RE: Introduction Newbie

[Guest guest]

Hi , your doctor is right, the ones that are fixed ain't here

lol. But, you can and should get some good info before making your

decision. I personally made my decision to have surgery because I was

wheelchair bound (age 37 at the time)and in so much pain that I was

nearly suicidal. At that time, no one offerred me anything that

helped with the pain at all and I was beside myself. I felt it was

either surgery or me. The surgery helped and I was basically pain

free (after recovering from surgery) for about six months. I was told

that once the surgery was done that was it, I was fixed. Not so much.

I started having all these wierd sensations, bowel & bladder issues

and pain and weakness BEFORE I started browsing the web for help. I

was so Thankful to find this forum and find that TC is not always

just a " snip, snip, you're better " thing. It can be I guess, and I'm

not sure whether there are more of us here with this experience or

out there with a healed experience. Good luck with your decision,

mine was an easy one at the time. Now, I think I probably need

another surgery but am more afraid of further damage than of what I

am dealing with currently.

Many Blessings,

>

> Hi group. I've been reading the posts for awhile but haven't

posted

> until now. Thought it might be time to introduce myself. I've been

> living with chronic pain for over 10 years.

>

> A little about me.... I'm a 46 yr old female with spina bifida

> occulta, mild scoliosis and a diastometamyelia. I've know about my

> SBO all my life but only found out about the split cord a few years

> ago. When I asked the neurologist that had ordered the MRI what

> diastometamyelia was, he said not to worry about it, that I had

been

> born with it along with the SBO and it was nothing to worry about.

My

> pain is mostly in my sacral area where the sbo is located. It

wasn't

> until last fall when I was referred to a neurosurgeon that I was

> diagnosed with tethered cord syndrome. He recommended a detethering

> surgery. I was scheduled to have the surgery this past January but

> decided against it at the last minute. I wanted to be sure I had

> explored all options before the surgery.

>

> Since January I believe I've had just about every possible

procedure

> known to mankind to stop the pain. In May I had a rhizotomy which

> helped quite a bit for about a month but the pain is starting to

come

> back. So now I'm back to considering surgery again.

>

> My question for any of you that faced surgery is, how did you

decide

> to have the surgery, and did it help?

>

> And BTW... My NS has all but forbade me to go online and visit

these

> message boards. He says the only people that I will find here are

> the people that did not have a good outcome from their surgeries.

He

> thinks that if a person has a successful surgery and is no longer

in

> pain they will have no reason to be online looking for help, and

its

> only going to scare me and cloud my judgement. I don't totally

agree

> with this (obviously!)

>

> So here I am. Just wanted to jump in and introduce myself. I have

> about a bwazillion questions but won't throw them all at you at

> once.

>

> Thanks,

>

[Guest guest]

Hi -

I am 43 years old and finally decided to have surgery because along with the

chronic back and leg pain, my left leg was getting weaker and I had lost a lot

of my ankle flexibility in that leg. I tried everything under the sun for the

last 10 years with regards to therapy and was getting worse, not better. It is

too early for me to tell you if my surgery was a success -- I am only 4 1/2

months post-op and my neurosurgeon says I need to give it a year before I make

any conclusions. I also have a split cord, SBO and to further complicate things

grade 1 spondolythesis.

I think your doctor is partially right about those who have surgery, get better,

move on from groups like this. There have, however, been several posts here

about successful surgeries. This group has been a blessing to me as I was given

much more info here than by my neurosurgeon.

I was worried my left leg would continue to deteriorate if I didn't do the

surgery. What kind of a tether do you have -- tight/fatty filum or lipoma? A

tight filum is generally a simpler surgery than a lipoma, and less likely to

retether. Having said that you will realize by reading posts that everyone's

situation is different so no two TC cases are the same. That makes it difficult

to predict the outcome of surgery as well. So it is really a personal call.

Feel free to email me if you have any more questions.

Cheers, Dee

To: tetheredspinalcord

From: kbhansel@...

Date: Tue, 15 Jul 2008 13:35:41 +0000

Subject: Introduction Newbie

Hi group. I've been reading the posts for awhile but haven't posted

until now. Thought it might be time to introduce myself. I've been

living with chronic pain for over 10 years.

A little about me.... I'm a 46 yr old female with spina bifida

occulta, mild scoliosis and a diastometamyelia. I've know about my

SBO all my life but only found out about the split cord a few years

ago. When I asked the neurologist that had ordered the MRI what

diastometamyelia was, he said not to worry about it, that I had been

born with it along with the SBO and it was nothing to worry about. My

pain is mostly in my sacral area where the sbo is located. It wasn't

until last fall when I was referred to a neurosurgeon that I was

diagnosed with tethered cord syndrome. He recommended a detethering

surgery. I was scheduled to have the surgery this past January but

decided against it at the last minute. I wanted to be sure I had

explored all options before the surgery.

Since January I believe I've had just about every possible procedure

known to mankind to stop the pain. In May I had a rhizotomy which

helped quite a bit for about a month but the pain is starting to come

back. So now I'm back to considering surgery again.

My question for any of you that faced surgery is, how did you decide

to have the surgery, and did it help?

And BTW... My NS has all but forbade me to go online and visit these

message boards. He says the only people that I will find here are

the people that did not have a good outcome from their surgeries. He

thinks that if a person has a successful surgery and is no longer in

pain they will have no reason to be online looking for help, and its

only going to scare me and cloud my judgement. I don't totally agree

with this (obviously!)

So here I am. Just wanted to jump in and introduce myself. I have

about a bwazillion questions but won't throw them all at you at

once.

Thanks,

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[Guest guest]

Thanks everyone for your replies. I am so grateful this forum is here

for us to share experiences and information, dispite what my NS says!

Dee, I have the fatty filum type of tether, not a lipoma.

Here is a part of what my MRI report says: There is a focal

diastematomyelia of the spinal cord at the T12-L1 level, with two

distinct hemicords. There is a more normal appearing distal spinal

cord superiorly and a normal signal conus inferiorly. Small focal

area of fat in the filum is seen at the L3-L4 level. Conus terminates

at L1-2. "

And here is what the NS report says.... " Her MRI shows a split cord

malformation at the conus and a low-riding conus suggestive of

tethered cord. She is aware that there is a possibility that this

will not help her pain, but she obviously has symptoms related to her

tethered cord and that the only treatment option would be to do a

lysis of the midline septum and cutting of the filium terminale. The

risks of surgery are quite low and the risk of having to redo the

surgery is also low. "

At this time I have no bladder or bowel problems. No shooting pains

down the legs, most of my pain is located in my sacrum. Its extremely

painful to sit at times.

One of my biggest concerns is that the surgery is not going to help

the pain. Even the NS makes no guarantee of that. So why do it? But

also, the NS says if I don't have the surgery I am taking a chance of

losing control of my bowel and bladder.