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Suffer from NDPH and have a question about CT mylogram for CSF leak

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Posted 9/24/2015 9:36 PM (GMT 0)
Hi,

I'm new! I have recently been diagnosed with NDPH, but have had these daily headache for over 18 years.
It all started after I was involved as a passenger in a horrendous car accident. I was ejected from the vehicle, and broke a lot of bones, ruptured my spleen and liver, and had severe injury to my head, back and neck. I was kept in a coma for a week, and have had a total of 15 surgeries since.

The doctors at Stanford in CA want to check me for a CSF leak, and the procedure is scheduled a month from now. Needless to say I'm nervous.
They are going to do a CT mylogram first and 3 days later they'll do a patch. Has anyone here done this before? What's it like?
Posted 9/25/2015 12:08 AM (GMT 0)
Welcome to the forum.

Well, I've had the myelogram, but no patch. It's not really bad.

My myelogram was pretty uneventful, no pain, partly because I have a lot of numbness from numerous nerve ablations. In any case there shouldn't be much pain because they inject enough local anesthetic before the spinal needle goes in to inject the dye. If you've had any sort of spinal injection, it's like that.

Another similarity is it's a bit like getting a spinal anesthesia. From having 4 C-sections I've had plenty of those too.

After they finish injecting and watching where the dye is going, they put you in the CT machine, and that's no big deal either. I'm sure you've had those.

Then you go home. Some docs have you keep your head elevated so the dye doesn't run upward. They'll give you directions.

It scared me awfully because I didn't know what was going to happen and thought it would be painful. But it was just one more test and spinal injection. I just wish they'd found something they could fix to take away some of my pain.
Posted 9/25/2015 12:58 AM (GMT 0)
Thank you so much. I feel much better about this now!
Posted 9/26/2015 9:54 AM (GMT 0)
Welcome to the forum and as Alcie said it is not bad and we conjure up some awful thoughts since all our lives we have been told its not good to have anything touch your spinal cord and now they're going to invade the space with dye? Really it's not anything to be scared of an it's done a lot more than you think. Make sure you follow post procedure instructions. Good luck and let us know how it turns out.
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