Re: syrinx

[Guest guest]

Hi Sue,

They found a syrinx at the same time my tethered (and split) cord was diagnosed

via MRI. Mine was in the lumbar area. I researched syringomyelia and found a

wealth of info and support on the American Syringomyelia & Chiari Alliance

Project website. As I recall, I don't think they are operated on that

frequently, although some people get shunts. The goal is to address the cause of

the syrinx rather than the syrinx itself. In my case the doctors thought the

tethered cord was the cause of my syrinx, and thankfully it did collapse within

6 months of my detethering. Many people have nothing done at all; they just

monitor the syrinx.

Hope this helps a little,

Patty

[Guest guest]

Hi sue,

First let me start by saying I'm sorry you are going through all of this! I have

a 6 year old daughter and she had a syrinx in her thoracic spine from t5-t9 it

was removed when she was 3. Once it was removed the orthopedic surgeon put metal

rods, plates and screws in it's place because she had some damage. He also

placed a shunt so that the syrinx wouldn't be able to form again due to lack of

build up of spinal fluid but that isn't always the case. The neurosurgeons

usually don't drain them right away. Normal procedure is that if you have a

tethered cord they in ether you and wait to see if the syrinx will drain on it's

on but I not (a in my daughter's case) then they drain the syrinx because it can

create damage. I hope this was helpful an if you have any further questions I

would be more than happy to answer them for you :-)

My daughter has had a re-tether every year since age 2 an has had an untethering

surgery every year :-( but her syrinx has remained stable since removal in 09. I

live in boston so again if I can help please don't hesitate to let me know

Corinn

> Hello all,

> Dr. Chi wanted me to have an MRI to rule out any other problems other than a

re-tethering of my cord. I had my primary order the MRI as I didn't want to go

allthe way back to Boston for it. I picked up the report last week and shipped a

copy of the report and a CD with images to Dr. Chi. The report says I have a 3

syrinxes(syringomyelia) in my thorasic spine from T-3 to T-11. This is a new

development for me. I don't remember anyone ever telling me that I had a syrinx.

I do have tethered cord, split cord, lipomyelomeningocele, scoliosis, and other

things.

> Does anyone here have a syrinx, or had one? Do the doctors always operate on

them? Can you share your experience with me?

> Dr. Chi should view my MRI images and read the report this week and then his

assistant should call me with an appointment to see him again. I'm wondering if

he drains the syrinx, will he still want to do the spine shortening surgery.

> Thanks for any help with this.

> Sue

>

>

[Guest guest]

My daughter has a syrinx but it is in a place and of a size that they don't

think it is bothering anything. Lots of variations in these in terms of

size, location and, thus, in terms of treatment (or lack thereof!) ...

In a message dated 9/8/2011 8:31:56 P.M. Central Daylight Time,

corinnglover02@... writes:

Hi sue,

First let me start by saying I'm sorry you are going through all of this!

I have a 6 year old daughter and she had a syrinx in her thoracic spine

from t5-t9 it was removed when she was 3. Once it was removed the orthopedic

surgeon put metal rods, plates and screws in it's place because she had some

damage. He also placed a shunt so that the syrinx wouldn't be able to form

again due to lack of build up of spinal fluid but that isn't always the

case. The neurosurgeons usually don't drain them right away. Normal procedure

is that if you have a tethered cord they in ether you and wait to see if

the syrinx will drain on it's on but I not (a in my daughter's case) then

they drain the syrinx because it can create damage. I hope this was helpful an

if you have any further questions I would be more than happy to answer

them for you :-)

My daughter has had a re-tether every year since age 2 an has had an

untethering surgery every year :-( but her syrinx has remained stable since

removal in 09. I live in boston so again if I can help please don't hesitate to

let me know

Corinn

On Sep 6, 2011, at 4:55 PM, " SueW " <_sue.writer@..._

(mailto:sue.writer@...) > wrote:

> Hello all,

> Dr. Chi wanted me to have an MRI to rule out any other problems other

than a re-tethering of my cord. I had my primary order the MRI as I didn't

want to go allthe way back to Boston for it. I picked up the report last week

and shipped a copy of the report and a CD with images to Dr. Chi. The

report says I have a 3 syrinxes(syringomyelia) in my thorasic spine from T-3 to

T-11. This is a new development for me. I don't remember anyone ever

telling me that I had a syrinx. I do have tethered cord, split cord,

lipomyelomeningocele, scoliosis, and other things.

> Does anyone here have a syrinx, or had one? Do the doctors always

operate on them? Can you share your experience with me?

> Dr. Chi should view my MRI images and read the report this week and then

his assistant should call me with an appointment to see him again. I'm

wondering if he drains the syrinx, will he still want to do the spine

shortening surgery.

