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A myelogram test is safe? Feedback pls.

AnonymousUserAAnonymousUser Posts: 49,622
edited 01/14/2016 - 9:20 PM in Spinal Injections
A myelogram is a diagnostic test in which a radiographic contrast media (dye) is injected into the area surrounding the spinal cord and nerves. This dye is then visible on x-rays, CT, or MRI scans and used by physicians to diagnose spinal conditions. There is now a concern that exposure (especially repeated exposure) to some of the dyes used in myelograms may cause arachnoiditis. Similarly, there is concern that the preservatives found in epidural steroid injections may cause arachnoiditis, especially if the medication accidentally enters the cerebral spinal fluid.

Would you go for it or think about it twice?
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Comments

  • I've had two of them. One before my first surgery and one about 6 months after it. I was never , ever told about arachnoiditis as a consequence of myelograms. :O
    I developed arachnoiditis sometime between the date of my first surgery and my second surgery, 17 months after my first one. :O
    I had to ask my neurosurgeon about it, because I was experiencing lots of symptoms of something being seriously wrong, and had no idea what it was until someone mentioned arach to me. :? I was furious when I found out, both because I was never told that it was a possibility, no matter how allegedly remote, and secondly because according to my neuro, they don't say that it is there , because it is caused by tests that they order, therefore, there is some liability to it. I was also told by a radiologist, that unless the doctor specifically asks for it in a MRI or a CT scan, that they don't include it as an incidental finding , again because it might make the doctors mad, and might lead to liability issues for the doctor....isn't that a bunch of garbage???? :? :?
    I had a selective nerve root block and a caudal esi. I asked about steriods and whether they are safe or not around the spinal nerves and was told yes, they are. I was also told that steriods injections do not increase blood sugars, which is an out and out lie. They certainly do increase blood sugars. I found out from real life experience. When I went back , and told them that the kid who assists with injections flat out lied to me, I was told that there is no way that he would have said no, until he got called into the room and he admitted that he did, in fact tell me that. :sick:
    My long post is to point out, that sometimes we are not given the correct or complete information when it comes to these "treatments". It is up to each one of us to do our own research to find out what a test/injection is all about, what the possible risks/benefits are, and then to make an informed decison about whether or not to go through with them.
    I have to live now , with arach, along with CES and a few other not so nice problems to deal with, all stemming from my surgeries. I would not have the myelogram again if I knew now , what I should have known then. I think that there are a lot more like me, who have gone into a test because our surgeon thinks that we should, and are not given a true "informed consent", and come out of those tests, with more problems than we had before we had it done.
    Sandi
  • many procedure are done and patient are misinformed or not informed about pro-contro in order to take decision with knowlege and choice to go or not for it.

    Sorry you now live with arch too.

  • I have had 3 of them done and was never given any sort of warning!!!!! :jawdrop:
  • I had a Myelogram before my 3 level 360 surgery in Nov. of 07. I don't know if I was lucky or what, but it did not hurt at all! I was looking at the monitor and I looked at a needle going inside a spine and I asked the Doc if that was me? and he said yes! :jawdrop: All tests and surgeries and treatments have a level of risk, but so does life! So we need to do what is best for us and make decisions for our health care that might be difficult ones........ Just need to make sure that the anesthesiologist that is performing the Myelo is experience, the rest is almost a pot luck thing for all of us. Now a Discogram, that is a doozie! But survivable too! ;) Just make sure to read the consent form carefully before any procedure and do not sign if you have any doubts,then ask the Doc that is going to do your procedure what this or that means, don't sign stuff without reading it! seen that before and is not a good policy!!
  • you know the risk what 'if' you have to have one more, what be your decision?

  • problem is that 'usual' risk are on paper not all like arch.

    or dr give you simple paper consent to do test and tell verbal risk (minor of curse)

  • But I needed my Myelo to get better and to diagnosed me, we can either learn to trust some on the medical community or we don't! I know that I could haver never helped me surgically or medically, so I trusted a Doctor that I thought would help me out, then my bubble burst and I had to fired him after 2 surgeries, but now, I have found 2 of the most amazing professionals my new NS and my PM Doc, sometimes we need to put faith in our decisions and go from there....... is not easy, but a well educated and informed patient is better than a blinded one.
  • Basically, it would be impossible for a Dr coducting a test to tell you every single thing that might have a small chance of being a side effect from a procedure. I have done quite a bit of research on this topic, and these studies for the most part are very small and in the infant stages of study.

