SCARED!!

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SCARED!!

Postby Annmarie211 » Sat May 07, 2011 1:34 pm

Hi,It has been a while since I have been on here.so much has changed with my condition.I have SYRINGOBUBIA and I have had 2 NS look at my syrinx and tell me an operation would not help,not that I am looking for an operation.I was DX in 1980 and am now 51 and can not do anything on my own,my numbness is worse I am on a purieed diet.I just want to know if it is normal to feel this way,without any change to my syrinx? sometimes I just feel like I am dying!! thank you for any responses.
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Re: SCARED!!

Postby karenb » Sat May 07, 2011 5:30 pm

AnneMarie,

I don't have any practical advice to offer - I will definitely be keeping you in my prayers and wil be sending positive thoughts your way.

I hope you find some answers soon!

Karen
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Re: SCARED!!

Postby Janice » Mon May 09, 2011 12:06 pm

Hi Annemarie! Welcome back!

I'm so sorry to hear of what you're going through. We seem to be in similar situations, aside from the puried diet.

Based on my experience, symptoms can progress regardless of syrinx growth. The symptoms worsen over time, but I've also had progression & MRI shows growth. To me, those seem to be the times when I've experienced more severe progressions.

It never hurts to request an MRI after a progression. This way you can track the progression versus syrinx growth, or non-growth, as it relates to you. You might notice the difference in severity, or other anomalies.

Take care, love & hugs!
Last edited by Janice on Mon May 16, 2011 1:20 pm, edited 1 time in total.
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

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Re: SCARED!!

Postby wendi » Tue May 10, 2011 10:11 am

Hello and I am glad you are back, but sorry for the reason. We are here for you. Maybe if you are not alone, you won't feel so scared. We are in this together. We care about you and will hold your hand, or offer our shoulder if you need one to cry on.

Take care,
Wendi
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
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Re: SCARED!!

Postby karenb » Sat May 14, 2011 4:05 pm

Hi Annemarie,

Haven't noticed any posts from you in a bit, and just wanted to check in and see how you're doing...

Karen
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Re: SCARED!!

Postby marymac » Fri May 27, 2011 7:21 am

Hi Ho Annamarie:

Being scared is one of the worst things for some of us: just gets us worked up or depressed. Maybe they could switch meds around so you don''t feel so scared or lonely. You always have us to talk to. At one point or another in a day, many of us get scared with the smallest things remind us of what we're dealing with. . . you are so NOT alone.
Music helps me. I bang tunes as loud as I want on my favorite thing and don't stop until my fingers won't go. Then at least I have something pleasant in there (my little brain) :P besides gloom and doom.
then
smile at yourself in the mirror, you gorgeous gal, you!
Take care
Smiles, fake or real
Marymac
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: SCARED!!

Postby marymac » Fri May 27, 2011 7:23 am

PS: Isn't amazing none of us can spell your name? hah, lol Annmarie!
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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marymac
 
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