Re: Surgery ended up worse than planned

[Guest guest]

-- can they not do anything to deal with the stenosis?

Dee

To: tetheredspinalcord

From: sailorsu@...

Date: Mon, 14 Feb 2011 12:37:32 -0800

Subject: Re: Surgery ended up worse than planned

:

All of your questions are good ones and I am still trying to get answers.

Yes, the pre-op scans showed TC and thick filum. The only info I have is what's

written in the op report. What the surgeon told us immediately after the 1st op

was that the tethering was not as bad as expected and was taken care of but that

the stenosis was much worse. Obviously the scans didn't tell the whole story.

When I failed to progress after 7 months he had more MRIs done which he said did

not explain my problems. So he referred me to his mentor (who has been cited in

some TC online posts) who reviewed everything and concurred. The

80-something-year-old mentor actually told me that I was not getting any younger

and could expect a certain amount of loss of strength from aging alone. He

recommended renewed exercise efforts. I flunked out of PT back in August -

Medicare won't pay if you are not showing progress. So I do my home routine and

hit the gym with my personal trainer twice a week.

[by the way, I want to thank myself and all the other tax payers. I could

not have afforded to go through this if I were not covered by Medicare. The

bills are staggering.]

At the most recent appointment the surgeon told me the " good news " was that

there was nothing surgical that could be done. So the experts are scratching

their heads, but no one is suggesting more surgery.

________________________________

To: tetheredspinalcord

Sent: Sun, February 13, 2011 11:25:06 AM

Subject: Re: Surgery ended up worse than planned

,

I just read your post again. Am I right in reading that your preop MRI saw a TC

and then at surgery there was no significant tethering of filum or cord found,

and if so what did they attribute your increasing loss of strength due to and

the adhesions? Does that mean that they did not go ahead during surgery and cut

the filum to detether cord. If so just curious as to what they attribute

everything to and if they are suggesting another surgery.

> > >

> > > :

> > >    What an absolute disaster for you! I don't know what you

>mean by the

>

> > > surgeon losing the measuring at the end of the op leaving you with a cord

> > > injury, but it sounds actionable. I, too, had a bad outcome from

>detethering

>

> >

> > > surgery and certainly will not be having any more. At 66 yrs old, I

>think I

>

> > > will just put up with whatever. I am 1 year post-op & haven't seen any

> > > improvement in the past 6 months. Yes, seeing improvement would go a

>long way

>

> > >

> > > toward helping us both with the motivation to keep on with therapy.

> > >    The best advice I can offer is to be sure you make your needs

>known to

>

> > >the

> > >

> > > rehab folks, loudly if necessary. You are the one who knows the most

>about

>

> > >your

> > >

> > > body. I have spent most of my life training the medical profession in

>what

>

> > >its

> > >

> > > like to be me. We are all unique & standard protocols often do not

>apply. I

>

> > >

> > > got a copy of my medical records and was amazed at some of the

inaccuracies

>

> > >from

> > >

> > > simple typos to the absurd such as saying I am not incontinent (I am and

>always

>

> > >

> > > have been) & don't have a heart murmur (I do and always have had).

> > >    My MRIs also do not show why I cannot do things I could do

>prior to the

>

> > >op.ÂÂ

> > >

> > > Are you on a steroid to decrease swelling? Keep on working like a

>maniac.

> > > ________________________________

> > > From: AllyGator <gatorshime_2000@>

> > > To: tetheredspinalcord

> > > Sent: Wed, February 9, 2011 5:05:15 AM

> > > Subject: Surgery ended up worse than planned

> > >

> > > ÂÂ

> > > Just had my 2nd detethering surgery 3 weeks ago. I've had 2 surgeries to

>remove

>

> > >

> > > tumors then the 1st TSC surgery in 2007. I was walking with my walker on

>day 1

>

> >

> > > after surgery and was fully functional until this past surgery. It was at

>T6-9.

>

> > >

> > > The surgeon lost the measuring at the end of the surgery. I am now in a

>rehab

>

> > > hospital with an incomplete injury to my cord. He detethered it but, also

>cut

>

> > > away some of the bone and put some screws and plates in the spine. He says

>the

>

> >

> > > Mri SHOWS no major problems and he HOPES the swelling will go down and

some

>of

>

> >

> > > my function and the ability to walk will return. I can wiggle my right

foot

>

> > > toes, raise my left leg some and I do have feeling in my right shin and my

> > > entire groin area. Still very depressed due to the result which was NEVER

>told

>

> >

> > > of ANY risk and the Bowel and Bladder issues are very tough on my dignity.

