United Brachial Plexus Network, Inc.

Frankie finally had his follow up with Dr Nath today to answer many of our questions and see what's in the future. Dr Nath feels frankie needs to have the bone lengthing surgery and should do it ASAP. He feels that while he's still growing he will recover faster and not have to spend as much time in the Ilizarov splint. He said if you wait till after puberty it takes longer for the bones to grow, but if there to young then it has to be done a second time when they hit puberty. So I guess he's at the right age and Frankie really wants it done and over before he starts his freshman year. He said as far as how high frankie could raise his arm after his Mod Quad it could take up to 2 years before he gets there. Cindi the OT for Dr Nath said no pulleys because frankie is to strong in the going down muscles and that could make things worse. If we have the bone lengthening done in Tx we have to fly out there every 2 weeks for x rays and check ups so Dr Nath said I could see if I could find a Dr in NJ or Pa that does it and he would talk to him but it should be someone that does the Ilizarov so I've put in a call to Dr kozin office to see if he does it. If anyone has any info I could use it Thanks Mare

Mare,
bummer about the report of more surgery. I am curious about the pulley though. The reason that she gave you not to use it seems all the reason to use the pully. As long as he is completely passive going up and does holding exercises he should only make gains from that. The reason we are doing pulley exercises is because the "going down" muscles are too strong. Passive place and hold exercises seem like what he should be doing.

I am supposed to be doing them as well, its just hard with school and roommates. But if I am gonna be an OT some day I better get back to doing my exercises daily!

My best wished to Frankie!
Hugs,
Amy 19 ROBPI from MN

Hi Amy
Yeah I spoke to Frankies OT and she was surprised to we already went and bought the pulley and were going to start using it on Fri but Cindy who is Dr Naths OT said it could mess up the surgery and if we used it we would have to remove his hand from the pulley before going down. I'm going to have Frankies OT call Cindy so she can find out what's up who knows there maybe other things he shouldn't be doing that we weren't told about. She didn't say anything else about what he needs to be doing just said no to the pulleys and no to thera togs and that was it. Oh and the real bummer is Dr Nath said he has to sleep in the splint for 4 months and here we thought we were almost done and now Frankie has been sentenced to another 6 weeks of hell. Amy how long did it take for you to be able to raise your arm up past 45 degrees dr Nath said it could take 2 years hearing that made me feel like maybe this surgery wasn't a success but he didn't want to say it. Mare

Hi AMY
Frankie's Ot is going to email Dr Naths OT to find out what she should and shouldn't be doing she thought for sure the pulleys would help also as long as there was no tension on it. I'll keep you posted Good luck with school. To bad you don't lived in NJ you could be Frankies OT Mare

I just joined 2 yahoo groups...most the people there have the ilizarov on the leg but they may be able to refer you to someone closer to you...My doctor does arms and legs.
The groups are here:

http://health.groups.yahoo.com/group/Il ... -fixators/

http://health.groups.yahoo.com/group/Pa ... xatorKids/

I believe both groups are over 18 because of some of the graphic pictures that people share of their injuries.
Good luck in your decision.
Teresa

Hi Mare!
Glad your OT is going to chat with Dr. Nath's OT maybe they can work something out.

I actually have not had the Mod Quad. So I really have no experience with that surgery at all so I was speaking from my experience. I had a lat dorsi tranfer at age 10. Had I had the pulley then I probably would have made gains from that surgery but I didnt have any formal therapy after that surgery.
As long as I can remember I have had about 90 degrees. You can see pics of me on my website in the photo album. www.freewebs.com/bpimn All the pictures are of me, even the baby pic.
My site also describes all my treatment in detail under the updates.

I hope that helps and that every thing works out great for Frankie! So sorry to hear that he has to wear that splint 6 more weeks. But they should fly by!
Hugs,
Amy 19 ROBPI From MN

Hi Teresa
Thanks for the websites I got an appoint with Dr Cornwall at CHOP in Feb. Has anyone heard of him he's an ortho surgeon. Frankie's OT said I should be prepared I may get a totally different opinion from Dr Cornwall about what needs to be done because Dr Nath is a plastic surgeon and Dr Cornwall is ortho and they think different. I think the more opinions the better I'm not one to rush into anything especially something this big.From there we will be seeing Dr Kozin for his advice and then if they all think the bone lengthening should be done there the International Center for limb lengthening in Baltimore a Dr Janet Conway. I've heard her name mentioned here. So now we wait and gather more info. Thanks for the help & Best of luck to your son
Mare

Mare

Thanks for all your messages on the board about bone lengthening. We are just starting to look into it for my son who is 8. We see Dr. Nath in a month and my guess is that he is going to want us to have the surgery. Nath has performed all my sons surgeries but we wouldn't be able to fly to TX to see him every two weeks since we live in FL. What other Drs. have you heard about that are good at this surgery? Have you talked to anyone who is willing to do both parts of the arm at the same time? Are you looking at having the hand done too? I just read an article about this and it said that it works better on kids. If anyone has any info that would be great! thanks Mary Lou

Hi a quick note....My son's surgery is this Tuesday. Our doc said he will not lengthen the lower arm because it would be a nightmare but keep in mind my son is almost 18 and most probably finished growing....He said it is very hard on the wrist and can cause shifting when there is 2 bones involved.

Good luck on your quest....I will try to keep you updated.
Teresa

Teresa
Best wishes Jameson for a fast recovery you will be in our hearts and our prayers. Teresa I'll be thinking of you on Tuesday stay strong Mare and Frankie