Alan Woods Story as told to Toni Hassan a reporter on the ABC
Welcome to the The AUSTRALIAN ARACHNOIDITIS SUFFERERS ASSOCIATION NSW Website.
The purpose of this site is to inform the public, sufferers and their families about Adhesive Arachnoiditis.
This is a print version of the story as told on Thursday 30 June 2005.
MARK COLVIN:
Hundreds of Australians believe they're facing a life of crippling pain because of medicine's most routine procedures - an E-Ray. to help a doctor read their X-Rays, their spines were injected with a contrast dye known as Myodil. It was banned in some countries in the '40s and'50s, but went on being used in Australia until 1987. Sufferers from what's called Chemically Induced Arachnoiditis say the medical profession has ignored them. The manufacturer of Myodil has in the past denied its product causes the condition. Sufferers want a public enquiry, and they're preparing a class action against the manufacturer and Australian hospitals where the dye was used
Toni Hassan prepared this report for PM.
TONI HASSAN:
Alan Wood was a happily married man, aged 24 when he was admitted to the Royal Brisbane Hospital with a sore appendix. The doctors suspected a back problem as well. He says what was to a straightforward set of tests ruined his life
ALAN WOOD:I was just informed I was going to have a Myelogram, which I thought was going to be a simple procedure. They said they were going to take some fluid out of the spine and then inject some Myodil in as a contrast dye to see what was causing any problems in my spine. I was never aware I was going to end up with such severe complications.
TONI HASSAN:While the instructions issued with the dye suggested that it be removed following the X-Ray, some of of it, an oil-based chemical, was left inside Alan Wood's spine.
ALAN WOOD:The moment they put me in bed I was a raving lunatic.
TONI HASSAN:A raving lunatic, what do you mean?
ALAN WOOD:I was...well, the dye had apparently affected...hit brain and the headaches...had severe headaches. I was screaming, climbing the wall, and the whole body was a mess.
TONI HASSAN:Did you have any idea why?
ALAN WOOD:I never had any idea why, and I never got an explanation why. My specialist came later in the afternoon, saw the condition I was in and that was when the alarm bells started, and then they were giving medication, and unfortunately to this day I have 25 years of medical records released to me, but the two days in particular, have never been released. They're lost.
TONI HASSAN:The year was 1970
Doctor's at the time said Mr Wood's pain was a temporary reaction to treatment, but at home, new, more serious symptoms developed. Alan Wood lost vision and suffered Paralysis. In the months that followed he travelled from specialist to specialist. Some discussed his pain as psychosomatic, others suggested all sorts of causes. At last he received a diagnosis that seemed to finger Myodil.
ALAN WOOD:I have X-rays and scans done and it's revealed there's Myodil droplets, and two years ago I had it confirmed by a neurologist and radiologist that this is what is causing the problems. I'v been treated for Multiple Sclerosis, Epilepsy, Kidney problems, Bladder problems - they'd never ever pinpointed what it was.
TONI HASSSAN:Why was there a reluctance to, or was it just an inability to diagnose it?
ALAN WOOD:I think it's a reluctance. Doctor's just don't want to tell you what it is. The Radiologist sent the report back, she actually apologised to me, said yes, it's confirmed, you do have it.
TONI HASSAN:Why is there a reluctance do you think?
ALAN WOOD:Oh, I think mainly because way back from '40s to the '78 it was literally a legal drug and they didn't want to reveal what was happening to people.
TONI HASSAN:PM has contacted Alan Wood's specialists who are now treating him for what's called Adhesive Arachnoiditis and they've supported this assessment.
Mr Wood is one of hundreds of Australians planning a legal action case against the global manufacturer of Myodil, GlaxoSmithKline as well as Australian Hospitals. GlaxosmithKline has in the past denied its product causes Arachnoiditis. PM today contacted Glaxo in Australia and put the allegation that Myodil has caused Arachnoiditis in some patients who underwent special X-rays years ago, but the company, headquaurtered in Melbourne, declined to comment. In the United States, the UK, and in Australia six years ago, the company settled legal actions out of court with hundreds of sufferers on confidential terms. The company then said that sufferers had pre-existing back conditions. David Baran is a barrister advising a Sydney law firm, which is expected to launch the new class Australian action in September. Mr Baran says the case is strengthened by provisions under the Trade Practices Act that protect consumers against defective goods.
