Re: Re: retethered cord

[Guest guest]

I read the report from my MRI and it says the cord is tethered at L3. I am going

to see the neurosurgeon this week but am thinking of getting a second opinion.

Like you I did have these symptoms before the surgery and the goal of the

surgery was to keep all this from happening. There is alot that i don't

understand about what happened with my surgery but like you I don't know if I

can go through the detethering again, but I cannot continue to suffer with the

leg and back pain which continues to get worse. This is not how I planned to

spend this part of my life. I will keep you posted.

To: tetheredspinalcord

From: peacamp@...

Date: Sun, 6 Mar 2011 13:03:21 +0000

Subject: Re: retethered cord

Similar to you, I started on my TSC journey about 3 years ago, at the age of 52.

Was detethered in May of 2008. After the surgery some symptoms improved, like

bladder, which by itself made the surgery worth it. But my lower back and leg

pain continued as before the surgery. Went back to my NS and he suspected I had

disc issues in my lower back that was causing pressure on the sciatic nerve, but

nothing very conclusive showed on my MRI. So he had a nerve block done to prove

that 2 of my discs were causing problems, and in May of 2009 I had a fusion with

hardware at L4/L5, L5/S1. My back and leg have been so much better since,

although I have lost some function of the left leg, and continue to work it

regularly to regain as much strength as possible.

I guess my point is that I think many of us with TSC are not limited to just

TSC, but have multiple things going on that can cause the same problems and

symptoms. I feel lucky that my NS looked further to try to find a cause for my

continuing pain.

Now I am also worried that I have retethered after falling down stairs last

summer and breaking my shoulder, because my neurogenic bladder is back and my

leg is giving me trouble again at night. I had RLS (restless leg syndrome) since

I was a teen, and this had disappeared after the fusion, but now is back. I am

waiting to hear the results of a new MRI and hoping they don't find anything.

I also have cervical problems that could be causing the bladder issue, but I'm

doubtful about the leg. Right now I am scheduled to have a cervical

decompression (and who knows what else they will do) in a little over a week. I

have really hoping this is what is causing my new symptoms; I don't know if I

could go through the detethering again. I never dreamed I would be having 3

major surgeries like this! Up until age 52, I had no back problems or any other

major health issues.

Good luck with your appointment, and hopefully your NS will be open to

consideration of all possibilities for the cause of your pain.

Patty

[Guest guest]

it's very true that tsc isn't the only problem we can have.  When my problems

started last year (at age 43) the initial MRI I had showed a tethered cord. 

the first neuro i went to said everyone with a spina bifida repair will show a

tethered cord on an MRI, but its not necessarily really tethered.  I had a

second MRI with a motion study and it was determined that there was movement so

it wasn't tethered.  I made sure to explore other options of what could be

pressing on my spinal cord (ie, gyno ultrasounds, abdominal ultrasounds).  I

knew it wasn't a disc problem because they looked fine on the MRI.  After

having a nerve study done that showed damage in my legs, another urodynamic

study showing retention and another MRI which revealed a small cyst, the

decision was made to go ahead with surgery for a tethered cord due to scar

tissue.  I was scheduled for tomorrow, but due to a severe respitory infection

and last minute insurance complications,

its been postponed.

Subject: Re: retethered cord

To: tetheredspinalcord

Date: Sunday, March 6, 2011, 8:03 AM

 

Similar to you, I started on my TSC journey about 3 years ago, at the age of 52.

Was detethered in May of 2008. After the surgery some symptoms improved, like

bladder, which by itself made the surgery worth it. But my lower back and leg

pain continued as before the surgery. Went back to my NS and he suspected I had

disc issues in my lower back that was causing pressure on the sciatic nerve, but

nothing very conclusive showed on my MRI. So he had a nerve block done to prove

that 2 of my discs were causing problems, and in May of 2009 I had a fusion with

hardware at L4/L5, L5/S1. My back and leg have been so much better since,

although I have lost some function of the left leg, and continue to work it

regularly to regain as much strength as possible.

I guess my point is that I think many of us with TSC are not limited to just

TSC, but have multiple things going on that can cause the same problems and

symptoms. I feel lucky that my NS looked further to try to find a cause for my

continuing pain.

