mylogram
 

Hi,
One of the neurologist wants me to have a mylogram done to rule out my hands and feet symptoms are not from neck and back although my MRI for neck and back have reviewed no compression to the nerve roots except for herinated disc. Actually, my repeat neck MRI revealed no change from the previous one that i took prior to the RSD symptom. I am very afraid to have any needle stick to my back especially i suspect that my RSD has moved to my back after a very traumatic nerve block done several months ago.
Have any one of you had mylogram done and did it reveal any new information that a MRI did not reveal?
Please inform,
Numb

Without any knowlege of what your neurologist is looking for, in general, you can get almost the same information from an MR myelogram as oppossed to a formal myelogram. A myelogram involves the introduction of contrast material via injection to "indirectly" show nerve root or cord compression. It is usually only reserved for emergant pre-surgical conditions or at least ones where there are significant questions about the eitiology of the neurologic compromisation and more information is needed.

I'm so sorry you're going through this. I understand what it feels like to be a human pin cushion, each injection causing fear or spread and pain. I completely understand your fear of spread, and would recommend against any needle stick in an area where there is an active flare, unless it is life or death. Do your doctors understand your RSD and are they assisting in treating it??? or are they only interested in disproving it suggesting it is all due to your neck and back??

You are your own best advocate. Do not feel badly about getting a second opinion, preferably with another doctor that is familiar with treating RSD. If you MUST have the test, I would ask that special precautions be taken to ensure your comfort during and after the procedure. Have them numb whatever area they're working on, request a sedative or an anxiety med beforehand to keep yourself calm, and do not feel badly about doing either. Explain that RSD patients are not like normal bodies. We have a disorder of the sympathetic nervous system. Anything that causes us pain or anxiety turns on that sympathetic nervous system and increases our pain out of proportion to a "normal" response. That's why they call it a "disorder" or "syndrome" or "dystrophy".

I wish you well and hope you get the proper treatment you need. Please keep us posted on your condition.

Thanks, Dubious, for your excellent description of the myelogram!

I've never had a Mylogram so I can't help you on that unfortunately however I do agree with what MomInPainRSD said about trying to avoid having a needle injected into an area that is suspected to have RSD!

I have had one nerve block done and my Pain Management Doctor injected directly into my leg that has RSD which you should NEVER do unless you absolutely have to! Unfortunately, my Doctor didn't know that at the time and went ahead with the procedure and I developed some pretty serious complications! I was left wheelchair bound for 13 months and everytime I tried to stand up, I would just fall to the ground as my legs would give out in front of me - I had lost total co-ordination in my legs!!! It was only when I had the nerve block and developed the complications that my mum found an article on the internet stating that you should NEVER inject directly into any limb that has RSD unless it is absolutely neccasary (ie, for life saving treatment) as research has proven that it can make things a lot worse!! My Doctor wont do any more nerve blocks now and we have also informed doctors about what happened to me so that they are aware and hopefully, no one else will have to go through what I did as it was REALLY horrible!!

IF you have to have this procedure done, I would definitely speak to your Neurologist and make sure he knows exactly what RSD is and also ask him if he is going to take any precations and what exactly the procedure involves. Most doctors when having to inject into a limb that has RSD will use a lot of anaesthetic and will use a really fine needle to try and help combat any spreading.

I hope I didn't scare you by what happened to me with the nerve block - that was never my intentions, I just wanted to let you know what has happened to me so that you are aware of the situation and know to be wary. I understand your fear of spreading and I am ALWAYS scared now when I have to have any injection (even in my limbs that don't have RSD)!!

I wish you the best of luck and I know you will make the right decision as you know your body better than anyone else. Please keep us all updated and I am thinking about you!

Hi Ali,

Thanks for the excellent precautionary personal experience. You are always so informative and willing to share all that you have been thru, including the sad loss of your grandpa. I'm always thinking of you on the other side of the pond.

We have one daughter, almost 30 now. We were married 12 years before she was born. Her name is Laura. She is medically knowledgeable and has done a lot of research on RSd, especially after she did a desposition of RSD (court reporter) We are close and she and her husband help us a lot. They just moved in with us two months ago, coming back from a year in Chicago. We live in Arizona now.

I love the way you share information, but never push one way or another regarding treatment or medication. We certainly are all different as to reactions to treatment and meds, yet all suffer in so many of the same ways.

