Re: Options for surgery-Where would you go?

[Guest guest]

Cassandra,

I am in SLC also. I am having a rough time here as well. Been seen

by NS at the U of U. And that gets frustrating because they are

students and you always see someone different. I also have a NL at

the U and one outside the U and that is getting crazy too because the

NL I really like and trust at the U is a student and is graduating in

July. I have heard that if you have the money and have

chiari/tetherd cord etc...TCI in NY is the place to go. All of this

stuff is what they specialize in. I hear they are wonderful. But I

dont so I better just stick it out here in Utah...LOL

-Angie

>

> Hello Everyone,

>

> I do not post very much, but keep current on all posts for the

TCS group.

>

> I have been seen by two neurosurgeons in the past year and

looking to see another in April ( I am in Salt Lake City) It appears

that there several things going on with me, and each surgeron has a

different opinion on what should be done and/or the cause of the

current problems.

>

> My question to the group: If you were able to choose a

neurosurgeon and/or a hospital to treat you, where would you go? If

possible, can you be specific why?

>

> Thank you in advance for you help.

> Looking forward to hearing from you.

>

> Cassandra

>

>

> ---------------------------------

> Sucker-punch spam with award-winning protection.

> Try the free Yahoo! Mail Beta.

>

>

[Guest guest]

What is " TCI " in NYC?

Kerry McAteer

>

>Reply-To: tetheredspinalcord

>To: tetheredspinalcord

>Subject: Re: Options for surgery-Where would you go?

>Date: Thu, 15 Mar 2007 08:48:07 -0000

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>

>Cassandra,

>I am in SLC also. I am having a rough time here as well. Been seen

>by NS at the U of U. And that gets frustrating because they are

>students and you always see someone different. I also have a NL at

>the U and one outside the U and that is getting crazy too because the

>NL I really like and trust at the U is a student and is graduating in

>July. I have heard that if you have the money and have

>chiari/tetherd cord etc...TCI in NY is the place to go. All of this

>stuff is what they specialize in. I hear they are wonderful. But I

>dont so I better just stick it out here in Utah...LOL

>

>-Angie

>

>

>

>

> >

> > Hello Everyone,

> >

> > I do not post very much, but keep current on all posts for the

>TCS group.

> >

> > I have been seen by two neurosurgeons in the past year and

>looking to see another in April ( I am in Salt Lake City) It appears

>that there several things going on with me, and each surgeron has a

>different opinion on what should be done and/or the cause of the

>current problems.

> >

> > My question to the group: If you were able to choose a

>neurosurgeon and/or a hospital to treat you, where would you go? If

>possible, can you be specific why?

> >

> > Thank you in advance for you help.

> > Looking forward to hearing from you.

> >

> > Cassandra

> >

> >

> > ---------------------------------

> > Sucker-punch spam with award-winning protection.

> > Try the free Yahoo! Mail Beta.

> >

> >

[Guest guest]

My two year old son just had surgery at The Chiari Institute (TCI) in January.

Wonderful doctors!! The only place to go if feasible.

Henry

---- kmcateer McAteer wrote:

> What is " TCI " in NYC?

>

>

>

> Kerry McAteer

>

>

>

>

>

>

> >

> >Reply-To: tetheredspinalcord

> >To: tetheredspinalcord

> >Subject: Re: Options for surgery-Where would you go?

> >Date: Thu, 15 Mar 2007 08:48:07 -0000

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> >

> >Cassandra,

> >I am in SLC also. I am having a rough time here as well. Been seen

> >by NS at the U of U. And that gets frustrating because they are

> >students and you always see someone different. I also have a NL at

> >the U and one outside the U and that is getting crazy too because the

> >NL I really like and trust at the U is a student and is graduating in

> >July. I have heard that if you have the money and have

> >chiari/tetherd cord etc...TCI in NY is the place to go. All of this

> >stuff is what they specialize in. I hear they are wonderful. But I

> >dont so I better just stick it out here in Utah...LOL

> >

> >-Angie

> >

> >

> >

> >

> > >

> > > Hello Everyone,

> > >

> > > I do not post very much, but keep current on all posts for the

> >TCS group.

