Please post your myelogram experiences

[mmglobal]

I've had many clients with spinal fluid leaks generating the horrible spinal headaches after myelograms. I've had 2 clients with infections following myelograms. (That is spinal meningitis! It's serious.).

When being consented for a myelogram, the doctors are quite mealy-mouthed about complication rates. Infection is cited as as 'Less than 1%', and the severe headaches are, 'Well, we see them once in a while, but they are not very common.'

Please, if you've had a myelogram, please post:

1. did you experience spinal headache?

---- mild headache - how long?

---- moderate headache - how long?

---- severe headache (you went to hospital) - how long?

2. if you were worked up for complications following myelogram

2a. What tests were performed for diagnosis?

2b. What was the diagnosis?

2b. Corrective action? (blood patch or other treatment for CSF leak?)

2c. IV antibiotics or other treatment for infection.

3. When you were consented for myelogram, what were you told about complications, rates, etc...

Thanks in advance for the help.

Mark

PS... If you need a myelogram, it's probably because they cannot identify the source of nerve entrapment without it. It is a useful test and the serious complications do seem to be low. I'm not suggesting that anyone should decline a needed myelogram. I would not for myself and my wife just had one (without complications). I'm just trying to gain some perspective on the quoted complication rates vs. real-world experience. My experience tells me that it's greater than what is quoted. One neurologist I discussed it with suggested that I may see a 'skewed population' and that the risk of complications may be greater for people with prior spine surgery. He may be right, but I don't know anyone with a myelogram before spine surgery... other imaging tells the story and the myelogram is not needed. It was in interesting discussion.

[JeffreyD]

Mark and Friends,
My lumbar myelogram in 2006 was uneventful, though my nerves felt "amped" for months afterward.

1. did you experience spinal headache?

No.

2. if you were worked up for complications following myelogram..
N/A

3. When you were consented for myelogram, what were you told about complications, rates, etc...

Nothing at all, not by the doctor or the technician.


Later,
Jeff

[Jim M2]

Myelo 1
1981 - No Complications
1. did you experience spinal headache? No
2. if you were worked up for complications following myelogram - No complications
3. When you were consented for myelogram, what were you told about complications, rates, etc... - No

Myelo 2
2002 - CSF leak, No infections
1. did you experience spinal headache? Yes
-- had severe headache and uncontrollable vomiting (you went to hospital) - yes, went to hospital after 4 days?
2. if you were worked up for complications following myelogram
2b. Corrective action? (blood patch or other treatment for CSF leak?)
*** First Blood patch - much worse, nausea even laying down, squirming & clutching head
*** Second Blood patch (about 40 minutes after 1st) - Better than 1st patch, but much worse than before the 1st patch. They gave me some vicodins for home but I threw them up. In bed for a week. Headache persisted for 2 weeks or so.
3. When you were consented for myelogram, what were you told about complications, rates, etc... - Can't remember for sure, the tech/nurse who prepped me probably mentioned
LESSONS LEARNED: never go to Overlake Hospital in Bellevue, WA. Overlake Hospital Radiology MDs are cavalier hacks and the staff in general, even nurses and ER staff, are surly prison guards.

Myelo 3
2005 - No complications
1. did you experience spinal headache? No Complications
3. When you were consented for myelogram, what were you told about complications, rates, etc... Probably

Jim
1981 diskectomy
2003 L5S1 Charite

[Maria]

Had 2 and both times had bad spinal headaches that actually required hospitalization for one week (7 days), flat in bed even to eat, catheter in so not out of bed to urinate, and forget a bowel movement. The latter had to happen with citrate of mag (or the "bomb") as the neurosurgeon so aptly called it.

So do I ever want a myelogram again.. no, not if it can be avoided. I was told the 2nd time that I wouldn't be getting a spinal headache because what was being used was so much improved over what was used in '89 (1rst myelogram) and 2nd one was in '92. This was about as much informed consent as I got. Was advised about very low infection rate and that it rarely happened. This is right before procedure as I recall, not by Neuro ordering it.

The neuro didn't want to give me a blood patch either time altho I was told about it. Said time, fluids and lying flat in bed would do the trick and for me fortunately it did as lying there flat in bed and raising one's head just a fraction feeling like a building made of lead is sitting on your head just made me contemplate jumping out of a window to get rid of the myelogram induced headache!!!!

Diagnostics CT w/myelogram tho post procedure w/
spinal h/a admission to hospital seemed like it was a pretty common occurence or at least it was treated that way.

[dshobbies]

Unfamiliar with my amount of pain, Dr. R suggested a myelogram after returning from Germany. Never informed me about any possible side effects. Technician so advised and I refused test.

PM knew exactly what pain was and what caused it without further testing. Dr. R wasn't happy!

