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Washington Chiarians

Location: Seattle
Members: 20
Latest Activity: Jul 7

Discussion Forum

Conquer Chiari Walk

Started by Carlin Clayton. Last reply by Mandy Jun 18, 2013. 1 Reply

Hey guys, there is a Chiari walk this September in Tacoma and I highly urge you all to go!!! If you want to know any more information or would like to register for it please visit…Continue

Update on Group

Started by Destini. Last reply by Mandy May 19, 2013. 1 Reply

How are you Guys Doing?

Neurologist recommendations for WA state

Started by Mandy. Last reply by Crai Apr 8, 2013. 3 Replies

Hi all, I am new to the group.  I had my MRI done back in January, and the radiologist said everything was fine.  I had suspected Chiari from online research, and when I viewed my scans I could see…Continue

Summer 2013 Events Possibilities

Started by Destini. Last reply by Sarbearon Mar 19, 2013. 1 Reply

Good Evening Guys,My name is Kenya Aka Destini I intially started this group because I was told I had this rare condition and I was scared and felt alone and needed comfort. That was how I felt in…Continue

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Moderator
Comment by Destini on July 27, 2013 at 6:43pm
Hey all! How are you guys feeling? Just checking in on everyone.

Moderator
Comment by Destini on April 11, 2013 at 1:50pm
How are you guys doing? Please go not forget; if anyone need to talk, text, cry, vent, or just want comfort then you are welcome to text me @ 206-321-5389
Comment by Crai on April 5, 2013 at 4:53pm

Update: I saw Dr. Ellenbogen a couple weeks ago and he said that I have a herination of about 27mm and that "is an impressive malformation". He said that I do not have any of the spinal problems yet but he wants to do surgery as soon as possible to prevent them. He understood that I have to have sinus recontructive surgery done in my face to stop the constant sinus infection which the surgery as of right noe is secdualed for the end of May.


Moderator
Comment by Destini on April 2, 2013 at 8:47pm
I am writing to see if we can bring awareness to seattle
Comment by veerle on March 2, 2013 at 2:26pm

I've joined this group because Seattle is the referral city for Alaskans that need to see specialists.

Have recently been rejected by Ellenbogen's office after a staff member reviewed my mri, they do not consider me a surgical candidate due to what appears to be adequate spacing for csf flow. No CINE mri done yet just cervical. The plan is to refer me to a neurologist to manage pain. Problem is, i feel that I'm managing pain ok with lots of ibuprofen up to this point. The numbness of hands and feet, clumsiness,memory, speaking and visual issues is whats becoming the real challenges.

Any recommendations of local resources or specialists I should pursue. Was so hoping to see Ellenbogen to expedite a complete diagnosis and adequate management. 

Comment by Crai on February 18, 2013 at 10:40pm

Yes, I was refereed to Dr. Ellenbogen. I am just waiting for them to receive all of my information from the two neurologists I have seen over the years. As far as I know it will just been more tests and a consolation but I am still very nervous. I have heard mixed things about the surgery treatment.

Comment by stevesgrl on February 13, 2013 at 5:26pm

Crai, I had the opposite reaction from my doctor.  The neurologist told me it was no big deal and that it was all in my head (yes, he literally said that) so it has been 2 years since I was diagnosed and have not gone back to see another doctor.  Did they refer you to Dr. Ellenbogen?  I understand that he is a great doctor.  Good luck to you.

Comment by Crai on February 4, 2013 at 9:38pm

Hi,

I was just told I had CM and I'm a little terrified cause my doctor after one visit already wants me to see a neurosurgeon at the UW. I gues I am looking for more information about CM from what my neurologist said she thinks I have had it from birth because I was a preme she didn't say which type I had she only referred my to the neurosurgeon.


Moderator
Comment by Destini on December 28, 2012 at 9:44am

I apologize for not being on the site for a long time; my health took a severe downturn and i have to undergo another surgery in jan.

anyway how are you guys doing? tell me whatz been going on? did you guys have a good christmas? anything special for new years? how is your health?

feel me in please?

Comment by Tiffany P on June 16, 2012 at 11:21pm

The lectures Given at the UW by Dr. Ellenbogen and other physicians in April have now been posted at the CSF foundation website.  I have only had a chance to listen to 2 but found them very informative.  Hope you are all well.

 
 
 

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