arachnoiditis

[Guest guest]

Hi,

This is part of some that I have on Arachnoiditis.

Quote:

Arachnoiditis is chronic inflammation of the arachnoid layer of the meninges

which consists of trabeculae, a mesh of interwoven collagen fibrils resembling

tissue paper. These secrete spinal fluid, which circulates through the

cerebrospinal axis and is absorbed through the arachnoid villi in the brain. The

initial phase of inflammatory process involves influx of white blood cells in

response to an insult to the subarachnoid space, such as blood (trauma,

surgery), foreign substance (dye,etc) or infectious agent (eg. meningititis).

Causes

Spinal surgery (especially multiple)

Myelographic dyes (especially oil-based such as Myodil (Pantopaque)

Epidural steroid injections (eg. Depo-Medrol)

Other intraspinal drugs such as amphotericin B and methotrexate

Multiple lumbar punctures

Trauma

Infection eg. Meningitis

Subarachnoid haemorrhage

Spinal stenosis

Chronic disc prolapse

Arachnoiditis may be present in anyone who has had spinal injury, surgery or

introduction of foreign substances, but in most people it causes no problems.

The most common form is arachnoid adhesions. the second type is local

arachnoiditis, which generally results from local insult to the subarachnoid

space, such as injury or surgery. Again, it may not cause symptoms.

Cherie

At 11:24 PM 9/10/2002 +0000, klr818 wrote:

>When an irritating agent, such as your own blood, comes in

>contact with the arachnoid layer, it becomes inflamed - this is the

>stage that can be technically referred to as " arachnoiditis. "

Gee I wonder of a plastic tube, such as what I have from my Baclofen pump,

sticking into the dura at T8 is an irritating agent?

R

[Guest guest]

Hi Kathy,

Sorry to hear of your latest news.

At 12:51 AM 9/11/2002 -0400, Moulton wrote:

>The arachnoid cyst that Dougie has is in the arachnoid layer of his skull,

What are these cysts composed of? If it is in the arachnoid layer (the

fluid), then it is not attached to anything and can be safely and easily

removed, right?

Hang in there, things WILL get better.

Rick

[Guest guest]

At 11:24 PM 9/10/2002 +0000, klr818 wrote:

> >When an irritating agent, such as your own blood, comes in

contact with the arachnoid layer, it becomes inflamed - this is the

stage that can be technically referred to as " arachnoiditis. "

Rick wrote;

> Gee I wonder of a plastic tube, such as what I have from my

Baclofen pump, sticking into the dura at T8 is an irritating agent?

> R

Dear Rick,

I've often thought about the the issue of permament intrathecal

lines, such as with baclofen pumps and morphine pumps, and

whether this has a risk of causing arachnoiditis/arachnoid

adhesions. A lot of people with arachnoiditis have these pumps

also, since that condition can cause spasticity too.

The information Cherie posted on arachnoiditis was really

excellent. In terms of the pump and its plastic tube, I haven't yet

come across anything that talks about this directly. If there were

an additional risk, my understanding of the way arachnoiditis is

triggered is that the irritating agent is less likely to be the plastic

tube itself than whatever amounts of blood enter the CSF during

the insertion of the tube - or, a very remote possiblity, if the tube

accidentally pulls out of the dura, leaving a small hole that could

let in blood or fluid from the outside tissues.

If the risk comes from the small chance of bleeding on insertion,

the closest comparison I can draw is to other medical

procedures in which a needle is introduced into the spine:

lumbar punctures, myelograms (newer ones, without the old

toxic dyes), spinal anesthesia, and epidurals that " miss " their

target and accidentally puncture the dura. All these procedures

are usually quite safe, but all of them have also been

documented as having caused rare cases of arachnoiditis. In

those cases, the feeling is that the arachnoiditis is a result of the

needle having accidentally nicked a tiny blood vessel, spilling

small amounts of free blood into the CSF.

There's another category of toxic/chemical irritants that are

known to trigger arachnoiditis when these substances are

injected into the spine. I have never heard of any component of

the Baclofen pump mixture causing arachnoiditis, but I should

acknowledge for the sake of completeness that this has

happened with other medical substances in some unexpected

ways. The most obvious is the old oil-based myeolograms,

which I think Cherie mentioned too. These really stand in a

class by themselves - if you see what the dyes were like, you just

can't believe anyone ever thought of putting them inside the

spine in the first place. They really are oil-based - thick, gooey,

and not well absorbed after being injected, which meant the dye

would stick around for years. Thankfully, they've been replaced

by water-soluble dyes which are absorbed quickly, and are felt

by radiologists not to carry a significant risk of arachnoiditis.

