Re: Surgical technique for detethering

[Guest guest]

That's a hard question since there is no standard but it seems like

most surgeons go lower.

L2 scares me a bit but who am I to say, ultimately you'd always want

the surgeon to do the technique he's had most experience with, I

guess you could ask each how many they've done and what the outcomes,

complications, etc...have been.

I've wondered about the L4 laminectomy b/c my son (he's 4) is

scheduled to have it in Feb with Dr. B, he tells me there are no long

term concerns. As far as disc and degenerative issues, often

laminectomies are done to give more room for the nerves so it seems

like it would be OK.

My surgeon did a S1 laminectomy and section of filum terminale on me

in 2005, I think I have some residual tethering. I'm much better and

can get around better but maybe the small s1 surgery I had wasn't

enough so in retrospect, I might have chosen a more " open " technique

but at the time no one would touch a 37 year old with fairly normal

looking MRI, numb and weak legs, B & B issues. Things have changed alot

in 2 years.

Dr. YAmada is a very knowledgeable and nice doctor in tethered cord

issues, you could even try to contact him and ask why he chooses that

technique? I read a lot of his papers, hat's when I finally

understood why my legs weren't working right.

Let us know if you find out any more info.

Best wishes!!

AG

>

> Hi,

>

> I've been diagnosed with occult tight filum terminale by two

> Neurosurgeons (Dr. Bolognese and Dr. Oro), and both have suggested

> surgery to section the filum terminale because I have a very large

> syrinx from T11 to L1 that takes up the entire width of my cord. I

do

> not have Chiari, but I do have hypermobile type Ehlers Danlos

Syndrome.

>

> One of the NS has begun to use the detethering techinique

established

> by Dr. Yamada, where the filum is cut very close to the conus level

of

> the spinal cord (in my case, that would be L2). The spine is more

> shallow at this point, and the NS wouldn't need to perform a full

> laminectomy.

>

> Has anyone had a detethering this high up?

>

> One NS said they do not go that high up because they feel it's too

> dangerous to the cord. Plus my syrinx is right there at the conus,

so

> I'm concerend about that.

>

> My other option would be to have a full laminectomy at L4. But the

NS

> believes that it's better to stay away from the L4/L5 junction

because

> it's such a high stress point in the spine for degenerative

problems, etc.

>

> What surgical option would you do?

>

> Thanks for any advice,

>

> Elaine

>

[Guest guest]

Elaine,

I started my journey 7 years ago with SBO, TCS and diastematomyelia. I've

had a total of 3 surgeries. The second was for a retether and the third was

after I developed hydrosyringomyelia a few months after my third surgery.

The surgery to fix that left me a T12 paraplegic.

The L2 seems pretty high to me. Generally, a person with TCS has their cord

" stuck " to some point and it stretched down longer than a normal person's.

A normal person's spinal cord stops somewhere around L1-2. So, by doing the

dethering procedure, you hope that the tight cord will rise up after it is

" unstuck " so-to-speak. But when the person with TCS enters surgery, their

cord is usually longer than the normal persons, so if the surgeon went in

and " cut " at L2, it is likely that (s)he could cut healthy cord and cause

permanent neurological damage. I understand the doc says that your cord is

tethered at L2.. and just hang with me while I think out loud -- this is

what I would think about if it were my spinal cord and would ask my surgeon

-- If your spinal cord ends and is tethered at L2, and he wants to cut at

L2, then wouldn't there be a higher risk of neurological injury/damage to

healthy spinal cord? If (s)he performed the untethering lower down where

there is less risk of hitting spinal cord, would the cord not get released

with less risk of damage? Or, is the cord actually tethered (to something)

specifically at L2 and that he why it must be released at L2 and it cannot

be done lower? I mean, if your cord it actually tethered at L2, then the

surgeons can cut away lower down and it won't do a hill of beans for that

part of your cord that is stuck at L2. Those are the questions I would

ask. Also, since you have the EHD to deal with, I would ask about any

special techniques, surgical outcomes, or experience with EHD patients. I

don't have it, but I understand that EHD people have some special concerns

when it comes to surgery (in general I think?). But ask him/her about

experience with EHD and their outcomes with their surgery and people with it

or any special precautions they take and how many people they have operated

on with it.

My initial tethering was at L2 (caused by the diastematomyelia). A

different type of release, but I was released at L2, initially, and had no

problems with the surgery until later. The surgeon used a bovine pericardium

dural graft that my body apparently didn't like one bit and attacked with

scar tissue, retethering me 4 months later.

As far as the full laminectomy and at what levels -- I had a laminectomy at

L2 with my initial surgery. After the three surgeries, I have had

laminectomies at T12-L5. I have very little bone in my spine. Just

basically the vertebral rings are left. When my surgeon was going to do the

third surgery, I was certain he was going to have to do a fusion b/c of all

the laminectomies he had done, and he said that b/c I was young and flexible

that he would not have to. I never thought to ask about what happened when

I was not so young and flexible anymore, but it has been over 4 1/2 years

and no real problems. I can walk with bilateral KAFOs (although it is a

very tedious process, so I only do it on the treadmill for exercise and to

keep my bone density up), but it doesn't cause any problems when I stand or

walk, so I don't think it would have been a problem if I were still

walking. Maybe it will be a problem down the road, but who knows. I have

back pain, but no more than I ever had before they did the laminectomies.

The only thing it created is that you cannot push down directly on my spine

b/c it feels like you are touching my spinal cord -- and essentially there

isn't much protection there but there aren't people that go around touching

my back with 1-2 fingers directly over my spine very often.

Best of luck. I know it is a hard decision to make. IMO -- and this is

just a personal opinion -- if pain is your only symptom -- I would leave

well enough alone and manage with pain meds and other techniques. Monitor

for the first sign of neurological decline (do annual/bi-annual EMG,

urodynamic studies, physical exams, etc) and at that point make a decision.

Particularly with the EHD I understand surgery has special issues -- and

surgery is not the " fix all " -- especially for pain. That is just my

opinion. That is something you can also ask your MD about -- if pain is your

only symptom (you didn't mention if it was) -- the rates of success that

surgery will fix it and that you will not be back in his OR in a few years

or that your pain will not return. Or that you will not be left with

neuropathy post-op. I know he cannot promise you anything, but he/she can

tell you what he/she has done so far. These are just things I wish I had

known to ask before.

Best of luck. If you have any other questions, feel free to ask.

Jenn

> Hi,

>

> I've been diagnosed with occult tight filum terminale by two

> Neurosurgeons (Dr. Bolognese and Dr. Oro), and both have suggested

> surgery to section the filum terminale because I have a very large

> syrinx from T11 to L1 that takes up the entire width of my cord. I do

> not have Chiari, but I do have hypermobile type Ehlers Danlos Syndrome.

>

> One of the NS has begun to use the detethering techinique established

> by Dr. Yamada, where the filum is cut very close to the conus level of

> the spinal cord (in my case, that would be L2). The spine is more

> shallow at this point, and the NS wouldn't need to perform a full

> laminectomy.

>

> Has anyone had a detethering this high up?

>

> One NS said they do not go that high up because they feel it's too

> dangerous to the cord. Plus my syrinx is right there at the conus, so

> I'm concerend about that.

>

> My other option would be to have a full laminectomy at L4. But the NS

> believes that it's better to stay away from the L4/L5 junction because

> it's such a high stress point in the spine for degenerative problems, etc.

>

> What surgical option would you do?

>

> Thanks for any advice,

>

> Elaine

>

>

>