Really hard question about syrinx

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Really hard question about syrinx

Postby marymac » Mon Feb 28, 2011 8:26 am

Hi Ho dear friends:
I try to write like we're one big family but this time I have one question I don't want to but have to ask: If my syrinx goes from C3-4 all the way down (conus), where will it go now, or does it just explode
or .leak? Been too chicken to ask but saw my NS last week and that's the question I so wanted to ask but brain fog set in. All 3 NS that I saw said I'm not a candidate for surgery. Does anybody know?
Sorry for the question but I need to know. Thanks all and have the most comfy day you can.
Love, hugs, fake smiles
Mary
Marymac
Central disc herniations C5-6 and C6-7, extensive syringohydromyelia cavity throughout the cervical & thoracic cord (large syrinx from C6 inferiorly.)

"Every day is a gift: Thats why it's called the Present"
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Re: Really hard question about syrinx

Postby angie7 » Mon Feb 28, 2011 8:36 am

My best educated guess is that it will likely start to get wider since it can't really get any longer. It may just stop altogether, who knows. I try not to worry about the what ifs and just take it as it comes. Worrying about things you cant control will just drive you crazy, lol! I take my life a day at a time and enjoy all that I can.

{{{{{{hugs}}}}}}}
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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Re: Really hard question about syrinx

Postby razzle » Mon Feb 28, 2011 4:11 pm

I agree with Angie , but have pad and pen on your kitchen table and when you have thought of a question to ask your dr , run in there and write it down. Thats what I do. take care .Roz
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: Really hard question about syrinx

Postby tennesseewalker » Mon Feb 28, 2011 5:07 pm

Hi Marymac,

It can expand upward, or it can get wider, or it can even do both. OR, it can remain stable. Take your pick. Whichever one happens, it will show in your symptoms. If they get worse, you know the syrinx is changing. If not, all the better. I vote they get better.

Mary
Mary
Genetic CM/SM (me, my son, my twin sister and both of her daughters), RSD of right arm.
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Re: Really hard question about syrinx

Postby tattoodlb1 » Sat Mar 05, 2011 7:27 pm

Holy Crap, our syringes are the same!!!!!!!!!!!!!!! Mine starts 4/5 and goes to end of conus, and is getting wider. That's all it can do is get wider. Or do nothing. Keep track symptoms.

Sorrry I'm so absent...... I don't mean to be...... my hectic life of a disabled person; I still gotta wright that book.......
Syringomyelia entire spinal cord including throughout conus, Chiari ? Hemangioma T2, Multiple Tarlov cysts; Empty sella & degenerative disc disease entire spine.. severe Fibromyalgia (central cord hypersensitivity).
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Re: Really hard question about syrinx

Postby marymac » Tue Mar 15, 2011 7:07 am

Thanks ya'll for the insight.
m
Marymac
Central disc herniations C5-6 and C6-7, extensive syringohydromyelia cavity throughout the cervical & thoracic cord (large syrinx from C6 inferiorly.)

"Every day is a gift: Thats why it's called the Present"
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