United Brachial Plexus Network, Inc.

I was reading on the TBPI site and someone said that docter's don't do myelograms that much any more because of MRIs. Ihad my accident 31/2 months ago, and one month into it my neurologist ordered one for me. Holy flying pirates ships did that test hurt. They said I had an uncommon reaction to it, but I thought my head was going to explode. Well. a little while later a saw a chiropractor/accupuncturist/kinesologist docter who seemed very surprised that they even did myelograms anymore. He posed an interesting theory. I had no pain until about 1 1/2- 2 months into this. Since then, my pain has sky rocketed. My "alternative" docter considered maybe the myelogram caused the pain. When they do the test, they inject dye into your spinal cord then tip the table down so the ink flows towards your head, then they take x-rays. The pressure was so intense for me when the dye went up to my head I almost passed out. The x-rays basically show if any spinal fluid is leaking out of your spine i.e. nerve root avulsion. So now to my questions
#1 How many of you out there had myelograms and what country are you from?
#2 Do you think it is possible that the increased pressure of my cerebrospinal fluid could rip out(avulsed)some damaged (just stretched)nerves thus increasing my pain?

Hi I am from Ireland and when I had my MRI done they did inject some dye into me...not sure what the procedure was called tho..the nurse just said we are going to inject some dye now..keep still!.it had no effect on me. I would think they would be very careful these days about things like that as the potential for sueing would be very high. Found this website. http://www.spine-inc.com/glossary/m/myelography.html
hmm is a myelography the same as myelogram.

Hmmm....interesting questions...I personally have never had a myelogram, only an MRI and frankly, I am appalled that they still use this invasive procedure to test for avulsions. It's been proved that the test isn't that accurate, and neither is an MRI, but I know which one I would rather have. I don't think your reaction to the test was that uncommon...ask on the other TBPI board; I know at least one person on there who had this.

Have been looking thru some research articles etc about the possibility of extra fluid in the spinal column causing more damage to injured nerve roots, but can't find anything. I guess a lot of it would depend on how much fluid they shoved in there, and under what kind of pressure. My gut feeling says it wouldn't, since they have to tilt you quite a bit for the fluid to trickle towards the head? or have I got that bit wrong? Either way, I still think this procedure is barbaric.

Liz B

Thanx for looking stuff up. I know to get in to see a lot of specialist in the US thatbI talked to this test was a must have. Liz, they inject the dye into your lumbar spinal cord then tip the table about forty five degrees. They can't tip you all the way up because if the dye gets into the brain it will cause you to have seizures. You're not even allowed to lie down flat for 24 hrs or more because of the risk of seizures. I did Have an MRI done in the emergancy room, but the Neurologist I saw said it was not a good quality. When I had my accident, I was drunk. I was unconscious until the paramedics came, then I started fighting everyone off. I have no memory of anything. They strapped me down and got me to the hospital and it took three nurses to hold me down. I'm 5'9" about 135 lbs. so I'm not that big just all muscle. They had to sedate me and intabate me so I don't know if the tube was in the way of the MRI pictures or if I was still fighting people off. Funny thing to, on the Ambulance report, it said I was moving all four limbs. When I ggot to the hospital, the reports said I had less movement in my left arm. Next report, said I had no movement or feeling - this was still while I was in ICU. Anywho.. I still want to find out if the increased pressure from the dye in the myelogram could pop out loose nerves. It seems so plausable. Take a tire with a tack in it, but not leaking air. Pump the tire up a little more and it just might pop that tack out especially if it was already a little loose. It''s just a theory.
Thanx LOVE SUSAN

From what I have heard about Myelograms I would NEVER have one in a million years unless it was a life or death situation. They say it is "uncommon" to have bad side effects after the test, but several people I know were all EXTREMELY sick and in pain. One person was my mother. She had the test done a few years ago and I cannot even begin to tell you what she went though. She thought she was going to die! She had to stay in bed for a few weeks and couldn't even lift her head off of the pillow. For the next couple of years she would get major headaches that the Dr said could be from the myelogram. Her neck hurt worse after the test along with the headaches and vomiting. It was suffering for her and for my family to see. It WAS NOT worth it at all!
So my opinion:
Yes, I do think this pain is caused from the Myelogram. And as you asked, we are from USA.
And...my mom said she thought her head was going to explode during the test and for several months after.
Hope you get some answers and feel better soon.
~Krista~ (mom to Ella LOBPI 2 yrs old)

Do you want to know something f**ked up. Tgey made me sign the release forms (so I can't sue) when I was on the table, prepped, and just before they injected the dye. I was with all kinds of nurses before hand who kind of described some of the side-effects like temporary headhache. They took my blood pressure all in an office, but it was until I was ON the table IN the procedure room did they make me sign the forms. I should have known something was fishy.
THANX LOVE SUSAN

