??? about tendon transfer

[DJsmom]

I know this question is asked frequently on this board BUT I am asking again. Our son is not quite 3 and has only had botox around 1 year of age. As of right now he has great hand mobility/strength. His external rotation is a little past neutral and he can lift his arm where the elbow (though bent) is slightly higher than his shoulder. We are discussing a tendon transfer/ anterior release. I know why they want to do this surgery but my question is what are the 5 and 10 year outcomes?

Has anyone had this done and lost mobility? Did you have to have multiple surgeries? Did overcorrection occur and another procedure need to be performed?

Also has anyone NOT DONE ANYTHING surgically and what does that look like? Are you in pain? Do you wish something was done?

Also was told by our dr that the outcome % of patients needing additional procedures is not reported. Does anyone know this type of info?

Just needing some input from those of you that have been there/ done that.

[Cacausey]

Hi! My daughter (now 2yrs) had a nerve transfer last May at 14 months of age. Prior to her surgery she sounds a lot like your son... We noticed great improvement after the surgery! She can now reach over her head with a mainly straight arm! I'm not sure about the pain question b/c she has never expressed any discomfort and we are only 10 months post-op.

I will tell you that we have had a dramatic increase in scapula winging after the surgery. Her surgeon told us last week at our appt this was due to the decrease in nerve innervation from the muscle where the nerve was taken from. So, this has been a bit disappointing and we are talking about a muscle/tendon transfer surgery to be done in about a year.

Overall, we are really please with the results from the nerve transfer! I would be interested to hear about your experience with botox...we havent' done that and I would love to hear where your sone was injected and what the results were! Feel free to e-mail me at chrisannecausey@yahoo.com or find me on facebook.

All the best to you and your son,
Chris Anne

[Karenw3]

Hi, my daughter had both the primary nerve graft surgery at 5mo. old and then a muscle tendon transfer surgery at 13 mo. of age. She did not have nearly as much movement as your son seems to before surgery. After her tendon transfer, we did see great results--she was able to raise her arm up beside her head with a straight arm and was able to make progress in other movements that we had not seen before. We did receive quite a bit of therapy at that time along with using muscle stimulators like NMES and TES on her arm. She virtually had no movement in her arm before both surgeries. She is now 11 years old and I thought you might find it interesting to see a more long term result. She can still lift her arm up beside her head, but I have noticed it becoming more difficult for her in the last year or two. Her arm is slightly more bent and she has to more or less "throw it up there " and she has difficulty keeping it raised up for more than a few seconds. We have done some therapy during the summers, (she tested too "high" to receive it at school), so mostly her "therapy" is staying involved in dance classes, piano lessons, clarinet lessons ,softball and basketball as well as swimming in the summer. The one thing so far that has been beneficial for her is that she has not experienced any pain, contractions, etc. She is very loose, flexible and has no "visible" deformity of her arm. I am not sure what the future will bring, but thought I would let you know what we have experienced so far.

[Karenw3]

forgot to mention that we did not experience any major problems with scapula winging either. Some slight winging, but her other shoulder also had some as well.