I went ahead and posted this at bt since this place is like a tomb but I will post it here too just in case someone with a spinal disorder is still here.
Hi everyone,
I am not sure if anyone remembers me but I was here in june getting ready to have my fusion and had such high hopes for the outcome and instead ended up much worse off then I ever was and this condition seems to be a lonely one.
My NS that caused this condition recommended a pain pump to my Pm and that was almost 3 weeks ago and not a word yet from pm....I am so frustrated with all the extra pain and numbness (can't feel anything from my waist to the tops of my thighs) and the random shooting pains that nearly double me over, plus bowel problems as well
Thanks for any advice.

Junie,

I just tried to post something and it went off into cyberspace somewhere..

Anyway....some sites for you...I do not think I understand your post...Do you need information?

http://www.emedicine.com/RADIO/topic49.htm

http://www.arachnoiditis.info/

http://www.arachnoiditis.com/


Clinical Trials: http://www.clinicaltrials.gov/search/term=Arachnoiditis
What is Arachnoiditis?
Arachnoiditis describes a pain disorder caused by the inflammation of the arachnoid, one of the membranes that surround and protect the nerves of the spinal cord. The arachnoid can become inflamed because of an irritation from chemicals, infection from bacteria or viruses, as the result of direct injury to the spine, chronic compression of spinal nerves, or complications from spinal surgery or other invasive spinal procedures. Inflammation can sometimes lead to the formation of scar tissue and adhesions, which cause the spinal nerves to “stick” together. If arachnoiditis begins to interfere with the function of one or more of these nerves, it can cause a number of symptoms, including numbness, tingling, and a characteristic stinging and burning pain in the lower back or legs. Some people with arachnoiditis will have debilitating muscle cramps, twitches, or spasms. It may also affect bladder, bowel, and sexual function. In severe cases, arachnoiditis may cause paralysis of the lower limbs.

Is there any treatment?


Arachnoiditis remains a difficult condition to treat, and long-term outcomes are unpredictable. Most treatments for arachnoiditis are focused on pain relief and the improvement of symptoms that impair daily function. A regimen of pain management, physiotheraphy, exercise, and psychotheraphy is often recommended. Surgical intervention is controversial since the outcomes are generally poor and provide only short-term relief. Clinical trials of steroid injections and electrical stimulation are needed to determine the efficacy of these treatments.

What is the prognosis?


Arachnoiditis appears to be a disorder that causes chronic pain and neurological deficits and does not improve significantly with treatment. Surgery may only provide temporary relief. Aging and pre-existing spinal disorders can make an accurate prognosis problematic. The outlook for someone with arachnoiditis is complicated by the fact that the disorder has no predictable pattern or severity of symptoms.

What research is being done?


Within the NINDS research programs, arachnoiditis is addressed primarily through studies associated with pain research. NINDS vigorously pursues a research program seeking new treatments for pain and nerve damage with the ultimate goal of reversing debilitating conditions such as arachnoiditis.

Select this link to view a list of studies currently seeking patients.

Organizations

American Chronic Pain Association (ACPA)
P.O. Box 850
Rocklin, CA 95677-0850
ACPA@pacbell.net
http://www.theacpa.org
Tel: 916-632-0922 800-533-3231
Fax: 916-632-3208

National Foundation for the Treatment of Pain
P.O. Box 70045
Houston, TX 77270
NFTPain@cwo.com
http://www.paincare.org
Tel: 713-862-9332
Fax: 713-862-9346


American Pain Foundation
201 North Charles Street
Suite 710
Baltimore, MD 21201-4111
info@painfoundation.org
http://www.painfoundation.org
Tel: 888-615-PAIN (7246)
Fax: 410-385-1832

Prepared by:
Office of Communications and Public Liaison
National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892

Arachnoiditis
Edgar G. Dawson, M.D.

Ms. Mary Claire Walsh
SpineUniverse Staff Writer


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Arachnoiditis is a debilitating condition characterized by severe stinging and burning pain and neurologic problems. It is caused by an inflammation of the arachnoid lining - one of the 3 linings that surround the brain and spinal cord. This inflammation causes constant irritation, scarring, and binding of nerve roots and blood vessels.

The predominant symptom of arachnoiditis is chronic and persistent pain in the lower back, lower limbs or, in severe cases, throughout the entire body. Other symptoms may include:

- Tingling, numbness, or weakness in the legs

- Bizarre sensations such as insects crawling on the skin or water trickling down the leg

- Severe shooting pain (which some liken to an electric shock sensation)

- Muscle cramps, spasms, and uncontrollable twitching

- Bladder, bowel, and/or sexual dysfunction

If the disease progresses, symptoms may become more severe or even permanent. This disorder can be very debilitating, as the pain is constant and intractable. Most people with arachnoiditis are unable to work and have significant disability.

Causes of Arachnoiditis
There are 3 main causes of arachnoiditis:

1. Trauma/surgery-induced
Arachnoiditis has long been recognized as a rare complication of spinal surgery (particularly after multiple or complex surgeries) or trauma to the spine. Other similar causes include multiple lumbar punctures (especially if there is a "bloody tap" with bleeding into the spinal fluid), advanced spinal stenosis, or chronic degenerative disc disease.

