Re: Tethered Cord surgeon needed

[Guest guest]

Do you know what type of tether she has -- eg a fatty/thick filum terminale or a

lipoma (there are a couple other types, these are the most common). I am

suspecting it is a fatty/thick filum from your description of surgery. I had

this type of surgery done a few years ago at age 42. Has she been screened for

chiari malformation? (this would entail a brain MRI)? I am asking this due to

the other head symptoms.

If it is a tight/fatty filum the filum terminale at the end of the spinal cord

gets cut -- check out the link below for a good description of this -- Nina, a

group member, put this website togethers years ago and can likely explain it all

better than I can. More than willing to give you more information if this is

the type of tether she has. Hopefully someone will chime in with some

neurosurgeon recommendations -- and we all will likely tell you to get at least

two opinions before going ahead with surgery.

Dee

http://www.btinternet.com/~tetheredcordresources/

To: tetheredspinalcord

From: kh98@...

Date: Wed, 18 May 2011 02:17:20 +0000

Subject: Tethered Cord surgeon needed

Hi everyone. My wife (36) has had unexplained symptoms for two years -pain in

head,neck, and lower back, burning in hips, some convulsions, urinary

infections, dizziness and unstable, etc... She has recently been diagnosed with

tethered cord syndrome and told needed surgery. We are having a hard time

finding neurosurgeons experienced with this and are willing to travel anywhere.

Anyone heard good or bad about The Chiari Institute in New York or Hopkins

in land? Also, I don't understand the surgery - we were told the doctor cuts

the cord in half - is this correct? Thank you for your help.

[Guest guest]

It took me almost a year to find a surgeon, but she is a good surgeon. Dr.

Marilyn Gates at Henry Ford Hospital in Detroit MI. Not sure where you are

from, so that might be too far to travel. Patsy

>

> Hi everyone. My wife (36) has had unexplained symptoms for two years -pain in

head,neck, and lower back, burning in hips, some convulsions, urinary

infections, dizziness and unstable, etc... She has recently been diagnosed with

tethered cord syndrome and told needed surgery. We are having a hard time

finding neurosurgeons experienced with this and are willing to travel anywhere.

Anyone heard good or bad about The Chiari Institute in New York or Hopkins

in land? Also, I don't understand the surgery - we were told the doctor

cuts the cord in half - is this correct? Thank you for your help.

>

[Guest guest]

No, mds do not cut the cord..they usually " release " the cord so that it is

not pulled taut but there are many types of tethers. A good NSG should

give you an easy to understand explanation of both your wife's condition and

the surgery he/she will perform. I only have experience with pediatric NSGs

but I know you will get excellent advice from others here. Much good luck

to you both. Randee

In a message dated 5/17/2011 9:17:33 P.M. Central Daylight Time,

kh98@... writes:

Hi everyone. My wife (36) has had unexplained symptoms for two years -pain

in head,neck, and lower back, burning in hips, some convulsions, urinary

infections, dizziness and unstable, etc... She has recently been diagnosed

with tethered cord syndrome and told needed surgery. We are having a hard

time finding neurosurgeons experienced with this and are willing to travel

anywhere. Anyone heard good or bad about The Chiari Institute in New York or

Hopkins in land? Also, I don't understand the surgery - we were

told the doctor cuts the cord in half - is this correct? Thank you for your

help.

[Guest guest]

TCI has had a lot of problems in the past. I have heard horror stories about

their follow up care (basically nonexistent), and also some lawsuits filed

in the not too recent past. Even before those stories, I wouldn't recommend

them. IMO, they don't do any different technique than a skilled pedi

neurosurgeon that has lots of experience with TC. I would find a good pedi

nsg that specializes in NTDs and go to one of them. Additionally, you won't

end up having to put a second mortgage on your house to foot the bill by

going to a pedi nsg, vs going to TCI. I would recommend Dr. Frim (Chicago)

and Dr. Fuchs (NC).

