Is this the beginning...

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Is this the beginning...

Postby akbrowneyes » Tue Feb 25, 2014 8:24 pm

I have dealt with syringomyelia since 2006 with steady increase of symptoms. Lately, I have been very scared because my left leg is becoming so numb that I am having trouble walking at times. I do not want to go towards surgery because of the being scared about the chance of waking up and being paralyzed. Is this the progression? Is there anyone who is now in a wheelchair due to this? Also, does anyone else have a problem with scratching yourself on your numb body parts until you bleed?

This is a link to my latest MRIs
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
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Location: Anchorage, Alaska

Re: Is this the beginning...

Postby syrinx48 » Sun Mar 02, 2014 5:46 am

Hello AK,

Of course I remember you from the old days. It's is just that I can't give you an answer. I understand that you are scared. My NS has told me also to come back when I can't walk anymore..... But if this is the progression I think no one can tell.

As far as the itching, it does remind me of the video's I have seen from the King Charles spaniels on you tube who had Chiari malformation and syringomyelis. They were going nuts about the itch they were having. Could it be the same? I don't know, possibly yes.

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Re: Is this the beginning...

Postby pseudotumor » Mon Mar 24, 2014 8:47 pm

I constantly scratch an itch until it bleeds. The tops of my feet are scarred up because of this because they get itchy at night and I scratch like crazy while half awake. But for some reassurance - though I do this to myself (and also burn/cut myself and don't even notice till I see blood or worst of all smell searing flesh *gross*) - I'm not anywhere close to losing my ability to walk, so it's not necessarily "the beginning". Hang in there. :)
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Re: Is this the beginning...

Postby taichi » Sun Mar 30, 2014 8:19 am

I have the same problem with itching especially on the feet . I have real dry skin. My muscles in my chest has been affected and does not carry enough blood and oxygen to my body. soon I will look like a prune.
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Re: Is this the beginning...

Postby birdlover3 » Tue Apr 01, 2014 6:47 am

I have to use a chair often, but it is due to my leg not working, not numbness. I have something like drop foot. A weather front can shut my leg down, but so can too much sodium, doing the wrong exercise, picking up something too heavy, or overdoing it. I sometimes have numb feelings in part of my leg or foot, but not all the time. I already had my symptoms, including walking and foot problems, before I was diagnosed. The NS said I've had my symptoms too long for surgery to help. He said the nerve damage is permanent. After the NS told me this, I went online and was able to support everything he told me that day.

You never get used to your leg not working, but it does get easier to accept overtime. I exercise my legs to keep my muscles strong just in case God allows me to walk again.
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