Now I am also worried that I have retethered after falling down stairs last

summer and breaking my shoulder, because my neurogenic bladder is back and my

leg is giving me trouble again at night. I had RLS (restless leg syndrome) since

I was a teen, and this had disappeared after the fusion, but now is back. I am

waiting to hear the results of a new MRI and hoping they don't find anything.

I also have cervical problems that could be causing the bladder issue, but I'm

doubtful about the leg. Right now I am scheduled to have a cervical

decompression (and who knows what else they will do) in a little over a week. I

have really hoping this is what is causing my new symptoms; I don't know if I

could go through the detethering again. I never dreamed I would be having 3

major surgeries like this! Up until age 52, I had no back problems or any other

major health issues.

Good luck with your appointment, and hopefully your NS will be open to

consideration of all possibilities for the cause of your pain.

Patty

[Guest guest]

So sorry to hear of the postponement. The waiting with these things seem to be

the hardest thing. I just want to feel good again and be off so many

medications. I have tried to go off some but cannot stand the pain. This is all

so frustrating!!

To: tetheredspinalcord

From: sueradz@...

Date: Sun, 6 Mar 2011 06:36:37 -0800

Subject: Re: Re: retethered cord

it's very true that tsc isn't the only problem we can have. When my problems

started last year (at age 43) the initial MRI I had showed a tethered cord. the

first neuro i went to said everyone with a spina bifida repair will show a

tethered cord on an MRI, but its not necessarily really tethered. I had a

second MRI with a motion study and it was determined that there was movement so

it wasn't tethered. I made sure to explore other options of what could be

pressing on my spinal cord (ie, gyno ultrasounds, abdominal ultrasounds). I

knew it wasn't a disc problem because they looked fine on the MRI. After having

a nerve study done that showed damage in my legs, another urodynamic study

showing retention and another MRI which revealed a small cyst, the decision was

made to go ahead with surgery for a tethered cord due to scar tissue. I was

scheduled for tomorrow, but due to a severe respitory infection and last minute

insurance complications,

its been postponed.

Subject: Re: retethered cord

To: tetheredspinalcord

Date: Sunday, March 6, 2011, 8:03 AM

Similar to you, I started on my TSC journey about 3 years ago, at the age of 52.

Was detethered in May of 2008. After the surgery some symptoms improved, like

bladder, which by itself made the surgery worth it. But my lower back and leg

pain continued as before the surgery. Went back to my NS and he suspected I had

disc issues in my lower back that was causing pressure on the sciatic nerve, but

nothing very conclusive showed on my MRI. So he had a nerve block done to prove

that 2 of my discs were causing problems, and in May of 2009 I had a fusion with

hardware at L4/L5, L5/S1. My back and leg have been so much better since,

although I have lost some function of the left leg, and continue to work it

regularly to regain as much strength as possible.

I guess my point is that I think many of us with TSC are not limited to just

TSC, but have multiple things going on that can cause the same problems and

symptoms. I feel lucky that my NS looked further to try to find a cause for my

continuing pain.

Now I am also worried that I have retethered after falling down stairs last

summer and breaking my shoulder, because my neurogenic bladder is back and my

leg is giving me trouble again at night. I had RLS (restless leg syndrome) since

I was a teen, and this had disappeared after the fusion, but now is back. I am

waiting to hear the results of a new MRI and hoping they don't find anything.

I also have cervical problems that could be causing the bladder issue, but I'm

doubtful about the leg. Right now I am scheduled to have a cervical

decompression (and who knows what else they will do) in a little over a week. I

have really hoping this is what is causing my new symptoms; I don't know if I

could go through the detethering again. I never dreamed I would be having 3

major surgeries like this! Up until age 52, I had no back problems or any other

major health issues.

Good luck with your appointment, and hopefully your NS will be open to

consideration of all possibilities for the cause of your pain.

Patty

[Guest guest]

Pain relief is not at all assured after surgery. It did relieve my

daughters from age 13 to 20 but the most recent detether did not alleviate the

pain. She was well aware of that possibility and her pain is far less than

yours and managed fairly well on gabapentin. Good luck!! Such very very

hard decisions. Randee

In a message dated 3/6/2011 8:50:28 A.M. Central Standard Time,

patriciafischer@... writes:

So sorry to hear of the postponement. The waiting with these things seem

to be the hardest thing. I just want to feel good again and be off so many

medications. I have tried to go off some but cannot stand the pain. This is

all so frustrating!!

