living with nerve damage

[darren]

hi, I'm new to this site, its helped me alot. I had a tumor in my lumbar area. it was removed 23 yrs ago, I've noticed my leg strength in my left leg as gradually gotten worse over the yrs, especially after I turned 30. does anyone know if nerve damage gets worse over time for people with SCTI? last year I had an xray taken of my hips, thinking that I may have arthritis in my hips. there was no sign of arthritis, thank God. so now I'm walking with a cane and I don't know if I can strengthen my left leg to where it was 6+ yrs ago when I did not need a cane. if anyone knows about this, your comments are greatly appreciated.

Darren

[8338]

Hi Darren,
My tumor was T1-T2 and affected my right leg especially. The thing that has really strenghtened my muscles and walking is doing the eliptical. I do at least a 1/2 hour.
I still walk with a cane but my leg is much stronger when it pushes off and I can walk in the wind now, whereas I couldn't do that before. I hope this helps.
Barb

[mak164]

Hi Darren -

I had my tumour when I was 16/17 and recovered well. I was left with a very slight limp and some wasting in my left calf, plus the usual numbness. However, I was fully active to the extent of being able to a have a full range of activities including judo.

I first noticed some weakness in my legs when I was in my late thirties, but it was only slight and didn't really limit me. During my forties and fifties I could go fell walking for up to ten miles.

In my early sixties I took up conservation work, some of it particularly strenuous (like pushing wheelbarrows full of gravel through mud ), and coped OK for a while, if a bit slow.

However, over the past three years (I'm 65 now) my walking has seriously deteriorated and I now walk with a stick when outside the house. I saw a neurologist last year, who said there was nothing sinister happening, but I presume I'm having the long term effects of radiotherapy, plus, of course, ageing.

I saw a physiotherapist for a while, who suggested that I should not undertake physically stressful exercise, but that Pilates would be useful to exercise my legs.

Going by my experience it seems early for you to have such weakness. Have you seen a neurologist for specialist advice?

David.

[shannan]

I don't know enough of your story, like did you have radiation treatments, or was residual tumor left following surgery. But there is some similarity so I felt the need to comment. I also began with a tumor in my lumbar region that was operated on 18 years ago, where they were unable to remove all of it, this was followed with 6 weeks of radiation treatment. Approximately 12 years after surgery I began noticing small changes, beginning with my left calf being smaller than the right, I then began to notice a drop foot when I was tired. My radiation oncologist believed that this was likely due to nerve damage caused by the radiation I had received. As things slowly and gradually became worse the term "nerve necrosis" was used and also attributed to the radiation. Turns out that although the radiation has caused some damage most of my symptoms were due to the tumor growing again. Needless to say I have gone through another surgery and almost all of the tumor is gone now. I do have nerve damage, both from the tumor and radiation. However, I would have to say monitor your symptoms and rate of decrease in function. If you are concerned follow up with a doctor.

[mak164]

I forgot to say that whilst I had slight muscle wasting in my left calf following treatment, my right calf was fine. However, as my walking has deteriorated, so has wasting in my right calf progressed, until now it is far worse than the other.

I'm trying to remember the name of the syndrome that a neurosurgeon described to me when assessing my symptoms. Basically, it describes the situation when nerves are damaged, and other nerves overgrow to compensate. Eventually these nerves start to pack in due to the excessive demands placed on them, which accounts for the long term symptoms. D*mned it I can remember the name, which is probably due to other nerves suffering the same effect

David.

PS. Thanks to a previous post I found the name I was after: "Post-polio syndrome".

[drummer904]

David, i wonder if thats what causes hypersensitivity, other nerves overgrowing to compensate for the damaged ones..

[darren]

thanks to everybody for the replies, 2 days ago I saw a neurologist near Nashville, he examined me and said my sensory nerves seem to be just fine, I may have increasing mobility problems from progressive scar tissue buildup, arachnoiditis?, he mentioned a protective layer around the spinal column, he lost me after 5 min, lol, he scheduled me to have a EMG nerve test and today I had a MRI on my lumbar, he said neurosurgeons generally don't like to remove scar tissue b/c it could make things worse, but I'm excited about getting these tests, I'm happy as long there is a slim hope I can get better, again I appreciate all the advice, I'm so excited about this website, hope you all have a good week, ttys

Darren

[mak164]

Jul 12, 2008 21:35:01 GMT -6 drummer904 said:

David, i wonder if thats what causes hypersensitivity, other nerves overgrowing to compensate for the damaged ones..

Don't think so. For a couple of years after surgery/radiotherapy I used to have episodic shooting pains in the legs, but these gradually disappeared as I recovered. I never had noticeable hypersensitivity afterwards, and adjusted to the patchy numbness in my perianal area, legs and feet.

I remember thinking in my teens that the long-term effects of the surgery and radiotherapy would probably result in my early death from kidney failure by the time I was sixty. That didn't seem an excessive price to pay for the reprieve I had had. But how embarrassing - I'm still alive and kicking at 65 .

[marks]

I have a similiar story. Diagnosed in '73 , surgery and radiation after. Did extremely well until '92 and had further surgery. Over the last 6-8 years I have had progressive weakness, increased pain, and balance difficulty. No one seems to have a great answer. Steroids helped, but I really have no interest in these long term. It's nice to hear I'm not alone. Mark S

[kerry]

Hi Darren, I had my tumor removed 18 years ago & three years ago began having a noticeable increase in neuropathic pain and also problems with muscle control & coordination. An MRI revealed that my spinal cord where I had my surgery had atrophied over the years to the point where my spinal cord was called "ribbonoid". My tumor was an intramedullary ependymoma from C1 through C6. I had no radiation or chemo. An EMG revealed that my peripheral nervous system was just fine and the problem was with my central nervous system ie: my spinal cord. The EMG showed that I had anterior horn cell dysfunction. The neurologist told me that as we got older we lose cells in our central nervous system. Since the surgery & the tumor caused me to lose a lot of cells to begin with I was particularly susceptible to the spinal cord atrophy. So I think it's safe to say that as we get older we run our high risk of our symptoms getting worse. However, surgical techniques are a lot better than they were 18 years ago & if I had my tumor recently removed I would not necessarily assume that with advancing age come more problems. Oh, FYI I'm 53 and intend to be around for quite a while longer still. Kerry.