Surgeon recs

[Guest guest]

Hi everyone

Does anyone have a surgeon you might highly recommend for a 4 year old

with tethered cord, it needs to be someone that accepts the concept of

an occult tethered cord.

Thanks

AG

[Guest guest]

Where are you located??

We are in Chichago, we saw Dr. Frim.

Tommi

www.caringbridge.org/visit/amandapeters

--- alexgmd wrote:

> Hi everyone

> Does anyone have a surgeon you might highly

> recommend for a 4 year old

> with tethered cord, it needs to be someone that

> accepts the concept of

> an occult tethered cord.

> Thanks

> AG

>

>

Tommi

's Mom

Chicago, IL. USA

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[Guest guest]

In a message dated 12/13/2007 10:06:52 P.M. Eastern Standard Time,

alexiagosp@... writes:

Does anyone have a surgeon you might highly recommend for a 4 year old

with tethered cord, it needs to be someone that accepts the concept of

an occult tethered cord.

When you say an occult tethered cord, do you just mean a doc who understands

that not all tethers are from LMC and that a fatty filum is a tethered cord?

Or one who is willing to think TC when the MRI doesn't show any obvious

issues?

I know our original surgeon and the one we used now both understand that a

fatty filum IS a tethered cord that usually needs to be taken care of. The

first one has also released a tight filum that didn't show obviously on MRI, but

the there was progression of leg tendon tightening and urological issues to

show symptoms that something was obviously wrong. The surgery itself did

find the cord to be tightly tethered and halted the progression. I don't know

the second surgeon's philosophy on this.

The first one to release is Dr. Sutton at CHOP (Philadelphia)

and he has a good reputation as neurosurgeon. His manner is clear and direct

rather than warm and fuzzy, but he'll definitely tell you what you need to

hear in terms you can understand.

The second is Dr. at AI duPont Hospital for Children, an

overall wonderful hospital that has used for all his specialists and

surgeries other than the anoplasty done in the NICU and the original TC

release.

He is very mild mannered and kind, also talks in understandable language.

He's not a " renowned " surgeon like Dr. Sutton, but he did a bang up job on

's retether release, freeing up two nerves that were tangled in scar

tissue

with minimal damage.

Where are you located, and who have you seen so far?

Connie

Mom to Sara 16, Nicky 9 (GI issues, megacolon), and 7

(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/)

S. Jersey

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