Re: My symptoms after detethering

[Guest guest]

Hi teresa,

I can relate to much of what you have gone through, similar

circumstances to some extent. I will explain.

tarheelx4@... said the following on 10/29/2006 7:45 AM:

> Hi,

>

> I had surgery to cut my tight filum Sept. 12th. Dr. Milhorat and Dr. B

operated on four levels, and Dr. Milhorat said I had " The Real McCoy " (i.e.

occult tethered cord). There was no spinal fluid flow at the L4-L5 level and all

of my nerve roots were bound down into two tight bundles with arachnid

adhesions. There was a tortuous vein abutted up against and underneath the tight

filum. After they cleared out the adhesions and cut the filum, it bounced up

about 1 1/2 " , and my spinal fluid flow went back to normal in the lumbar region.

Since my surgery, a lot of my Chiari symptoms backed off, especially the

everyday shocks down my spine. I have not noticed my headaches as much either.

Mind you, I still have a myriad of other problems at my skull base, but I have

not been decompressed because I'm functional. After surgery, I developed

Restless Leg Syndrome two weeks ago which is being combated with Miramex. I will

soon go off this medicine to see if the RLS has settled down. Evidently, RLS

happens to a lot of people after spinal cord surgery. I have some questions

though.

I do not have the 'occult' or split cord or any Chiari issues. According

to my surgery report, my nerves were in tight bundles but the term

arachnid is not mentioned nor any loss of csf flow. When released, my

cord also retracted 1 1/2 inches. I had a lot of RLS both before and

worse after surgery. I take 2 clonopin before bed for that which seems

to work both for RLS and good quality sleep. That has been for past 6-7

years. Sometimes I just take one but find I am restless and get up and

take the other. Also I take a tylenol pm or 2 (generic version much

cheaper) for the every day activity muscle aches and pains.

>

> I have L4-L5 and L5-S1 herniations. I'm not having problems with L4-L5, but

the L5-S1 herniation is causing me problems I believe. There is an annular tear

there and fluids from the center of my disc still leak out and according to my

discogram report, when I was injected at that level with dye/pressure, it sent

pain down my leg and into my foot.I'm also dealing with left foot drop. I'm

going to PT, but the more I work on the foot drop, the more pain I have. When

I'm out and about doing errands or standing on my feet for a while, my foot

becomes worse with pain, I limp more, and I tend to trip over my left foot,

especially when I walk up stairs. Another problem that PT is trying to address

is the severe cramping in my calves I get. I cannot loosen them up no matter

what I do. Just sitting in a chair, I feel the right calf pain constantly and it

is very sharp. Am I always going to have this? I've tried to ask questions in

this group before, but for the most part I do not get responses back. I'm about

to give up here and stop participating. I'm not trying to be rude, but I really

feel as if I've been left out in the cold for the most part.

I do not have any herniations and their associated paid but do

experience left foot drop and used to experience severe cramping in my

right calf. I waited 18 months after symptoms started, therefore much

nerve damage and more due to surgery. I still must use a walker and

wheelchair for long distances. In the beginning my dr injected botox

into my right calf to release it for 90 days or so and injected botox

into my adductors to release them. The adductors are in your groin area

and when they are tight cause your feet to overlap, not being able to

spread legs. Thats one reason I do hippotherapy, the horse is so wide

and gives good stretching. When your adductors are loose® you can walk

easier. 18 months of wearing a knee/ankle afo allowed my foot drop to

decrease so now I just wear quality hiking boots for ankle support along

with custom orthotics so I stand evenly on my feet. If I do not stand

evenly on my feet, for some reason the piriformus muscles in my hips

tighten up. The sciatic nerve is directly under the piriformus and

quadratus. When they are tight, they put pressure on the sciatic nerve

which sends pains down the legs to the toes. Massage and intrathecal

baclofen help that. I have not had botox injections for several years,

reducing pressure on the sciatic nerve seems to let the calf muscles

relax. Although I had surgery for hammer toes, I still feel the muscles

trying to contract the toes until the pressure on the sciatic nerve is

reduced.

Many people on this list will not respond to issues they have no

experience or knowledge with, what can they write? I do not recall you

ever giving so much detail before or I would have responded earlier to

your posts. If you did, perhaps I was busy with school or something or

possibly missed your post. I do not think anyone is ever ignored here,

there is just lack of anything to say. Sorry bout that. Well it is sunny

and 64 outside so I am going to go ride my horse.

Rick

[Guest guest]

I too am having foot drop problems after detethering. It is really

disappointing.

Do you go to a pain management specialist? It sounds like you are dealing

with chronic pain -- what are you taking for it?

[Guest guest]

Hello ,

Being only 6 weeks or so since your cord release, you might still be

experiencing " spinal shock. " The nerves react badly to having been

jostled, having the direction of their roots changed when your cord

jumped up, or having to get accustomed to new messages. Nerve tissue

tends to take longer to heal than muscles or skin. All of which to

say that you are still early in the healing process. It took three

months for my bladder to calm after my cord surgery, which was almost

10 years ago.

Rick's suggestion of boots to help with foot drop is a good one. I

wore all sorts of hiking boots until my drop and pronation got so bad

I needed AFOs. And I was left with chronic spasms in my upper buttock,

which is control fairly well with oral baclofen. I have learned to

pace myelf too, no easy!

All this to say, no...you may not always be the way you are now. But

even if things do not improve as much as you want, there are ways to

manage. Hang in there!

V

>if the RLS has settled down. Evidently, RLS happens to a lot of

>people after spinal cord surgery. I have some questions though.

>.... I'm also dealing with left foot drop. I'm going to PT, but the

>more I work on the foot drop, the more pain I have. When I'm out and

>about doing errands or standing on my feet for a while, my foot

>becomes worse with pain, I limp more, and I tend to trip over my left

>foot, especially when I walk up stairs. Another problem that PT is

>trying to address is the severe cramping in my calves I get. I cannot

>loosen them up no matter what I do. Just sitting in a chair, I feel

>the right calf pain constantly and it is very sharp. Am I always

>going to have this?