Quote:
Originally Posted by Debby
If you read here....THE ADHESIVE ARACHNOIDITIS SYNDROME] link removed so I could post...
It says that rsd is part of this disease? A friend found this by accident looking for reviews of scs trials....it is quite interested...especially since the this disease talks about sweating and all sorts of things that have not seen associated with rsd prior to this. She thought I might want to read this if for no other reason than it is interesting considering we both have rsd. And I thought maybe the rest of you might find it interesting. This is very interesting reading because alot of these symptoms listed are believe it or not, ones I have read on this forum, but are not necessarily listed on any RSD website. Makes me wonder if some of us actually have Arachnoiditis to begin with & NOT RSD at all.
CAUSES:
* Spinal surgery (especially multiple)
* Myelographic dyes (especially oil-based such as Myodil (Pantopaque))
* Epidural steroid injections (e.g.Depo-Medrol)
* Epidural anaesthesia
* Other intraspinal drugs such as amphotericin B and methotrexate
* Multiple lumbar punctures
* Trauma
* Infection e.g. meningitis
* Subarachnoid haemorrhage
* Spinal stenosis
* Chronic disc prolapse+
Again link removed so I could post...
PROGNOSIS
Arachnoiditis has been described as an insidious disease that is incurable. Guyer’s paper on the prognosis of arachnoiditis ([38]) suggests that there tends to be a spectrum of the course of the disease, which varies from mild and non-progressive, to a fulminating progression that may cause paralysis and even death. Wilkinson ([39]) believes that progression after the first 24 months is unlikely to be due to the disease process alone. Most authors state that its onset may be years after the precipitating cause.
In general, arachnoiditis presents a highly variable clinical picture, with a fluctuating course. Some patients seem to reach a “plateau” and stabilise without further deterioration, whereas there is a group of patients who develop a relatively rapid progressive deterioration (within a matter of months) during which they tend to lose function in the affected limb(s). This tends to happen after a seemingly trivial event such as a minor fall or car accident.
The thing with the prognosis is that no one that I know has become paralyzed or died solely due to RSD. I know of no one who has been Dx'ed with Arachnoiditis. But gives one much to ponder.
DebbyV
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Hi DebbyV,
I have both rsd (CRPS II) and Arachnoiditis. I had a medtronics morphine pump implanted improperly in my body. The doctor attached the catheter from the pump to my spinal chord with only one suture which became unattached while I was using a new VERY effective treatment for rsd. It is a drug called Prialt made from a sea snails venom. While it permanently cut my pain in half from the rsd after about six months, it was leaking down my spinal chord and caused extensive scarring in the coccyx and l5 vertebrae. I bring this up only because it is "common knowledge" that Arachnoiditis is incurable. This is no longer the case. A good friend of mine found some research on a new method of treating and removing the scar tissue over time without any dangerous drugs or invasive procedures. It involves a drug called Pentoxifylline, and vitamin E, taken orally twice a day. I showed my Dr. the studies published in the English journal of medicine, and he put me on the drugs after studying it for awhile. In the last six months I have gone from not being able to sit, or drive without extreme pain, to being able to sit, and drive moderate distances with mild to moderate pain. It seems as if their is a very initial quick reaction to the drug, then it slows and treatment takes 3 to 5 years for dramatic results, but the drug is very inexpensive, used extensively for off label uses, and has only mild side effects. The one danger is you CANNOT use aspirin, or NSAIDS, or any blood thinning drugs. It works on all scar tissue not just Arachnoiditis. My life has improved so dramatically I am trying to spread the word about this treatment. If you want to contact me about the studies (I can't post links because I don't have ten posts yet) you can contact me, or leave a msg here for me. Anyone suffering from this debilitating disease should have their Dr. read the studies before giving up. In addition to pain the scarring left me unable to relieve myself w/o extreme effort in addition to many other effects. I now have no problem with these activities. Sincerely Johnericus aka John Allen.