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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Joined: Fri May 25, 2007 7:27 pm
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


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

Here is Dr. E . ADDY and etc :

Richard Ellenbogen, MD. ... bogen.html
Chief of Pediatric Neurosurgery
Children's Hospital and Regional Medical Center
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!.

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Posts: 3281
Joined: Wed May 16, 2007 2:25 pm

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.
Posts: 469
Joined: Wed May 16, 2007 2:18 pm
Location: wheverer the nearest jet takes me

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


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: .

Gracie Rose
Posts: 127
Joined: Wed May 30, 2007 1:02 am

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

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.

Gracie Rose
Posts: 127
Joined: Wed May 30, 2007 1:02 am

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