> Thanks for any help with this.

> Sue

>

>

[Non-text portions of this message have been removed]

[Guest guest]

I am so sorry your daughter has needed repeated surgeries. Has she lost any

function with each surgery. Can you let me know what surgeon you use in Boston?

Thanks

>

> > Hello all,

> > Dr. Chi wanted me to have an MRI to rule out any other problems other than a

re-tethering of my cord. I had my primary order the MRI as I didn't want to go

allthe way back to Boston for it. I picked up the report last week and shipped a

copy of the report and a CD with images to Dr. Chi. The report says I have a 3

syrinxes(syringomyelia) in my thorasic spine from T-3 to T-11. This is a new

development for me. I don't remember anyone ever telling me that I had a syrinx.

I do have tethered cord, split cord, lipomyelomeningocele, scoliosis, and other

things.

> > Does anyone here have a syrinx, or had one? Do the doctors always operate on

them? Can you share your experience with me?

> > Dr. Chi should view my MRI images and read the report this week and then his

assistant should call me with an appointment to see him again. I'm wondering if

he drains the syrinx, will he still want to do the spine shortening surgery.

> > Thanks for any help with this.

> > Sue

> >

> >

>

>

>

[Guest guest]

>

> Hi Sue,

>

> They found a syrinx at the same time my tethered (and split) cord was

diagnosed via MRI. Mine was in the lumbar area. I researched syringomyelia and

found a wealth of info and support on the American Syringomyelia & Chiari

Alliance Project website. As I recall, I don't think they are operated on that

frequently, although some people get shunts. The goal is to address the cause of

the syrinx rather than the syrinx itself. In my case the doctors thought the

tethered cord was the cause of my syrinx, and thankfully it did collapse within

6 months of my detethering. Many people have nothing done at all; they just

monitor the syrinx.

>

> Hope this helps a little,

> Patty

>

Thank you Patty for your help. I went to the American Syringomyelia web site

and learned a lot. I'm so glad that your syrinx was resolved with the TC

operation. I hoping that r. Chi will tell me that I just need the spinal

subtraction operation and that my syrinx will disappear with time too.

By the way, I have a split cord in my lumbar spine too; L3-L4. Thanks again for

sharing,

Sue

[Guest guest]

Corinn,

I'm so sorry that you and your daughter have had to deal with a tethered cord

and all that comes with it. I know it's hard to watch your child experience

pain and problems.

Thank you for sharing your knowledge and experience with me. It has helped a

lot.

Sue

>

> > Hello all,

> > Dr. Chi wanted me to have an MRI to rule out any other problems other than a

re-tethering of my cord. I had my primary order the MRI as I didn't want to go

allthe way back to Boston for it. I picked up the report last week and shipped a

copy of the report and a CD with images to Dr. Chi. The report says I have a 3

syrinxes(syringomyelia) in my thorasic spine from T-3 to T-11. This is a new

development for me. I don't remember anyone ever telling me that I had a syrinx.

I do have tethered cord, split cord, lipomyelomeningocele, scoliosis, and other

things.

> > Does anyone here have a syrinx, or had one? Do the doctors always operate on

them? Can you share your experience with me?

> > Dr. Chi should view my MRI images and read the report this week and then his

assistant should call me with an appointment to see him again. I'm wondering if

he drains the syrinx, will he still want to do the spine shortening surgery.

> > Thanks for any help with this.

> > Sue

> >

> >

>

>

>

[Guest guest]

Thank you Sue!! Actually my daughter isn't treated in Boston anymore. The

situation with the tethering reoccurring so often and quickly became too complex

so now we travel from boston to johns Hopkins in land and Dr. Ben Carson

treats her. The name of the surgeon she had here is Dr. at Mass

general. I hope you are doing well and that you have gotten some more answers:-)

if you have any more questions please do not hesitate to ask.

> I am so sorry your daughter has needed repeated surgeries. Has she lost any

function with each surgery. Can you let me know what surgeon you use in Boston?

> Thanks

>

>

>

> >

> > > Hello all,

> > > Dr. Chi wanted me to have an MRI to rule out any other problems other than

a re-tethering of my cord. I had my primary order the MRI as I didn't want to go

allthe way back to Boston for it. I picked up the report last week and shipped a

copy of the report and a CD with images to Dr. Chi. The report says I have a 3

syrinxes(syringomyelia) in my thorasic spine from T-3 to T-11. This is a new

development for me. I don't remember anyone ever telling me that I had a syrinx.

I do have tethered cord, split cord, lipomyelomeningocele, scoliosis, and other

things.

