Re: untethered cord surgery

[Guest guest]

My daughter has ACM/SM and still was having a lot of leg symptoms and

scoliosis is getting worse. I went to a new nsg and he thinks she has a

problem with the end of her spine and wants to do a untethered cord surgery.

If anyone has had experience with this I would greatly appreciated any advice,

information, or experiences about the surgery.

How long recovery?

How much pain?

Did it make a difference?

etc, etc.......

she had a chiari decompression three years ago and the Dr. did say it's

nothing compared to that. Just curious about what you all think. Thank so

much for this list

Love you guys

------------------------------------------------------------------------

[Guest guest]

I had surgery for tethered cord almost exactly two years ago. I was in the

hospital for six days. It took a few weeks after that for me to get my strenth

back, but I was able to go back to school right away. (I had surgery done

during my spring break). Unfortunately, I had more leg problems after surgery,

different than what I had started with. So I guess I would say that it took me

about a year and a half to fully recover. One thing that I wished I had

understood after surgery is that it does take the spinal cord a long time to

heal. I was very afraid that the doctors had messed something else up. Now I

realize that it just took a lot longer to heal than I ever thought it would. If

I had to do it all over again, I still would've done it. It is not worth the

risk of allowing your legs to lose more function than they already are. I hope

that this has been helpful. If you have any questions feel free to write me

back. I guess my situation is the opposite. I dealt with tetherd cord first

and now ACM. With those two factors and the fact that I have myelomeningocele

(spina bifida) it is really difficult to tell what is what when it comes to my

symptoms!

-Angie

P.S. I was 18 when I had the surgery.

------------------------------------------------------------------------

[Guest guest]

Hi Angie. This is somewhat encouraging. My daughter still has leg pains.

However, it seems to be worse now than after her TC surgery 1.5 years ago. It

doesn't take long for her to complain from walking about her leg pain and

weakness. Seems that she used to walk further before complaining than now. Did

you have any progression like this? She had ACM surgery in Jan99.

Eurico

Original Article: /list/chiari/?start=14295

> I had surgery for tethered cord almost exactly two years ago. I was in the

hospital for six days. It took a few weeks after that for me to get my strenth

back, but I was able to go back to school right away. (I had surgery done

during my spring break). Unfortunately, I had more leg problems after surgery,

different than what I had started with. So I guess I would say that it took me

about a year and a half to fully recover. One thing that I wished I had

understood after surgery is that it does take the spinal cord a long time to

heal. I was very afraid that the doctors had messed something else up. Now I

realize that it just took a lot longer to heal than I ever thought it would. If

I had to do it all over again, I still would've done it. It is not worth the

risk of allowing your legs to lose more function than they already are. I hope

that this has been helpful. If you have any questions feel free to write me

back. I guess my situation is the opposite. I dealt with tetherd cord first

and now ACM. With those two factors and the fact that I have myelomeningocele

(spina bifida) it is really difficult to tell what is what when it comes to my

symptoms!

> -Angie

> P.S. I was 18 when I had the surgery.

------------------------------------------------------------------------

[Guest guest]

After my tethered cord surgery I felt as if my legs had gotten weaker than

they've ever been before. Now it is two years later and the more time that

passes seems to find me getting stronger (and yet still not as strong as I used

to be). I believe that trauma such as spinal cord surgery is very difficult for

a body to recover from. As I said before, it also gets very confusing because I

have spina bifida and ACM 1 too. I just don't know what is causing what anymore!

Yes, it is definitely possible that nerve damage can be done after a tethered

cord surgery. But as I said before, it is much better than the damage that can

be done by putting off surgery. Think about it. Your spinal cord is being held

down. Every time you bend or move a certain way, you are stretching your spinal

cord. You're adding tension in a place already filled with lots of tension.

And those muscles are used very often! This wear and tear can destroy those

nerves. Finding yourself having more problems after surgery than you had before

is very frustrating! It definitely put things in my life into perspective for

me. All we can do is wait and see. I just try to remember to do what I think

is best for me and to fight for it with all my strength. I've come to realize

that I have more knowledge about my condition than any doctor will ever have.

That is why I always listen to suggestions, but make the final decision on my

own. I hope all of this helps. Anyone dealing with anything like this can

e-mail me anytime if you need to. Oh, now I have a question for you. Were

there any leg problems related with the ACM or just with tethered cord? Do you

find any other symptoms which seem to overlap?

Warm wishes,

Angie

------------------------------------------------------------------------