However, the risk is never zero, even if the only risk is of spilling

blood during the injection.

In terms of substances that are still injected in the spine, the

most surprising findings to me are the well-substantiated

reports that steroids delivered to the CSF can trigger

arachnoiditis. This seemed completely backwards, because

steroids are usually given to quell inflammation, and in fact

steroid injections into the CSF were often tried in the past as a

treatment for arachnoiditis. The mystery was solved when

researchers found that the irritating agent was actually a

preservative used in the steroid solution, not the steroids

themselves. But this does serve as kind of a general alert about

just how finicky the arachnoid layer is.

People are much more careful now about investigating this risk

before they start using new medicines inside the CSF, with

careful animal testing. A lot of people have Baclofen pumps - I

would hope that if this mixture were capable of causing a

significant chemical irritation in the arachnoid layer, it would

have been picked up by now. So I'm definitely not trying to worry

you about the Baclofen - but I wanted to lay out for you what

areas people would investigate, if they wanted to make sure that

a Baclofen pump was not going to cause later problems with

arachnoid adhesions. I suspect that much of this has in fact

been done, as part of testing for FDA approval to use this

medication within the CSF.

Take care,

Kirsten

[Guest guest]

We were told that our daughter's arachnoiditis came from the lumbar

drain that she had post op from her third decompression surgery for

ACM/SM.

Faith

________________________

& Faith Webb

Re: arachnoiditis

At 11:24 PM 9/10/2002 +0000, klr818 wrote:

> >When an irritating agent, such as your own blood, comes in

contact with the arachnoid layer, it becomes inflamed - this is the

stage that can be technically referred to as " arachnoiditis. "

Rick wrote;

> Gee I wonder of a plastic tube, such as what I have from my

Baclofen pump, sticking into the dura at T8 is an irritating agent?

> R

Dear Rick,

I've often thought about the the issue of permament intrathecal

lines, such as with baclofen pumps and morphine pumps, and

whether this has a risk of causing arachnoiditis/arachnoid

adhesions. A lot of people with arachnoiditis have these pumps

also, since that condition can cause spasticity too.

The information Cherie posted on arachnoiditis was really

excellent. In terms of the pump and its plastic tube, I haven't yet

come across anything that talks about this directly. If there were

an additional risk, my understanding of the way arachnoiditis is

triggered is that the irritating agent is less likely to be the plastic

tube itself than whatever amounts of blood enter the CSF during

the insertion of the tube - or, a very remote possiblity, if the tube

accidentally pulls out of the dura, leaving a small hole that could

let in blood or fluid from the outside tissues.

If the risk comes from the small chance of bleeding on insertion,

the closest comparison I can draw is to other medical

procedures in which a needle is introduced into the spine:

lumbar punctures, myelograms (newer ones, without the old

toxic dyes), spinal anesthesia, and epidurals that " miss " their

target and accidentally puncture the dura. All these procedures

are usually quite safe, but all of them have also been

documented as having caused rare cases of arachnoiditis. In

those cases, the feeling is that the arachnoiditis is a result of the

needle having accidentally nicked a tiny blood vessel, spilling

small amounts of free blood into the CSF.

There's another category of toxic/chemical irritants that are

known to trigger arachnoiditis when these substances are

injected into the spine. I have never heard of any component of

the Baclofen pump mixture causing arachnoiditis, but I should

acknowledge for the sake of completeness that this has

happened with other medical substances in some unexpected

ways. The most obvious is the old oil-based myeolograms,

which I think Cherie mentioned too. These really stand in a

class by themselves - if you see what the dyes were like, you just

can't believe anyone ever thought of putting them inside the

spine in the first place. They really are oil-based - thick, gooey,

and not well absorbed after being injected, which meant the dye

would stick around for years. Thankfully, they've been replaced

by water-soluble dyes which are absorbed quickly, and are felt

by radiologists not to carry a significant risk of arachnoiditis.

However, the risk is never zero, even if the only risk is of spilling

blood during the injection.

