for stymie82: regarding arachnoditis, etc from past post of konakid

[KonaKid]

stymie82 wrote

Konakid, I have adhesive arachnoiditis along with some epidural fibrosis. The condition is scar tissue binding the nerves and nerve roots. The only treatment is palliative care. I wish there was a magic surgery or treatment that could dissolve scar tissue. I've had to come to acceptance that my disease is incurable and painful. I'm thankful that I have a good, compassionate doc and that at long last I have a diagnosis, as I was going from specialist to specialist, to no avail. If there is hope in laser surgery, it would be news to the 2,000 merabers of my arachnoiditis support group.
I found that the worst of the daggers and ankle nerve pains and weird feelings can be relieved somewhat by neurontin, which is one of my cocktail of 7 meRAB that I need to have any function. Others swear by Lyrica-it's very individual as to what med works.


Konakid responRAB:

I have heard of a breakthrough in Germany that would help arachnoiditis/scar tissue suffers immensely. I can't find it on Net though. I've been on many of the nerve pain meRAB. Nothing works yet.

Do you lose the use of your legs and arms many times during day or week? The fallen asleep sensation that is worse than just yer arms or legs fallen asleep.

what type of surgery(ies) did you have?

do you, or anybody else reading this post, suffering the daggers through your feet sensation? It's terrible. It makes walking sometimes impossible. Then there is the drop foot deal. Oy.

aloha..

 

[stymie82]

Hi KonaKid, thanks I have heard of this surgery in Germany. There was also a trial in Portugal trying a similar type of scar tissue removal. I would have to see the long-term results before I would even consider any further surgery. That's the problem-there could be short-term relief, but scar tissue just loves to grow back bigger and better. A meraber of my support group had surgery in the US to have the scar tissue removed and is very sorry he did so.
In my case, I had a fall from a ladder from 15', the first part of me to hit the ground was my lurabar back across a raised concrete curb. I then had a laminectomy after having 3 ESI's to no avail. My surgeon at the time said that when he opened me up there was a huge, tangled, mass of blood vessels and scar tissue. Nevertheless, I had little pain for 6 1/2 years until I had increasing disability and back and leg pain 2 years ago.
Yes, the crazy pain signals in feet, ankles, and lower legs are vexing and are signs of permanent nerve damage. The neurontin, though, does a good job with the most wacky feelings. I don't have foot drop or damage to peroneal nerve, but can only stand or walk for about 5-6 minutes without resting. There's no way I can fight the lower back and leg pain, as it drives me to sit or lay down.
It's funny, but I can ride a stationary bike or road bike for about 40 minutes and even swim moderately for about the same time. If I try to swim too fast, the spike through the foot feeling comes right back. Crazy disease-never would have thought portions of my body could be both nurab and painful at the same time! Amazing how a person who could hardly run himself tired can't stand or walk for 5 minutes! Still coming to grips with all this.