Comments on: The Last Round

By: Al_Pal

Al_Pal — Fri, 14 May 2010 04:44:23 +0000

Whew! Your reasoning sounds *ahem* totally reasonable to me.
I’m glad you answered what a blood patch is; I’d been meaning to look it up but your explanation is nice & understandable.
*hugs*

By: Ann

Ann — Wed, 12 May 2010 05:58:47 +0000

This is so understandable to me. Sometimes another disappointment in the ongoing saga of “…dancing with Doctors…”, is almost harder to bear than the thought of just dying & getting it over with. Thank God for the times medical stuff works, & thank God for the grace to endure & go on, when it doesn’t.

By: Joy

Joy — Tue, 11 May 2010 15:47:23 +0000

This is a brilliant idea. Wishing for the best for you, Katie.

By: purplebreath

purplebreath — Tue, 11 May 2010 03:54:54 +0000

Your decision makes perfect sense and I support you fully. One suggestion: keep your neurosurgeon thinking about you. Send him an email (or if not possible, a snail mail) once every month or so including a brief update and request for any new updates/developments in CSF studies. He’s our best hope (for now) for a cure and we don’t want him to forget his failings

By: Elizabeth Kaylene

Elizabeth Kaylene — Mon, 10 May 2010 18:54:45 +0000

I totally understand. And I’m so sorry there isn’t something better out there. Hugs and love to you.

By: elisabeth

elisabeth — Mon, 10 May 2010 12:54:52 +0000

I don’t see it as “giving up” at all- you need some time to rest, research, and get a little living done. You’re not someone who complains all the time but never does anything about it- if anything you’ve been aggressively pursuing treatment. Maybe having some time to decompress after finals will help emotionally a bit, and recharge you for future research and treatment. *hugs*

By: Kathy

Kathy — Sun, 09 May 2010 16:54:05 +0000

Katie I have been following your blog for a while now. My sister in law has had very similar problems because of a very different reason — brain tumor surgery over 20 years ago. Long story but she has had blood patches, headaches galore, CSF leaks, the “patch” they put on the tumor site kept disintegrating and she kept having to have it re-patched. Finally this Feb. she had a craniotomy and apparently the neurosurgeon said this is how the patch (between her brain and her nasal cavity) should have been done in the first place.

I am wondering about artificial CSF — is there such a thing, and would that help you?

I totally get not wanting to have any more blood patches. My sister in laws didn’t work forever either, and she kept getting scar tissue on the blood patch site, etc.

Anyways take care. I am so sorry there is so little out there to help you.

By: Allison Zapata

Allison Zapata — Sun, 09 May 2010 16:50:40 +0000

Only YOU know what is right for YOU!! I’m so sorry. Sending lots of love. xoxo

By: Another Becs

Another Becs — Sun, 09 May 2010 08:33:14 +0000

I can’t fathom how people could be mad at you for deciding your own course of treatment or opting out of treatment.

You don’t need anyone’s approval but your own to do what you need to do for yourself.

By: Katie

Katie — Sun, 09 May 2010 02:55:13 +0000

You’re not stupid! It’s pretty rare. Basically they insert a needle into the area just outside the spinal canal (like an epidural during child birth) and then insert some of my own blood into it. The idea is that the blood will clot into any small holes along the dura (covering) of the spinal canal if there’s a spinal fluid leak. I’ve had 4 so far, three of them for leaks that were caused by lumbar punctures, and one as a try at stopping the headache in general.

Hopefully that made some sense…