Re: Neurosurgery appointment tomorrow

[Guest guest]

Happy vibes your way for sure. I assume you are an adult but they have sent

you to Children's? Lucky lucky you!! I fear for when they kick my daughter

out to door though her neurosurgeon assures us that wouldn't be until maybe

her mid to late 20's (after that I will simply bribe him)>

Randee

In a message dated 11/21/2007 12:55:46 A.M. Eastern Standard Time,

kitteneyez05@... writes:

Hi Everyone,

I am going to a neurosurgery appointment at Children's Hospital

tomorrow. I went to a neurosurgeon at Denver Health, but since tethered

cord is a congenital condition, they decided to send me to Children's.

I was wondering if any of you had any good advice for me? I am really

nervous. Neuros have a history of being less than helpful to me. I am

worried they are gonna disagree with the other guys and start trying to

run tests on me all over again. I don't want to do that. Some of them

were kind of traumatizing. I also had neuros try to tell me that all of

this was happening because I am depressed. For anyone who knows me,

they know that is a bunch of bull. Anyways, any advice would be

appreciated. Also happy vibes sent my way. Thanks!

Amy & Lowry

**************************************Check out AOL's list of 2007's hottest

products.

(http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

[Guest guest]

In a message dated 11/21/2007 12:55:31 A.M. Eastern Standard Time,

kitteneyez05@... writes:

I am going to a neurosurgery appointment at Children's Hospital

tomorrow. I went to a neurosurgeon at Denver Health, but since tethered

cord is a congenital condition, they decided to send me to Children's.

I was wondering if any of you had any good advice for me? I am really

nervous. Neuros have a history of being less than helpful to me.

Who are you seeing? Dr. Handler is supposedly very helpful, as noted in the

children's TC group circles... Fingers crossed that anyone in that group is

receptive... Do you have have your films, test results ready to bring with

you, or have they already been sent to the doc?

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

**************************************Check out AOL's list of 2007's hottest

products.

(http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

[Guest guest]

Definitely sending hugs your way!! I hope that you find a good neuro!!

Amber

>

> Hi Everyone,

> I am going to a neurosurgery appointment at Children's Hospital

> tomorrow. I went to a neurosurgeon at Denver Health, but since tethered

> cord is a congenital condition, they decided to send me to Children's.

> I was wondering if any of you had any good advice for me? I am really

> nervous. Neuros have a history of being less than helpful to me. I am

> worried they are gonna disagree with the other guys and start trying to

> run tests on me all over again. I don't want to do that. Some of them

> were kind of traumatizing. I also had neuros try to tell me that all of

> this was happening because I am depressed. For anyone who knows me,

> they know that is a bunch of bull. Anyways, any advice would be

> appreciated. Also happy vibes sent my way. Thanks!

>

> Amy & Lowry

>

[Guest guest]

Hi Amy,

I switched to a pediatric neurosurgeon and it was the smartest move I ever

made. I actually had a different diagnosis for every doctor I saw until I

started going to a pediatric doctor who had experience treating tethered

cord, spina bifida, Chiari, etc... The doctors who see those problems the

most usually catch these things in infancy and early childhood. I just

happened to be born before the MRI :-( and then misdiagnosed.

I am willing to bet you are in excellent hands having been through the

circuit myself with all sorts of doctors, some who actually refused to even

have me as a patient.

Good luck and let us know how things go.

M.

> Hi Everyone,

> I am going to a neurosurgery appointment at Children's Hospital

> tomorrow. I went to a neurosurgeon at Denver Health, but since tethered

> cord is a congenital condition, they decided to send me to Children's.

> I was wondering if any of you had any good advice for me? I am really

> nervous. Neuros have a history of being less than helpful to me. I am

> worried they are gonna disagree with the other guys and start trying to

> run tests on me all over again. I don't want to do that. Some of them

> were kind of traumatizing. I also had neuros try to tell me that all of

> this was happening because I am depressed. For anyone who knows me,

> they know that is a bunch of bull. Anyways, any advice would be

> appreciated. Also happy vibes sent my way. Thanks!

>

> Amy & Lowry

>

>

>

>

[Guest guest]

Hi guys,

Thanks for sending all the good vibes and wishes my way. I am just on the

brink of being to old to go there. I'm 20, so it takes a bit of pestering the

insurance company. My friend who has spina bifida goes to dr. handler and has

said good things. I am actually thinking I am seeing the other guy though.

Really not sure. I have the disc with all info in my backpack ready to go.

