RE: Looking for Older Adults

[Guest guest]

Welcome to the group although I am sorry you've had such a tough go of it. I am

surprised they did so much to you in one surgery! There are plenty of adults in

this group -- many of us not diagnosed until later in life. I am 46, had a

detether of a fatty filum 2 1/2 years ago and a spinal fusion 6 months ago. It

took me a long time to heal from the TC surgery and am still in the healing

process from the spinal fusion -- I was much worse after both surgeries

initially. After about a year and a half post TC surgery I did notice a lot of

improvement in my leg pain -- the constant aching is basically gone. I do still

get aching in my legs from walking more than 20 minutes but it goes away now

right after I stop. Am still hoping for more lower back pain relief with the

spinal surgery. I do have nerve damage in my left leg which although has not

improved is not deteriorating at this point.

There are lots of adults in the group who have had both positive and negative

outcomes with TC surgery, and many who have retethered after initially surgery.

A great resource of experience and information in this group.

Dee

To: tetheredspinalcord

From: sailorsu@...

Date: Mon, 7 Feb 2011 12:22:01 -0800

Subject: Looking for Older Adults

I am new to this group. Was born in 1944 with spina bifida, L5-S1. Successful

education, career, 42-year marriage, active passtime pursuits, etc. At age 65

(January 2010) I had detethering surgery plus stenosis decompression (after all,

I am OLD), laminectomies L3-4 & parts of L2 & L5. It didn't go well. Recovery

was complicated by an epidural hematoma and CSF leak that led to a 2nd surgery

on post-op day 4. I went from using trekking poles for balance to using a

walker, from a little sciatica pain to lots more pain. The MRI that confirmed

the hematoma said my cord was tethered. Same thing with MRIs in August 2010 &

January 2011. I would like to hear from any golden oldies out there, or even

just adults. Also, has anyone had detethering that didn't work from day 1?

Thanks.

[Guest guest]

Dee:

    Thanks for the prompt response.  As you might imagine, I have lived with

many deficits and muscle imbalances all my life and count myself lucky to have

had only 1 previous spinal surgery - at age 2 by the " father of pediatric

neurosurgery " Dr. Franc Ingraham at Boston Children's Hospital.  The report from

my current NSG was that the tethering wasn't as bad as expected but the stenosis

was worse.  I'm & % & ^@#  frustrated by being told that all I need to do is more

exercise (have been a gym bunny for 10 years and am in great shape in those

areas that are " wired " correctly).  Am also frustrated with the PT that I had

which seemed to concentrate on the muscles that were weak before the surgery. 

If they didn't work before, why would they work now?  Sorry for running on ... 

My next appt. is with the head of neuro-rehab at UCLA.

________________________________

To: tetheredspinalcord

Sent: Mon, February 7, 2011 12:30:58 PM

Subject: RE: Looking for Older Adults

Welcome to the group although I am sorry you've had such a tough go of it.  I am

surprised they did so much to you in one surgery!  There are plenty of adults in

this group -- many of us not diagnosed until later in life.  I am 46, had a

detether of a fatty filum 2 1/2 years ago and a spinal fusion 6 months ago.  It

took me a long time to heal from the TC surgery and am still in the healing

process from the spinal fusion -- I was much worse after both surgeries

initially.  After about a year and a half post TC surgery I did notice a lot of

improvement in my leg pain -- the constant aching is basically gone.  I do still

get aching in my legs from walking more than 20 minutes but it goes away now

right after I stop.  Am still hoping for more lower back pain relief with the

spinal surgery.  I do have nerve damage in my left leg which although has not

improved is not deteriorating at this point.

There are lots of adults in the group who have had both positive and negative

outcomes with TC surgery, and many who have retethered after initially surgery. 

A great resource of experience and information in this group.

Dee

To: tetheredspinalcord

From: sailorsu@...

Date: Mon, 7 Feb 2011 12:22:01 -0800

Subject: Looking for Older Adults

 

I am new to this group.  Was born in 1944 with spina bifida, L5-S1.  Successful

education, career, 42-year marriage, active passtime pursuits, etc.  At age 65

(January 2010) I had detethering surgery plus stenosis decompression (after all,

I am OLD), laminectomies L3-4 & parts of L2 & L5.  It didn't go well.  Recovery

was complicated by an epidural hematoma and CSF leak that led to a 2nd surgery

on post-op day 4.  I went from using trekking poles for balance to using a

walker, from a little sciatica pain to lots more pain.  The MRI that confirmed

the hematoma said my cord was tethered.  Same thing with MRIs in August 2010 &

January 2011.  I would like to hear from any golden oldies out there, or even

just adults.  Also, has anyone had detethering that didn't work from day 1? 

