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looking for answers

Postby debh » Sat Mar 29, 2008 9:03 am

Hi guys, I have been to 4 NS-2 professors from philly, and Dr. Benzel from CC-all said that my syrinx is incedental(stable for 3+ years, very skinny) and not my problem-Dr. Benzel told me fibromyalgia which a rhuemy agreed-he is a specialist in syrinxes-Yes? He did his own tests,( MRIsfrom head to tail with spinal fluid flow test), at the CC and came up with the same diagnosis. I feel uncomfortable with the diagnosis and I am heading to the TCI-I have a hard time accepting it soooooo I am sending in my new patient info to the TCI -my intuition is telling me go Debbie! -something inside me is urging me to TCI-I believe something is causing it-pulling of my spine -rotated pelvis-which I believe is causing my functional scoliosis-complete straight neck pulling on spine-degenerative disc disease in neck? Am I crazy to doubt Dr. Benzel"s diagnosis? Naaah, I am making this-maybe- my last stop. yada yada :idea:
debh
 
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Postby rainbowz » Sat Mar 29, 2008 9:12 am

Hi Deb,

No you aren't crazy. Keep following your gut just like you have been and you'll see it will pay off. You are doing a great job making sure that you get the answers you need. Whatever happens at TCI won't it be worth knowing for sure what is going on with you? Rather than wondering and not knowing. I would say so. Good luck with your workup there.

Lacey
Thoracic SM T3-T8
Herniated discs T1-T2 and T9-T10
10 degree Scoliosis T4-T9
rainbowz
 
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Postby docrx » Sat Mar 29, 2008 9:47 am

Go Go Go!! We always need to follow our gut! Everyone has the right and need to be comfortable with his/her diagnosis and treatment plan. You said you were not comfortable- so go on to TCI. If they tell you the same thing as Benzel- then at least you will have a piece of mind. If they tell you something different then you will be glad you went for that reason too. . .see what I mean? You should go!
Amanda
Every Day is a Blessing from God!
Mom to one beautiful baby girl

Syrinx C6-C7 5mm
OTC- surgery Sept 16
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Postby Beverley » Sat Mar 29, 2008 10:11 am

I think you should always follow your instincts.

I would rather say, I have been to all the best and they all agree than to keep thinking that there is a chance that they were wrong.

That being said, even if TCI agrees, it will still bear keeping an eye on for further development and changes.

Beverley
Decompression Surgery Feb 8, 2008 w/Duraplasty & Laminectomy C-1&2
Cervical Disc Fusion 11/08 C5&6/6&7- Mild Disc Bulge L2-Focal Hemangioma
L2-L5-Lipoma 3mm L4&L5-Disc Bulge T11&T12-DDD
Dopa-Responsive Dystonia (DRD)
Beverley
 
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Postby cash71 » Sat Mar 29, 2008 11:33 am

HI Deb,

I am so glad you are following your gut feeling. In my experience they are never wrong. Who know your body better than you?.......NOBODY!!! I knew that something was seriously wrong with me too even though the local ns told me it was just a syrinx that was too small to be causing any symptoms. I went ahead and travelled to TCI where I was dx with Chiari zero, cranial settling, Occult tethered cord, POTS/dyautonomia and ?EDS. So I was 100% right.

It was such a relief to get answers finally to the never ending questions going thru my head. whatever answers you get there at least you will have answers. The unknown is the worst to deal with.

Good luck and let us know when you get an appt.

Caroline
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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