> > > Anyone else every had where they regained function after surgery. I was

>told up

>

> > >

> > > to a year till we know exactly what will be my outcome. I am working like

a

>

> > > maniac in rehab. That is not the problem. I just need some improvements to

>give

>

> > >

> > > me hope as the Dr.'s are the worse pessamists (sp?) in the world. Thanks

>for

>

> > > listening to my gripes.

> > >

> > > Shimer

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Dee:

    Yes, and they did all of that before opening the dura to deal with the

TC. 

They did laminectomies all of L3 and L4 and parts of L2 and L5 to get exposure

and then they used drills and other sharp instruments to get rid of osteophytes

(spurs), disc bulges,  & other junk crowding the nerves and reamed out the

foramina (holes through which nerves exit the spinal column).  I know several

people who have had surgery to decompress (that's the term used to describe the

process) stenosis with excellent results.  But, they were otherwise " normal. "  

In addition to TC & stenosis, I also have moderate lumbar scoliosis.

    Happy Valentine's Day everyone!

________________________________

To: tetheredspinalcord

Sent: Mon, February 14, 2011 12:51:50 PM

Subject: RE: Surgery ended up worse than planned

-- can they not do anything to deal with the stenosis?

Dee

To: tetheredspinalcord

From: sailorsu@...

Date: Mon, 14 Feb 2011 12:37:32 -0800

Subject: Re: Surgery ended up worse than planned

 

:

    All of your questions are good ones and I am still trying to get

answers. 

Yes, the pre-op scans showed TC and thick filum.  The only info I have is

what's

written in the op report.  What the surgeon told us immediately after the 1st

op

was that the tethering was not as bad as expected and was taken care of but that

the stenosis was much worse.  Obviously the scans didn't tell the whole

story. 

When I failed to progress after 7 months he had more MRIs done which he said did

not explain my problems.  So he referred me to his mentor (who has been cited

in

some TC online posts) who reviewed everything and concurred.  The

80-something-year-old mentor actually told me that I was not getting any younger

and could expect a certain amount of loss of strength from aging alone.  He

recommended renewed exercise efforts.  I flunked out of PT back in August - 

Medicare won't pay if you are not showing progress.  So I do my home routine

and

hit the gym with my personal trainer twice a week.

    [by the way, I want to thank myself and all the other tax payers.  I

could

not have afforded to go through this if I were not covered by Medicare.  The

bills are staggering.]

    At the most recent appointment the surgeon told me the " good news " was

that

there was nothing surgical that could be done.  So the experts are scratching

their heads, but no one is suggesting more surgery.

   

________________________________

To: tetheredspinalcord

Sent: Sun, February 13, 2011 11:25:06 AM

Subject: Re: Surgery ended up worse than planned

 

,

I just read your post again. Am I right in reading that your preop MRI saw a TC

and then at surgery there was no significant tethering of filum or cord found,

and if so what did they attribute your increasing loss of strength due to and

the adhesions? Does that mean that they did not go ahead during surgery and cut

the filum to detether cord. If so just curious as to what they attribute

everything to and if they are suggesting another surgery.

> > >

> > > :

> > > ﾃ㤠ﾃ㤠ﾃã¤Â  What an absolute disaster for you!ﾃã¤Â  I don't

know what you

>mean by the

>

> > > surgeon losing the measuring at the end of the op leaving you with a cord

> > > injury, but it sounds actionable.ﾃã¤Â  I, too, had a bad outcome from

>detethering

>

> >

> > > surgery and certainly will not be having any more.ﾃã¤Â  At 66 yrs old,

I

>think I

>

> > > will just put up with whatever.ﾃã¤Â  I am 1 year post-op & haven't seen

any

> > > improvement in the past 6 months.ﾃã¤Â  Yes, seeing improvement would go

a

>long way

>

> > >

> > > toward helping us both with the motivation to keep on with therapy.

> > > ﾃ㤠ﾃ㤠ﾃã¤Â  The best advice I can offer is to be sure you make

your needs

>known to

>

> > >the

> > >

> > > rehab folks, loudly if necessary.ﾃã¤Â  You are the one who knows the

most

>about

>

> > >your

> > >

> > > body.ﾃã¤Â  I have spent most of my life training the medical profession

in

>what

>

> > >its

> > >

> > > like to be me.ﾃã¤Â  We are all unique & standard protocols often do not

>apply.ﾃã¤Â  I

>

> > >

> > > got a copy of my medical records and was amazed at some of the

inaccuracies

>

>

> > >from

> > >

> > > simple typos to the absurd such as saying I am not incontinent (I am and

>always

>

> > >

> > > have been) & don't have a heart murmur (I do and always have had).

