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Myelogram - Long term side effects
Just over 20 years ago (at the age of 12) I had a Myelogram procedure in Australia following a motor vehicle accident. The Myelogram showed no spinal damage but the dye leaked into my brain. Over the proceeding 4-5 week period I was hospitalized with a severe headache. The hospital put in me in a dark room and didn't feed me during this time as I could not keep solid food down. The doctors at the time were going to drill into my head to release the pressure caused from the dye but the pain eased before this took place.
After leaving hospital, I began to get severe headaches (migraines) about every 2 weeks. Over the past 20 years the prevalence of these headaches has now reduced to about once every 2-years. When I get the headaches they last for about 4-8 hours and I experience incredibly pain throughout the front of my head.
I've been managing these headaches by taking 60-120mg of codeine as soon as I get the initial symptoms - these are usually blurred vision and numbness in my hands, feet and face (including lips, nose and eye-lids).
I'm interested to hear if anybody has had similar long-term side effects from the Myelogram procedure and whether there is any more effective way of treating the symptoms.
Cheers,
Benn
After leaving hospital, I began to get severe headaches (migraines) about every 2 weeks. Over the past 20 years the prevalence of these headaches has now reduced to about once every 2-years. When I get the headaches they last for about 4-8 hours and I experience incredibly pain throughout the front of my head.
I've been managing these headaches by taking 60-120mg of codeine as soon as I get the initial symptoms - these are usually blurred vision and numbness in my hands, feet and face (including lips, nose and eye-lids).
I'm interested to hear if anybody has had similar long-term side effects from the Myelogram procedure and whether there is any more effective way of treating the symptoms.
Cheers,
Benn
I believe that myodil dye causes huge problems without it necessarily developing into full blown adhesive arachnoiditis. I would like to hear from people about their experience if they have NOT been diagnosed with adhesive arachnoiditis but still have the dye in their spines.
Hi Ben,
Firstly I just want to say how sorry I am that you've suffered so much.
My name is Ali, when I was 5 my mum had a mylogram lumbar puncture and the dye leaked into her head. she spent 4 years in bed, only managing to get to the to the toilet and wash before the pain became too much. She was on the highest dose possible of steroids, which caused her to grow a mustache and gain a large amount of weight. The steroids had to be reduced and the excruciating headaches returned.
My mum has lived 32 yrs of pain and fear of pain. she has to avoid so many things. generally all shops, cafes, restaurants ect play ridiculously loud music, this is all it takes to set off a severe migraine.
My mum recently joined us on a family holiday to teneriffe, she is such a brave lady as she knew that the change in pressure on the plane would upset her head. It did and it was horrendous seeing her in so much pain. I found out recently that some of the dyes used in mylogram should have been extracted from the body. There were 12 people in Scarborough, North Yorkshire who were effected for the rest of their lives by the mylogram dye.
No pain killers help my mum. I'm trying to find out if the doctors have learnt anything new about how to get the dye out of head.
I pray that my mum is healed, so that she can be free because she is the most selfless person I have ever known. I felt very emotional when I read your story, not one should have to suffer especially at the hands of our medical professionals.
If I find anything of interest with regards to a cure or something to ease the pain and symptoms I will let you know, please will you do the same.
My mum and sister and I will pray that you are healed.
God bless you Ben
Ali
Firstly I just want to say how sorry I am that you've suffered so much.
My name is Ali, when I was 5 my mum had a mylogram lumbar puncture and the dye leaked into her head. she spent 4 years in bed, only managing to get to the to the toilet and wash before the pain became too much. She was on the highest dose possible of steroids, which caused her to grow a mustache and gain a large amount of weight. The steroids had to be reduced and the excruciating headaches returned.
My mum has lived 32 yrs of pain and fear of pain. she has to avoid so many things. generally all shops, cafes, restaurants ect play ridiculously loud music, this is all it takes to set off a severe migraine.
My mum recently joined us on a family holiday to teneriffe, she is such a brave lady as she knew that the change in pressure on the plane would upset her head. It did and it was horrendous seeing her in so much pain. I found out recently that some of the dyes used in mylogram should have been extracted from the body. There were 12 people in Scarborough, North Yorkshire who were effected for the rest of their lives by the mylogram dye.