In terms of substances that are still injected in the spine, the

most surprising findings to me are the well-substantiated

reports that steroids delivered to the CSF can trigger

arachnoiditis. This seemed completely backwards, because

steroids are usually given to quell inflammation, and in fact

steroid injections into the CSF were often tried in the past as a

treatment for arachnoiditis. The mystery was solved when

researchers found that the irritating agent was actually a

preservative used in the steroid solution, not the steroids

themselves. But this does serve as kind of a general alert about

just how finicky the arachnoid layer is.

People are much more careful now about investigating this risk

before they start using new medicines inside the CSF, with

careful animal testing. A lot of people have Baclofen pumps - I

would hope that if this mixture were capable of causing a

significant chemical irritation in the arachnoid layer, it would

have been picked up by now. So I'm definitely not trying to worry

you about the Baclofen - but I wanted to lay out for you what

areas people would investigate, if they wanted to make sure that

a Baclofen pump was not going to cause later problems with

arachnoid adhesions. I suspect that much of this has in fact

been done, as part of testing for FDA approval to use this

medication within the CSF.

Take care,

Kirsten

[Guest guest]

Well, JR here is my story, when my son had his tsc surgery, the dr. found a

clump of tangled nerves, that did show up on his mri, the dr did not know it

was tangled nerves untill her operated, he said he never say anything like

this before, and gave me the term arachnoidits. why do u ask? Janice...

[Guest guest]

,Maybe i should of been clearer. Yes i do have articles on

arachnoiditis, but i also need real life situation information. No article

states the causes, or what a person goes through. So yes i do want

information on arachnoiditis, but also i have articles on the subject...hope

this helps you...Janice

[Guest guest]

I'm kind of getting in on the tail end(so to speak) of this topic--- but is

arachnoiditis something that would show up on an MRI? Or would you have to

have a cyst for it to show up? If not--- does it cause severe pain? I

promise that I'll go back and read all the posts-- but after being in the

hosp. with for a week, there are quite a few to go through. Thanks

for being patient with me!

JR

[Guest guest]

Dear JR,

Just a few quick notes about your questions. Arachnoiditis/arachnoid

adhesions may or may not show up on an MRI. Active inflammation along the

nerve roots will usually " enhance " (light up) on MRI with contrast. Adhesions

that are no longer inflamed may or may not be visible - this depends a lot on

how extensive the scar tissue is, and how high-resolution the MRI is. Usually,

if there's arachnoiditis down around the cauda equina nerve roots, this will

show up to some degree as clumping of the nerve roots. But it's very

important for radiologists and all the other doctors involved to understand that

the extent of scarring may have little correlation with the amount of symptoms.

The degree of symptoms has more to do with the mechanical effects of the

scarring on a mobile spinal cord and spinal nerves - even a little bit of

scarring can cause real problems, if it occurs in a bad place.

MRI's of the spine are really hard to read, and the conclusions taken from

them depend a lot on the neuroradiologist knowing spefically where to look

and what to look for. I had many, many MRI's read as essentially normal (with

almost no scarring) simply because the neuroradiologists weren't looking for

the scarring in the right place. While most of my nerve roots did look nice and

clean, there was one small patch around L3 that was actually densely scarred

into the dura. This was just beneath the site of my previous operation for a

tumor, so I don't think anyone expected to find adhesions there. This spot of

scarring was there all along (you can see it on all my old MRI's once you

know where to look), but it took 6 months and many MRI's for anyone to finally

pick up on it. Because the nerve roots were touching the dura (and in fact

were scarred tightly to the dura), they looked a lot like the way nerve roots

normally do when they lie flat against the back of the spinal canal.

The bottom line is, an MRI, as wonderful as it is, has very definite

limitations.

One of the biggest limitations is the level of experience (and problem-solving

intelligence) of the person reading it. Much of the literature on arachnoiditis

is

based on the cases of widespread inflammation and scarring caused by toxic

myelogram dyes - and these people have very obvious findings on MRI. As a

result, many radiologists do not realize how subtle the evidence of arachnoid

adhesions may be in other cases.

