Post to Tommi about arachnoiditis

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Hello All,

>

Here is our newest adventures, we meet with Dr.F, and he wants to take

's case. We will, see the pain Doc. there, and they are consindering

the possiablity of a Morphine pump, I know I have heard them mentioned

here, if you have one, does it help, and how long have you been on it. Also,

he wants to do some more tests, was curious about the hiccups, and

headaches, he wanted to know if they ruled out Arnold Chiari. Also, I asked

him about that Arachnachodist, and he said he was pretty sure that is what

she has. I thought that was kind of funny since I asked the other NSG, and

they said they didn't think so.

Dear Tommi,

I'm so glad you've found someone who will work to help with her

problems. We talked a little but about arachnoditis before - I know it can be

very difficult to get complete, accurate information about this. I'm also a

member of a spinal cord tumor support group (I had an L1-L2 ependymoma, a

tumor just beneath the spinal cord). Since many of us have long-term

problems from arachnoid adhesions, including tethering/tethered cord, I've

compiled a lot of the information I have under several posts to that group. I'm

going to go ahead and copy one of these posts here, especially because it

has within it several links to other websites.

I'm not going to change the wording of the text, so just keep in mind that I

wrote it to a group of people who all have had intradural surgery to remove a

spinal tumor. In general, though, most of the things I say in the post apply to

people who have arachnoid adhesions from any type of intradural surgery.

EXCERPT FROM POST ON ARACHNOIDITIS

Hello,

This is actually in regards to the issues brought up by Sharma in her post

" found the ROOT of my pain. " I've accumulated a certain amount of

information about arachnoiditis/arachnoid adhesions/arachnoid scar tissue,

so I wanted to make a separate post with the word " arachnoiditis " in the title.

That way, people can refer back to it by doing a keyword search. I will add to

this post over time as I have a chance.

Let me first define my terms. The arachnoid layer is a delicate, web-like tissue

lining the inside of the dura, surrounding the spinal cord and nerve roots. It

is

involved in regulating the normal flow of cerebrospinal fluid (CSF) and CSF

nutrients.

The arachnoid membrane is exquisitely reactive to any foreign substance,

including the presence of blood in the CSF. Normally, the intradural space is

a pristine, protected environment, which does not allow access to

inflammatory substances that may be present in the blood or other places in

the body. When these substances do show up in the CSF, the cells of the

arachnoid layer react with an exaggerated inflammatory cascade. During this

phase, the areas of the arachnoid layer that are inflamed become thickened

and " sticky " . The nerve roots may become stuck to each other, stuck to the

dura, or cause the spinal cord itself to be stuck to the dura. The natural

course

of the inflammation is that the sticky spots eventually are replaced by mature

scar tissue, which is permanent. This is similar, in the broadest possible

sense, to the way your body heals elsewhere. The sticky glue of the

inflammatory phase becomes replaced by more cement-like, tight scar tissue.

Areas that were temporarily stuck together while inflamed may now be

permanently stuck. The " stuck " spots are called " arachnoid adhesions. "

All of us who have had spinal surgery are likely to have arachnoid adhesions

or arachnoid scarring somewhere, even if only at a microscopic level. This is

simply because even the most careful intradural surgery will allow tiny

amounts of blood or other irritating substances to enter the cerebrospinal

fluid. Where those substances come in contact with the arachnoid layer, you

may have tiny, local spots of scarring/adhesions. For most of us, these

adhesions don't cause symptoms. They may or may not show up on MRI as

" nerve clumping " , but often the scarring/adhesions are not visible, because

the MRI resolution is not fine enough. So it's important to understand that the

terms " arachnoid scarring " and " arachnoid adhesions " represent a broad

spectrum. It's a description of what's found at the level of the cells

themselves,

and says nothing about whether the adhesions are adversely affecting the

nervous system or causing symptoms.

Now for " arachnoiditis. " Any " -itis " means inflammation - technically. But

surgeons are now often using the term " arachnoiditis " to mean both the actual

inflammation of the arachnoid layer, as well as the permanent adhesions/

scarring that forms as a result of this inflammation, long after the

inflammation

is spent. This can be extremely confusing, because different surgeons then

mean different things when they use the word. If they say you have

" arachnoiditis " , they may just be saying that you have arachnoid adhesions

and scarring.

Why does this matter? Because there are conditions in which there's an

ONGOING inflammation of the arachnoid layer - in which there's a

widespread, continued inflammatory reaction through many areas of the

spinal canal. This is a differnt entity than simple, local arachnoid adhesions.

