My mom was on her commute home over a week ago and was chitchatting with a guy whose nephew had a tumor in his neck and when it was removed, had nerve damage to his face. He went to a nerve and paralysis center in Houston and had a surgery performed that helped the damage.
Ever since that conversation, I've been investigating more and more the options we have as far as Isaac's face is concerned. See the ENT we saw at Mary Bridge said just give it a year and then you'll have what you have. However, it's so hard to just sit back and see what's going to happen. Since then, I've spoken with the craniofacial program at Children's Hospital in Seattle as well as the doctor in Houston who does nerve surgeries. We see the doctors at Children's on December 11th. What I learned from the doctor in Houston is so so interesting so I'll try to explain it as best as I can. I believe that the craniofacial program in Seattle will have similar suggestions.
He said that what he would recommend for Isaac would be to have a surgery where he would cut just in front of his ear (like a plastic surgery cut) and would go in, first would shock the nerve with like 1200 amps (I believe that's the number he used) and if his face twitches, then they would know that the movement should come back. However, if there was no movement, they would proceed to take his facial nerve and reroute it/connect it to nerve #5 which is the nerve that allows you to chew, moves your jaw up and down. The result of this surgery would be that Isaac could move his jaw in a certain way and it would enable that side of his face to smile. It would basically move that muscle for him.
The paralysis can be seen pretty drastically in a few areas of his face. He can't crinkle his forehead, his can't close his eye, he can scrunch up his nose and he can't smile. So basically he has lost the animation in that side of his face.
If we don't go for this surgery (which should be done in the next few months before the muscles in Isaac's face just die) then there is another option which would be to wait and see for a couple of years. Then if he doesn't regain the movement, they could perform a surgery that would take muscle from one of his legs, put it in his face and then do some reanimation/nerve moving. So that is how I understand it.
It's not purely cosmetic - it's also because his facial droop will affect his speech, his eating, etc.
As far as his eye is concerned, this is another huge worry because he is at risk for scratching his cornea as his eye doesn't get the tears and remains a little open (even when he sleeps) at all times. Right now we are putting drops in his eye every two hours and at night a gel (which he hates) but there's an option of putting a weight in his eye which will allow it to close and he can learn how to manage that as he grows up. I'm not sure when they would want to do such a surgery - at what age would be best, etc.
This is just some of the stuff going on in our household these days. Making lots of calls, trying to get all the information we can. I will be needing to take more time off from work in order to make these appointments. I will absolutely fly to Houston if needed but am hoping the same thing can be done in Seattle.
It's been really difficult to get Isaac's pediatrician to be open to discussing these options. I'm honestly so shocked that none of the providers we've seen have pointed us in this direction - it's had to be on our own initiative. I've requested another referral for some "energy work" called craniosacral therapy which my massage therapist thinks could be very helpful but have been turned down for that. Maybe because it's not medicinal? I think we'll be going ahead with it anyway - just because I want to try everything possible to get my son whatever care would be helpful. Here is the official description of what craniosacral therapy is:
A craniosacral therapy session involves the therapist placing their hands on the patient, which they say allows them to tune into what they call the craniosacral system.[1] The practitioner gently works with the spine and the skull and its cranial sutures, diaphragms, and fascia. In this way, the restrictions of nerve passages are said to be eased, the movement of cerebrospinal fluid through the spinal cord is said to be optimized, and misaligned bones are said to be restored to their proper position. Craniosacral therapists use the therapy to treat mental stress, neck and back pain, migraines, TMJ Syndrome, and for chronic pain conditions such as fibromyalgia.[2][3][4] Several studies have reported that there is little scientific support for major elements of the underlying theoretical model, which has not been rigorously analyzed.[5]I figure it's worth a try!