You also asked about pain. Arachnoiditis/arachnoid adhesions can cause a

whole range of pain symptoms. Some people may have no pain at all, and

not even be aware that they have these adhesions. Others have pain that

varies with body positions, related to the tethering effect of the scarring on

the

nerves and cord (this is me). A large group has pain that is present most of

the time, and for some of these people the pain can be excruciating. They

often require round-the-clock pain medication, including things like morphine

pumps or baclofen pumps (if there's also spasticity). Some people with very

severe, unremitting pain have opted for surgically implanted spinal cord

stimulators, which act as kind of a " pacemaker " to override the pain signals

coming from the spine. Jerry recently had one of these placed to treat a

spinal disorder, although I don't know if his underlying problem is

arachnoiditis or something else. These are still in the early stages of

development, so there's not that much long-term follow-up to know how well

they work.

I don't think anyone really knows what the " typical " course is for someone with

arachnoiditis, because it depends completely on how the scarring or

inflammation acts in that particular spine. If the arachnoid adhesions end up

tethering the cord, either by directly scarring the cord to the dura or by

scarring the lumbosacral nerve roots to the dura (the nerve roots then act as

a " tether " ), the symptoms may be indistinguishable from any other cause of

tethered cord syndrome. Similarly, arachnoid adhesions are a common

cause of recurrent tethering in people who have been operated on for tetherd

cord from many other causes. There's a great deal of overlap in all these

diagnoses. At the same time, a single diagnostic term may include very

different real-life pictures. Two people who both have been diagnosed with

arachnoiditis may have adhesions in such different places that they have

completely different symptoms and clinical courses.

I'll just send this off for now. How is doing? Is she out of the

hospital?

Take care,

Kirsten

>

>

> I'm kind of getting in on the tail end(so to speak) of this topic--- but is

> arachnoiditis something that would show up on an MRI? Or would you

have to

> have a cyst for it to show up? If not--- does it cause severe pain? I

> promise that I'll go back and read all the posts-- but after being in the

> hosp. with for a week, there are quite a few to go through. Thanks

> for being patient with me!

>

> JR

[Guest guest]

> We were told that our daughter's arachnoiditis came from the lumbar

> drain that she had post op from her third decompression surgery for

> ACM/SM.

>

> Faith

Dear Faith,

That makes a lot of sense to me. There are some neurosurgeons in Germany

who have done some research that relates to this. They have looked

specifically at arachnoid adhesions causing tethering of the cord, and how

this can eventually lead to formation of a syrinx (cyst-like hollowing-out of

the

spinal cord - just in case anyone else is reading this who hasn't run into the

term before). In the past, people used to put drains into these cysts, thinking

that they were caused by a build-up of pressure within the cord, and the only

way to treat them was to let some fo the fluid drain off. Sometimes, as part of

this procedure, parts of the dura were left open.

These German researchers found that in most cases, the underlying cause of

the syrinx was the tension on the spinal cord from the tethering effect of the

adhesions, and that the only way to prevent the syrinx from re-forming was to

release the adhesions. Often, when this was done, the syrinx would collapse

on its own. But more significantly, what they also found was that it was

imperative that no connection be left in place between the CSF and the

outside world. If there were any opening in the dura, as often had been true

when people used the older draining procedures, there was the potential for

blood and other pro-inflammatory tissue factors to leak through into the CSF.

If that happened, this could trigger new adhesions to form, with re-tethering

(and in this case, often a recurrence of the syrinx). I don't know what the

actual risk is of that happening, or what kind of drains they were talking

about.

but the general concept seems to make a lot of sense. I also don't know how

these findings would relate to the risk of intrathecal pumps for medication

(like

Rick's baclofen pump).

In my case, my arachnoid adhesions resulted from an accidental opening in

the dura - after I had surgery for a spinal tumor, the sutures holding the dura

came apart, without anyone realising I had more than just a regular pinhole

CSF leak. All my adhesions are in the small area where the dura opened.

The likely mechanism is that the nerve roots in this areas were exposed to

oozing blood and inflammatory fluid from the ouside tissues. This is

particularly interesting because the areas that were actually manipulated

during the tumor removal itself were very clean, with almost no adhesions.

The key factor seems to have been ongoing exposure to an inflammatory

trigger, as well as to the nerve roots being stuck in one place (because they

got sucked into the opening in the dura).

Okay, I have to go rest!

Thanks for your note.

