adult tethered cord

January 14, 2007

---I find it very interesting and also confusing how an eight yr old

can show symptoms and then a 40yr old can start showing symptoms.I

have learned from joining all of these sites how everybody is unique.

With that said, I have had symptoms since I was a kid -

headaches,backaches and bladder issues.

I would say the past few yrs they have gotten worse with some new

problems - arm/leg pain, numbness and bowel problems.

My daily life is uncomfortable and sometimes painful,but if my

symptoms didnt progress I could live with this just fine.

Thats why I comptiplating surgery.

In tetheredspinalcord , Rick wrote:

>

> mamachic9800 said the following on 1/12/2007 1:27 PM:

> > Today after many tests I was told I have a tethered cord. My son

just

> > went for surgery two months ago for this.My question is I am 34

yrs old

> > is it worth it for me to have surgery now? Is anybody else here

the

> > same age who have had theis surgery??

> > My family feels that i have lived this way my whole life and why

have

> > surgery now and possible complications, They are driving me

crazy!! and

> > really confusing me...

> >

> Hi ,

>

> Welcome to our group :-)

> Many of us have been here going on 8 years and belonged to other

similar

> groups before W started this one. We have 462 members

here from

> all over the world, many have tons of information but little time

or

> energy to write.

> I am 52 and started having symptoms at age 42. I was scared of

what any

> doctor might find out so I put it off for 18 months before I

finally had

> a MRI. In that 18 months a lot of damage was done. I was at the

point

> where I would be doing something like bending over to pick

something up

> and my legs would be suddenly paralyzed and I would fall to the

ground

> unable to move my legs for 20 minutes or so. This was because I

was

> stretching my tethered cord past its limits. I wish I would have

had the

> MRI 18 months earlier BEFORE the stretched spinal cord was damaged

as

> much as it is. I had surgery in December of 1997, I am still not

able

> to walk unassisted today. How bad or what are your symptoms? What

part

> of the country do you live? We have talked about many good doctors

on

> this list, one doctor actually refers his patients to this list

for

> information. Our archives are full of messages that are

searchable,

> actually 17,859 messages. We have a website

http://www.tetheredcord.com/

> that has some info but I have not updated it for about 4 years due

to

> lack of time (I am going to college under Vocational

Rehabilitation).

> Some of our members have websites with tons of info (Nina from

Great

> Britain comes to mind but I cant find her bookmark). At this point

you

> want to find out everything possible about your particular

condition

> from as many sources as possible.

>

> Rick

>

January 14, 2007

Hello ,

I was 34 when I had my tethered spinal cord release operation, 16 years

ago. It has given me so much that I had never had before, some

improvements are still a wonder to me, so that even though I now have

problems, they are manageable. I had problems right from my childhood

and had to learn (the hard way) that I could not do everything the same

as everyone else. I was told then that I was imagining it all, which I

knew I was not, because then they only had X-Rays. By the time I got to

age 34, I could hardly walk and could not use my hands much either.

When I then was referred to the neurosurgeon and had had the first MRI

scan done, (MRI scans were only just coming into use in NHS hospitals in

England) I was told that I had a tethered spinal cord. I was given the

choice as to whether to have the operation or not and warned that it

posed a threat to my life. I accepted that and agreed and was later

thankful that the neurosurgeon only told me afterwards that he got there

just in time and that without the operation I would have been dead six

months later. I still count the anniversary of my op as my " second

birthday " .

My recovery was long, 2 years, and I had a very understanding family. I

had been given 2 lists, of things I could not attempt to do in the first

year and things I could not do until after the second year. One of the

latter was riding a bicycle. I hadn't been able to do that as a child at

all and I had a few years in which I was able to ride a bicycle and the

joy of that I will always remember.

The operation to release a tethered spinal cord, it was explained to me,

was to stop the deterioration and it was not known in my case whether I

would be able to walk, my neurosurgeon said he hoped I would be able to

walk a few steps, after a time but was delighted that I could do so much

more than that and I was asked to demonstrate (after 7 days lying flat)

that I could now walk _in a straight line_. I found that I could use my

toes to pick things up and feel rough textures with my fingers which,

being things I had never had, it was not expected that I would ever get

more than what I had had at the beginning of my life.

Each case is different but if you are having your symptoms

deteriorating, the operation to release your tethered spinal cord would

stop that. Your neurosurgeon will be able to explain what the operation

will entail as it depends on how and where your spinal cord is tethered

and what your recovery is expected to be like.

Best wishes,

Lincoln, UK

February 12, 2007

Hello, I hope the color doesn't bother you. It just seemed fun to

change the color and I try to have fun in small ways whenever I can!

