The Chiari Institute

[Guest guest]

Hi ,

I didn't want a debate - I was and am just honestly asking why they are private

and from what I read at their site, do not accept private insurance plans (or

any from what I read.) I just can't imagine what these costs do to a family and

again, it appears to be an elitist group (the institute) if in fact I am reading

their website correctly about the finances. And again, hopefully I'm

understanding their webpage incorrectly, but if they don't accept insurances,

who are they helping? Why won't they accept insurance plans? It just doesn't

make any sense to me and again - hopefully I'm misunderstanding their website.

The way I think - if doctors truly want to help a population of people that are

suffering from a specific diagnosis, why not help all and not just those that

can either afford their fees or have to raise the money to go there? And to

reiterate, you didn't address this issue, so I may be totally misunderstanding

what I read on their website.

Just one thing you wrote that I want to clarify or maybe help you understand

with a deeper understanding - you wrote:

I think it's curious that some people have needed multiple surgeries for tethers

by surgeons that do not have this amount of experience and do not use this

technology. Perhaps if it were done 100% the first time, there would not be

recurrent problems.

I am one that needed multiple surgeries. As I said, five untetherings in an

eight year span; last one about two and half years ago. The main reason for my

multiple untetherings? A symptomatic retether. Nothing a nsg does during

surgery can effect the outcome of a retether - nothing. I don't care what a

doctor at any institute is telling you - if they are saying they can avoid a

retether completely by this or that procedure, they're either talking out of

their ---- or have some great technique that they aren't sharing with the

medical community and don't want to share either in publications or by teaching

that technique to other nsgs, which if it is the latter, it would be an absolute

sin on their part. There have been nsgs that have tried different ways of

closure to avoid a retether, but most have had horrific outcomes. We've had

members who were paralyzed from some of these techniques. I try to keep up with

news on untetherings and I haven't read anything new on the procedure, but if

you know of something, it would be great if you'd share it. My nsg was quite

experienced.

Also, for me and some others with Lipomeningocele, which is what caused my

tether, the tumor (benign lipoma) is so engulfed in all the very fine nerves,

nerves that are inside, outside, tangled and knotted within the tumor - these

can't be completely freed up. The risks in completely " freeing " my cord would

be massive and almost a given of multiple, severe losses.

Just as there are so many types of problems that go with Chiari, there are many

type of tethers as you are probably learning if not already cognizant of. But,

before coming to the conclusion that there are Gods out there that can promise

no further deterioration after an untethering and leaving the " untethering " as a

blank canvas making it seem that there is only one type of tether and we can all

have it done correctly and only with one surgery, you may want to learn about

the different types, why some people, such as myself, get worse, and why some

get better. Also, you stated you may have had your tether for a long time -

most are born with a tether. There are some tethers that occur after a surgery

or an accident, but I believe most people afflicted have the diagnosis as a

birth defect, (including myself.) The reason most of us that are around my age

and older weren't diagnosed as children, beyond maybe not having symptoms that

screamed neurological, was that there wasn't MRI's when we were young. Also,

some members didn't have symptoms as children.

I only know of the Chiari Institute via what I read on their site and an old

friend of mine from Maine that had multiple surgeries by Dr. Milhorat - she

thinks the world of him, but again, my concerns were and are with what I read on

their site about not accepting insurances and now with the fact that they are,

from what I read in your note below, stating they can and will untether without

risk of future issues or surgery. Maybe that is a conclusion you came to from

some experiences people have had there? Or, are they actually stating this? At

any rate, I know when my friend had surgery by Dr. Milhorat years ago, he was

with affiliated with a hospital in NY. I didn't realize they had started their

own place until about a year ago...and I want to make it clear, I'm not debating

the Institute, not sure why anyone would want to do that, just trying to

understand their financial position.

Kathy

Re: Child needs HELP

First, I would like to thank everyone for the input and for the Shriner

information and other resources that may help. I really appreciate it! I will

get in touch with them this afternoon. And thank you to anyone that has taken

the time to visit Olivia's site.

Now, I really don't want to get into a giant debate about the Chiari

Institute, but I will talk a little about what I know.

Many people with chiari have a very simple malformation and any chiari

experienced neurosurgeon should be able to help them. There are also MANY of us

that have been decompressed and not been helped very much at all.

The big differences at TCI, are not their surgical experience alone, but the

fact that they concentrate on Chiari and Tethered cord and related other

problems and ONLY these things. For that reason, they are able to predict any

issues related to chiari and TC and deal with them upfront. Thus making the

surgery much more successful. And please don't underestimate surgical

EXPERIENCE. I was a surgical ICU nurse for 9 years before chiari and any one of

us could predict how a patient would do coming out of the operating room just by

looking at who did the surgery. We could predict who would have complications,

infections, poor outcomes....all by the surgeon's name.

The other BIG difference is that they use color doppler ultrasound in the

operating room and they are able to see very specifically if they have restored

cerebrospinal fluid flow. This is the same in chiari and tethered cord, as the

flow around the end of the cord is equally as important as the flow problems

with Chiari. They can find every little area that is a problem and correct it

the first time.

http://www.northshorelij.com/body.cfm?id=6460 & oTopID=6458 & PLinkID=6407

TCI does 3D CT scans for each patient to determine their exact, unique

skeletal structures and well as screening all patients for possible related

issues that complicate Chiari.

I think it's curious that some people have needed multiple surgeries for

tethers by surgeons that do not have this amount of experience and do not use

this technology. Perhaps if it were done 100% the first time, there would not be

recurrent problems.

In this particular case with Olivia, there is more than likely other issues,

including tethered cord and possibly basilar invagination or retroflexed

odontoid. TCI is THE place to deal with all these issues in unison. They realize

they are all connected. They don't just cut a chunk out of someone's head and

send them on their way. Robin, Olivia's mom, has done her homework. They do not

have a Chiari expert anywhere near them and they would have to travel no matter

what, so why not travel to the best.

For me personally, I have found that I most likely have a tethered cord for my

whole life, my cervical vertebrae are a mess with a herniation and severe

stenosis. I have pseudotumor and connective tissue (loose joints) problems as

well and none of these other issues were addressed with my first decompression

in 2002 here at home. And I see a chiari expert. He does not want to hear about

tethered cord. Refuses to even discuss it. He is a highly respected and well

know Chiari authority, so what else am I personally to do?? I should have gone

to the very best in the first place and maybe I wouldn't have lived with daily

pain for the last 5 years after my decompression. I've given 9 years of my life

to all this altogether, and I have had enough. I will make many sacrifices, as

will Olivia's family, but I will know I have done all I can to help myself.

The Chiari Institute has been completely dedicated and they have found that

many people with chiari actually need detethered BEFORE they are decompressed.

Before there is any more debate about TCI, I urge anyone that cares to speak out

to first spend some time and watch the videos at TCI's site. I think it would be

very difficult to come away unimpressed. There will soon be a video dealing with

their finding on tethered cord. The best place to begin is the " Our Experience "

video

http://www.northshorelij.com/body.cfm?id=6456 & oTopID=6456 & PLinkID=6407

Blessings to all,