DAVID BARANThe Trade Practices Act makes it abundantly clear that when a particular corporation in trade and commerce supplies a good, and that good is defective, then subject to very limited defences, the company has a very, very, very strict liability, and must pay for an loss of damage which flows as a result of that particular defective good being supplied. the defective good in this particular situation was a series of dyes used for particular neuroligical and radiological procedures, including the Myeologram. It was defective.
We understand that at that time the company had enough information to know it would be defective, but even if it didn't, under our Trade Practices Act there is a liablility and we propose to obtain maximum compensation for our clients as a result of what's concerned.
TONI HASSANIs the Federal Government also in your sights?
DAVID BARAN:The Federal Government at the moment has not been ruled out. Neither has the TGA in its manifestations, both at State and Federal levels.
TONI HASSANMyodil was banned in other countries as early as the 1940s, years before Australia stopped its use. However, allegations the product is unsafe and causes Arachnoiditis have never been tested in an Australian court of law.
Marcus Stoodley is with the Department of Neurosurgery at the Prince of Wales Hospital in Sydney. Dr Stoodley says it's now medically accepted that Myodil is associated with the subsequent development of Arachnoiditis, particularly when the dye is left inside the spine after X-rays have been taken.
MARCUS STOODLEY:
The modern contrast agents are dissolved in a water based fluid. The technology has evolved. I mean, Myodil was the state of the art: it was an oil-based fluid, and when that contrast was used to obtain X-rays of the nerves in the spine, part of the technique was to remove the contrast agent at the end of the procedure, and that's not always technically possible. amd so, particularly in some patients where there was some of that oil-based contrast medium left in the spine, that caused ongoing inflammation.
TONI HASSSAN:Arachnoiditis sufferers also want a national public inquiry, concerned the drug regulator and State and Federal governments did not do enough to protect patients. The Therapeutic Goods Administration has told PM that there was no national regulator when the contrast dye was first used in Australia and that Myodil was the best available product for assessing severe back conditions at the time, but the spokeswoman adds that doctors did not always heed the product's warning and take proper precaution's. Correspondence to Arachnoiditis sufferers obtained by this program show that the Commonwealth Health Department on behalf of the Minister has already said no to an Inquiry, observing that the incidence ot the condition following use of the dye is uncommon, too uncommon to warrant an investigation. In the meantime, Alan Wood and others like him, manage their condition in the hope of one day they'll be proven right and compensated.
ALAN WOODIt is a struggle, because each day you wake up and you have to get up and get yourself mobilised. Your body is just a mess. I mean in my instance, my bladder, my bowel has gone. I have to self-catheter three times a day. It is a struggle to stand up, a struggle to walk. Even 12 months ago I had to be retrained how to talk and eat because the brain isn't telling me how to talk and eat properly.
MARK COLVINAlan Wood ending Toni Hassan's report.
Source: www.abc.net.au/pm/2005s1404355.htm
THIS IS A STORY GIVEN TO ME FOR THE WORLD TO SEE WHAT ARACHOIDITIS SUFFERERS GO THROUGH BY A MAN CALLED RAY KING WHO IS NOW 80 YEARS OF AGE
Ray wrote this story in 1997, he wanted to put his suffering on paper in the hope that one day it might get out for others to read and see what Arachnoiditis sufferers go through and the hurt of no one understanding or caring. Ray is bedridden now but happy at last that his story will be told
As I have spent ny seventh day and night in bed in a bed of pain, only one of many similar unending sessions over the past 20 years, I cannnot believe that in all this time I have found the medical profession did not want to know me or the cause of my pain. So I have decided to put everything down on paper to send to universities and newspapers and anyone who will listen to what is injected in people's spine in the hope that my story will be heard and the injecting into the spinal canal of these dye's will stop.
