Hi David,

My name is Kris and I have just been diagnosed through
an MRI with this,at S1 and S2. Now my Doctor has as a
last ditch effort has sent me to a Neurosurgeon. My
doctor has told me that nothing can be done but he
wants another opinion I would imagine. Now the
Surgeon wants me to have another Mylogram. Which,
when I did that before it was so pain full that it has
become very a tramic experience for me. Do you know
if doing this test is going to show anything more.
The way I look at it the dye would help see around
items in my back such as the spinal cord and vertebrae
because it will show a contrast with the dye but I
don't see how this will show anything more with the
spinal cord and my nerves. I would talk with my doctor
but he is out for 3 weeks for surgery himself. Also I
have pain going down both legs but alot in my back as
well. But it seem thankfully when my leg hurts it
isn't both at the same time. Is that normal for you as
well. Also what have you found that may help this
pain on a normal day to day basis. I have gone to see
an occupational therapist. But that really only went
over proper techniques for bending, sitting and
standing, and breathing. The gal admitted that no one
she works with has been up against this. So in what
you have experienced that anything helps. Some days
are manageable and some day all I can think about is
what it would be like to have just 3 hours of no pain.
It also is the strangest pain, like all feelings
rolled into one. Also I have what I call flare-ups
where when they start the pain gets to a level to
where I can't stand or bend, and breathe without
wanting to die it hurts so bad and they last for 4 to
5 days one can only handle that level of pain for only
so long.

I am sorry for taking up so much of your time but you
are the first person I have had to asks these
questions. I joined the COWFA web-site but have never
heard from them for 3 weeks.

Thanks so much for any information that you can
provide for me. I feel lost and not sure where to go
for answers.

And if there is anyone out there I can bounce
questions back and forth with let me know. This is
all so new and confusing. It seem not many people are
very knowledgeable in regards to this.


Sincerely,


Kris

--- linddj@... wrote:

> Hello,
>
> My name is David and I have had the Medtronic SCS
> since June 2004. It has
> been great for my leg pain which is present in both
> legs. I do struggle with
> back pain which although the sensation of the SCS is
> there it does not help.
> Along with Flexeril and Neurontin, I use the
> Duragesic Fentanyl patch. For
> breakthrough pain I have been using Actiq suckers.
>
> I'm 45 years old and so far have been successful at
> working through the good
> and bad days. I'm lucky to be in an office
> environment working for a bank
> that gives me that opportunity. I have missed 2 days
> of work in 2005.
>
> I have been with a very good Pain Mgmt Dr. since MRI
> diagnosing me with
> severe adhesive arachnoiditis from L2 to S2. He
> began his first visit with me by
> telling me he and his staff would be a team with me
> for life working to do
> whatever best worked to help me live with this pain.
> The stimulator trial worked
> for me and the permanent SCS has been even better.
> Everyone is different but
> the trial should indicate to you whether you would
> like to get the
> permanent version.
>
> Best of luck to you and I only hope it helps you as
> much as it has me.
>
>
> David in Atlanta, GA
>




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