Re: Surgery ended up worse than planned

[Guest guest]

Hi -

I am so truly sorry to hear of your outcome with your surgery. Most of us have

had surgery/TC in our lower back -- I do remember one person this last year who

had TC from trauma high up in the spine. I can in no way compare my past two

surgeries with yours, or the outcome (TC surgery and then spinal fusion) -- but

what I can tell you is it did take MORE than a year for me to heal from the TC

surgery. I was told the same thing, 1 year, but it was not until a lot longer

than that before I felt improvements rather than feeling I was worse off.

After my most recent spinal fusion 6 months ago I had a lot of numbness in one

foot and terrible pain down my legs along with the usual pain in the back from

surgery (again, nothing at all compared to your nerve symptoms) -- the numbness

did go away completely after a month or so and the leg pain after a couple of

months. You are early in the healing stages and there for sure is a lot of

swelling which could be impacting the nerves. I remember being so concerned

after my fusion that the numbness and horrible pain would not go away and I was

told the same thing, there was a lot of swelling at that point. I am hoping

things will improve for you as time goes on.

I'm sure someone who has had a similar experience will chime in,

Dee

To: tetheredspinalcord

From: gatorshime_2000@...

Date: Wed, 9 Feb 2011 13:05:15 +0000

Subject: Surgery ended up worse than planned

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]

, so very very sorry to hear the challenges and frustrations you are going

through. Unfortunately, there is just no way to tell right now. I know thats not

what you want to hear. Hopefully with time and when some of the swelling

subsides you will regain some function. In the meantime, take advantage of being

in a rehab and be sure to work with an OT not just PT. OT's are invaluable at

teaching you how to get the most out of what function you have.

I am also so very sorry that you didnt realize that this could be a possible

complication. This is why I am always the devils advocate in our discussions

about surgery on this forum. Spinal Cord surgery can result in nerve damage.

Depending on the level of damage, that can mean quadraplegia, paraplegia,

numbness, severe nerve pain, loss of bowel & bladder function, syrinx formation,

arachnoiditis, scar tissue resulting in retether etc  Even what is considered a

" sucessful " surgery can result in some of these.

I honestly do not know about the kiddos that are diagnosed at birth. They have

preventative surgery and then some go on to have multiple surgeries due to

retether associated with growth. How are these kids turning out? Do we have

enough that have gotten into adulthood to really see?

For those of us that were diagnosed as adults, I dont know if we have already

sustained too much damage by years of being tethered or not but it seems very

few get " better " with multiple surgeries. There are those that do though so you

just never know. It does seem that detethers at the higher levels are without a

doubt more risky and can result in more serious loss of function. That is why

our member who was tethered in the cervicals was unable to find a surgeon who

would work on her because the risk of quadraplegia was higher than not. I'm so

sorry you were not aware of these risks. Surgeons need to be more responsible

about explaining these, especially on the higher level tethers. That is what

" informed consent " means.

Honestly though, you are so early in recovery, your deficits could at this point

be caused by swelling so try to stay positive (I know, easier said than done I

had a  spinal nerve surgery back in July which left me with no feeling in the

pelvis, incontinence etc..gradually coming back though, be patient) and dont

push too hard in PT as it may actually irritate things more. Everyone on here

can tell you that we have to limit our exercises and activities... even years

after surgery, or we wind up with increased pain and deficits. Most PT's have

the " PUSH THROUGH THE PAIN " mentality, with this condition that just does not

work. Please keep us updated and I look forward to hearing about your

improvements  

 Many Blessings your way,

Subject: Surgery ended up worse than planned

To: tetheredspinalcord

Date: Wednesday, February 9, 2011, 7:05 AM

 

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

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[Guest guest]

