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Old 07-12-2013, 11:50 AM
alieyers alieyers is offline
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Join Date: Sep 2012
Posts: 2
10 yr Member
alieyers alieyers is offline
New Member
 
Join Date: Sep 2012
Posts: 2
10 yr Member
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Quote:
Originally Posted by sarahmead1993 View Post
Hi Ali,

I read your post with great interest as you are the first person I have been able to find with symptoms like mine.

I have been under the care of Queen Square for the last 3 years and have had a whole barrage of tests and treatments with no success.

I too have EDSIII and am having a shunt inserted in the new year for exactly the same problem as you. My surgeon says he's only done 4 for this specific type of treatment, 2 have been successful in helping but 2 have failed. I wonder if you are one of the 4, and if so has it helped you?

I have found out that Dr S at Cedars Sinai does an operation to remove part of the dura in the lumbar spine in order to decrease the size of it allowing what csf one produces to 'fill up' the system properly. Is this something that you've had done there?

Sorry for so many questions, but, as I'm sure you know only too well, when you find someone that might be in exactly the same position as you, you have to grab the chance to ask questions with both hands!

Many thanks Ali, I hope you are not feeling too bad at the moment (I know you have 24hr pain like me, but you know what I mean!), and I look forward to hearing from you when you are able to reply.

Best wishes and many thanks
Sarah
Hi Sarah,
So sorry about taking over half a year to reply. I've only just remembered about this site.
What the name of your surgeon at Queens called? Mr Watkins performed surgery on me and installed my shunt. My shunt is not effectively turned on at present as it was draining too much fluid when I caught MRSA on another leak repair area.
How is your shunt performing? Has it made any differences to your condition?

I've not heard of the dura reduction operation that Dr S does. Where did you hear about this and how successful has it been?

I've added you as a friend as I hope we can continue talking. Although immensely distressing, it's also very interesting to talk to somebody with the same underlying condition as me.

Ali
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