New check about Alaska...

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New check about Alaska...

Postby akbrowneyes » Wed Dec 14, 2011 5:05 am

Is there anyone who is living in Alaska (Anchorage) with SM/CM? It has been awhile since I have asked.
akbrowneyes
 
Posts: 45
Joined: Fri May 25, 2007 7:27 pm
Location: Anchorage, Alaska

Re: New check about Alaska...

Postby pmaxwell » Wed Dec 14, 2011 9:54 am

There are but I guess they are not on the message board.
Together We Can...
pmaxwell
 
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Joined: Mon Jan 31, 2011 2:20 pm

Re: New check about Alaska...

Postby pamela d » Mon Jan 02, 2012 4:32 pm

akbrowneyes,

My name is Pamela, and I live in Anchorage Alaska.

I noticed, yesterday, a post of mine you responded to, and responded to that one as well.
pamela d
 
Posts: 37
Joined: Tue Feb 17, 2009 3:34 am
Location: anchorage alaska

Re: New check about Alaska...

Postby AKShel » Mon Jan 09, 2012 2:57 pm

Yes, I live in Anchorage. Had decompression surgery in June for CM/SM. Syrnx from C4-T8 reduced in size but still there in late July. New MRIs done last week. I also have MS....but with many of the symptoms overlapping, it's hard to say which is from what....
AKShel
 
Posts: 17
Joined: Mon Jan 09, 2012 2:48 pm
Location: Anchorage, AK

Re: New check about Alaska...

Postby akbrowneyes » Sat Mar 24, 2012 1:26 pm

I would love to meet with you guys. I often feel alone with this disease and would love to find new friends who have an understanding.
Auto 6/1/94 -- Cervical Fusion C4-C7,
Ant & Post Surgeries
DX 7.5 mm SM 3/23/06 1 week after birth of 3rd Son
SM C3-T2
Lamin Decomp, Duraplasty 7/14/06
Shunt Placement Surgery 6/12/07
NS: Dr. Richard Ellenbogen Harborview Seattle, WA
akbrowneyes
 
Posts: 45
Joined: Fri May 25, 2007 7:27 pm
Location: Anchorage, Alaska

Re: New check about Alaska...

Postby pamela d » Sun Mar 25, 2012 3:08 am

akbrowneyes,

I would love to meet with you!

I have CM. NS did find a small syrinx, that did not show up on any MRIs. Lots of back, neck & neuro issues. It would be great to discuss any progress you have made, or just meet,and share stories. I too, feel alone with my issues at times. Husband is supportive, but I know it is a lot to grasp/understand .

Unfortunately, I am going to be out of town for a few weeks, but if you are interested in meeting, please send me a PM, and perhaps we can touch base before I leave.

Pamela
pamela d
 
Posts: 37
Joined: Tue Feb 17, 2009 3:34 am
Location: anchorage alaska

Re: New check about Alaska...

Postby AKShel » Fri Mar 30, 2012 2:26 am

I will PM both of you....if you don't get it, please ask Pamela to forward my contact info. I'm in anchorage and was diagnosed with MS, CM, and SM last year. I've had decompression surgery that initially reduced my syrinx....but it is refilling in three places and the hydrocephelus is increased. I was accepted to NIH study and head there on 16 April with VP shunt surgery planned for 20th....

We are an odd lot and I would love to connect in a positive way to share those things that make life better-easier....
AKShel
 
Posts: 17
Joined: Mon Jan 09, 2012 2:48 pm
Location: Anchorage, AK

Re: New check about Alaska...

Postby pamela d » Fri Mar 30, 2012 4:01 am

AkShel,

I got your PM, and have sent a reply.

Pamela
pamela d
 
Posts: 37
Joined: Tue Feb 17, 2009 3:34 am
Location: anchorage alaska

Re: New check about Alaska...

Postby AKShel » Tue May 01, 2012 3:54 pm

I am back in Anchorage. Was at NIH for a VP shunt. It seems to be helping some of my symptoms (mostly balance).For me, getting into the NIH study has been a very positive experience. The facility and staff were all wonderful. And, our world is so small, I met Reedy (you've probably seen some of her posts)

I think Pamela gets back on 7 May. Lets set up a time to get together.
AKShel
 
Posts: 17
Joined: Mon Jan 09, 2012 2:48 pm
Location: Anchorage, AK

Re: New check about Alaska...

Postby AKShel » Sun May 20, 2012 2:06 am

It would be nice for the Anchorage folks to get together...let's set up a time/place.
I'm back from NIH....VP shunt seemingly successful...followup in August.
Thank you, Gunflint, for the pointers...NIH was a very posative experience for me.
AKShel
 
Posts: 17
Joined: Mon Jan 09, 2012 2:48 pm
Location: Anchorage, AK

Re: New check about Alaska...

Postby akbrowneyes » Thu May 31, 2012 4:00 am

I am willing to meet. PM me & I will send my email. I often get beyond busy and don't check often enough. Is there a way to have responses or PMs send me an alert when I get one?
Auto 6/1/94 -- Cervical Fusion C4-C7,
Ant & Post Surgeries
DX 7.5 mm SM 3/23/06 1 week after birth of 3rd Son
SM C3-T2
Lamin Decomp, Duraplasty 7/14/06
Shunt Placement Surgery 6/12/07
NS: Dr. Richard Ellenbogen Harborview Seattle, WA
akbrowneyes
 
Posts: 45
Joined: Fri May 25, 2007 7:27 pm
Location: Anchorage, Alaska


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