> > > Does anyone here have a syrinx, or had one? Do the doctors always operate

on them? Can you share your experience with me?

> > > Dr. Chi should view my MRI images and read the report this week and then

his assistant should call me with an appointment to see him again. I'm wondering

if he drains the syrinx, will he still want to do the spine shortening surgery.

> > > Thanks for any help with this.

> > > Sue

> > >

> > >

> >

> >

> >

[Guest guest]

Corin,

I have TSC at T7-8 w/ hardware and shunt. I am also from Boston so I understand

your dilema. Look into either Dr. Falci or Dr. Green. Both have

alternative approaches to dealing with a syrinx )although Dr. Falci mostly deals

with TSC from trauma). Let me know if you have any questions.

Sent via BlackBerry by AT & T

Re: syrinx

Corinn,

I'm so sorry that you and your daughter have had to deal with a tethered cord

and all that comes with it. I know it's hard to watch your child experience

pain and problems.

Thank you for sharing your knowledge and experience with me. It has helped a

lot.

Sue

>

> > Hello all,

> > Dr. Chi wanted me to have an MRI to rule out any other problems other than a

re-tethering of my cord. I had my primary order the MRI as I didn't want to go

allthe way back to Boston for it. I picked up the report last week and shipped a

copy of the report and a CD with images to Dr. Chi. The report says I have a 3

syrinxes(syringomyelia) in my thorasic spine from T-3 to T-11. This is a new

development for me. I don't remember anyone ever telling me that I had a syrinx.

I do have tethered cord, split cord, lipomyelomeningocele, scoliosis, and other

things.

> > Does anyone here have a syrinx, or had one? Do the doctors always operate on

them? Can you share your experience with me?

> > Dr. Chi should view my MRI images and read the report this week and then his

assistant should call me with an appointment to see him again. I'm wondering if

he drains the syrinx, will he still want to do the spine shortening surgery.

> > Thanks for any help with this.

> > Sue

> >

> >

>

>

>

[Guest guest]

Sue,

Originally I was Dx with SBO, TC and diastematomyelia (I have two hemicords

from T12 down). The first surgery removed the piece of bone splitting my

cords which also untethered it. I retethered 4 months later and had my

second untethering (due to scar tissue) 1 1/2 years later. About 4 months

after that surgery, I was losing function very rapidly in both legs and was

diagnosed with syringomyelia. I was given three options. 1) do nothing.

decline from a syrinx will often plateau. 2) surgery to install a shunt

(traditional fix). 3) surgery to artificially widen the spinal canal. I

opted for option #3 because there was no plateau in sight and I was hardly

able to walk at that point (even with bilateral AFOs and forearm crutches)

and shunts have their own problems (rejection, infection, clogging, etc).

The last foreign body I had in my spine (they used bovine pericardium to

close my dura in the first surgery and my body didn't like it and attacked

it with scar tissue causing my retether). Unfortunately, when I woke from

surgery #3 I was paralyzed from T12 down. I know that surgery was more risky

than the ones before it, but I really didn't have much of an option I wasn't

able to drive and could barely even get around my own house at that point

(why I wasn't told about getting a wheelchair or hand controls, I'll never

know).

So, to answer your question, I suppose they don't always require surgery,

but one would have to accept a certain amount of decline to reach the

" plateau. " and that doesn't even guarantee that a plateau would be reached

(the only plateau I saw coming in my case was paralysis if I didn't

intervene surgically). I suppose it is possible the additional surgery may

not be necessary if your decline or problems you are currently having are

being caused by the syrinx rather than the tether. That was my problem. If

surgery is the route you decide to take, investigate both surgical

techniques thoroughly. They both have their pros and cons.

Best wishes.

Jenn

> **

>

>

> Hello all,

> Dr. Chi wanted me to have an MRI to rule out any other problems other than

> a re-tethering of my cord. I had my primary order the MRI as I didn't want

> to go allthe way back to Boston for it. I picked up the report last week and

> shipped a copy of the report and a CD with images to Dr. Chi. The report

> says I have a 3 syrinxes(syringomyelia) in my thorasic spine from T-3 to

> T-11. This is a new development for me. I don't remember anyone ever telling

> me that I had a syrinx. I do have tethered cord, split cord,

> lipomyelomeningocele, scoliosis, and other things.

> Does anyone here have a syrinx, or had one? Do the doctors always operate

> on them? Can you share your experience with me?

> Dr. Chi should view my MRI images and read the report this week and then

> his assistant should call me with an appointment to see him again. I'm

> wondering if he drains the syrinx, will he still want to do the spine

> shortening surgery.

> Thanks for any help with this.

> Sue

>

>

>