Ah, thank Heaven for some AMAZING doctors! My absolute, one hundred and fifty percent favorite doctor I have ever had to deal with EVER is Micah's Neurologist. I wish she was his primary care doctor, that would be splendid. Anyways---I finally got a call from her this week, after I put in a call to talk to her about Micah's MRI this past Monday. Until now I was getting nowhere fast with Micah's neurosurgery pursuit, so I figured just call her and talk to her about it. She was sick this week, but just called me back...and it was worth the wait!
First she asked me what I knew, which was that they did the MRI, saw the syrinx then did an MRI of his whole spine instead of just his head. So then she elaborated, telling me in reader's digest form of what I had already researched about Syrinx in general and what causes them. She said first that both a tumor and Chiari malformation (common brain malformation that causes syrinx to develop) ARE NOT an issue here---his brain is fine and no tumors. I figured as much, but a relief to hear. Then the second thing is that this Syrinx goes from the top of his spine all the way down to the very end. It's the ENTIRE length of his spine (at which point I got worried). Basically, as she explains it, the normal canal down the spinal cord of cerebral fluid is about a milimeter thick, his is enlarged, the whole way down.
HOWEVER, she and I both agreed (in fact she said I took the words out of her mouth) that his "symptoms" are typical of the PVL in his brain, NOT a syrinx. When I found out he had PVL 2 years ago I was told he had a 70-90% chance of having Cerebal Palsy---specifically Spastic Diplegia (a type of CP, as cerebral palsy is an umbrella term for a wide range of conditions), as "SD" or "hypertonia" is most commonly associated with PVL, and especially since he had it on both sides of his brain it was all that much more likely. His Physical Therapist agrees that his muscle spasticity is typical of Spastic CP. Micah's neurologist agrees, he isn't showing any neurological symptoms of having a syrinx, and that what we are seeing is from the PVL---in fact she wonders if the syrinx might be causes by his PVL as there is no other visible reason for it to be there.
So good news #1 is: she feels as though his Syrinx is a non-issue concerning his health. For one, I asked her how often he will need a follow up or check up MRI etc on his Syrinx. She said that there is no set standard, but she said that techinically we may NEVER have to, but if we want to be cautious we can check on it every few years. As long as he is assymptomatic then it really isn't an issue. If he gets in an accident or something then we would want to check it out, but that's about where we stand. Phew!
Good news #2: not only does she believe that surgery is not necessary, she believes that it most likely will NOT affect his ability to get the SDR. She said if anything it will help us have even more reason to try to get him to St Louis to get the surgery, AND if they feel it will help or is necessary then he could possibly have the Syrinx drained at the SAME time. They may or may not have to touch it at all, but if it's something the surgeon decides we should try then it would be great to get it all done at one time at one place. She recommends against having it done locally, and to continue to pursue having his SDR surgery. (Real quick, before all this MRI happenings came about, I found out about a surgery called Spinal Dorzal Rhizotomy in which they go into his spine, find the nerves causing his spasticity and sever those ones, leaving his motor nerves in tact and thus reducing his muscle spasticity in his legs. The earliest they do the surgery is at 2 yrs). I am SO thankful that for now it seems as though he has a good chance at getting SDR done soon, and that this Syrinx may be a blessing in disguise to help our insurance cover the surgery and trip to St Louis. !!!!!!!!
I am so happy. I was so worried that his chances of SDR was dashed into the dust because of this. Unless Dr. Parks (SDR surgeon specialist in St Louis) says otherwise, then we can still pursue this thing! Yippee! Not only that, but although it sucks that he has an Syrinx, his neuro says that it's basically just there, it is what it is, but it's really nothing to take great consideration over aside from this other surgery we want. So no worrying about being near a spine surgeon, or getting frequent MRIs. Thank goodness!
Thanks for your prayers! We'll start working on his x-rays that he needs and paperwork to be sent into St Louis to work on this surgery :) In the meanwhile we are still going to try to be seen by this local neurosurgeon, since we already have the approval, so that he can turf us to St Louis for insurance reasons---since they would want to send us to him first because he is local. Gotta play the insurance game.