and Carmell Re: Syptoms of tethercord????

[Guest guest]

> >

> > Hi ,

> >

> > We have tethered cord experience (fatty filum,

> > specifically). The symptoms you are describing are

> > not a typical tethered cord symptom. The nerves to

> > the eyes are not that low. It could be that she has a

> > Chiari malformation. That would affect the eyes and

> > vision. Did Eliana have a head and full spine MRI?

> > If so, make sure these scans (not just radiologist

> > reports) are with you or sent to SLC before you get

> > there. They would need a brain and full spine MRI to

> > address these symptoms.

> >

> > The neurosurgeon you will be seeing is VERY good at

> > what he does (he did Braydon's tethered cord release).

> > Make sure you mention EVERYTHING to him. Make sure

> > the staff knows you are here from out of town and that

> > you need to get as much accomplished in one visit as

> > possible. Call ahead and confirm the visit and remind

> > them you are coming from out of town. Don't give them

> > an opportunity for mis-communication. (These comments

> > apply to anyone having a future appointment - not that

> > Dr. is unorganized, they are not.)

> >

> > <<...this is probably a dumb question, but can that be

> > a sign of decomphensation? If so, do you all think

> > waiting the 3 weeks till her appt in SLC is waiting to

> > long?>>

> >

> > It probably isn't decompensation, however it could be

> > an issue that needs to be addressed by a neurosurgeon

> > and/or a neuro-opthamologist. The U of U has a very

> > good neuro-opthamology group. I don't think waiting 3

> > weeks will make a big difference in permanent status

> > of the nerve function.

> >

> > <<(She also has a sacral dimple and walks on her

> > tiptoes alot)??????>>

> >

> > MAKE SURE to mention this (and everything else) to the

> > docs. Sacral dimple and toe-walking are signs of

> > already compromised nerves in the spinal cord. They

> > could also be benign. Only the neurosurgeon will be

> > able to tell you for sure.

> >

> > What day will you be meeting with Dr. ? (I

> > forgot). I would love to visit with you when you get

> > here (or before) if you are interested. I'll private

> > email you my phone number.

> >

> > Good luck and keep up the good work. Get everything

> > as organized and gathered together before your visit.

> > That way you won't leave any leaf unturned.

> >

> > Carmell

> >

> >

> >

> > mom to Kara 19, idiopathic scoliosis, Blake 15, GERD and Braydon

> 10, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl

> implant 8/01), thoracic insufficiency, rib anomalies, congenital

> scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC

> (released 4/99), anal stenosis, chronic constipation, horseshoe

> (cross-fused) kidney, dbl ureter in left kidney, ureterocele

> (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic

> bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial

> torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97,

> 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy

and

> ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/

> >

> >

> >

> > __________________________________

> > Start your day with - Make it your home page!

> > http://www./r/hs

> >

>