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        New Message Board Archives >> 2003 Posts >> I'm Back & trying to find the cure
        
(Message started by: atwitsend on Sep 15^th, 2003, 9:07pm)

Title: I'm Back & trying to find the cure
Post by atwitsend on Sep 15^th, 2003, 9:07pm

Hi everyone - sorry I've been gone for a while (It's Cheryl) but my life is a nightmare as usual.

I thought that Kevin & I had a prayer answered for us when we got a surgery date of August 29th. We went to Boston, Massachusetts, USA at 6 am. All prepared for the neurostimulator to be placed into Kevin's chest along with the lead probe into his brain & loe & behold - the surgery could not take place.

The doctors placed a halo onto Kevins skull & performed a CAT scan & when they proceeded to do the MRI there is an additional piece that has to be placed onto the head to map out the entire brain, so the doc's know where they are going, & of course it wouldn't fit onto Kevin's head.

Get this - they never measured the head because 99 % of the patients have no problem fitting into this piece?? Go figure - this is the story of our lives. Just when you think something MIGHT go wrong - it does!!

So now after waiting a few weeks for the new piece to arrive at the hospital (which is rated #3 in the country) - our new surgery date is September 22nd. He still is chronic - 4 to 6 bastards a day!!

He is still trying to stay positive - wants to be the guinea pig for all of you -to see if this really is going to work. We try to be positive about it - but it's so damn hard with all the negative things thrown at us.

I will try to let you all know on Monday night how the operation went. We won't know for a least a month if this is the cure - but I can only hope so for our sake & all of yours!!

Just a quick reminder - the neourstimulator operation has only been done 2 times in the USA. Kevin will be the first on this side of the USA. This hospital and/or dr has never tried this on any patient as of yet. I just hope all goes as planned.

Wishing all the sufferers PFD&N forever!!!

Cheryl :-*

Title: Re: I'm Back & trying to find the cure
Post by Mastifflvr28 on Sep 15^th, 2003, 9:49pm

WOW Cheryl.
Thanks so much for the updates, please keep us informed.
I got bigassvibes going up to you guys, stay strong!!
Mast

Title: there is a season
Post by rumplestiltskin on Sep 15^th, 2003, 10:23pm

I certainly wish there were some way of accessing first hand reports of these and other radical procedures which have and are occuring to treat CH. Yer willingness to keep us informed is admirable and very valuable. If you meet any other CH patients or if the Doc drops any names...see if you can get a story out of them or get them to come here and share.

I want to hear it from the patients not the docs or their "research facilities".

I wrote Dodrick in hopes that some of his "guinea pigs" would come here and give us their stories. I'm still waiting.That is the strength of CH.Com and OUCH. First hand reports.

I wish you shelter from the storm.

Walk in the sunshine.
den