[Kwag_Myers]

I've read up on the procedure, I'd just like to hear from anyone who's had one (please).

[Kwag_Myers]

Well, I can’t tell you how many times I’ve Googled something only to find a post in a forum by someone asking the same question and there are no replies. Soooooooo, I’ll answer my own thread for anyone who may stumble upon it.

All my research, both on line and asking questions of the various medical staff I spoke with, led me to believe the myelogram takes about one hour. BULL! We arrived at 11:30 AM and left the hospital at 7:30 PM. Add in a 90 minute commute and it makes for a very long day.

The description on WebMD is fairly accurate with one exception – they use a real-time imaging system for positioning the needle (good thing, too, or I’d still be there).

The toughest part for me was some cramping in my thighs. The doctor who performed the procedure warned me of this, and it really wasn’t too bad until they inverted me (about 25-30 degrees). I thought my thighs were going to explode, and then I started to get a headache – sudden and intense. They only had me in that position for a few seconds for the dye to run down into the cervical area. The actual test took over two hours.

Then they wheeled me to get a CAT Scan. I waited for over an hour. After the CAT Scan (this is good) I had to wait to be taken to my room. Excuse me, I’m outpatient. Doesn’t matter. Apparently, a nurse must release you and they can only do this from an actual ward room. They check to make sure there are no ill side effects.

And then they give you the discharge routine. Complete rest for 24 hours, no driving, operating heavy equipment, etc. for 48 hours. No one told me about this, so I had to call my boss and tell him I’d be out for another day. Oh, and you have to sleep with your head elevated to make sure that the dye doesn’t go to your head. I guess it can cause seizures.

It’s the morning after and I feel find. My back is a little more stiff than usual, but I’m planning to go to work tomorrow. So, if you have a myelogram, I hope this helps.

This post has been edited by Kwag_Myers: 26 August 2008 - 08:08 PM

[disjointed]

I am curious to hear more about myelograms, too. I was going to have one, but then I read up on them -- long-term side effects. I have enough problems in addition to the mechanical and pain issues of my spine condition (including vertigo and nausea when my C3 goes out of whack) that I didn't know if I wanted to deal with those additional side effects. I can't remember specifically what happens after myelograms, but it has to do with the dye remaining in the spinal fluid for years following the procedure. I do have epidural steroid injections, so it's not that I am afraid to have invasive procedures; and, these injections are the reason I became functional again after years of being basically bed-ridden. It's all just a matter of balancing the risks and potential benefits of every test or treatment.

Instead of a myelogram, are there are other lower risk studies you can have done? What are they looking for specifically (any suspected diagnosis)? How about MRI with gadolinium -- that dye is injected via IV and flushes out of your system. I am going to a chiropractor soon who does very thorough x-rays and has them processed with a special software that shows exact measurements and alignment issues (unlike the usual look-over by a radiologist). I am also cautious in terms of not allowing the chiro to do any cervical manipulations (--which has often been suggested to me).

Also, have you had a DMX (Dynamic Motion X-ray)? While laying down in a CT or MRI tube, my vertebrae line up nicely, but in motion you can see how messed up the ligaments are. At the time I had my DMX (about 6-7 years ago), this test was only licensed in a few US states. I would imagine it is more widely used now.

My main advice -- don't take someone's word for things if it doesn't add up. If you don't advocate for yourself, you may not get the right diagnosis and may even get the wrong treatment which can cause you further damage. Take it from me! I've suffered with not only worsened spinal problems but also cardiac problems because of what doctors have done to me. Use common sense, research things thoroughly, ask a lot of questions, and make sure your healthcare provider is on your side -- not rushing you in for unnecessary treatments/surgeries, not dismissing you because you are not a cool teaching case, etc. etc. And God help you if you "look fine" on the outside. You'd think people who graduate from medical school would have a deeper understanding of the body and not make assumptions based on appearance, but alas!

[Kwag_Myers]

According to the doctor who performed the procedure, they’re using a new type of dye that minimizes any side effects. And, as I mentioned, I was examined by a nurse before being released. My wife said she noticed an arm band with the words, “Fall Risk”. If I hadn’t been able to walk from my bed to my wheel chair, there’s a pretty good chance that I would have spent the night there.

The reason this test was prescribed is because my injury location is T12, but my symptoms are more like an L5 injury. My recuperation was relatively fast until I reached the point where I am now. Then, everything stopped improving. After a year, the doctors told me that I probably wouldn’t recover any more function. But I still show signs of some recuperation. So, they did the test to see if there are any pinched nerves, etc. preventing any motor or sensory function from returning.

I’ve never had the DMX, but the real-time imaging system they used for my myelogram allowed them to take images in various positions. They also took a series of x-rays in various positions focusing on the thoracic and cervical areas of my spine.

[disjointed]

Ah, very interesting that they are using a new dye. Good to know.

Sounds like the DMX is probably not necessary given your type of injury. I'm glad they were able to take images in various positions. Keep us posted on your results and prognosis!

[Darkghost]

I had a myelogram way back in 1984,found it not too bad although was told to sit upright for about 6 hrs as if I lowered my head I was advised it may cause extreem headaches.....guess I was lucky no other side effects

[qbounce]

Hey Kwag,
As you're well aware, don't EVER listen to the doc's when they say your prognosis is as good as it's going to get!! Especially since your injury's still reasonably fresh. I had the MRI, MRA (for Arteries), and an angeogram done recently, all with different dyes. The angeo was most similar in time to your test, but still not as extensive.

I felt your pain when you originally posted this. Hope all's well.

[Kwag_Myers]

I just got the results and there's really nothing abnormal as far as the neurosurgeon is concerned. I’m a little frustrated because my injury is at the T-12 but my paraplegia is more like an L-5. I had some trouble with a degenerated disc at the L-5 before my SCI. I guess I was hoping they would find something there that could be fixed.

It just doesn’t make any sense to me. One doctor says CES, the other says no. It’s really hard to explain it to ABs when you don’t understand it yourself.

[qbounce]

When the results came back from the tests (posted earlier), the report drawn up by their doctors completely missed a huge, and obvious to the naked eye, Deep Venus Thrombosis--blocked vein. The report listing everything as "NORMAL" has become the only report in my file to date, even though 2 doctors since then, and an angiogram, say otherwise.

I guess I'm saying second opinions never hurt. I'm sure they looked for a tethered cord and a syrinx, right? I've been told the syrinx, even though more prevalent in SCI aren't always easily seen.

Oh, if you DO decide to opt for a second opinion, DON'T bring the other doctors written report, just the disc/ films. I did both for a second opinion right away (before my insurance covered Neurologist saw me--my doctor referals took forever, so I tried to do my own proding), and of course THAT doctor read the report FIRST, then glanced through the discs for 5 minutes and appologized for not being able to help.

So, although second opinions may be worth a try, not skewing the new doctors results with previous reports and info, or lack there of is something to consider.

Be well~~

[Kwag_Myers]

qbounce, on Sep 7 2008, 08:05 AM, said:

I'm sure they looked for a tethered cord and a syrinx, right? I've been told the syrinx, even though more prevalent in SCI aren't always easily seen.

I'll have to look into that when I get home (currently visiting my daughter).

[qbounce]

Good luck, and your new icon's a hoot!!