 % more range of motion. My arm was shrinking and paraylzing itself so for me it was the best thing I had ever done. I still have pain issues and probably always will from over use but it really was worth it for me. I think it just really depends on everyones individual situation. I'm sure as a mom of a young child it isn't easy to decide for your child to have surgery. Best of luck to you on whatever you decide.

Thanks, Rachel. I'm 29 and was wondering if I'm too old for surgery (OBPI to right arm). You gave me one more ray of hope. If you don't mind, could you give advice as to what to expect per cost and insurance? Also feel free to email your response. joshuajmarshal@yahoo.com

Rachel,
Thank you for sharing your information. My daughter is scheduled to have the mod quad with Dr. Nath; she is 19 years old. She actually had the mod quad with Dr. Shenaq when she was 8 years old.
Did Dr. Nath do your mod quad? What was your goal going into the surgery, if you don't mind me asking? And, what has surgery helped you with now?
If anyone else has had the modquad with Dr. Nath please let me know your gains.
Thanks!!!!!!!!!!

i had surgery when i was 9, i believe it was a tendon transfer. i was in a cast for a month, and then had PT until i was 15. i am glad that i got it done, i have gained some range of motion, and my arm is no longer resting across my chest. most people cant tell unless i tell them, but thats what my doctor was mostly going for... a normal appearance...