Sue,
I just had to tell you my myelogram story. Where I went to get my myelogram, the table didn't tilt. I had a broken hip , so I was in a wheel chair at the time. I had this small Asian tech doing the test. She had to figure out how to get me on my stomach so she could inject the dye. So she pulled my shirt back up over my arm and tape it. Then she rapped a sheet around my chest and arm, then taped it. This worked ptetty good. Then she had me lie on my stomach. Then she injected the dye. Now she had to figure out how to tilt me. So she went and got two guys to raise my but and legs up as high as they could. So my face was smashing into the pad on the table, and I only had the one arm to try and protect it. Oh, I forgot to tell you I was wearing a cervical collar too because I fractured C5. They held me there for about 45 seconds, then they flipped me onto my back and left. Boy, was I glad to see them leave. Until it came time to get off the table. I couldn't do it to save my life. But that little Asain lady managed to get me back into the wheel chair. Thank God for vicodin. I never did have a problem with the dye, but I thought you might appreciate my adventure. Good luck with your quest, Karl.

Karl, what are your triceps like now. ARe they full strength.

I wasn't aware of so many problem's or issues with Myelograms. That's sorry to hear. It was my first and only personal viewing of the damage done that's caused so much calamity in my life. And two of the Brachial Plexus texts books that I own have data reports on the best imaging sources, to determine the extent and specifics of injury, and compare these results before the exploratory surgery is done, to determine the accuracy and quality of each imaging system or combibation of systems (just MRI or MRI with Myelogram etc., etc.) and myelogram with a myeloram CT and MRI were the most trustworthy combo.
It was very hard for me to not have any concrete specific evidence of the extent of my injury, like x-rays are for broken bones, and my myelograms were as close as it got for me. I could see plumes of the dye pouring out of my spinal cord where the nerves had been torn out. That was the only test that seemed to give me a 'real' answer as to how much damage had happened, because every doctor I saw had different responses for every MRI I got and that can be quiet unsettling and leave you untrusting of anyone's or thing's ability to diagnose your condition. For me the pain of getting poked and injected with dye was nothing in comparison to the mental anguish of the ups and downs I went through with every doctors diagnosis, 'one nerve avulsed', 'five nerves avulsed', 'three nerves avulsed, two damaged' bla bla bla, then I got a myelogram and my eyes saw the truth.
Susan if you read this before your surgery, you may want to ask the doctor to take images of your nerves' condition while they are performing the exploratory surgery (which is the only real way anyone can determine what and how much is done). But get photos if you can, because you'll be out cold while they do it and 'a picture is worth a thousand words' and chances are you'll be lucky if you get a hundred words out of your busy doctor for the condition of it all. It is the only regret I have from my surgery. I guess I just want a mental image of state of the nerves that weren't avulsed, so I can anticipate what kind of recovery I might get and just to be sure of what 'real' damage had actually happened. Best of luck to you, you're in my thoughts.

Christopher

I wasn't aware of so many problem's or issues with Myelograms. That's sorry to hear. It was my first and only personal detailed viewing of the damage done that's caused so much calamity in my life. And two of the Brachial Plexus texts books that I own have data reports evaluating the best imaging sources to determine the extent and specifics of an injury and compares the results before exploratory surgery is done to determine the accuracy and quality of each imaging system or combibation of systems (just MRI or MRI with Myelogram etc., etc.).

It was very hard for me to not have any concrete specific evidence of the extent of my injury, like x-rays are for broken bones, and my myelograms were as close as it gets. I could see plumes of the dye pouring out of my spinal cord where the nerves had been torn out. That was the only test that seemed to give me a 'real' answer as to how much damage had happened. Because every doctor I saw had different responses for every MRI I got, and that can be quiet unsettling and leave you distrusting anyone's or thing's ability to diagnose your condition. For me the pain of getting poked and injected with dye was nothing in comparison to the mental anguish of the ups and downs I went through with every doctors diagnosis, 'one nerve avulsed', 'five nerves avulsed', 'three nerves avulsed, two damaged' bla bla bla then I got a myelogram and my eyes saw the truth (or at least a closer reality to it).

Susan if you read this before your surgery, you may want to ask the doctor to take images of your nerves' condition while they are performing the exploratory surgery (which is the only true way anyone can determine what kind and how much damage is done). And considering that you'll be out cold while they do it and since 'a picture is worth a thousand words', you would be lucky to get a hundred words from your understandably busy doctor as to a detailed description of the condition of your Brachial Plexus. Most likely you'll get an 'avulsed or not avulsed' kind of response, which we know doesn't mean diddly since there are many shades of grey that can make the world of difference as to the health and return to health of your arm or mine.

It is the only regret I have from my surgery. I guess I just want a clearer mental image of state of the nerves that weren't avulsed, so I can anticipate what kind of recovery I might have and to encourage me towards the fight I need to make to salvage and reinvigorate what I DO have. Does any of this make sense? I hope so, personal cocktail hour passed the sixty minute mark many, many minutes ago. Godspeed and goodnight, you will be in my thoughts and prayers.

Tuesday will be a GOOD day!

Christopher