No pain killers help my mum. I'm trying to find out if the doctors have learnt anything new about how to get the dye out of head.
I pray that my mum is healed, so that she can be free because she is the most selfless person I have ever known. I felt very emotional when I read your story, not one should have to suffer especially at the hands of our medical professionals.
If I find anything of interest with regards to a cure or something to ease the pain and symptoms I will let you know, please will you do the same.
My mum and sister and I will pray that you are healed.
God bless you Ben
Ali
The end result of a Myelogram especially between 1944 and 1991 worldwide is a condition known as Chemically Induced Adhesive Arachnoiditis. A persons level of harm caused by this injected dye [now known to be too toxic for human use] known as iophendylate [Myodil or Pantopaque or the other 21 brands of the same used around the world 107 countries] is decided by: how much injected, how much was removed, and very importantly the level of inflammation of the nerves at the time of injection. Today, up to 80 related medical conditions/symptoms have been directly linked to the use of this dye [NIH 1997]
Hi, I had 3 Mylograms in the 70,s and 80,s
All these years later I suffer constantly with the headaches. I have been given for many years 12 Imigran injections a month, to inject myself by my Doctor. Some months I have to have extra.
When I have an x-ray or an MRI there is Mercury residue at the base of my spine which is shows as silver.
I have tried for years to gain help and relief. Specialists have told me that "it's only residue my dear" and will have no bearing today.
Convenient eh?
My life has been wrecked by Milograms, and the medical profession shove it under the carpet
***@****
All these years later I suffer constantly with the headaches. I have been given for many years 12 Imigran injections a month, to inject myself by my Doctor. Some months I have to have extra.
When I have an x-ray or an MRI there is Mercury residue at the base of my spine which is shows as silver.
I have tried for years to gain help and relief. Specialists have told me that "it's only residue my dear" and will have no bearing today.
Convenient eh?
My life has been wrecked by Milograms, and the medical profession shove it under the carpet
***@****
I am in agony in my lower body lumber sacral hips knees and feet sometimes the trigger shooting pains make me cry out in pain I had a myleogram some 25 to 30 years ago which is showing up on a recent MRI. so I would be most grateful for any information you can give me. best regards Lester
I'm having similar symptoms you are having. I was told I have arachnoitis,clumping of nerves on L4-5. I have burning,stinging pain down my legs and back and severe leg cramps. The pain is sometimes goes through my whole body. What do the doctors recommend for you or how do the doctor treat you for arachnoitis?
I was thinking was there a recall on myelogram dye?
I was thinking was there a recall on myelogram dye?
I had a meylogram 12/09 while on the table shortly after the dye was injected in my spine I had a headache.I suffer from cluster headaches but was in a dormant period until I had the myelogram. I an still having them 3-5 a day with no releife in site. Anyony else had a simular experience ? if so what worked to break the cycle
My wife just had a Myelogram and had severe side affects.
She has had 3 Patches in the back, this procedure is the Dr will take 20ml of your blood and inject into the spinal column, the idea is that the blood will form a clot and block the leak.
This has stopped the severe headaches, dizzyness, anxiety slowness in thinking etc.
Very hard to find where the leak is, which makes it very hard to block.
Hope this helps.
Anthony
0412780489
She has had 3 Patches in the back, this procedure is the Dr will take 20ml of your blood and inject into the spinal column, the idea is that the blood will form a clot and block the leak.
This has stopped the severe headaches, dizzyness, anxiety slowness in thinking etc.
Very hard to find where the leak is, which makes it very hard to block.
Hope this helps.
Anthony
0412780489
I also have myodil dye in my spine from 30 years ago they say it causes adhesive aracnoidites,meaning the nerves all stick together like spiderwebs, there was a class action against the makers of this dye glaxo or now glaxo_smith,i think ..you need a mri to be diagnosed with this ..i need to find my notes on this that iv'e got somewhere.i hope i can be of somehelp will get back to you cheers marg...
40 years ago i had a mylogram and the myloid fluid still shows flourecent near y lumber spine and dotted about the pelvic nerves. I have dreadful problems with the nerves triggering and its got worse. I do have medicine now to control it but it also stops brain activity as its used for ep`s Can this retained old fluid be the cause. jacki
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