To: tetheredspinalcord

From: sueradz@...

Date: Sun, 6 Mar 2011 06:36:37 -0800

Subject: Re: Re: retethered cord

it's very true that tsc isn't the only problem we can have. When my

problems started last year (at age 43) the initial MRI I had showed a tethered

cord. the first neuro i went to said everyone with a spina bifida repair

will show a tethered cord on an MRI, but its not necessarily really tethered.

I had a second MRI with a motion study and it was determined that there

was movement so it wasn't tethered. I made sure to explore other options of

what could be pressing on my spinal cord (ie, gyno ultrasounds, abdominal

ultrasounds). I knew it wasn't a disc problem because they looked fine on

the MRI. After having a nerve study done that showed damage in my legs,

another urodynamic study showing retention and another MRI which revealed a

small cyst, the decision was made to go ahead with surgery for a tethered

cord due to scar tissue. I was scheduled for tomorrow, but due to a severe

respitory infection and last minute insurance complications,

its been postponed.

Subject: Re: retethered cord

To: tetheredspinalcord

Date: Sunday, March 6, 2011, 8:03 AM

Similar to you, I started on my TSC journey about 3 years ago, at the age

of 52. Was detethered in May of 2008. After the surgery some symptoms

improved, like bladder, which by itself made the surgery worth it. But my lower

back and leg pain continued as before the surgery. Went back to my NS and

he suspected I had disc issues in my lower back that was causing pressure on

the sciatic nerve, but nothing very conclusive showed on my MRI. So he had

a nerve block done to prove that 2 of my discs were causing problems, and

in May of 2009 I had a fusion with hardware at L4/L5, L5/S1. My back and

leg have been so much better since, although I have lost some function of the

left leg, and continue to work it regularly to regain as much strength as

possible.

I guess my point is that I think many of us with TSC are not limited to

just TSC, but have multiple things going on that can cause the same problems

and symptoms. I feel lucky that my NS looked further to try to find a cause

for my continuing pain.

Now I am also worried that I have retethered after falling down stairs

last summer and breaking my shoulder, because my neurogenic bladder is back

and my leg is giving me trouble again at night. I had RLS (restless leg

syndrome) since I was a teen, and this had disappeared after the fusion, but

now

is back. I am waiting to hear the results of a new MRI and hoping they

don't find anything.

I also have cervical problems that could be causing the bladder issue, but

I'm doubtful about the leg. Right now I am scheduled to have a cervical

decompression (and who knows what else they will do) in a little over a week.

I have really hoping this is what is causing my new symptoms; I don't know

if I could go through the detethering again. I never dreamed I would be

having 3 major surgeries like this! Up until age 52, I had no back problems

or any other major health issues.

Good luck with your appointment, and hopefully your NS will be open to

consideration of all possibilities for the cause of your pain.

Patty

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

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

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[Guest guest]

I have had 3 L-spine MRIs since the detethering surgery in January 2010.  All

of

them indicate that my cord is tethered, even the MRI done 3 days after

surgery. 

My surgeon and his mentor don't put much stock in what the reports say.  The

mentor even said that interpreting MRIs of a spine with scoliosis complicating

the picture is very difficult.  My most recent MRI was done in both the supine

and prone positions to see if the cord moved.  This seems to be the ultimate

MRI

test.  The report says tethered.  The surgeon still says not.

    Since my bladder has never worked, urodynamics is a useless tool to

evaluate

tethering for me.  Since I am old (66), the issue of stenosis is important and

its symptoms can be very similar to TC.  I saw several posts today from people

who are older and in whom stenosis appears to be becoming an issue.  My MRIs

showed " mild to moderate " stenosis, yet, when the surgeon got in there, it was

severe.  My MRIs showed a very low (L4) tethered cord but, when the surgeon got

in there, he found minimal tethering.  So much for MRIs!!!!

________________________________

To: tetheredspinalcord

Sent: Sun, March 6, 2011 9:37:37 AM

Subject: Re: retethered cord

 

Also, I'm not sure an MRI is conclusive on retethering after surgery has already

been done. My reports have consistantly said I'm tethered since I had the

surgery, but the doctors don't find it to be of any consequence. My last MRI was

done with contrast so see if anything had changed, but I'm not even sure that

they will be able to tell with that. I've always been told that they go more by

symptoms, urodynamics, etc. more than anything else once you have been

detethered. I think others on this boards can offer more info on how retethering

is determined.