> > > ﾃ㤠ﾃ㤠ﾃã¤Â  My MRIs also do not show why I cannot do things I

could do

>prior to the

>

> > >op.ﾃã¤Â 

> > >

> > > Are you on a steroid to decrease swelling?ﾃã¤Â  Keep on working like a

>maniac.

> > > ________________________________

> > > From: AllyGator <gatorshime_2000@>

> > > To: tetheredspinalcord

> > > Sent: Wed, February 9, 2011 5:05:15 AM

> > > Subject: Surgery ended up worse than planned

> > >

> > > ﾃã¤Â 

> > > Just had my 2nd detethering surgery 3 weeks ago. I've had 2 surgeries to

>remove

>

> > >

> > > tumors then the 1st TSC surgery in 2007. I was walking with my walker on

>day 1

>

> >

> > > after surgery and was fully functional until this past surgery. It was at

>T6-9.

>

> > >

> > > The surgeon lost the measuring at the end of the surgery. I am now in a

>rehab

>

> > > hospital with an incomplete injury to my cord. He detethered it but, also

>cut

>

> > > away some of the bone and put some screws and plates in the spine. He says

>the

>

> >

> > > Mri SHOWS no major problems and he HOPES the swelling will go down and

some

>

>of

>

> >

> > > my function and the ability to walk will return. I can wiggle my right

foot

>

>

> > > toes, raise my left leg some and I do have feeling in my right shin and my

> > > entire groin area. Still very depressed due to the result which was NEVER

>told

>

> >

> > > of ANY risk and the Bowel and Bladder issues are very tough on my dignity.

> > > Anyone else every had where they regained function after surgery. I was

>told up

>

> > >

> > > to a year till we know exactly what will be my outcome. I am working like

a

>

>

> > > maniac in rehab. That is not the problem. I just need some improvements to

>give

>

> > >

> > > me hope as the Dr.'s are the worse pessamists (sp?) in the world. Thanks

>for

>

> > > listening to my gripes.

> > >

> > > Shimer

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

- I am sorry -- I now remember you saying they did all this in one surgery

in a previous post! I do hope things improve for you. My neurosurgeon told me

1 1/2 years to fully benefit from my spinal fusion (on top of tc surgery a

couple yrs ago) -- but my physiotherapist told me she has had patients who have

seen improvements up to the 3 year mark. I have multiple things going on with

my back too, and it is just impossible for the neurosurgeon to confidently say

what is causing what...

Dee

To: tetheredspinalcord

From: sailorsu@...

Date: Mon, 14 Feb 2011 15:08:23 -0800

Subject: Re: Surgery ended up worse than planned

Dee:

Yes, and they did all of that before opening the dura to deal with the TC.

They did laminectomies all of L3 and L4 and parts of L2 and L5 to get exposure

and then they used drills and other sharp instruments to get rid of osteophytes

(spurs), disc bulges, & other junk crowding the nerves and reamed out the

foramina (holes through which nerves exit the spinal column). I know several

people who have had surgery to decompress (that's the term used to describe the

process) stenosis with excellent results. But, they were otherwise " normal. "

In addition to TC & stenosis, I also have moderate lumbar scoliosis.

Happy Valentine's Day everyone!

________________________________

To: tetheredspinalcord

Sent: Mon, February 14, 2011 12:51:50 PM

Subject: RE: Surgery ended up worse than planned

-- can they not do anything to deal with the stenosis?

Dee

To: tetheredspinalcord

From: sailorsu@...

Date: Mon, 14 Feb 2011 12:37:32 -0800

Subject: Re: Surgery ended up worse than planned

:

All of your questions are good ones and I am still trying to get answers.

Yes, the pre-op scans showed TC and thick filum. The only info I have is what's

written in the op report. What the surgeon told us immediately after the 1st op

was that the tethering was not as bad as expected and was taken care of but that

the stenosis was much worse. Obviously the scans didn't tell the whole story.

When I failed to progress after 7 months he had more MRIs done which he said did

not explain my problems. So he referred me to his mentor (who has been cited in

some TC online posts) who reviewed everything and concurred. The

80-something-year-old mentor actually told me that I was not getting any younger

and could expect a certain amount of loss of strength from aging alone. He

recommended renewed exercise efforts. I flunked out of PT back in August -

Medicare won't pay if you are not showing progress. So I do my home routine and

hit the gym with my personal trainer twice a week.

[by the way, I want to thank myself and all the other tax payers. I could

not have afforded to go through this if I were not covered by Medicare. The

bills are staggering.]