2. Chemically-induced
In recent years, myelograms have come under scrutiny as being a possible cause of this condition. A myelogram is a diagnostic test in which a radiographic contrast media (dye) is injected into the area surrounding the spinal cord and nerves. This dye is then visible on x-rays, CT, or MRI scans and used by physicians to diagnose spinal conditions. There is now a concern that exposure (especially repeated exposure) to some of the dyes used in myelograms may cause arachnoiditis. Similarly, there is concern that the preservatives found in epidural steroid injections may cause arachnoiditis, especially if the medication accidentally enters the cerebral spinal fluid.

3. Infection-induced
Arachnoiditis can also be caused by certain infections that affect the spine such as viral and fungal meningitis or tuberculosis.

Treatment
There is no cure for arachnoiditis. Treatment options are geared toward pain relief and are similar to treatments for other chronic pain conditions. Some examples include the following:

- Pain medications such as NSAIDs, corticosteroids (orally or injected), anti-spasm drugs, anti-convulsants (to help with the burning pain), and in some cases, narcotic pain relievers. Some of these medications may be administered through an intrathecal pump which, when implanted under the skin, can administer medication directly to the spinal cord.

- Physical therapy such as hydrotherapy, massage, and hot/cold therapy.

- Transcutaneous Electrical Nerve Stimulation (TENS) - a treatment in which a painless electrical current is sent to specific nerves through electrode patches that are placed on the skin. The mild electrical current generates heat that serves to relieve stiffness, improve mobility, and relieve pain.

- Spinal cord stimulator - a device that transmits an electrical signal to the spinal cord for pain relief.

Surgery is not recommended for arachnoiditis because it only causes more scar tissue to develop and exposes the already irritated spinal cord to more trauma.

Living with Arachnoiditis
Unfortunately, this condition can cause serious disability. It is never easy to live with chronic pain. Not only does it adversely affect your body, it can also cause mental stress as well. Sufferers of arachnoiditis are encouraged to join support groups or find other therapeutic outlets for stress. Treatment methods should be focused on pain relief and maintaining quality of life. More research is needed about this and other chronic pain conditions so that someday a cure may be found.

Thanks for all this info....what I was actually looking for was anyone that has had this condition so I won't feel so alone

Sorry you had to join the club.......
Hugs,
Jan

Wow Jan,
I can't believe I never noticed that in your sig.....boy am I blind!!! How long and how did you contract it and did you ever get a Dx from a doctor?? I noticed at most of these support sites for Arach.....tons of folks can't get their docs to acknowledge it!! Have you ever considered the pain pump or are you one of the few lucky ones with lower pain levels??
Sorry if I am being too nosy....I have found 3 support sites so far but they are so slow...nearly deserted

Hi Junie, I have a cousin with it. She got it after spinal surgery I believe. This was quite a number of years ago. It has been miserable and she has tried numerous things. I'm not quite sure where she is at with it now but I know she had bladder and bowel problems before. I believe she is taking Lyrica for peripheral neurological pain and low doses of narcotics for pain. She is also full of arthritis all over and in her back now too. It's been tough for many years for her. Just my thoughts.

Kitt

Hi Junie~
You're not blind honey, I didn't have my signature on till a couple of weeks ago. I had it on for a while on OBT, but took it off. I put it back on here when someone on the PN board wanted to know whom of us posters had PN; that it would be nice to let people know that couldn't remember, so I put my updated signature back on.

My Arachnoiditis has been diagnosed numerous times, BUT it has been missed just as many. It originally was diagnosed when my hometown doctors sent my MRI films out to be read for a herniated disc.

I was sent to Twin Cities Spine Center. They diagnosed it there also. I was sent to The Mayo Clinic. Their Radiologists missed it. I asked my Physiatrist to please read the films personally, because she doubted the diagnosis--even though the prestigious Twin Cities Spine Center had given the diagnosis. She came back into the room and apologized for them missing it. Yes, I have Arachnoiditis.

After the first diagnosis I had been in contact with Dr. Sarah Andreae-Jones (Smith), a leading authority on Arachnoiditis. She gave me the URL to her website: http://www.theaword.org She was so kind to answer my questions and calm my fears.

You're right about most doctors not diagnosing Arachnoiditis. It is not real common. A lot of doctors have not seen Arachnoidits outside of their textbooks. Most Radiologists miss it because they, too, have not seen it outside their testbooks, and they are not looking for it.

There also is no cure for it, and I'm sure you know everything I'm saying here. All they can do is treat the pain.

Since I have PN also, and the symptoms mimic each other, they don't know which disease is causing which symptoms. After two years my Mayo Neuro finally admitted that she believes that I have Arach. She didn't until now--even with all of those diagnoses documented. It's always an uphill battle.

I've had Arach for 19 years, if I got it how they think I did. It is a strange story. I went to my rheumy for what is now diagnosed as Fibro. My neck was locked to the side, so he gave me two steroid injections directly into the back of my neck while I was sitting on the exam table. They figure he injected into my spinal cord and the steroid traveled down my spine and settled in my low back.(my condensed version of their complicated story)

My pain levels are manageable most days. It's not real good by any means. The only pain med that I'm on is Tramadol--yeah, like pi$$ing on a forest fire, but I'm also on Topamax, Mexilitine, Amitriptyline and WelbutrinXL and a couple of other meds not related. (Mayo is Narcotic-phobic.) I also have a prescription compounded ointment that gives relief. It was for my feet, but I found it also helps the branding iron someone has in my low back.

I hope this info helps. You're not alone Junie, and again, sorry you had to join the club.
Hugs,
Jan