small syrinxes gone...

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small syrinxes gone...

Postby denise » Mon Sep 17, 2012 3:04 pm

hi there, haven't posted here in many, many years but planning a trip to TCI in oct and just trying to get updated.

Briefly, 15 years ago an mri showed 3mm syrinx c4-7, but was told could not be causing pain problems. 6 years later and a visit to TCI with brain and full spine MRIs shows syrinx also at t5-8 and mild chiari.

About 5 years later, new MRIs show the syrinxes are gone. Repeat ones this week, same thing. Dr. Kula said they had never seen this and don't know why it happened (not complaining!!) but said once there is damage there is no fixing so that is why my symptoms are the same.

I of course worry about my ssdi as it looks like there is nothing wrong anymore. Just curious if anyone else has had this experience?

thx,
denise
denise
 
Posts: 51
Joined: Thu Aug 02, 2007 7:17 pm

Re: small syrinxes gone...

Postby stacy » Tue Sep 18, 2012 9:31 am

Wow, that's good news about the syrinxes being gone! Do you have any hunches at all on why this happened?

Sorry I can't help you on the SSDI info. My first thought is that since your doctor can vouch that the pain still persists, your benefits should stay the same. At least in my opinion.

It's something that with all this technology and research they can't figure out a way to fix the damage from your old syrinxes. There's got to be a solution coming soon. (fingers crossed!)
stacy
 
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Joined: Tue Sep 11, 2012 9:10 am

Re: small syrinxes gone...

Postby denise » Wed Sep 19, 2012 3:05 pm

thx stacy! and believe me i know that i am very blessed to have had it go this way and not the other! like many w/ small syrinxes it took me years (6) to get diagnosed and lots of "you're faking, you're depressed, you have fibro", so you get a little nervous!
denise
 
Posts: 51
Joined: Thu Aug 02, 2007 7:17 pm


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