It can be very difficult to see Arachnoiditis in any test, sometimes but
not always. The problem is not of a structural nature, it has to do with
the Arachnoid membrane that covers the spine and brain which becomes
irritating to the nerves that are meant to be protected by it. The
nerves sort of stick to the membrane instead of sliding smoothly so the
pain is from nerve irritation as I understand it not a joint or bone
problem. My doctor has told me this is my main pain problem and the type
of pain and symptoms are very consistent with Arachnoiditis. I can never
get comfortable in a still position for more than a few minutes but do
better if I can keep moving round, this alone makes it very difficult to
rest or sleep. I've read that this problem may be caused in some people
by a reaction to spinal injections of which I've had several different
types, some as tests and some as pain treatment. I just don't know if
my pain started because of Arachnoiditis or there was another problem
like a disk bulging and this developed after several injections in the
spine. It began for me with pain in the thoracic part of the spine in an
area where even if it could be helped by an operation they could not work
on it without doing more damage. There is evidence in MRI that I have a
slight disk problem at T9 but the best thing is wait and perhaps it will
get better, I've been waiting 9 years!

I still have most of the pain in the mid back area but the rest of my
spine feels like it is burning with acid or something. The pain seems to
cycle being very high for 5-6 weeks or so and then I get a week of less
pain, this has been going on for a year or so. I don't fight the pain or
try to push past it when it's bad because I've never had any improvement
trying to win over it but when I feel a bit better I try to get as active
as I can. Pain meds can help but I feel it's best to use as little pain
meds as possible because the side effect of medication can lead to even
more problems plus I can't seem to do anything when I'm doped up with Oxy
or something. I use Vicodin most of the time and if I get a real bad
stretch that I can't tolerate I take Oxy for a few weeks, but when on Oxy
my whole world seems to stop and I can't get anything done.

I've heard of a new MRI machine that allows one to stand up, this may
show my disk problem a bit more clear and we can see if anything can be
done, there are only a few in the country and to use one I'll need to
travel so it's a tough thing to decide. I have pain from the mid back
joint problem plus the pain from Arachnoiditis that is down the whole
spine, if the joint problem were fixed I don't now if my pain would be
all that better. I can sort of tell the difference between the two pain
sources and they don't always hurt at the same time but I'm always in
pain and discomfort. I had a very tough case of Lyme disease which now
tests okay but that is also a nerve disease and could be the reason for
my Arachnoid pain problem. Chronic pain in any form is tough to live
with, there is really nothing I know of to cure Arachnoiditis so even if
you do have it there's not much to do about it, pray for relief and learn
how to live with it and get on as best as possible. I'm glad I can still
walk and live a somewhat normal live even though my whole life has
changed and I can't work anymore I still wait, perhaps one day it will
get better and till then this is just the way I am.

I'm so tired of all the ideas and treatments for pain that don't work,
wish I could have all the money back I spent on all the useless junk I've
tried, hard to know because something may have worked and would be worth
every cent. The best thing for me has been to accept the fact I have
chronic pain and live the best I can with it, enjoy each day for what it
is and don't let the pain rule my thoughts. If I can be up and active
for just a few short hours a day I rejoice in that and make the most of
the experience by planing an interesting activity for the times when I
feel a wee bit better. I've been in pain for about 10 years and it
really has been tough but I'm doing better now than I was just a few
years ago in the way I tolerate it. I was on so many drugs at one point
for anxiety and depression and going to therapy several times a week but
now only take drugs to help with the pain and my mind is much more clear.
I needed the other stuff at that time but now I feel I'm doing much
better in that regard.


Good Day to you, don't know if this has helped or not but it's my story
and the way I understand Arachnoiditis. Jeff Johnson


On Sat, 26 Jul 2003 20:19:44 -0000 "Kathie Ribblett"
<kathie@...> writes:
> How do I find out if the constant pain I have in my back & legs is
> Arachnoiditis? Are there any tests that a doctor can do to determine
>
> whether I suffer from Arachnoiditis and if so what are they? Do I
> need to go to a specific type of doctor to have any tests done if
> there are tests available and if so what type of doctor should I
> see?
>
> I have posted my medical history in this group but I will update my
>
> information.
>
> I have had 2 laminectomies at L4-L5, 1 fusion that was supposed to
> be
> done at L4-L5 but was "accidentally" done at L5-L6 (I was born with
>
> an extra vertebrae), 1 fusion with plates & pedicle screws at L4-L6,
>
> 1 fusion with Rays Cages at L4-L6 (plates & pedicle screws were
> removed during this surgery), 3 attempts at implanting a spinal cord
>
> stimulator, and 1 fusion with 2 plates & 8 pedicle screws at L4-S1
> (Rays Cages were left where they were placed in previous surgery). I
>
> have constant pain in my back (from my shoulder blades down) that
> rates a 6 on a good day, constant stabbing pain in my buttocks, and
>
> both shooting pain & tingling in both of my legs (pain to my foot in
>
> left leg & pain to my knee in right leg).
>
> If anyone in this group can advise me on how to determine if I too
> suffer from Arachnoiditis I would appreciate it very... much.
>
> Sincerely,
> Kathie
>
> kathie@...
>
>
>
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