Sincerely,

Kirsten

[Guest guest]

Wow, thanks you guys for the replies!

is out of the hospital, and the pain is some better. Now she is

back to her regular 2-3 Darvocette a day plus Soma at night. I think the

massive pain meds and rest did her a lot of good-- but the orthos finally

said they really didn't know why she was in so much pain. The doc said that

her last stress fracture was healing nicely, so that shouldn't be causing

pain. (I just love that, don't you?? The kid has a broken vertebrae and he

passes it off as no big deal --Would probably be different if it was in HIS

back!) Anyway--- I digress..... Two things have bothered me about this

pain--- one is that it is more severe than normal-- and the other is that it

is at a particular place at the bottom of her scar (about L-5) It is very

sensitive to pressure. So after reading a little about the arachnoiditis,

it sounded like that may be a possibility. Her latest MRI (in the hosp) was

done without contrast, and I wondered at the time if that was a waste of

time-- but we were dealing with Orthos-- not Neuros.

I guess I just want a diagnosis because at least that would give us a place

to start. So if it turns out that it is an inflammatory process-- is it

treated with regular anti-inflammatory like ibuprofen??

Again, I appreciate you all so much!

JR

[Guest guest]

Hi JR,

I just re-read your posts about going back through the spring. it

sounds like things have been pretty rough for her... I really hope her pain

does get better. It can be so hard to figure out what the cause is. I imagine

that's especially hard with , because she has so many orthopedic

problems from spine instability.

I'll pass on some more info on arachnoiditis/arachnoid adhesions, since this is

what I have myself... definitely not to say I think this is what's causing

's pain, I'd be way over my head there. But I understand how hard it

can be to get information on some of these things.

I think Kathy explained very well some of the confusion that had come up

recently about the terms " arachnoiditis " and " arachnoid cysts. " I'll just say

basically the same thing here, so I don't accidentally confuse people more.

The arachnoid membrane is a thin, spider-web like layer of tissue (hence the

word " arachnoid " - as in spider) that lines the entire nervous system, brain

and spinal cord. It lies just underneath the dura, and it's involved in the

regulation of CSF flow throughout the nervous system. Arachnoid cysts can

show up in either the brain or spine - often as an isolated mass. My posts on

arachnoiditis and arachnoid adhesions are about a separate problem, in

which inflammation of the arachnoid layer can lead to long-term adhesive

scarring. This was initially brought up in regards to the problems of " tangled

nerves " in the cauda equina - something I have, and many other people do as

well, and which is related to arachnoid adhesions that cause the nerve roots

to get permanently stuck together or stuck to the sides of the dura.

The term " arachnoiditis " should, in theory, strictly be reserved for the period

of

time in which the arachnoid layer is inflamed - after all, any word that ends in

" -itis " by definition implies an inflammation. When people talk about having

arachnoiditis, you would therefore think that the main problem is an ongoing

inflammation. However, most of the pain and dysfunction related to this

diagnosis is actually felt to be due to the mechanical effects of the scar

tissue

itself. This scar tissue - the arachnoid adhesions - is the end result of the

inflammation, and may not have any inflammation left in it to speak of. But the

term " arachnoiditis " has ended up being used by surgeons to describe not

only the early, inflammatory phase, but also to describe the condition of

having scar tissue that is the result of a previous, long-gone inflammatory

response to surgery, infection or any of the other causes. This caused me no

end of confusion in the beginning. That's why I sometimes combine the terms

as arachnoiditis/arachnoid adhesions.

The arachnoid layer is extremely irritable and prone to scarring. There are

several other tissues in the body that behave in very much the same way, and

all of them are prone to developing troublesome scarring in response to

spilled blood (usually after surgery) or infection. The delicate lining of the

abdominal cavity and internal organs is subject to developing adhesive

scarring after surgery - and doctors are much more familiar with this problem,

because abdominal surgery is so common. The general point is that not all

scar tissue is created equal - some tissues of the body are notorious for being

prone to developing a certain kind of sticky scar tissue that is difficult to

control. The arachnoid mebrane is one of these unlucky areas of the body.

Once the scarring matures, the adhesions are tough and generally

permanent. They may be able to be stretched, but the only real way to

release them is with more surgery - and surgery tends to release more blood,

which causes more inflammation and scarring. A vicious cycle - which is why

neurosurgeons are very reluctant to go back in. Once the diagnosis of

arachnoiditis/arachnoid adhesion is established, surgeons will often

recommend against any further operations.