In the past I have been insulted by the medical profession, the Compensation Employees, of course and only since I wrote regarding my injection of Depo-Medrol since I found out about it and was sent to psychiatrists, they are extraordinary in that they interrogate you and manipulate your words to suit their reports and do not even investigate your health problems. All this they do without you having the right to challenge them. As I have never been able to play with or even nurse my grandchildren I've found their reports quite overwhelming.
But there was light at the end of the tunnel as I have since read and it is quite true. See Professor Tress in Victoria (a report written by him). Also the N.H.M.R.C. Epidural use of steroids (written for medical practioners and health workers only) printed in 1994.
I knew nothing about "Depo Medrol" until October 1992 when I saw the ABC Investigator's program. I would still be ignorant as to what waa causing all my medical problems which in turn led to 10 operations which left me in a worse condition. Now they have found that "Depo Medrol" leaking into the spine can cause all of the side effects which I will explain in order of my complaints over the years.
As I am now 66 years of age, death is the only relief from this never ending pain. I can see why other patients have taken their own lives. It is quite true that it is worse than cancer because you don't have any remission from the pain. We need help!
I believe that doctors were illegal in using it in the first place as the Australian Medical Research Council refused it as a spinal injection and also the AMA told doctors they wouldn't protect them if they used it after 1990. In my case I can prove it was used up to 1992.
The last injection was a beauty and sent me down with chronic eye and head pains (unable to stand light) lasting up to 6 days. The only relief was daily pain injections from the family doctor.
If a mechanic or any tradesman was to do faulty work you could claim against them but the medical profession is protected and you just have to suffer. The truth is something they don't want to deal with so you are left to suffer.
All my statements are covered by all my medical files from hospitals and even documents written by doctors involved, as I was on compensation in those years, which was not meant to be used for this purpose.
I am getting ahead of myself and will explain my medical health problems from the start as to how I ended up like this, leaving out only doctors names, hospitals etc., these are written for reference if needed in the future.
My problem started with a minor accident at work in March 1977, my then was 47 and my health was excellent. I had a grown up family, I was paying off a home and boat. I enjoyed sport and had an excellent job so life was pretty good. I broke my tail bone which was quite painful as my job was drivinga and installing and maintaining telephones. After several months of treatment and drugs I was placed in a private hospital for manipulation under anaesthetic and injection of "Depo Medrol" in the Sacro-Coccygial Junction section of the spine as per medical copies. After this I returned to work after seeing the Government doctor in Sydney feeling good. After three months the pain returned and even carrying a cushion with me, I was unable to sit on my buttocks without severe pain. I was blaming my coxy's, but after reading the report by N.H.M.R.C. (printed in 1994) Epidural use of steroids, written for "mainly for the use of medical parctitioners and health professionals". "Diagnosis"pain extends to knee and elbow, in the buttocks pain is deep seated and cramping aggravated by sitting, leg pains, etc. So I knew nothing at all about side effects till 1994 and yet I was complaining about these medical problems over all these years but only operations were carried out, leaving me in an extremely worse condtion.
So returning to the surgeon complaining about my buttock and tail bone he suggested the removal of the Coxy's. This was carried out and was a very painful operation with a drain and a pump from my rear end for a fortnight. This was removed and a sealer sprayed on the wound. After a few hours an extreme burning pain attacked me. I complained to the duty nurse and nothing was done until the change in shifts, until then I was in pain and had trouble trying to hold a wet sponge on the wound to try and cool it down.
The new nurse went into action removing the sealer and cleaning the wound. She informed that I wasn't completely drained and this had caused an infection. I still have this burning Coxy's and hold ice cubes on for relief to this day.
After discharge for six weeks I was unable to sit down without pain. I saw the surgeon and told him I was feeling worse. I felt like I had an abscess. He didn't even bother to look, telling me I should be fit for work in a few weeks. This was never to ever happen!
As I was sitting on the toilet one day I touched the Coxy's and the abscess or infection burst in my hand. I placed the discharge on some toilet paper and called a taxi. Laying on my side I went to my family doctor and showed him. He arranged for me to see another Orthopedic Surgeon in hospital. He also told me that the previous surgeon was a stubborn man and would not admit to making a mistake regarding the absecess. I have since found out over the years that they are all the same and would never admit any wrongs, this is one reason why I am putting this to paper.