> > >

> > > I have been seen by two neurosurgeons in the past year and

> >looking to see another in April ( I am in Salt Lake City) It appears

> >that there several things going on with me, and each surgeron has a

> >different opinion on what should be done and/or the cause of the

> >current problems.

> > >

> > > My question to the group: If you were able to choose a

> >neurosurgeon and/or a hospital to treat you, where would you go? If

> >possible, can you be specific why?

> > >

> > > Thank you in advance for you help.

> > > Looking forward to hearing from you.

> > >

> > > Cassandra

> > >

> > >

> > > ---------------------------------

> > > Sucker-punch spam with award-winning protection.

> > > Try the free Yahoo! Mail Beta.

> > >

> > >

[Guest guest]

---Hi Cassandra,

I am originally from Ny I moved to Florida a couple of years ago.

I always thought Ny had the best Dr's in the world and granted there

are some exceptional Dr's here. But even the best mess up. I had

three Ny Dr's miss dg my son and now he has damage etc...

So dont feel bad that you have to stay where you are. I do believe

there are great Dr's in almost every city.

Good Luck

In tetheredspinalcord , Cassandra Fairclough

wrote:

>

> Hello Everyone,

>

> I do not post very much, but keep current on all posts for the

TCS group.

>

> I have been seen by two neurosurgeons in the past year and

looking to see another in April ( I am in Salt Lake City) It appears

that there several things going on with me, and each surgeron has a

different opinion on what should be done and/or the cause of the

current problems.

>

> My question to the group: If you were able to choose a

neurosurgeon and/or a hospital to treat you, where would you go? If

possible, can you be specific why?

>

> Thank you in advance for you help.

> Looking forward to hearing from you.

>

> Cassandra

>

>

> ---------------------------------

> Sucker-punch spam with award-winning protection.

> Try the free Yahoo! Mail Beta.

>

>

[Guest guest]

Hi ,

I'd like to second your comment about great neurosurgeon's being everywhere.

There are those that have become famous via television (Dr. Frim comes to mind)

and those where a lot of people go and speak of the great care (The Chiari

Institute), but then there are those neurosurgeons that keep trudging along,

doing what they're supposed to do - diagnose and treat those with neuro

conditions - and do a fantastic job.

The biggest issue for having an untethering, in my opinion, is to make sure the

doctor has realistic expectations, much experience - which usually means they

are titled as a pediatric nsg - and that you as the patient feel comfortable

with the nsg and the hospital where they are affiliated.

I had great experiences with my neurosurgeon in Maine - someone that no one I'm

sure has heard of, and I've seen an neurosurgeon here in NC that was just as

versed in tethered cord as any other doctor out there.

Kathy

Re: Options for surgery-Where would you go?

---Hi Cassandra,

I am originally from Ny I moved to Florida a couple of years ago.

I always thought Ny had the best Dr's in the world and granted there

are some exceptional Dr's here. But even the best mess up. I had

three Ny Dr's miss dg my son and now he has damage etc...

So dont feel bad that you have to stay where you are. I do believe

there are great Dr's in almost every city.

Good Luck

In tetheredspinalcord , Cassandra Fairclough

wrote:

>

> Hello Everyone,

>

> I do not post very much, but keep current on all posts for the

TCS group.

>

> I have been seen by two neurosurgeons in the past year and

looking to see another in April ( I am in Salt Lake City) It appears

that there several things going on with me, and each surgeron has a

different opinion on what should be done and/or the cause of the

current problems.

>

> My question to the group: If you were able to choose a

neurosurgeon and/or a hospital to treat you, where would you go? If

possible, can you be specific why?

>

> Thank you in advance for you help.

> Looking forward to hearing from you.

>

> Cassandra

>

>

> ---------------------------------

> Sucker-punch spam with award-winning protection.

> Try the free Yahoo! Mail Beta.

>

>

[Guest guest]

And the best way to figure out how much experience a

nsg has is to ask. Ask lots and lots of questions.

Ask how many of these surgeries he/she has done and

what the outcomes have been. Ask about post-surgical

treatment (they should want to follow your case for at

least a few years). Ask if they've treated both

adults and children (get a feel for the breadth of

their experience). Ask anything you might want to

know about a doctor who might cut your body open.