At the most recent appointment the surgeon told me the " good news " was that

there was nothing surgical that could be done. So the experts are scratching

their heads, but no one is suggesting more surgery.

________________________________

To: tetheredspinalcord

Sent: Sun, February 13, 2011 11:25:06 AM

Subject: Re: Surgery ended up worse than planned

,

I just read your post again. Am I right in reading that your preop MRI saw a TC

and then at surgery there was no significant tethering of filum or cord found,

and if so what did they attribute your increasing loss of strength due to and

the adhesions? Does that mean that they did not go ahead during surgery and cut

the filum to detether cord. If so just curious as to what they attribute

everything to and if they are suggesting another surgery.

> > >

> > > :

> > > ﾃ㤠ﾃ㤠ﾃ㤠What an absolute disaster for you!ﾃ㤠I don't

know what you

>mean by the

>

> > > surgeon losing the measuring at the end of the op leaving you with a cord

> > > injury, but it sounds actionable.ﾃ㤠I, too, had a bad outcome from

>detethering

>

> >

> > > surgery and certainly will not be having any more.ﾃ㤠At 66 yrs old, I

>think I

>

> > > will just put up with whatever.ﾃ㤠I am 1 year post-op & haven't seen

any

> > > improvement in the past 6 months.ﾃ㤠Yes, seeing improvement would go

a

>long way

>

> > >

> > > toward helping us both with the motivation to keep on with therapy.

> > > ﾃ㤠ﾃ㤠ﾃ㤠The best advice I can offer is to be sure you make

your needs

>known to

>

> > >the

> > >

> > > rehab folks, loudly if necessary.ﾃ㤠You are the one who knows the

most

>about

>

> > >your

> > >

> > > body.ﾃ㤠I have spent most of my life training the medical profession

in

>what

>

> > >its

> > >

> > > like to be me.ﾃ㤠We are all unique & standard protocols often do not

>apply.ﾃ㤠I

>

> > >

> > > got a copy of my medical records and was amazed at some of the

inaccuracies

>

>

> > >from

> > >

> > > simple typos to the absurd such as saying I am not incontinent (I am and

>always

>

> > >

> > > have been) & don't have a heart murmur (I do and always have had).

> > > ﾃ㤠ﾃ㤠ﾃ㤠My MRIs also do not show why I cannot do things I

could do

>prior to the

>

> > >op.ﾃã¤

> > >

> > > Are you on a steroid to decrease swelling?ﾃ㤠Keep on working like a

>maniac.

> > > ________________________________

> > > From: AllyGator <gatorshime_2000@>

> > > To: tetheredspinalcord

> > > Sent: Wed, February 9, 2011 5:05:15 AM

> > > Subject: Surgery ended up worse than planned

> > >

> > > ﾃã¤

> > > Just had my 2nd detethering surgery 3 weeks ago. I've had 2 surgeries to

>remove

>

> > >

> > > tumors then the 1st TSC surgery in 2007. I was walking with my walker on

>day 1

>

> >

> > > after surgery and was fully functional until this past surgery. It was at

>T6-9.

>

> > >

> > > The surgeon lost the measuring at the end of the surgery. I am now in a

>rehab

>

> > > hospital with an incomplete injury to my cord. He detethered it but, also

>cut

>

> > > away some of the bone and put some screws and plates in the spine. He says

>the

>

> >

> > > Mri SHOWS no major problems and he HOPES the swelling will go down and

some

>

>of

>

> >

> > > my function and the ability to walk will return. I can wiggle my right

foot

>

>

> > > toes, raise my left leg some and I do have feeling in my right shin and my

> > > entire groin area. Still very depressed due to the result which was NEVER

>told

>

> >

> > > of ANY risk and the Bowel and Bladder issues are very tough on my dignity.

> > > Anyone else every had where they regained function after surgery. I was

>told up

>

> > >

> > > to a year till we know exactly what will be my outcome. I am working like

a

>

>

> > > maniac in rehab. That is not the problem. I just need some improvements to

>give

>

> > >

> > > me hope as the Dr.'s are the worse pessamists (sp?) in the world. Thanks

>for

>

> > > listening to my gripes.

> > >

> > > Shimer

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

I'm not sure that how active you are really affects your recovery. Infants

and children do tend to bounce back from the surgery faster than adults, but

I think that is because they are growing, their cells are still replicating

and growing and makes it easier for their bodies to repair and recover the

insult to their bodies from surgery.

