Re: Anyone have a TC at the cervical level?

[Guest guest]

My ns is Dr. Frim at the university of Chicago. He is very good.

Sue

Subject: Anyone have a TC at the cervical level?

To: tetheredspinalcord

Date: Saturday, January 10, 2009, 7:40 PM

My cord is tethered from C3-C7. I have been told by a couple NS that

having my cord released at that level is very risky, so I have been

putting off the procedure for awhile. But I don't think I should put

it off much longer.

Do any of you have a TC in the same area as me? If so have you had

it released? Who was the NS? How did your procedure go?

Thanks

[Guest guest]

In a message dated 1/11/2009 12:27:06 A.M. Eastern Standard Time,

ybba112@... writes:

My ns is Dr. Frim at the university of Chicago. He is very good.

I've only ever heard of one other person tethered up that high, a little

girl who was tethered in upper thoracic levels I think... Her NS was also Dr.

Frim and he's done great things for them I'd definitely get in touch with

him. Good luck!

Connie

Mom to Sara 17, Nicky 10 (GI issues, megacolon), and 8

(CRS/VACTERLS incl. tethered spinal cord (repaired 9/00, 8/06) perineal

fistula imperforate anus (repaired 5/00, managed with daily Exlax), single

kidney, PDA (closed on its own), malformed pelvis and hemisacrum, long segment

lumbosacral levoscoliosis with hemivertebrae (spinal fusion T11-sacrum 8/06),

extra left rib, genital anomalies with hypospadius (repairs 9/00,11/00,

5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired 5/01) tibial

torsion

and 4.5cm length discrepancy - wears AFO and 3.5cm lift, SUA, GI reflux,

DGE/gastroparesis, mild swallowing dysphagia, eating issues and the most

beautiful smile ever)

conni60640@...

Our website: _http://members.tripod.com/conni60640-ivil/_

(http://members.tripod.com/conni60640-ivil/)

VACTERL/VATER support _http://health.groups.yahoo.com/group/VACTERLNetwork/_

(http://health.groups.yahoo.com/group/VACTERLNetwork/)

TC support group _http://health.groups.yahoo.com/group/LMC-TCS/_

(http://health.groups.yahoo.com/group/LMC-TCS/)

Congenital scoliosis support group

_http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/_

(http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/)

Anorectal malformations support - The Pull-Thru Network

_http://www.pullthrunetwork.org/index.php_

(http://www.pullthrunetwork.org/index.php)

S. Jersey

**************New year...new news. Be the first to know what is making

headlines. (http://www.aol.com/?ncid=emlcntaolcom00000026)

[Guest guest]

Hi , just curious...how did they diagnose you being tethered so high?

Seems the people looking at my MRI's only look to see if the cord is beyond L2

and if its not then they say you are not tethered. Did you have a CINE MRI?  

Subject: Anyone have a TC at the cervical level?

To: tetheredspinalcord

Date: Sunday, January 11, 2009, 1:40 AM

My cord is tethered from C3-C7. I have been told by a couple NS that

having my cord released at that level is very risky, so I have been

putting off the procedure for awhile. But I don't think I should put

it off much longer.

Do any of you have a TC in the same area as me? If so have you had

it released? Who was the NS? How did your procedure go?

Thanks

[Guest guest]

I had a tumor removed off the cord (C3-C7) in 95 when I was 13. About

5 years later I was diagnosed with the cord being tethered. The scar

tissue from that first surgery attached itself to the cord. You can

visually see the cord tethered in a MRI. I have been told by NS at

Hopkins, the Mayo, and a couple in California that since my cord

is tethered so high I have a higher risk factor at untethering it. I'm

wanting to find a NS who has released a cord at the cervical level.

I have gone to over 20 NS throughout the US looking, and they all

acted very confident that they could release my cord but then they

look at my MRI scans and comment that they have never seen a cord so

tethered at that level. That's when I say thanks but No Thanks. I need

a NS who has released a cord at my level. I feel I need it released

because my symptoms are getting worse.

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> Subject: Anyone have a TC at the cervical level?

> To: tetheredspinalcord

> Date: Sunday, January 11, 2009, 1:40 AM

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> My cord is tethered from C3-C7. I have been told by a couple NS that

> having my cord released at that level is very risky, so I have been

> putting off the procedure for awhile. But I don't think I should put

> it off much longer.

> Do any of you have a TC in the same area as me? If so have you had

> it released? Who was the NS? How did your procedure go?

>

> Thanks

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[Guest guest]

If it's any help looking a doctor familiar with it, I found these in

the U.S. who had published in medical journals about cervical TC:

Drs. Sheehan, Lopes and Jane at University of Virginia Health

Sciences, in Charlottesville; and Dr. Pang in California wrote an

article about cervical myelomenningocele.

If you've not contacted them, this might be another place to look...

V