And if any of his answers make you question his

ability to do this job appropriately, go somewhere

else! I had a nsg tell me that my cord retethered (he

was right) and that all I needed was the filum

terminale " snipped " . It would only take him an hour,

and it would be simple. In his words a " piece of

cake " . He snapped his fingers. I never went back. He

was too flippant for me, and wasn't considering the

possibility that I might be right when I said my

lipoma grew back, or that my previous surgery might

have caused this and not just the filum terminale

" thing " . Thank goodness I followed my instincts. The

doctor who did the surgery thought it would take about

2 hours, but that it could be much longer depending on

the scarring from before. I asked him about the 1 hour

" piece of cake " filum snipping. He said that he

wasn't going to snip the filum unless he got in there

and found out he was wrong (he actually considered the

chance that he might be wrong about something!). He

didn't think the lipoma had grown back, either, but he

took my opinion into consideration and said while it

was possible, it wasn't probable, but he listened to

me and really considered it. Lo and behold, the

surgery took 6 hours, I was tethered to scar tissue,

and the lipoma had grown back. That first doctor

would have been completely unprepared for what was

really in there. I am SO SO SO SO glad I followed my

gut.

My nsg operates on both children and adults, more on

adults than children, but he was incredibly versed in

tethered cord, had done hundreds of detetherings, and

was very good at listening to me and not just patting

me on the head. Ask loads of questions and check

their answers. Two doctors can have very different

opinions on what should be done. That isn't unusual.

That's why you ask questions and then you have a feel

for which one you trust more.

--- DK Moulton wrote:

> Hi ,

>

> I'd like to second your comment about great

> neurosurgeon's being everywhere. There are those

> that have become famous via television (Dr. Frim

> comes to mind) and those where a lot of people go

> and speak of the great care (The Chiari Institute),

> but then there are those neurosurgeons that keep

> trudging along, doing what they're supposed to do -

> diagnose and treat those with neuro conditions - and

> do a fantastic job.

>

> The biggest issue for having an untethering, in my

> opinion, is to make sure the doctor has realistic

> expectations, much experience - which usually means

> they are titled as a pediatric nsg - and that you as

> the patient feel comfortable with the nsg and the

> hospital where they are affiliated.

>

> I had great experiences with my neurosurgeon in

> Maine - someone that no one I'm sure has heard of,

> and I've seen an neurosurgeon here in NC that was

> just as versed in tethered cord as any other doctor

> out there.

>

> Kathy

> Re: Options for surgery-Where would

> you go?

>

>

> ---Hi Cassandra,

>

> I am originally from Ny I moved to Florida a

> couple of years ago.

> I always thought Ny had the best Dr's in the world

> and granted there

> are some exceptional Dr's here. But even the best

> mess up. I had

> three Ny Dr's miss dg my son and now he has damage

> etc...

> So dont feel bad that you have to stay where you

> are. I do believe

> there are great Dr's in almost every city.

> Good Luck

>

> In tetheredspinalcord , Cassandra

> Fairclough

> wrote:

> >

> > Hello Everyone,

> >

> > I do not post very much, but keep current on all

> posts for the

> TCS group.

> >

> > I have been seen by two neurosurgeons in the

> past year and

> looking to see another in April ( I am in Salt

> Lake City) It appears

> that there several things going on with me, and

> each surgeron has a

> different opinion on what should be done and/or

> the cause of the

> current problems.

> >

> > My question to the group: If you were able to

> choose a

> neurosurgeon and/or a hospital to treat you, where

> would you go? If

> possible, can you be specific why?

> >

> > Thank you in advance for you help.

> > Looking forward to hearing from you.

> >

> > Cassandra

> >

> >

> > ---------------------------------

> > Sucker-punch spam with award-winning protection.

> > Try the free Yahoo! Mail Beta.

> >

> > [Non-text portions of this message have been

> removed]

> >

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

Looking for earth-friendly autos?

Browse Top Cars by " Green Rating " at Yahoo! Autos' Green Center.