[Guest guest]

I know it is disappointing to have to reschedule - especially when you've

psyched yourself up for it. When I had my first surgery, I had just gotten

over a sinus infection. It wasn't quite all the way gone, but gone enough.

They offered to postpone the surgery, but I figured it was gone enough (and

they agreed). Had I not had surgery, it probably would have been 100% gone

in 1-2 days, but with the surgery, it wasn't. I remember waking up in

recovery and my nose was SO stuffy. I was trying to tell a nurse by my brain

was still so foggy from anesthesia. The only word I could come up with was

'nose. " The RN kept saying my nose was okay, still there, etc. Finally I

managed to say " tissue " and they figured out what I wanted.

But, my decision to go ahead with surgery could have been really bad. After

surgery, they will have you doing breathing exercises and coughing to keep

your lungs clear. And with no infection going on, it will hurt like the

dickens. But, with that little post nasal drip I had left over, it ended up

in my lungs. I was lucky I didn't end up with pneumonia. Not to mention,

because of it, I ended up congested and had to cough much more often than

just when they wanted me to. OUCH doesn't even begin to describe it. So,

make sure the URI is 110% gone before going under the knife.

My last surgery was postponed. It was scheduled for right after Memorial

Day weekend. I got a call from the hospital asking me if I would be willing

to postpone it. They are a transplant center and said they had a bunch of

organs become available over the holiday weekend and were asking people with

elective surgeries (non-emergent) to postpone their operations to free up

the ORs and staff for the transplants. Who am I to deny someone waiting for

a new liver, lungs, heart, etc? So, that last surgery was postponed a few

days.

Best wishes for a successful surgery and quick recovery.

Jenn

>

>

> I was scheduled for tomorrow, but due to a severe respitory infection and

> last minute insurance complications,

> its been postponed.

>

>

[Guest guest]

This is very true. My first surgery helped with my pain for a very short

while. I felt better about 2 weeks post op - just the surgical pain, and

even better 1 and 2 months post op. Then things started to change. By 4

months post op, I was retethered and back to my pre-op pain levels.

Surgeries 2 and 3 didn't do anything to change my pain levels either (and

I'm not retethered).

Jenn

>

>

> Pain relief is not at all assured after surgery. It did relieve my

> daughters from age 13 to 20 but the most recent detether did not alleviate

> the

> pain. She was well aware of that possibility and her pain is far less than

> yours and managed fairly well on gabapentin. Good luck!! Such very very

> hard decisions. Randee

>

>

[Guest guest]

Have you talked to your MD or his RN and asked him if he would be willing to

accept the insurance co's in-network payment rate? Sometimes trying to get

the ins. co to negotiate with the hospital and/or MD, they less likely to

work with them. But, if the request comes directly from you, sometimes the

MD is more willing to say yes.

Jenn

>

>

> Glad it was rescheduled, I've got a horrible upper and lower respitory

> infection. On 2nd round of antibiotics, hopefully it will clear quickly. But

> I'm not sure if i feel worse about being sick or about the continued

> problems with the insurance company. The insurance has only agreed to pay

> the neuro the in-plan rate, which isn't enough. Trying another appeal and

> contacted state insurance. I'm working on a back up plan however.

>

>

[Guest guest]

,

I am working with a patient advocate to navigate through the red tape with my

insurance carrier. She use to work in the industry herself so she understands

how to work the process. Not cheap, but if you run out of options might be worth

it. Her name is Jane Stull and can be reached at PatientAdvocate@....

Good luck.

Sent via BlackBerry by AT & T

Re: retethered cord

Glad it was rescheduled, I've got a horrible upper and lower respitory

infection. On 2nd round of antibiotics, hopefully it will clear quickly. But

I'm not sure if i feel worse about being sick or about the continued problems

with the insurance company. The insurance has only agreed to pay the neuro the

in-plan rate, which isn't enough. Trying another appeal and contacted state

insurance. I'm working on a back up plan however.

>

> >

> >

> > I was scheduled for tomorrow, but due to a severe respitory infection and

> > last minute insurance complications,

> > its been postponed.

> >

> >

>

>

>