NSG Appt Scheduled - A Little Venting

[Guest guest]

Two things happened today. First, I sat down with our pediatrician

and went over a couple of my son's MRI views with him. Although he

was very receptive to learning, he also admitted that he knew very

little about brain anatomy, etc. I was glad he is willing to listen

and learn, but frustrated not to be learning anything new myself. I

also got a copy of my son's written report which says there is no

Chiari (odd, but I can measure the herniation myself) and that with

the exception of a syrinx, everything is normal. Now, I've only

recently started to educate myself on SM, but everything I've read,

without exception, says a syrinx only appears because there is another

problem. How can my son have a syrinx if everything else is normal?

The second thing that happened was I finally made contact with the

nsg's office and scheduled an appointment. First available is

mid-July. In the meantime they want us to be sure we have a neuro on

board to address my son's tremors. AAAHHHHRRRGGGHH! In order to get

the MRI done in the first place we had to jump hoops with a neuro who

lectured me on having to treat the parents instead of the kids and

diagnosed my son's tremors as restless leg syndrome. Once we got he

MRI results that showed the syrinx, the pediatrician recommended we

fire the neuro and go straight to the nsg. Now the nsg wants a neuro

on board and we've got to start the whole thing over again. His

assistant was flabbergasted at our first experience, but had no one

else by name to recommend - the Children's hospital with which they

are affiliated is not taking new neuro patients. She said even if we

needed to go to another hospital for this, we really needed to do it.

Incidentally, can someone explain to me why a neuro would treat

tremors but a nsg wouldn't? And if anyone has dealt with Dr. Kanev,

currently of Connecticut Children's Hospital, came from Baystate

Medical, I would be interested in hearing your experience.

I'm spending so much time and energy on this and we're not getting

very far. I'm frustrated and depressed at the prospect of continuing

to deal with people who are un- or under-educated on this subject.

Ingrid