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[Guest guest]

Hi,

Just to clarify, Ben is an adult, and was 22 at the time of his last procedure

at Mayo. He has previously had various neuro proceedures done in four states,

and we still has the best experience at Mayo. Our daughter's fiancee also went

there following three years of being unable to control his siezure disorder.

Within several months, following numerous tests, some of which weren't done

elsewhere, and a change in treatment, they had his siezures controled. He has

now gone for nearly a year without a siezure.

Like anything else choice of hospital and MDs comes down to personal preference.

We have all had good and bad experiences which impact the choices we make. We

do the best with what we have available to us.

Take care,

Diane

[Guest guest]

Cassandra,

We have a long story that I won't post here, but the short summary

is that my 10-year-old went undiagnosed with tethered cord and

lipoma until last fall, and urgently needed surgery. He has a

lengthy medical history of being the " 1 in 10 million " person on

several fronts, so we have extensive experience in dealing with

conditions that are not always clear, obvious or usual.

From this experience, I would add several pieces of advice to the

very good points already stated by the other members of this list.

* Make sure the surgeon you work with doesn't always recommend

surgery. Surgeons, like any doctor, feel pressured by patients and

themselves to " do something " , but sometimes surgery isn't the best

option at that time. The more surgeries one has, the more scar

tissue builds up and the greater the chance for retethering. In this

arena, many doctors are finding that less is more.

* Make sure that the surgeon you work with doesn't rely too heavily

on test results and scans. The best doctors we've worked with have

evaluated symptoms and quality of life and placed as much or more

emphasis on these than what the tests and scans show. Scans and

tests don't reveal everything, and they are merely one small

diagnostic tool. Sometimes, overworked surgeons rely too heavily on

what the scans show and are therefore unprepared for what they find.

The best doctor takes the time to gather every piece of information

that they can before making a decision.

* Find a surgeon who listens to you. Most patients have a very good

feel for what is " normal " for them and what is not. A good doctor

appreciates this and listens.

Sometimes the best doctor is nearby. The ns we used for my son is 10

minutes from our house! However, he was recruited by the Ft Worth

Children's Hospital from Oklahoma, and people come to him from

Kansas, Oklahoma, New Mexico, Arkansas, Missouri and Texas. He

laughed because it was odd that we lived so close. He was kind,

patient and understanding. We had no history with this guy, and were

thrown in with him completely stunned and overwhelmed with an urgent

need for surgery. We didn't know anything about him and vice versa -

and we came in with a kid with some extensive medical baggage and no

time to transfer all of his records. He listened and believed us. He

never questioned us, though we clearly took him to realms he hadn't

experienced before. He trusted us in the non-neurosurgical areas

(and made it clear to the hospital staff that they were to trust us

as well), and we trusted him in the ns arena.

The other big thing that stood out was his approach - he was not

cavalier about doing surgery. He said that many of the cases he sees

he doesn't recommend surgery for because the patients aren't

symptomatic yet (and surgery produces scarring and can cause

retethering and potentially make the problem worse). That's a double-

edged sword, as my son was not symptomatic for 10 years - then he

went through a major growth spurt and became VERY symptomatic very

quickly (luckily the detethering prevented any permanent damage).

But the point was that he works in conjunction with the

patient/parent to determine the best course of action. If they felt

more comfortable with preventative surgery, he did it. If not, he

was OK with that too. He gives recommendations for each individual

case, but is willing to work with each person for what they need.

Sorry this was lengthy, but it is a very good question!

Theresa

>

> Hello Everyone,

>

> I do not post very much, but keep current on all posts for the

TCS group.

>

> I have been seen by two neurosurgeons in the past year and

looking to see another in April ( I am in Salt Lake City) It appears

that there several things going on with me, and each surgeron has a

different opinion on what should be done and/or the cause of the

current problems.

>

> My question to the group: If you were able to choose a

neurosurgeon and/or a hospital to treat you, where would you go? If

possible, can you be specific why?

>

> Thank you in advance for you help.

> Looking forward to hearing from you.

>

> Cassandra

>

>

> ---------------------------------

> Sucker-punch spam with award-winning protection.

> Try the free Yahoo! Mail Beta.

>

>