Anyone in Seattle???

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Anyone in Seattle???

Postby akbrowneyes » Fri May 25, 2007 7:41 pm

I am going to be there for Syringosubarachnoid Shunt Placement on June 14 with Dr. Ellenbogen. I get in on June 10 or 11. I would love to meet and talk about SM, which no one seems to understand.
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Location: Anchorage, Alaska

Postby tiki » Mon May 28, 2007 1:03 am

Hi There,
I'm in Olympia, Wa and new to SM myself. I would love to talk with you, not sure I'd be much help but I'm looking for a new nl or ns because I'm so frustrated with the care I've recieved since March. I wish I could tell you some great insight to calm your fears, but I can't. I can tell you that you have many people here on your side. I will be thinking of you on the 14th :D
Tanya
tiki
 

dr

Postby razzle51 » Mon May 28, 2007 4:38 am

Here is Dr. E . ADDY and etc :

Richard Ellenbogen, MD.

http://depts.washington.edu/neurosur/fa ... bogen.html
Chief of Pediatric Neurosurgery
Children's Hospital and Regional Medical Center
http://depts.washington.edu/neurosur/index.html
University of Washington School of Medicine
Seattle, Washington
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

User avatar
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Postby kathymichelle » Mon May 28, 2007 10:12 am

I should be back in Seattle by the 10jun, but will be in western WA and eastern Wa all summer.

Hope someone else comes along that can help more than me.
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Location: wheverer the nearest jet takes me

Postby Gracie Rose » Wed May 30, 2007 1:08 am

Hi,

I am in Lacey, WA, right next door to Olympia. I have had a decompression, fusion, spinal cord de-tethering. If I can help let me know. Dr. E is our son's NS so we are frequent flyers!!

We have 8 children and so far 5 have ACM, one with SM, and all 8 have EDS :shock: .

Lisa
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Postby mac » Wed May 30, 2007 4:18 pm

Lisa!! Welcome back to the board!! How are you doing since your own surgery? Been missin' you, galfriend!

the ol' cowgirl mac
mac
 

Postby Gracie Rose » Sun Jun 03, 2007 7:48 pm

Hi Mac,

I peek in every little while, but don't post much. I am doing pretty well after the surgeries, but it is quite the long recovery. I am so much slower at everything that computer time is few and far between.

TCI fixed soooo much but the stamina issue for me is the pitts. One of our 5 so far of the children with ACM/EDS has tethered cord too. Sheesh, I think we are trying to set a record!!!

We were just looking at your book yesterday and we still love it.

Lisa
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