My NSG Appointment (long)

[Guest guest]

Dear Group,

I wanted to let you know how my NSG appointment went yesterday. I saw Dr.

Heilman at Mass General. He seemed like a very nice guy. Quick background

- I'm 25 and I have an 11-18mm herniation, no syrinx that we know of. Dr.

Heilman sees a number of Chiari patients regularly, and does about 1

surgery every 2 months.

He said that my symptoms are definitely there and I definitely have Chiari,

although in his opinion, I should not have surgery at this time. He says

that since I don't often get the " standard " chiari headaches - instead, I

tend to get them all over my head, and from exercising, water retention,

and things other then coughing and laughing - and since I don't have a

syrinx, he doesn't think surgery is the thing to do.

He said that he's seen people with symptoms like mine who have had surgery,

and they sometimes get worse and feel they were better off without it.

I asked him about the MRI reports of kinking in my medulla oblongata area,

and he doesn't think, based on looking at my MRIs, that it's a problem. I

also asked him about my continuing symptoms, and the fact that, over time,

I believe I am definitely progressing. He said that I'll have good months

and bad months, with or without the surgery.

I asked him about permanent damage. He said that the symptoms I'm having

now are indicative of nerve signals being messed up, but that they nerves

themselves are not getting damaged by it, since I still have arm and leg

reflexes.

He looked at my spinal MRI and showed me a little white streak that he said

could have been a " baby syrinx " , but he didn't think so. The MRI report

also said there was no evidence of a syrinx. That particular MRI was done

in the Fall, so I'm wondering if I should have another spinal MRI, just in

case. He didn't seem to think it was an issue.

His recommendation to me was to see him (or whichever doctor I choose)

yearly and have MRIs yearly, and if I develop a syrinx or if he finds nerve

damage, then he will operate.

I am not sure about this answer. Although I've only seen three doctors,

their responses have all been very different. Milhorat recommended that I

wait until I either can't live with the symptoms anymore, or they show a

definite progression. (I think it's safe to say that, since I have started

having more and more that come and go, they've been progressing). Dr.

Black, the Chief Neuro at Brigham and Women's, wanted me to have surgery as

soon as he saw my MRI.

So, that's the story. I am seeing Dr. Black again in a week and a half to

evaluate my situation again, now that I know more than I did 2 years ago

about Chiari. Honestly, the wait and see attitude frightens me, but then

again, so does the surgery!

Well, now that I'm done with the update, onto the NCC news - I'm going away

this week, and after this evening, I'll be be signed off the list for the

week. If you'd like to reply to this message personally, I welcome your

input, although after around 5pm this evening, I won't see your mail until

I return next weekend.

Thanks for your continuing support. I'm off to enjoy a week of (hopefully

relaxing) fun!

in Boston

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