    Imagine the paperwork if they told you every single thing that could happen. People would not go to get these done, not out of fear but dreading reading 200 pages of possible side effects.

    Basically it boils down to the fact that your Dr feels that even with the associated risks, it is of more benefit to your health to have this procedure then to not. It provides a great roadmap especially pre-surgical. If we didnt do anything because there were risks we would all be in bubbles.

    Decide for yourself what is best, but my opinion is that you want the most information especially when considering surgery. This test provides that!

    Mark
  • I agree with Mark. All medicines and tests have some risks and side effects. I would rather take a chance on some miniscule risk than have the surgeon mess up my operation because he doesn't have all the diagnostic information needed. Stop doing so much research and driving yourself crazy. Just do it!
  • Millie -

    Great point, your future health could be dependent on having this test done. Waiting too long or not having it at all can have serious consequences. As you said, sometimes we have to have faith that our best interest is being considered. There are very few quacky doctors out there that will knowingly put you in harms way. The majority are very caring giving people that truely want to make people better.

    I know for me, if my doctor says it needs to be done there is no question in my mind that he knows it is the right thing for me. I am in a unique position where my wife actually works with the Radiologist that gives me my injections (strange thing is he had done them in the past on me at another clinic years ago and remembered me at their company party 2 Christmas's ago. Thats how he started helping me again). I know he gives all his patients Grade A service, but knowing me personally I get the same service his father or mother would get.

    I think people hear horror stories of doctors and always want to think the worst. Bottom line- If you dont trust your Dr. Find a new one!!!!

    Mark
  • We are all guilty of it now adays with the internet we all research everything to death. Sometimes you just have to jump in the pool with both feet instead of testing the water with your toes :)
  • It's all good when you don't wind up as one of the ones who develop those "complications" that they forget to tell you about, but it's a whole other story when you are the one who does. :O
    I would have liked to have known that it was a possibility, however remote. And they are finding that even with the new dye used for myelograms, many people are developing arachnoiditis anyway, despite it allegedly being "safer". :sick:
    For me, being told that esi's will not cause a raise in my blood sugar, led to me getting the injections. It also led to my having to increase my blood sugar meds because it did cause , not a minor raise, but a large one that could have caused more problems for me. Those little "details" that are left out,can be very, very important for people like me, with underlying conditions to know. :(
    Arachnoiditis is not a unusual complication, and as far as I am concerned, it should be listed on the consent forms as a possibility. It can also come from esi's, but it's not listed on those forms either. It does not tell you on the forms for esi's that the steriods are contraindicated for use around spinal nerves and that it can cause major problems, and it should be.
    For many of us, we like to weigh the risks of a procedure before we have one and with holding information that would factor into our decision making process is wrong. Period.
    I'm glad that some of you have not experienced the negative side effects of some of these procedures, but for those of us who have, I am left wondering what I am going to do to deal with this pain caused by something that I had no idea could happen. :(
    Sandi
  • you say all "For many of us, we like to weigh the risks of a procedure before we have one and with holding information that would factor into our decision making process is wrong. Period."

    I turn to silence.
    Dont like lose time with deaf pple 'know all'.

