question about steroids (long)

April 13, 1999

Was wondering if I could get some input from you guys, (or gals).

I spoke with the new NSG that saw about a month ago. (btw, he is

moving, what a bummer) He called her the 6 million dollar brain - real

complicated. First he said he didn't see any signs of instability, which is

great. At this point her shunt seems to be doing OK. The decompression itself

looks good - but until we do a CINE MRI and flexion x-ray, he's not sure

about the CSF flow.

He is still leaning toward graft problems (cow pericardium). He said there

are two things that we can do. A spinal tap, in which he said since her

hydrocephalus is under control and she has had the decompression, it wouldn't

be as bad to do the tap. Or we can try steroids for 10 days to two weeks.

He said lots of time a treatment of steroids can get any type of

irritation/inflamation under control. If that made things better (headaches

and such) then there is a good chance that it is a graft problem.

He told me to think about what I wanted to do and let him know when we see

him next week. OK, now the question. What do I do??? I'm not real thrilled

about a spinal tap, even under the most cautious conditions. But what about

doing this steriod treatment? What is the good and bad about that?

We are also seeing a doctor next week about the old excessive scar tissue

that runs all the way down 's neck. This is, we think, what is

preventing her from holding her head upright. Supposingly this scar tissue

can be removed with a laser type surgery.

Can you imagine, an easy surgery!

I would really appreciate anyone's thoughts on the steroid issue.

Tory ('s mom)

------------------------------------------------------------------------

Recommended Posts