Thanks.

[Guest guest]

-- we are all different and what has helped me may not work for others. I

was an extremely active person when I was younger (god knows how I could have

been athlete of the year in high school and done so many sports with my spinal

condition that was unknown to me at the time) -- but after I started having back

and leg problems every rehab program I tried seemed to end up injuring me rather

than helping -- until I stumbled upon an amazing physiotherapist who uses

pilates based rehabilitation using the reformer machine. This mode of exercise

is what has worked for me, along with swimming. Everything else seems to just

make my symptoms worse. I've also dabbled in other modes of healing, low laser

therapy, nutritional therapy which I believe have also had positive effects.

Yes, the answer for TC is not more exercise -- but I do believe the right type

of exercise is important and we are all likely different in what works for each

of us. It is very important to have strong core muscles, and maintain whatever

strength you have in your legs -- the less you do the less you will likely be

able to do. But that said, so many things can make this condition MUCH worse --

listen to your body! I do feel my left leg (nerve damaged leg) is stronger than

it used to be with the pilates exercises I do twice a week -- but I also know it

will never be normal.

It is also difficult to know what is causing what when you have more than one

condition (eg stenosis and TC). I have been in that dilema with both TC and

spondylolisthesis -- the symptoms for both conditions overlap so it is unknown

what has caused what. That is the reason I first had the detether surgery,

waited a couple of years to assess, and then proceeded with the spinal fusion.

Are they recommending another surgery to deal with the retether?

Dee

To: tetheredspinalcord

From: sailorsu@...

Date: Mon, 7 Feb 2011 14:01:48 -0800

Subject: Re: Looking for Older Adults

Dee:

Thanks for the prompt response. As you might imagine, I have lived with

many deficits and muscle imbalances all my life and count myself lucky to have

had only 1 previous spinal surgery - at age 2 by the " father of pediatric

neurosurgery " Dr. Franc Ingraham at Boston Children's Hospital. The report from

my current NSG was that the tethering wasn't as bad as expected but the stenosis

was worse. I'm & % & ^@# frustrated by being told that all I need to do is more

exercise (have been a gym bunny for 10 years and am in great shape in those

areas that are " wired " correctly). Am also frustrated with the PT that I had

which seemed to concentrate on the muscles that were weak before the surgery.

If they didn't work before, why would they work now? Sorry for running on ...

My next appt. is with the head of neuro-rehab at UCLA.

________________________________

To: tetheredspinalcord

Sent: Mon, February 7, 2011 12:30:58 PM

Subject: RE: Looking for Older Adults

Welcome to the group although I am sorry you've had such a tough go of it. I am

surprised they did so much to you in one surgery! There are plenty of adults in

this group -- many of us not diagnosed until later in life. I am 46, had a

detether of a fatty filum 2 1/2 years ago and a spinal fusion 6 months ago. It

took me a long time to heal from the TC surgery and am still in the healing

process from the spinal fusion -- I was much worse after both surgeries

initially. After about a year and a half post TC surgery I did notice a lot of

improvement in my leg pain -- the constant aching is basically gone. I do still

get aching in my legs from walking more than 20 minutes but it goes away now

right after I stop. Am still hoping for more lower back pain relief with the

spinal surgery. I do have nerve damage in my left leg which although has not

improved is not deteriorating at this point.

There are lots of adults in the group who have had both positive and negative

outcomes with TC surgery, and many who have retethered after initially surgery.

A great resource of experience and information in this group.

Dee

To: tetheredspinalcord

From: sailorsu@...

Date: Mon, 7 Feb 2011 12:22:01 -0800

Subject: Looking for Older Adults

I am new to this group. Was born in 1944 with spina bifida, L5-S1. Successful

education, career, 42-year marriage, active passtime pursuits, etc. At age 65

(January 2010) I had detethering surgery plus stenosis decompression (after all,

I am OLD), laminectomies L3-4 & parts of L2 & L5. It didn't go well. Recovery

was complicated by an epidural hematoma and CSF leak that led to a 2nd surgery

on post-op day 4. I went from using trekking poles for balance to using a

walker, from a little sciatica pain to lots more pain. The MRI that confirmed

the hematoma said my cord was tethered. Same thing with MRIs in August 2010 &

January 2011. I would like to hear from any golden oldies out there, or even

just adults. Also, has anyone had detethering that didn't work from day 1?

Thanks.