I know it's been a while since you wrote this but I just found the group

at about midnight last night. If it's not too late for another opinion

I thought I'd share my story.

I was 32 when I was diagnosed with TCS. It took almost a year to get

the right diagnosis. By the time I was diagnosed I had started to think

I was going crazy and making things up somehow or if I was

over-reacting and that maybe things weren't as bad as I thought they

were. My biggest complaint was pain. I went to several different

specialist trying to find out what was wrong. I saw a

gastrointerologist, OBGYN, internest, orthopaedic, chiropractor,

physiatrist. I had several tests done: colonoscopy, upper and lower GI,

barium swollow, ultrasound, x-rays, and others I can't even remember. I

went to the ER several times and finally a doctor at the ER told me I

needed to see a neurologist or neurosureon.

I got lucky and the neurosurgeon I saw had previously specialized in

pediatric neurosurgery. As soon as described my symptoms he said he

thought he knew what was going on but didn't want to say until he had

test results. He ordered an MRI to be done in the SUPINE (on my stomach)

position. The MRI techs had never heard of this and weren't going to do

it until I insisted that they call the doctors office for confirmation.

The next week I went in for my results. I was an absolute wreck. I

thought, if says he can't find anything I'm going to have to admit

myself for a psych eval because I'm obviously imagining this whole

thing. He put the films up on the light board. He pointed to a spot and

said there it is right there. You have a tethered spinal cord. I

immediately started crying, just sobbing into my hands and shaking. He

thought I was upset about the diagnosis and started to comfort me saying

that he could help me. I told him I was crying because I was so happy

that someone had figured it out and that I really wasn't losing my mind

or imagining things.

I had my first surgery in October 2003. I felt like a new woman for

about 9 months. I had never felt so good. After 9 months I started

having the same symptoms again. I had my second surgery in September

2004. Again I felt great for about 9 months. I put off going back in

because I didn't want to go through surgery again. This was the biggest

mistake of my life. I had my third surgery in April of 2006 when I

couldn't stand it any more. Waiting caused permanent irreparable

damage. I got NO relief from my third surgery.

I just had a neuro stimulator implant this past Wednesday, Feb. 7, 2007.

I don't really have an opinion on that since it's still so early into it

and I'm still dealing with surgery pain.

I guess my suggestion would be to go by how you feel. If you feel OK

it's probably OK to wait. If you don't feel OK things ARE going to get

worse. DO NOT wait until the damage is permanent. I would also see if

you can find a pediatric neurosurgeon who is willing to see adults. They

absolutely have the most experience with this condition since it is

usually dealt with while the patient is still a child. I am convinced

this is why my neurosurgeon immediately recognized my symptoms. Also, I

would advise all of your MRIs be taken in the supine (on your stomach)

position. My doctor explained that the reason this helps is because when

you lie on your back the cord settles to the back of the spinal column.

This is the direction the cord is usually thethered so it may not be

visible on the films. On your stomach the cord settles towards your

stomach exept where it is thethered and therefore gives a better view of

where and how severe the thethering is.

I hope this helps and good luck.

I am hoping someone has some info about not getting any relief from

their last surgery because of permanent damage and about the prognosis I

can expect long term. My surgeon says he will not go back in unless

there is absolutely no choice because another surgery will put my

bladder, bowel, and mobility functions at severe risk. I would also like

to hear from anyone who has a neuro stim implant.

I am considering applying for disability if my neuro stim implant

doesn't give some significant relief. Does anyone have any thoughts,

experience, or advice about this?

PS Please forgive any spelling errors!

>

> Today after many tests I was told I have a tethered cord. My son just

> went for surgery two months ago for this.My question is I am 34 yrs

old

> is it worth it for me to have surgery now? Is anybody else here the

> same age who have had theis surgery??

> My family feels that i have lived this way my whole life and why have

> surgery now and possible complications, They are driving me crazy!!

and

> really confusing me...

>

February 12, 2007

Hello

(Not sure if you're name is Christy as your email " name " states or if you are

someone else - you didn't sign your email.)

I had a neuro stim; however, mine needed to be removed about a year later due to

rejection. It did help a buzzing pain that I had in my legs, but not much more

than that. In the beginning it seemed to help more - but after about a month,

my leads migrated and the pain relief stopped almost all together.

I've had five untetherings since my diagnosis in 1998 - no one can tell you,

unfortunately, what the future holds for you. There are so many factors that

will determine that, along with any spills/falls you may have, plus the

positive, nerves heal at a very slow rate so you may even be healing at a very

slow rate.

I know this probably doesn't help - but tethered cord is such a diverse disease

process and no two people are the same.

Kathy

Re: adult tethered cord