As a parent of an adult child, not diagnosed at birth, but at 18months, I can

say that her outcome has not been any better.  She is now 28, has just had her

5th and most involved detethering surgery to date.  In September she was

walking unaided, and by December she was unable to move either leg, was

incontinent, and in severe pain.  Was in the worst pain she has ever been in

after surgery.  Begging, " mama tell them to make it stop " .  Almost 2 weeks

post surgery, she is still having lot's of pain, but it is improving.  Has some

movement of both legs, is still incontinent, only now the bowels are involved

too.  Dr. says not to get too discouraged, it is too soon to say it's

permanent.  I can tell you that when she was a baby, a teenager and then a

young adult, recovery was pretty quick, she was active.  The 4th surgery, she

never really recovered fully before she was right back in surgery again, and

that was almost 2 years to the date.  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.  She now

sees that she has to get off of her butt and get busy.  Working through the

pain is difficult to watch.  I can't even imagine how painful it must be. 

But, from seeing my daughter go through it, I can tell you how necessary it

is.  Please try to keep your chin up, you will be in my prayers! 

Livvie

Subject: Surgery ended up worse than planned

To: tetheredspinalcord

Date: Wednesday, February 9, 2011, 7:05 AM

 

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

__________________________________________________________

Finding fabulous fares is fun.

Let Yahoo! FareChase search your favorite travel sites to find flight and hotel

bargains.

http://farechase.yahoo.com/promo-generic-14795097

[Guest guest]

:

    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. 

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

________________________________

To: tetheredspinalcord

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

Subject: Surgery ended up worse than planned

 

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 what type of detethering it was.  The operation report says

" the dura was opened ... L3-L5 ... there was not found to be a significant

tethering of the distal aspect of the spinal cord and filum ...  intradural

exploration and lysis of adhesions was undertaken. "

    My outcome is bad because, prior to surgery I walked with 2 trekking

poles

for balance and was beginning to lean on them more & more.  I began using the

poles in 2006.  Prior to that I walked unassisted.  Immediately after the

surgery I had excruciating pain down my inner thighs and was unable to stand

up.  An MRI found an epidural hematoma pressing on my cord and I had a 2nd

surgery on day 4.  After that the pain was gone but I was still unable to stand

up, support my weight on my legs, or move them forward to walk.  I now have to

use a walker on which I lean heavily and have more pain than I ever had.

    When I was born in 1944 there was no such term as " tethered cord. "   I

had

spina bifida at L5-S1 with all the garbage that went along with that such as

parasthesias, " drunken sailor " gait, incontinence, etc.  Ten years ago I sought

medical help because I felt that I was losing strength.  That's when I had my

first MRI which showed the low-lying tethered cord phenomenon.  I was

sceptical.  If it had been tethered all my life, why was I just now having

symptoms?  So, I lost weight, joined a gym, etc.  I decided to have surgery

at

this time (Jan. 2010) because the deterioration in abilities was interfering

with my lifestyle.  I was no longer able to mount my 10-speed bike, climbing

stairs was getting to be a chore, getting around on our sailboat was

difficult. 

It was not about pain.  I had some sciatica (I am OLD) and tendinitis, but

nothing for which I would use medication.  So I decided to go for it.

    If I had found this group before I had surgery, I might not have gone

through with it.  It seems that most group members have had negative

experiences.  Of course the happy campers don't need this forum.

    My surgery was done at Cedars Sinai Medical Center in Los Angeles.

    I hope this has been helpful.  It's a difficult decision and only you

can

decide whether the potential benefits are worth the risk.  Please let me know.

 

________________________________

To: tetheredspinalcord

Sent: Fri, February 11, 2011 5:58:34 PM

Subject: Re: Surgery ended up worse than planned

,

What type of detethering did you have? How has your outcome been bad? Did you

know you had a TC all your life and just decided to do surgery recently? Did you

lose function. I am on the fence regarding surgery so any info would be helpful.

Where did you have surgery done?

Thanks,

>

> :

>     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. 

>

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

> ________________________________

>

> To: tetheredspinalcord

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

> Subject: Surgery ended up worse than planned

>

>  

> 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

>

>

>

>

>

>

>

>