You asked about antiinflammatories to treat arachnoiditis. There are mixed

feelings about this. As far as I know, the antiinflammatories won't do anything

to the scar tissue that has already formed. For most people with arachnoid

adhesions, the bulk of the actual inflammation is long past. I have tried many

courses of antiinflammatories myself. For very complicated reasons, each

time it ended up exacerbating the problem in the long run. I got a lot more

tethering-type nerve injuries whenever I was consistently taking ibuprofen

(advil/motrin) or vioxx (I tried them all, each time with the same result).

That's

a very complicated topic, more than I can write about right now, but the

association repeated itself so many times that I feel, for the sake of full

disclosure, I have to mention it. I can explain this more later, but right now

I

need to go... I've been at the computer too long.

Good luck with . If you ever need more information on this, I'm

always happy to pass on what I've found - but it's all based on what I've read

about for my own condition, and may not fit what's going on with . I

really hope her doctors are able to shed some light on what causing her pain,

so they can find the best way to treat it.

Best wishes,

Kirsten

[Guest guest]

Kirsten,

Thanks again for the enlightening letter. Since blood is one of the things

that can cause the condition, it kind of makes sense that anti-inflamatories

might make it worse since they heighten the chances of bleeding. That was

just the simple connection I made-- not necessarily the real reason.

So-- I take it that there really is no treatment that is effective for this?

I know that this may not be the problem-- but I will present the concept to

our GP and see what he says. He's the one that ends up getting things done

for us most of the time.

Thanks again for your input!

JR

[Guest guest]

> Since blood is one of the things that can cause the condition, it kind of

makes sense that anti-inflamatories might make it worse since they heighten

the chances of bleeding. That was just the simple connection I made-- not

necessarily the real reason.

Dear JR,

Thanks for your note. I totally agree. That's what my main thought is about

antiinflammatories used when one has arachnoiditis - and for that matter, any

other medication that affects platelets or clotting factors, which might make

bleeding more likely. There's no way to know for sure what's happening

inside anyone's spine. However, one possibility that's in the back of my head

is that there could be little tiny microtraumas in the microvasculature that

supports the nerve roots and/or spinal cord - these might come about during

everyday movements, because the tight bands of scar tissue cause unnatural

amounts of tension on some pretty fragile neural tissues. If platelets and

clotting factors work normally, these little tears may heal themselves right

away, and not lead to any noticeable problems. However, if the platelets don't

stick together very well (which is what happens when you take aspirin or any

other antiinflammatories), it's conceivable that these microtears take longer to

seal up, and more blood is allowed to escape than otherwise would. If there

is then bleeding into the CSF, this might set off a whole new round of

inflammation.

This is really just my own hypothesis to try to explain why I've had so many

dramatic worsenings while taking antiinflammatories - I wouldn't want to say

what medications other people should be taking, since I know these are

helpful medications for a lot of people. I think it's important for all these

different outcomes to be out there where other people can read about them, in

case anyone else notices something similar happening with them. Because

of all the uncertainty around this issue, I ended up trying courses of

antiinflammatories probably about 5-6 separate times - each time with the

same result. There's always the chance these things are due to coincidence,

but for myself I always feel it's better to be safe than sorry, especially if

there's

a reasonable explanation for why there might be a problem.

> So-- I take it that there really is no treatment that is effective for this?

It sort of depends on what's meant by treatment. There's definitely no known

cure. However, there's a lot that can be done to slow the rate at which

problems develop, and to help with the symptoms. The arachnoiditis

websites have a lot of information on this. For myself, there are a few central

concepts. Avoiding any more entry of foreign substances into the CSF (as

from spinal surgery, but also LP's, myelograms, epidural injections - even

when people aim outside the CSF, the substances often find their way in).

Becoming vigilant about safety - as sudden movements or falls can cause an

acute nerve injury (or injury to the cord, if it's tethered by the adhesions).

Physical therapy aimed at GENTLY stretching the arachnoid adhesions, done

persistently over time, under the watchful eye of a physical therapist who

knows how easy it is to damage the nerves/cord with overzealous stretching.

Physical therapy in the pool has been especially beneficial, since the

buoyancy of the water supports your weight while allowing a gentle stretch on

the adhesions.

> I know that this may not be the problem-- but I will present the concept to

our

GP and see what he says. He's the one that ends up getting things done for

us most of the time.

