TARLOV CYSTS - Canada the misinformed!!!

The rare diagnosis of Tarlov Cyst Disease poses significant challenges in the realm of medical care. Most Canadian Medical Practitioners lack the expertise to accurately diagnose, treat, or manage this condition. As a result, patients often find themselves navigating a healthcare system ill-prepared to address their needs, leaving them feeling lost, scared, and isolated. This lack of medical understanding perpetuates feelings of misinformation and uncertainty among Canadian patients. Through this blog, I aim to share my journey of navigating the Canadian Healthcare system while living with multiple rare disease diagnoses. I have dedicated myself to learning as much as possible about my rare diseases, hoping that my experiences and hard-earned self-education can support and guide others on their own rare disease journey. Together, let's shed light on the challenges those living with rare diseases face and work towards a more compassionate and informed healthcare system.

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Wednesday, April 6, 2011

What is Arachnoiditis?

Arachnoiditis ** Provided by Spine Universe**


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:
  • 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.
  • 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.
  • 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) is 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 is 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.


Updated on: 12/10/09

5 comments:

  1. This link caught my attention as my boyfriend has an Arachnoid Cyst on the left side of his brain.. are the two related in more then just name?? We have been looking for a neurosurgeon to take him seriously but it seems like the only chance we have of getting it removed is for him to go to the states.. Just wondering if you have possibly heard of an AC or better yet if you know of someone who has had one removed? We are willing to travel to find a dr willing to treat him. Please any help is greatly appreciated

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  2. Good Luck getting this condition diagnosed if it has a Insurance Element: Because Insurance Companys know all to well the seriousness Adhesive Arachnoiditis carries; Everything, (I mean EVERYTHING) will be used to deny your diagnosis; (No diagnosis = No claim = No Costs) Welcome to the World of Medical Legal Insurance Fraud - Racketeering:

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  3. Injured & Abused: I honestly hope researchers/insurance company's aren't preventing/hiding this condition --in fear of insurance/medical losses.
    For if a treatment were available, absolutely EVERY ONE suffering would agree to "No damages" claim in exchange for relief. ANYONE so afflicted would take that deal IN A SECOND.

    The pain, indeed, is horrendous. I, an active athlete when younger had constant bruising, severe and several lacerations --skating/hockey, muscle pulls/strains, ankle/elbow dislocations and similar 'injuries'. Those injuries I never considered 'pain', perhaps soreness, 'hurts a bit', but nothing more.
    No one could ever imagine such vicious, unrelenting suffering. It's unimaginable. A CONSTANT burning low-back ache so deep, so "on-fire --or perhaps smoldering" feeling down your central spinal nerve roots --never attended, no water to douse the agony.
    I never knew something like this could even exist. It's impact on the sufferer is profound, unrelenting and gravely life-shortening.
    The body/mind cannot tolerate/adjust to such punishing, constant attack/disease, breaking down tissue, preparing the host, for certain death.

    God help all, suffering from this unimaginable disease.

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  4. See https://pantopaque.wordpress.com for.the leading cause of AA a cause they don’t want you to find out Illegal use of ESI comes in second but slowly taking over a the cause my 25 years of research doesn’t lie

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  5. I have the adhesive variant & all I ever get is medication cut's & absurd suggestions to the cause of pain. Some suggestions were I wore a hat & my footwear was too narrow. I was told I could definitely get MRIs after a spinal modulator was surgically implanted,much to my surprise I was told that this not possible. I've been treated like diseased vermin,barked at & lied to. The pain this disease causes is horrific. My life has zero value & that's reinforced every time I see a doctor. I'm not getting any better,only worse. It's a progressive disease & doc's think "oh no,that can't happen". I've been on such a low dosage for over a year & I keep telling them I'm getting worse. It's hypersensitivity to the opioid medication but,when I was on a higher dose I didn't have the hypersensitivity. Lie's, lie's & more lie's. I've just about had it. The Canadian federal government's opioid mandate is killing people every day. Slitting their own throat's, shotgun blasts to their head's, slitting vein's, splattering themselves from Bridges & if you believe I'm being offensively graphic,ask the families that have to identify the remains if it's graphic.

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