It

tends to have somewhat different causes, to have a different prognosis, and

also is much easier to see on an MRI (because the reaction tends to be more

extensive). Radiologists and neurologists may be looking for these things

when they read your MRI for signs of " arachnoiditis. " However, plain old

arachnoid adhesions may be much more difficult to spot, even when they're

causing significant symptoms. In all this confusion, diagnosis can be

muddled, as radiologists/neurologists say there's " nothing there " .

I am going to give some of the websites I have found on arachnoiditis.

However, if you look at these sites, you have to keep a few things in mind.

These sites tend to be slanted towards a particular subset of people who have

widespread arachnoiditis resulting from one particular medical disaster: the

use (up until the 1980's or so) of very toxic, oil-based contrast dyes injected

into the CSF for myelograms to image the spine. Because this dye has been

shown to cause horrific arachnoiditis (meaning, an ongoing, widespread

inflammation), it has been replaced by safer water-based dyes - and also just

by avoiding myelograms altogether, with the invention of MRI. But there are

many patients now living with the consequences of repeated myelograms

done in the '60's and '70's. You will see their stories on these websites.

Those of us on the spinal cord tumor support site who have arachnoid

adhesions usually have them as a result of our surgeries, or as a result of

radiation to control the tumor growth. We're more likely to be in the category

of

having arachnoid adhesions/scar tissue, with no ongoing inflammation - but

that scar tissue can be bad enough.

Why would the arachnoid adhesions cause symptoms? What would those

symptoms be? That's a subject for another, very long post. But briefly, I'll say

that there are a few general mechanisms by which arachnoid adhesions can

cause serious damage to the nervous system. First, the thickened arachnoid

layer can basically strangle the nerves, preventing normal nutrient supply

from the blood and CSF. Symptoms of this are general symptoms of nerve

unhappiness/damage: pain, numbness, weakness, and many other things

depending on which particular nerves are affected. This happens more if the

adhesive scar tissue is quite extensive and surrounds the nerves. The

arachnoid adhesions can also interfere with the normal flow of CSF

throughout the spinal canal, which has in some cases been linked to

development of something called syringomyelia (a hollowing-out, or cyst,

within the spinal cord).

More common are the effects caused by the nerves and spinal cord being

stuck/tethered to each other or to the dura. The spinal nervous system is

meant to be extremely mobile - as you move, sit, bend over, run, twist, stretch,

the spinal cord and the nerves attached to it are constantly moving with

respect to the spinal canal. Just tucking your chin to your chest has been

shown on MRI to cause about a 2-cm upward movement of the normal spinal

cord. However, if the nerves are cemented stuck somewhere by arachnoid

scarring, this may limit the normal movement of either the nerve roots or the

spinal cord. When you move, your nerves/cord don't - they just get pulled,

sometimes quite badly. This can cause temporary or permanent symptoms of

nerve unhappiness - again, pain, numbness, tingling, weakness, muscle

cramping, bowel/bladder problems, muscle twitching, plus a whole slew of

other things depending on which specific nerve or area of the spinal cord is

affected. Permanent damage to the nerves and/or cord can sometimes result

if body movement is abrupt (like a fall, a car accident, etc), or if you put

yourself in a position that puts a prolonged stretch on the nerves or cord. The

effects of nerve tethering are my main problem, and you can see more of my

story under my previous post on " tethered cord. "

So with those notes, I'll pass on some websites.

The most comprehensive site I've found is www.aboutarachnoiditis.org, based

in New Zealand. This site has links to most of the other sites, info for

patients

and health professionals.

One neurosurgeon in the US who has written a great deal about arachnoiditis

is Dr. Burton in Minneapolis, and his general website is

www.burtonreport.com. This site is a real mixed bag (he writes about

whatever issue he feels strongly about, including politics), but I add it

because

his information on arachnoiditis is quite thorough, with many diagrams and

photos. You have to look for it under his general section on spinal disorders.

There's a physican in the UK, Dr. , who has arachnoiditis herself,

and has written quite extensively about it. You can find her articles at

www.arachnoiditis.net. I found parts of this extremely informative.

There's also a Yahoo support group on arachnoiditis, called " Circle of Friends

with Arachnoiditis " . The address is: http://www.cofwa.org.

I will keep adding notes to this post as more information comes my way. If you

have websites that you've found helpful, add them on! And if you have specific

questions about what I've said, it might be nice if you could post them here.

There are many of us corresponding individually about this, telling the same

stories, so I thought it might help if people could refer to each others'

questions and what has been answered before. Even though arachnoiditis is

a separate diagnosis, I think it's worth having this information available as

part

of the spinal tumor support group, because it's a common problem that in one

way or another may affect many of us after surgery.

Best wishes,

Kirsten

klr818@...

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January 2000 resection of L1, L2 myxopapillary ependymoma (age 29). Now

complicated by focal arachnoiditis and tethered spinal cord. E-mail:

klr818@...