Worsening syrinx

[Guest guest]

Ok, I am going to try to make a very long, traumatic 6 months very

short. My 4-year old son was dx with CM and SM February 2008;

decompressed 4-16-08; sub-occipital crainectomy, c-1, partial c-2

laminectomy, opened the dura, and used an alloderm patch to close.\

He had a very marked syrinx that ran as far down as it did up before

surgery and I was told by a few neuros that he needed the surgery

done then strictly by the size of the syrinx alone.

So, fast forward

to today, I checked out my copy of his MRI as soon as I got home. I

measured it and compared it to the one done in February, his syrinx

is worse! The top one that begins at c-1 was 36.4 mm long, now it is

43.4 mm long. The next one down was 48.2 mm long, now it is 50.6 mm

long. That's a big difference!!! So I am feeling pretty down about

this and am needing some insight.

Has anyone else had their syrinx

worsen, and did it get better the farther you got out from surgery? I

am thinking that if it stayed the same this close to the surgery then

that is one thing, but to worsen? I feel terrible, and am needing

some answers.

Also, I found out that my neuro, who I really used to

like, wrote a note accompanying the MRI request to the hospital

pretty much accusing me of making his symptoms up. He has seizures as

well, and when he woke up in recovery from the surgery he started

having these hiccup-drop seizures. I asked his neuro about this at

his 8 week check-up, and he wrote in the paper that he saw no

bruising to corroborate my account. This was only the first part of a

lengthy letter insinuating that I was a Munchausen mom. As if all

this wasn't bad enough now I have to find another neuro. I am sorry

that this is so long and I would appreciate any and all replys. Thank

you, tiffany