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Question 4 Arachnoiditis/cronic Pain Ppl Pamidronate/Aredia anyone had it 4 pain?

#1 User is offline   Arach-No-Phobia 

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Posted 25 February 2006 - 06:19 PM

Hi people. My question that I seek help with is: Has anyone reading the forum been given an infusion of Pamidronate, known also as Aredia please ?

For the Arachnoiditis people, some background.
I have had a diagnosis of Arach since 1979 although not known to me untill I uplifted my hospital file in 1992.
I had an accident at work early 1975 & later had Myodil the day b4 surgery. Had a Laminectomie & Discectomy.
15 days after surgery while still in the ward, a large dinner wagon inpacted me at the sight of surgery & knocked me to the floor. The incidient was hushed up even though extream pain followed & internal grating could be felt & heard with a stethoscope. The surgeon, without examining me, wrote a report stating "fat lump to be ignored".
Thus, from the time of my work accident ( I was 19 ) till 4 years later, I suffered constant pain & a never ending round of trying to find out "why" ?
I was to have had a 2nd Myodil dye lumbar puncture in 79, however, it did not proceed as it was found on the day just as I was due for the injecton of it, that I still had enough Myodil in my spine & that indeed in the space of 4 years I had developed Adhisive Arachnoiditis from the previous Myodil & managment. This diagnosis using the term Arachnoiditis however was never given to myself or my family... What we were informed of was that I had "some scar tissue / fibrosis from the surgery.
I was dispatched to the scrap heap, that being the end of things it was hoped.
However it wasn't as I was not able to co-exist with the pain that was all in my mind / head.
From 1992 upon finding out what it really was that I had, I have sought answers & impowerment for ways to co-exist with Arachnoiditis.
18mths ago I was wheelchair bound for the 4th time after my legs gave way & I pitched down my stairs. I was transfered from my base hospital to a city hospital where I had my 1st ever MRI.
The previous diagnosis of 1979 was confirmed & further showed that the progress of the disease is now at a stage named Chronic Scar Phase : Class III & "Ossificans" or Calcification ( This is the most advanced phase of the process where the Scar tissue has calcified entraping the nerve roots, in my case at 4 different levels ) It is classed medically as a disease entity & my outcome my be that due to progressive nearve root compression,being wheelchair bound full time is not unlikely.

The drug I name above "Pamidronate" known also as "Aredia" is certified for use to treat Hypercalcemia ( too much calcium in the blood ) that occurs in cancer. It's used in Paget's disease & also to treat bone Metastases ( spread of cancer )

A well respected Surgeon who I have been seen by from a spinal unit has suggested that I agree to have this drug used on me to try to treat some of the pain I have now due to where the level of the disease is in my spine. "However" here is my problem... I know I have this disease due to the Myodil & was never told it could do this to me in the first place... what it has done to me was hidden from me... I have had no redress, help, or compensation for the disease... and here I am being asked to agree to have used on me a drug that is not licensed as a treatment for the disease I have & there is no official guidance on who can use it.

Also, it is known to have many adverse side-effects for those it is being used to treat, with cancers.

So Please... Please... Have any of you people had it ? and if you have... DID IT LESSON YOUR PAIN..... You will know to what lengths the things pain drives you to consider doing..... !!!!!!!

My though 4 the day:
Behavior does not change unless there are consequences for it.
If the consequences for poor behavior are not sufficiently adverse, poor behavior is enabled and will continue.


Thank you 4 this forum & for all of you who belong.
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#2 User is offline   gaffa09 

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Posted 26 February 2006 - 08:44 AM

If you wish you may contact me by e-mail would dearly love to talk and may beable to help ,
If you can download the vidio links we have on site the burton reports, the 60 minute vidio , and chech out the arachnoiditis site .
My e-mail address is jhuntley@xtra.co.nz

would love to talk on the phone if pos so we can make arrangements by e-mail.
johns the name
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