I'm especially hurt you have this at such a young age. Your maturity speaks for itself. Take care and love to your Mom, Loretta

Thank you so much Loretta for your kind words, they mean a lot to me :hug:!

I'm SO glad that I am able to help you even if it is just in a small way, it is pretty hard trying to open up to people at times but I always think in the back of my mind that by opening up to people, I am telling them what worked for me and what doesn't and I am hopefully warning them about the complications that I suffered from so that they are aware and know to speak to their doctors about it.

I've learnt so much about RSD since I was diagnosed and always try to research about it as much as possible, like we all do ... I figure that without research, you aren't going to know anything at all. It's hard and scary at times but I would sooner know what to expect then not to.

I want to be a Psychologist when I am older so i'm glad that I am able to help you all, even if it is just in a small way. I feel that forums like this one have helped me a lot and I think they paid a big part of me wanting to become a Psychologist. I am taking my Options this year which is basically where you pick what subjects you want to do in the last 2 years of school - everyone has said that I would be a good Psychologist and it really helps me!!

I'm SO glad that you have a supportive daughter - it helps a lot having someone that understands what we are going through somewhat and try to help us. I don't know what I would do without my mum; she has helped me through a lot of the really tough times and I think I would have probably given in before now if it wasn't for her!!

Thanks again for your kind words, I really appreciate them and if you ever want someone to talk to, please know that I am here for you!

Dubious, Mominpainrsd and Ali for your response. This neurologist wants to rule out my symptoms are not from my back or neck because he said i had a deep indent in my spine in my lower back and a active reflex of my legs. When i saw this doc, my RSD symptoms are not obvious. I suppose he wants to be thorough. I did consult my pain management doc and physical rehab doc, both of them did not recommend it. So for now, i will put this off.
Thanks so much,
Numb

I would put it off unless the consenses is universal. Something doesn't make sense. Myelograms by nature are not without risks. Superficially, makes sense to consider a myelogram, if surgery is eminent, based on what what you say about a deep indent in your spine around your lower back. Except for one problem: the spinal cord ends at L1, roughly, so root compression below that level (the rest of the lumbar spine) would cause depressed or absent reflexes of the lower limbs, not "active" (I assume you mean hyperactive). If you had cord compression above L1 (central cord issue), then hyperreflexia makes sense. It is really only the dinosaurs from the paleolithic era that still order myelograms because they don't believe the MRI's. Maybe change neurologists?

Question for numb
 

Were your MRI's performed without & with contrast? If not, it is very likely that the mylogram can reveal details not seen on the other tests.

Also, I have the following link that may be helpful in informing you about what the difference in a CT, MRI, & CT Myelogram.

http://www.mayoclinic.com/health/spi...-and-diagnosis

I had a myelogram before having surgery in 2003 (cervical fusion C5-C7). As with all invasive procedures, there are risks involved; but mine went off without a hitch. The only thing that I would caution you is to be sure to follow instructions so as not to increase your chances of developing a crushing headache after the test.

Best regards,

:cool: EJ

I think I would disagree. A contrast MRI is a useful procedure if a patient has had a prior surgery AND further surgery is a potential issue because you want to differentiate between recurrent disc herniation or other pathology like post-surgical adhesions and scar tissue. Gadolinium (contrast) will help with differentiation.

The key technical difference is that a CT (better for bony lesions) myelogram will "indirectly" show a disc herniation, tumor or other space occupying lesion by virtue of a filling defect where an MRI (better for soft-tissue lesions) with or without contrast will "directly" show a disc herniation, tumor or infection with much greater clarity and resolution than CT or CT myelogram.

There is nothing in the Mayo link that expressly prefers myelograms over MRI's for space occupying lesions or the use of contrast for that matter. Depending upon what the clinician is looking for, it is very unlikely, most of the time, that a CT myelogram will show more than an MRI, with or without contrast. While kejbrew had a good outcome with myeolgram for their fusion, I had a C5-6 fusion with only MRI, no contrast, both of which are the "standard of care" for surgical disc herniation or most compressive disorders and also had a good outcome. In almost all applications, CT myelogram just simply isn't necessary, is risky and most of the time not ordered (for good reasons!). It does have isolated indications though.