As an adult, I think surgery and the following recovery will be easier if

you are in better shape going into the surgery. So, if you are unhealthy and

inactive, you would have a harder time recovering from TC surgery (as you

would any surgery). But, if a person is not active due to neuro deficits

that have started progressing, it may seem that they are not recovering as

well from surgery, when it may have more to do with realistic expectations

post-op. The point of surgery is to stop the neurological decline, not to

recover lost function. So, if a person has developed neuro deficits going

into subsequent surgeries, it may seem that they are not recovering as well

as they did with previous surgeries, but instead, they are not going to get

the results they had from previous surgeries they went into without existing

deficits.

Jenn

>

>

> I fully

> believe that recovery and a lower risk of retether, is dependent on how

> active a person you are. With the 4th surgery she was extremely inactive.

>

> Livvie

>

> -

>

[Guest guest]

,

I'm sorry to hear that the outcome was not what you expected, but as others

have said, you are early in the recovery process.

I have had a total of 3 surgeries. I had my initial untethering in April

2000 (my cord was tethered at the diastematomyelia). They removed the piece

of bone dividing my spinal cord and the MD used a bovine pericardium graft

on my dura. My body didn't like the graft and attacked it with scar tissue.

I retethered and was back to my pre-op pain levels 4 months after the

surgery.

I returned to my neurosurg and he said there was nothing wrong with me and

discharged me from his service. I found a pedi neurosurgeon that specialized

in TC that agreed to see me. He said that even though the MRI didn't show

anything (post-op, cords always look tethered), but based on my symptoms it

was clear I had retethered. I offered to do surgery, but after the first, I

swore I would never do it again. I put it off for 1 1/2 years (the MD agreed

I could put it off as long as I could tolerate the pain and I didn't develop

any neuro deficits). I had my second untethering in Dec 2002. It was far

worse than he imagined when he opened me up. He said it looked like someone

poured a bottle of super glue in my back there was so much scar tissue. He

removed the bovine pericardium graft material. I had also developed

arachnoiditis.

I lost a little function in my left leg, but got it back with pt. I had gone

home with a walker and by Feb was walking unaided. I was in PT to continue

strengthening, when I suddenly and rapidly started losing function in both

legs. By April, I was walking with bilateral AFOs and forearm crutches and

still VERY unstable. MRI showed that I developed hydrosyringomyelia.

He said that there was more risk going into this surgery, but thought it

would be successful. When I woke up, I was paralyzed at T12 (meaning no b & b

function either). I went to a phenomenal IP rehab facility (Shepherd Center,

which is a Model Spinal Cord Injury Center - I HIGHLY recommend finding one

and going there for rehab - IP or OP). The MRI did not show any reason for

my paralysis (and still doesn't). He was optimistic that I would regain my

function (at least to my pre-op level). He thought it was due to swelling

and I was on HIGH dose IV steroids for a few weeks, but didn't really change

much (got feeling down to my knees and movement in my abs and hips), but

still, not enough to walk with unless I use KAFOs and that is WAY too

inconvenient and slow.

My first surgeon didn't really explain the risks either. He NEVER mentioned

there was a risk of retether. He said the risk of paralysis and loss of b & b

function was at risk if I didn't do the surgery. But, as with any spine

surgery, the informed consent did say infection, death and paralysis were

risks (although he minimized them, saying they were virtually

impossibilities).

Hang in there and even if you don't regain function, walking is just a way

to get there.... and there are a lot of different ways to get there. I have

probably done more since my paralysis than before (horseback riding, jet

skiing, water skiing, zip line, etc, etc). If you have a MSCIC close to

you, most have great peer support groups.

Best wishes in your recovery,

Jenn

>

>

> Just had my 2nd detethering surgery 3 weeks ago. I've had 2 surgeries to

> remove tumors then the 1st TSC surgery in 2007. I was walking with my walker

> on day 1 after surgery and was fully functional until this past surgery. It

> was at T6-9. The surgeon lost the measuring at the end of the surgery. I am

> now in a rehab hospital with an incomplete injury to my cord. He detethered

> it but, also cut away some of the bone and put some screws and plates in the

> spine. He says the Mri SHOWS no major problems and he HOPES the swelling

> will go down and some of my function and the ability to walk will return. I

> can wiggle my right foot toes, raise my left leg some and I do have feeling

> in my right shin and my entire groin area. Still very depressed due to the

> result which was NEVER told of ANY risk and the Bowel and Bladder issues are

> very tough on my dignity. Anyone else every had where they regained function

> after surgery. I was told up to a year till we know exactly what will be my

> outcome. I am working like a maniac in rehab. That is not the problem. I

> just need some improvements to give me hope as the Dr.'s are the worse

> pessamists (sp?) in the world. Thanks for listening to my gripes.

>

> Shimer

>

>

>