    good luck sandi.
  • Thanks. It's easy to say , don't look things up or ask doctors to be responsible for the procedures that they want us to undergo, or ask too many questions, until someone winds up having to live with those consequences.
    Sandi
  • I just had to go and look for myself. I googled and this is what I found. Do we have an English Expert out there? I've been told that pressure or a headache was the side effect. Now I've had the 1 myelogram but; does this have anything to do with any of the other DYES, or Steroid injections(all 13 of em)?
    http://en.wikipedia.org/wiki/Arachnoiditis
  • DwDarling,
    Yes, arachnoiditis can be caused by a myelogram or by epidural steroid injections, or what is called a bloody tap.
    And it is not "curable", however it is supposed to be "treatable" meaning that the patient is left hoping that they will find a doctor who will help manage the symptoms.
    I went from a walking, heavily active in my community, mom of 4, and busy wife and mother, to a wheelchair bound, pain riddled person because of that "little complication" that the doctors forgot to tell me about...and I'm not the only one that it has happened to.
    All I'm saying is that doctors should be made to reveal all of the complications that can occur during a procedure. One that might end you up in a wheelchair is a pretty big little complication or "side effect", but unless it happens to you, it shouldn't matter.
    I trusted my doctor, sought out the "best" in my area, and still wound up with this.....and much more.
    It is one of my pet peeves that we aren't told about the possibility, no matter how remote it might seem , since if it does happen, we are the ones who will have to live with it.
    Sandi
  • I had one but later developed a MAJOR headache that was a terrioble trip to the ER room. I showed up at hospital around 7am and filled out all of my paperwork signing everything execpt death will. lol Anyway, finally got back in my room around 9:15am they started the IV which took almost an hour it self due to me being dehydrated because they tell you to stop eating and drinking 8 hours before your appt. Well it took them 5 times to get my an IV started, which I think was funny due to them fussing about me being dehydrated and all. I went back around 11:30am and they asked me to get up on this table and lie flat which I couldn't to much pain in my back, but I was sedated then I found out I could lay flat for sure. He started numbing up my back and I was able to watch him all the time on a small screen to the right of me. I was tilted from head to toe bunch of times I thought I was going to get sick, I have motion sickness real bad of course they took care of that too. I was in lala land for the rest of the time and remember being taken to the CT room where they asked me to roll over like a dog a couple of times and roll back over onto the CT table all the long you can't pick up your head nor try to raise your body up they will tell you to stop. They took pictures and told me to hold my breath for a moment for something or another don't know why but I fell alseep and didn't care what they done with me I was pain free with all of the meds they gave me. OH yeah! I do remember them getting me to roll back over like a dog onto my bed where I passed out and slept for about 5 hours. I woke up when she was taking my blood pressure and vital signs and she asked me was I hungery I told of yes I was. They had my lunch/supper ready for me then I was off to home. Time 6pm When I was able to sit up for a couple of moments I started getting those headaches they talked about all during the procedure they Warned!!! me about! I was giving some more meds and waited for 30 mins then was able to go home but later returned to another ER for the MAJOR headaches I gotten. When I got home I felt ok not great but ok and thought I could sit up for a couple of mins then I was going to bed and sleep the rest of the night. I was little bit worried due to still having the headache but they said to watch it and don't let it get out of hand. Next day, I woke up with an elephant stomping me in the head. That is what it felt like to me.. Grandmother got me some headache pills I took them and they didn't do anything for me. I waited couple of hours before calling the dr back to ask him is their anything else I could do. Around 4pm I went to the ER room crying my eyes out with my blood pressure 170/100 they told me to wait in the waiting room until my name was called sure. I was in so much pain with my head I though if someone cut if off I would be better. I fell in the floor of the waiting room crying and telling them to cut the lights out for me please, finally they got an nurse to come get me and take me back she asked was I drinking or had been drinking. Stupid question that was. I couldn't hardly speak or move they touched me I screamed at the top of my lungs. I was giving toradol which I found out the hard way I'm allergic too. OOPPSS the nurse said she needed to get the dr back in the room, while I was laying their seeing GOD knows and feeling these horrible creatures crawl all over you then I started not to breath, they rushed the ER doc back changed my pain med to something else and was asked is my headache better? I told them that the Dr over at the other hospital told me I might needed a blood patch he said no you don't, I told him yes I do! I spent most of the night in ER waiting on the blood patch they told me to come back in the morning for the surgical doc. I was so upset and didn't care at that moment I just wanted to think straight. I was giving three shots before I left along with a caffine bag then discharged. I was giving two high dosaged pain meds that I wished I could have now with the pain I'm in, but when back for my blood patch.
    Sorry I wrote so much I think I try to get every little detail in. I was warned about those Spinal Headaches taht you could developed after a myleogram test. Most people don't get them just a few do.

    Don't get scared of my experience everyone is different on body is the same!!!


    Misty
  • I had a myelogram when I was hospitalized a few hours after having the myelogram I had started to get really bad spinal headaches they gave me morphine for 3 days as they thought it was just headaches they then did a ct and discovered I was leaking spinal fluid they had to do a blood patch that was not fun @ all.

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