Anyways, I am off to get ready. I give everyone an update when I get home. BTW:

Lowry ,my service dog, says " Stretch, wiggle, groan, tail wag " Translated: " Good

morning everyone, I get to play in the snow! "

Amy & Lowry

Meiser wrote:

Hi Amy,

I switched to a pediatric neurosurgeon and it was the smartest move I ever

made. I actually had a different diagnosis for every doctor I saw until I

started going to a pediatric doctor who had experience treating tethered

cord, spina bifida, Chiari, etc... The doctors who see those problems the

most usually catch these things in infancy and early childhood. I just

happened to be born before the MRI :-( and then misdiagnosed.

I am willing to bet you are in excellent hands having been through the

circuit myself with all sorts of doctors, some who actually refused to even

have me as a patient.

Good luck and let us know how things go.

M.

> Hi Everyone,

> I am going to a neurosurgery appointment at Children's Hospital

> tomorrow. I went to a neurosurgeon at Denver Health, but since tethered

> cord is a congenital condition, they decided to send me to Children's.

> I was wondering if any of you had any good advice for me? I am really

> nervous. Neuros have a history of being less than helpful to me. I am

> worried they are gonna disagree with the other guys and start trying to

> run tests on me all over again. I don't want to do that. Some of them

> were kind of traumatizing. I also had neuros try to tell me that all of

> this was happening because I am depressed. For anyone who knows me,

> they know that is a bunch of bull. Anyways, any advice would be

> appreciated. Also happy vibes sent my way. Thanks!

>

> Amy & Lowry

>

>

>

>

[Guest guest]

Hi All,

I am back from todays appointment. The disc I had with all my medical

information on it was busted, but with they history we gave, and the fact the

dr. knows the other neurosurgeon I saw, he went ahead and scheduled detethering

surgery. He won't do it until he sees the films and whatnot, but he wants it

scheduled so we can get it done as quickly as possible. I plan to go ahead and

get the new disc on monday of next week. We plan for the surgery to be around

the 11th. My next goal is to get my urology appt moved up since as it stands, it

conflicts with my surgery date. Since they have been so busy trying to figure

out whats wrong with my movement, they haven't even checked my bladder function,

which isn't to great. Kind of a tangled web.

Thanks,

Amy and Lowry

Meiser wrote:

Hi Amy,

I switched to a pediatric neurosurgeon and it was the smartest move I ever

made. I actually had a different diagnosis for every doctor I saw until I

started going to a pediatric doctor who had experience treating tethered

cord, spina bifida, Chiari, etc... The doctors who see those problems the

most usually catch these things in infancy and early childhood. I just

happened to be born before the MRI :-( and then misdiagnosed.

I am willing to bet you are in excellent hands having been through the

circuit myself with all sorts of doctors, some who actually refused to even

have me as a patient.

Good luck and let us know how things go.

M.

> Hi Everyone,

> I am going to a neurosurgery appointment at Children's Hospital

> tomorrow. I went to a neurosurgeon at Denver Health, but since tethered

> cord is a congenital condition, they decided to send me to Children's.

> I was wondering if any of you had any good advice for me? I am really

> nervous. Neuros have a history of being less than helpful to me. I am

> worried they are gonna disagree with the other guys and start trying to

> run tests on me all over again. I don't want to do that. Some of them

> were kind of traumatizing. I also had neuros try to tell me that all of

> this was happening because I am depressed. For anyone who knows me,

> they know that is a bunch of bull. Anyways, any advice would be

> appreciated. Also happy vibes sent my way. Thanks!

>

> Amy & Lowry

>

>

>

>

[Guest guest]

Well its good that you got something accomplished!! Hope you get

everything figured out soon!

Amber

>

> > Hi Everyone,

> > I am going to a neurosurgery appointment at Children's Hospital

> > tomorrow. I went to a neurosurgeon at Denver Health, but since

tethered

> > cord is a congenital condition, they decided to send me to Children's.

> > I was wondering if any of you had any good advice for me? I am really

> > nervous. Neuros have a history of being less than helpful to me. I am

> > worried they are gonna disagree with the other guys and start

trying to

> > run tests on me all over again. I don't want to do that. Some of them

> > were kind of traumatizing. I also had neuros try to tell me that

all of

> > this was happening because I am depressed. For anyone who knows me,

> > they know that is a bunch of bull. Anyways, any advice would be

> > appreciated. Also happy vibes sent my way. Thanks!

> >

> > Amy & Lowry

> >

> >

> >

> >

>

>

[Guest guest]

In a message dated 11/21/2007 10:19:49 P.M. Eastern Standard Time,

kitteneyez05@... writes:

We plan for the surgery to be around the 11th. My next goal is to get my

urology appt moved up since as it stands, it conflicts with my surgery date.

Since they have been so busy trying to figure out whats wrong with my movement,

they haven't even checked my bladder function, which isn't to great.

Amy, best of luck with this! Did you get the uro date moved up? Find

anything?

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

**************************************Check out AOL's list of 2007's hottest

products.

(http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)