Jenn

>

>

> Hi everyone. My wife (36) has had unexplained symptoms for two years -pain

> in head,neck, and lower back, burning in hips, some convulsions, urinary

> infections, dizziness and unstable, etc... She has recently been diagnosed

> with tethered cord syndrome and told needed surgery. We are having a hard

> time finding neurosurgeons experienced with this and are willing to travel

> anywhere. Anyone heard good or bad about The Chiari Institute in New York or

> Hopkins in land? Also, I don't understand the surgery - we were

> told the doctor cuts the cord in half - is this correct? Thank you for your

> help.

>

>

>

[Guest guest]

Hi I used Columbia presbyterian in NYC (Dr.Feildstien and team) amazing!! Loved

that hospital and team. When I was 23. The surgeries technical name is

Laminectomy. They go in makeing about a 3 in cut into back usially two vertabrea

above point of thether example mime was l4-5 so my scad is about 6 in from my

but crack. Then they remove 1/2 of a vertebra bone the just sand it down which

enables them to reach the tethered spinal cord. When they get to the cord if

there is a lipoma 9/10 they remove it and then snip away at the nerves or extra

cord while monitoring nerve waves via a machine if no activity they cut it. They

will try to cut and free as much as possible if your lucky they will free the

whole spinal cord which will allow for the cord to freely hang and move up and

down which currently it can not. If you have post surgery or other questions

feel free to ask! You can privite message me at LTbunny192@...

This message was sent from s' iPhone. Apologies if it does not format

corectly.

> Hi everyone. My wife (36) has had unexplained symptoms for two years -pain in

head,neck, and lower back, burning in hips, some convulsions, urinary

infections, dizziness and unstable, etc... She has recently been diagnosed with

tethered cord syndrome and told needed surgery. We are having a hard time

finding neurosurgeons experienced with this and are willing to travel anywhere.

Anyone heard good or bad about The Chiari Institute in New York or Hopkins

in land? Also, I don't understand the surgery - we were told the doctor cuts

the cord in half - is this correct? Thank you for your help.

>

>

[Guest guest]

Dr. Jallo at s' Hopkins is a pediatric neurosurgeon that also sees adults

with tethered cord. He did two of my three surgeries and was fabulous.

Tethered Cord surgeon needed

Hi everyone. My wife (36) has had unexplained symptoms for two years -pain in

head,neck, and lower back, burning in hips, some convulsions, urinary

infections, dizziness and unstable, etc... She has recently been diagnosed with

tethered cord syndrome and told needed surgery. We are having a hard time

finding neurosurgeons experienced with this and are willing to travel anywhere.

Anyone heard good or bad about The Chiari Institute in New York or Hopkins

in land? Also, I don't understand the surgery - we were told the doctor cuts

the cord in half - is this correct? Thank you for your help.

[Guest guest]

I am 51 and have had two surgeries for TCS. They cut the cord where it is

tethered to allow it to float freely like it is suppose to. I had a pediatric

neurosurgeon that did mine both times. My cord got to L3 and retethered due to

spinal stenosis. I haven't heard anything about these two places since I live in

Florida. I continue to have symptoms but that is due to the fact that they

didn't find mine until so late in life. I am glad they figured it out so they

can take care of it. Please keep us posted.

To: tetheredspinalcord

From: kh98@...

Date: Wed, 18 May 2011 02:17:20 +0000

Subject: Tethered Cord surgeon needed

Hi everyone. My wife (36) has had unexplained symptoms for two years

-pain in head,neck, and lower back, burning in hips, some convulsions, urinary

infections, dizziness and unstable, etc... She has recently been diagnosed with

tethered cord syndrome and told needed surgery. We are having a hard time

finding neurosurgeons experienced with this and are willing to travel anywhere.

Anyone heard good or bad about The Chiari Institute in New York or Hopkins

in land? Also, I don't understand the surgery - we were told the doctor

cuts the cord in half - is this correct? Thank you for your help.

[Guest guest]

please do research on the chiari institute before you consider it.  do you live

in the north east?

