Sara's Appointment

Sara had a visit with 3 specialists in West L.A. yesterday. Two of the three doctors were not very helpful, but one of them (a neurologist) seemed to take interest. My feeling is that her condition is so rare and varies so widely, that the doctors aren't really sure what to do to help her, though there are options. "Let's wait and see" is the most common response we have received from medical professionals. While I was aggravated by that response in the past, it makes more sense to me now because Sara continues to progress in her arm strength and function. I was encouraged by what the neurologist said about other children whose arms looked straight, like Sara's, but eventually were able to gain some elbow flexion. He also said he thinks she has bicep muscle, or felt something other than skin and bone, I also feel what may be a small muscle. Whether or not a nerve is innervated is another question. At any rate, I was encouraged and will be more diligent about practicing bicep muscle movement (mainly hand-to-mouth feeding). The doctor was also encouraged by the amount of progress and improvement she has made since she began to actively use her arms about 6 months ago.

The doctors offered some options if Sara does not develop bicep movement. The main option discussed was a tricep transfer, which is the typical surgery done in kids like Sara. The problem is that Sara's arm would be locked at a 90 degree angle and she would lose her arm extension, the only strong arm movement she's got, though that would give her a fairly strong elbow flexion. Rich and I are not crazy about that plan-we feel that technology has come too far for that option. The neurologist was also telling us about a muscle transplant, where they would actually take a leg muscle and transplant it in the bicep area, borrowing nerves from the shoulder/neck muscles and another nerve in the lower arm. We thought that was an interesting idea, and probably our favorite. They also discussed just doing a tendon release of part of her tricep in order to weaken it, making the bicep easier to move? Maybe I don't quite understand that one, but it definitely did not sound like a good idea.

One of the three doctors we went to see does nerve grafting. I was told he was one of only two in the US that did this type of operation (I think the other is in TX). That's nice to know also in case Sara has a bicep muscle, but no nerves to make it move.

Hopefully she will not need surgery and will develop strength in her bicep (assuming she has that muscle group). The only way to know for sure is to do a nerve conduction study (I think that's what it's called though I could be wrong), which is quite painful-they would actually poke needles into Sara's arms and give her a little shock to see what's there-not sure the pain is worth the information at this point..."Let's wait and see" is sounding good to me.

We have another appointment in 6 weeks, so, I guess we'll wait and see!