This sounds like a good idea. My primary care doctor has been absolutely

stellar in learning about this, and has helped me a great deal simply by being

willing to accept that this illness exists, even though he'd never heard about

it

before. Unfortunately, the level of understanding about arachnoiditis/

arachnoid adhesions is still pretty low, even among doctors who probably run

into these patients all the time - like neurosurgeons, orthopedists,

neurologists and pain anesthesiologists. There are a lot of

misunderstandings out there, especailly about the breadth of symptoms that

can be caused by arachnoid adhesions, and how reliable current tests are in

diagnosing the problem.

Here are two general websites about arachnoiditis - they're most helpful for

their extensive links to other sites, with a lot of basic papers describing the

causes, symptoms and progression of arachnoiditis. None of this information

is perfect, but if you're looking for some more information to help you, this

can

be a good place to start.

www.aboutarachnoiditis.org

www.arachnoiditis.net

As you see, the only word that gets you anywhere in searching the web or the

medical literature is " arachnoiditis " - that's why I've given up and started

using

this term too, even though all I really have is old scar tissue (arachnoid

adhesions) without any " -itis. "

Good luck,

Kirsten

[Guest guest]

Hi R this is very interesting, do u know what would be considered a trauma?

Janice....

[Guest guest]

At 08:34 PM 1/5/2003 -0500, wrote:

>If anyone is interested I found a very informative site on

>arachnoiditis. It isn't one I have seen before. It is explained by

>another .

Send it, I will put the URL on the TSC website.

Rick

[Guest guest]

At 08:34 PM 1/5/2003 -0500, wrote:

>If anyone is interested I found a very informative site on

>arachnoiditis. It isn't one I have seen before. It is explained by

>another .

Send it, I will put the URL on the TSC website.

Rick

[Guest guest]

At 08:34 PM 1/5/2003 -0500, wrote:

>If anyone is interested I found a very informative site on

>arachnoiditis. It isn't one I have seen before. It is explained by

>another .

Send it, I will put the URL on the TSC website.

Rick

[Guest guest]

Please Post it to the List. I am sure there are many people who would be

interested in it.

Me

Nebraska, USA

mymocha@...

> If anyone is interested I found a very informative site on arachnoiditis.

It isn't one I have seen before. It is explained by another .

[Guest guest]

Please Post it to the List. I am sure there are many people who would be

interested in it.

Me

Nebraska, USA

mymocha@...

> If anyone is interested I found a very informative site on arachnoiditis.

It isn't one I have seen before. It is explained by another .

[Guest guest]

Please Post it to the List. I am sure there are many people who would be

interested in it.

Me

Nebraska, USA

mymocha@...

> If anyone is interested I found a very informative site on arachnoiditis.

It isn't one I have seen before. It is explained by another .

[Guest guest]

Have you had a chance to Update the Site lately?

Me

Nebraska, USA

mymocha@...

> Send it, I will put the URL on the TSC website.

[Guest guest]

Have you had a chance to Update the Site lately?

Me

Nebraska, USA

mymocha@...

> Send it, I will put the URL on the TSC website.

[Guest guest]

At 05:57 AM 1/6/2003 +0000, mymocka wrote:

>Have you had a chance to Update the Site lately?

as far as I know, I have everything there that I have.

R

>Me

>Nebraska, USA

>mymocha@...

>

> > Send it, I will put the URL on the TSC website.

>

>

>

>Not Medical Advice. We Are Not Doctors.

>Need help with the list? Email

>kathy@...,michelle@...,

>rick@...

>

>

[Guest guest]

At 05:57 AM 1/6/2003 +0000, mymocka wrote:

>Have you had a chance to Update the Site lately?

as far as I know, I have everything there that I have.

R

>Me

>Nebraska, USA

>mymocha@...

>

> > Send it, I will put the URL on the TSC website.

>

>

>

>Not Medical Advice. We Are Not Doctors.

>Need help with the list? Email

>kathy@...,michelle@...,

>rick@...

>

>

[Guest guest]

At 05:57 AM 1/6/2003 +0000, mymocka wrote:

>Have you had a chance to Update the Site lately?

as far as I know, I have everything there that I have.

R

>Me

>Nebraska, USA

>mymocha@...

>

> > Send it, I will put the URL on the TSC website.

>

>

>

>Not Medical Advice. We Are Not Doctors.

>Need help with the list? Email

>kathy@...,michelle@...,

>rick@...

>

>