Anyway here I am seeing another surgeon who at that time right up to 1984 was only spending several months here from England until his contract was completed. He injected me with "Depo Medrol" and later operated on my Coxy's again. To "trim and clean up the Coxy's"as quoted in the operation report, which he told me was a mess.
So here I am, another operation which only left me worse. Still having painful problems sitting for any length of time, carrying a cushion with me everywhere I went and walking was the only relief that I could get. Many trips back to hospital looking for relief, further injections and now pains started in my lower back and pains shooting down my legs. It is now 1980 and a now a Myelogram! Although all my complaintts listed in my hospital records started before the Myelogram. Now the plot thickens. The report from the two doctors of the Myelogram stated "NO DEGENERATIVE CHANGES IN THE SPINE, DISC SPACES ARE NORMAL", but my surgeon told me that I had L4 and L5 disc damage and suggested an operation would give me some relief, it was at this time that I asked him could this have been damaged in the original accident and was told "YES", because then it would also be covered by compensation.
Another operation (L4 and L5 discs received a total of 4 operations) which have left me worse. (Hospital report: Operation unsuccessful) The pain is now at a chronic stage and pain in the legs are now worse when weight was taken off them than when lying down.
Now I know that they never realised that all my records would ever have been shown to me, but under the Freedom of Information Act I obtained all of these going back to 1969. So I was never ever to see the Myelogram results. I now find out that the surgeeon who booked me in for an 'explorative'. If I had known this no way would I have had anyone touch my spine. Now the damage is done and I am in continual pain day and night. going from doctor to doctor, therapy pain clinics and traction, more injections and traction issued for home use, but nothing helped, even further manipulation under anaesthetic but the pain is driving me mad by now and crying with the pain.
My friends used to joke with me that I loved hospitals. I used to laugh and say I sure wasn't a good advertisement or Orthopedic surgeons, that's for sure, but it is no longer a joking matter.
I was sent for x-rays on my feet. This time the surgeon told me I had spurs on both my feet which could be causing the pain in my legs. Up till now I could always walk. Bear in mind that before it L4/L5 discs which were causing my leg pains, now it is spurs. As I was grasping at straws and in pain, I went along still believing that the doctor's would know best.
The operation was carried out and when I woke up I found that both feet had been done, when I had been told that only one foot at a time would be done. Baoth feet were bandaged up to about double their size. I was worried when I saw this and when I asked a doctor what they had done I was told that they had only cut the feet, the "Platum". I was amazed and the pain in the feet was extreme. This didn't seem to worry them as they had me up and walking straight away. NO one could believe the pain I had to indure. I truly believe that most doctors know nothing about pain, only the one that suffers knows. The one thing I could do up to then was walk, now I'm left a semi-cripple with terrible burning feet. The left foot was worse, so back to hospital, now on crutches, complaining.
The doctor put me back in hospital and redid the left foot. This still made no difference, so orthopedic shoes were ordered. These haven't helped even after four different pairs. I have been left with a surgical scar which inflames and my doctor was injecting me with an anesthetic which only relieved the pain for a short time. I have now been operated on a total of seven (7) times, I still have my original complaints and am suffering more than before.
I was now sent to a Phsychologist trying to make out it was all in my mind. What a joke!!!!! I'm afraid they are the lowest in the medical practice. The things they write and assume. How they corroborate with each other to make it difficult for you to argue with them. All of this is hard to believe , but I have proof of everything I have written and have written reports from doctors and therapists I have attended over all these years. I only have these because my boss, a supervise technician, advised me to copy everthing that is written in case I never returned to work. I can thank him for his sincere advice. I believe I would be the only person to have kept everything I have and would advise fellow sufferers to do the same in the future. He also offered me a job as a clerical assistant in the telephone exchange, but because I was unable to sit down I couldn't accept his kind offer. I might add, that after attending three pain clinics, any therapy only made me worse, even swimming. You couldn't explain this to the pain clinic doctors or therapists. If it wasn't in their learning or books they wouldn't believe you. I have since read and spoken to fellow sufferers, it affected them in the same way, causing spasms in the muscles to increase.
TO BE CONTINUED