 

Subject: Tethered Cord surgeon needed

To: tetheredspinalcord

Date: Tuesday, May 17, 2011, 10:17 PM

 

Hi everyone. My wife (36) has had unexplained symptoms for two years -pain in

head,neck, and lower back, burning in hips, some convulsions, urinary

infections, dizziness and unstable, etc... She has recently been diagnosed with

tethered cord syndrome and told needed surgery. We are having a hard time

finding neurosurgeons experienced with this and are willing to travel anywhere.

Anyone heard good or bad about The Chiari Institute in New York or Hopkins

in land? Also, I don't understand the surgery - we were told the doctor cuts

the cord in half - is this correct? Thank you for your help.

[Guest guest]

I love Dr Jallo!!! He is amazing and very knowledgeable of tethered cord. He is

apart of my daughter's team

On May 18, 2011, at 6:12 AM, " The McPherson's "

wrote:

> Dr. Jallo at s' Hopkins is a pediatric neurosurgeon that also sees adults

with tethered cord. He did two of my three surgeries and was fabulous.

>

> Tethered Cord surgeon needed

>

> Hi everyone. My wife (36) has had unexplained symptoms for two years -pain in

head,neck, and lower back, burning in hips, some convulsions, urinary

infections, dizziness and unstable, etc... She has recently been diagnosed with

tethered cord syndrome and told needed surgery. We are having a hard time

finding neurosurgeons experienced with this and are willing to travel anywhere.

Anyone heard good or bad about The Chiari Institute in New York or Hopkins

in land? Also, I don't understand the surgery - we were told the doctor cuts

the cord in half - is this correct? Thank you for your help.

>

>

[Guest guest]

To add to Randee,  if your wife has a tight/fatty/thick filum (usually less

complicated than an one w/ lipoma) they normally release the cord by cutting the

filum.  The filum is at the end of the spinal cord.  At the end of the spinal

cord is called a conus then there is a 'filum that is like a rubber band that

attaches the spinal cord to somewhere near the coccys/sacrum) that filum is

suppose to act like a rubber band and let the spinal cord float and move up and

down the spinal column.easily when you move.  But when that filum is more like

a

string tight/thick/fatty it does not stretch/is taut/tight and hold the conus

down low.  A normal conus level should be above L2.  When it is below, and

with

symptoms it could be considered tethered.  My dd's conus was at the bottom of

L2

so there was one ped nsg that said she did not have tcs.  So there are some

controversy.  She did have a thick filum 3mm vs less than 2mm(normal) was

symptomatic and lucky that 2nd nsg said yes and did the surgery.

By the spinal cord not being able to float freely this tautness/tightness causes

the spinal nerves to lose function and if it is left long enough the

symptoms could worsen and become permanent. Not sure if this makes sense.

I would try and find a peds nsg instead of a reg nsg. one that will do adults

also.  There are many here with good peds nsgs recommendations.

Have heard of not so good things with the Chiari institute. 

Does your wife also have a Chiari?  To explan her headaches. Sometimes they go

together.

Good luck.  Carol

________________________________

To: tetheredspinalcord

Sent: Tue, May 17, 2011 7:49:46 PM

Subject: Re: Tethered Cord surgeon needed

 

No, mds do not cut the cord..they usually " release " the cord so that it is

not pulled taut but there are many types of tethers. A good NSG should

give you an easy to understand explanation of both your wife's condition and

the surgery he/she will perform. I only have experience with pediatric NSGs

but I know you will get excellent advice from others here. Much good luck

to you both. Randee

In a message dated 5/17/2011 9:17:33 P.M. Central Daylight Time,

kh98@... writes:

Hi everyone. My wife (36) has had unexplained symptoms for two years -pain

in head,neck, and lower back, burning in hips, some convulsions, urinary

infections, dizziness and unstable, etc... She has recently been diagnosed

with tethered cord syndrome and told needed surgery. We are having a hard

time finding neurosurgeons experienced with this and are willing to travel

anywhere. Anyone heard good or bad about The Chiari Institute in New York or

Hopkins in land? Also, I don't understand the surgery - we were

told the doctor cuts the cord in half - is this correct? Thank you for your

help.