Screaming Eagle said...
Good morning magpiei!
Welcome to the "Chronic Pain" forum!
You know...I have read through your post several times and it just does not make any sence to me.
I even looked up the "Adhesive Arachnoiditis that you suffer from, and yes it does seem incurable and very little is known about it. It looks like to me the tissue surrounding the spinal cord is inflamed? is that right?
The WA saying that no one will treat you, because you do not have Ins is way off the chart of understanding for me, if indeed you have it. I know of no medical facility that does not ask for your Ins information when you sign in for treatment.
While there is no known treatment, it does look like the best corse of comfort comes from Pain Med's.
Maybe one of our members will understand this better than I do, and can suggest a better answer. The only thing I can think of is to call your insurance provider and have them refer you to a PCD that they work with.
I wish the best for you, I really do!
Hi Screaming Eagle, Thanx for your reply. Sorry Im not sure if Im replying to you correctly as Ive been bedridden & isolated for 16 years now with no-one to show me how to use internet, forums etc. So please have patience with my mistakes. I must also apologize for my delay in responding as I am not always well enough to do so & my old laptop doesnt always work.
I need to buy a notebook with guaranteed support as I am not computer savvy. We know of only 1 correct explanation online of Adhesive Arachnoiditis (AA) by Dr Burton, worlds leading expert & researcher of AA in USA. AA appears to be very political with most Doctors refusing to discuss, investigate or diagnose it. I have been frustrated & neglected because of this attitude & though my Carer & I have done everything possible to find out what the problem is we have not been able to in all these yrs.
Some groups for AA think drs are protecting medical insurance companies by deliberately preventing Patients from claiming compensation. But it is the Specialist who orders a myelogram & they are carried out in public hospitals. AA was first recognised as a major risk of myelograms in 1925 & most countries banned there use in the 30s. Except Australia, NZ & USA who do not inform Patients of the risk. They can do this because drs refuse to diagnose AA, therefore there are no true statistics of AA. So "recorded" cases are rare, ergo there is no risk to justify drs having to inform Patients of any risk.
Most sufferers never hear of AA & spend their lives in frustrated agony, unaware of the horrific disease they have & what is in store for them. In addition AA can take up to 15 yrs to present & drs take advantage of this lapse by saying that Patients symptoms are from other injuries sufferered during these yrs. Although AA is relatively easy to diagnose from the insideous symptoms & the fact that Patients have had a myelogram.
Often Patients encounter no other injuries so drs tell them their symptoms are all in their mind. Its incredible how they get away with false diagnosis as AA symptoms are v. severe & include paralysis which only develops from nerve damage. AA causes the spinal nerves to stick together causing major nerve damage & inflamation of the 3 membranes & spider like nerves within, encasing the spinal cord.
Pain is only 1 of the symptoms which include; Excrutiating nerve pain throughout the body as the nerves degenerate, bodily dysfunction as the damaged nerves fail to send the correct instructions to limbs etc, Creeping paralysis as the nerves degenerate, shortened lifespan up to 20 yrs, Bladder & bowel dysfunction & incontenince, Contaminated spinal fluid from the injected dye causing intense spinal headaches lasting up to 3 months, vertigo & vomitting, chronic fatigue & exhaustion from having to deal with intense pain 24/7, Lowered immune system, Burning feet & other neuropathic pain sensations & a myriad of other insideous symptoms depending what stage of the disease the Patient is at.
But the worst symptom Patients must endure is the unbearable nerve pain which is likened to the pain levels of Cancer & treated with the same meds. AA is not rare at all, it is simply never suggested or diagnosed so there are v.few recorded cases. We have only ever heard of 2 Patients with diagnosed AA who have won compensation claims & both were made to agree to a different diagnosis in order to receive their payouts.
MRIs will not normally show AA unless the magnets are on a v.specific setting but this setting is never used by the Radiologists. So most MRIs fail to show AA, allowing drs to deny cases of AA. Interestingly MRIs are the only proof drs will accept as a diagnosis of AA. I will do another reply to give more info as I think I am limited by the accepted lengths of posts? Warm regards, Jai
(Edited for eaiser reading)