[LC in UK]

After one months bed rest in a London hospital in 1983 I was given a myelogram (or radiculogram) in the London Hospital for Nervous Diseases.
I was told they were using a new contrast medium "Iohexol" and that I wouldn't get a headache.
The procedure went ok except my thigh muscles felt very crampy. When I was returned to the ward I was told to drink about 2 litres of water so I wouldn't get a headache......It didn't work!
Boy oh boy was I ill. Severe headache, and vomiting every time I moved my eyes and I couldn't stand the light from the window.
Was given an injection to try and stop the vomiting and the curtains were drawn. I was told to stay upright in bed and not to lie flat. The vomiting ceased after about 12 hours but the laminectomy (my first back op ) was delayed by about a week whilst I recovered from the myelogram.
Nothing was discussed and no blood patch or I/V antibiotics given. It left me with purple shadows under my eyes and it felt at the time like an elephant was sitting on my head.
When my second back op was imminent I refused another myelogram and paid privately for a CT scan and then an MRI instead.
Anything than undergo such a frightening procedure again.

[Justin]

Hey Jeff,

Could you describe this "amped" up feeling? I have a myelogram scheduled for the end of this month. I'm suspecting you were "sore" for months, as you state. I have clinical responsibilities and I would like to know from a patient's perspective how you felt after the myelo.

Thanks for your insight,
Dr. J

Originally Posted by JeffreyD

Mark and Friends,
My lumbar myelogram in 2006 was uneventful, though my nerves felt "amped" for months afterward.

1. did you experience spinal headache?

No.

2. if you were worked up for complications following myelogram..
N/A

3. When you were consented for myelogram, what were you told about complications, rates, etc...

Nothing at all, not by the doctor or the technician.


Later,
Jeff

[Gil Denis]

I had a meyelogram in Boise Idaho

1. YES my headache did not hit me until 2 a.m.in a motel room with my family. I drank plenty of water and gateraid.I got out of bed and thought a nice hot shower would help? One hour later I was still in 911 pain.I was hoping my wife would walk in and ask me are you O.K. The reply would of been dial 911 NOW.The pain level was a 100. then I began to drinking a gallon of water while still in the shower. No help, the next step was cold shower until I started to shiver then back to hot then to cold to hot to cold etc. Over two hours later it finaly went away.

2,.Complications- are you kidding

2a, for X Rays and CAT SCAN

3, I was told I may get a slight head ache take it easy and drink plenty of water.

Thanks for a grreat time

Gil

[Justin]

Wow, Gil. Good times, good times. How are you feeling these days--are you still pursuing ADR?

Originally Posted by Gil Denis

I had a meyelogram in Boise Idaho

1. YES my headache did not hit me until 2 a.m.in a motel room with my family. I drank plenty of water and gateraid.I got out of bed and thought a nice hot shower would help? One hour later I was still in 911 pain.I was hoping my wife would walk in and ask me are you O.K. The reply would of been dial 911 NOW.The pain level was a 100. then I began to drinking a gallon of water while still in the shower. No help, the next step was cold shower until I started to shiver then back to hot then to cold to hot to cold etc. Over two hours later it finaly went away.

2,.Complications- are you kidding

2a, for X Rays and CAT SCAN

3, I was told I may get a slight head ache take it easy and drink plenty of water.

Thanks for a grreat time

Gil

[trkdoc714]

1. did you experience spinal headache?

No headache

2. if you were worked up for complications following myelogram

No complications

3. When you were consented for myelogram, what were you told about complications, rates, etc...

No. "We don't tell patients about the pain. If we did, most of them wouldn't agree to the test."

The injection of the dye was uneventful and not really uncomfortable. However, when I was turned over onto my back, the hand grenade they secretly inserted in my abdomen exploded. Burning pain began there and ran down both legs. They finally gave me 10mg Percocet after the CT scan.

I think, and my Pain Management Dr agrees the myleogram intensified the pain by irritating the damaged nerve roots.

I remember what the two guys look like and I know where they work..........

[Justin]

Hey Bob,

They did the 'ole hand grenade in the gut trick, eh? This is what I was worried about...good thing you have the slinky spine, as most people don't survive such trauma.

I know a couple of guys from south Philly that could pay those two guys a visit...

Originally Posted by trkdoc714

1. did you experience spinal headache?

No headache

2. if you were worked up for complications following myelogram

No complications

3. When you were consented for myelogram, what were you told about complications, rates, etc...

No. "We don't tell patients about the pain. If we did, most of them wouldn't agree to the test."

The injection of the dye was uneventful and not really uncomfortable. However, when I was turned over onto my back, the hand grenade they secretly inserted in my abdomen exploded. Burning pain began there and ran down both legs. They finally gave me 10mg Percocet after the CT scan.

I think, and my Pain Management Dr agrees the myleogram intensified the pain by irritating the damaged nerve roots.

I remember what the two guys look like and I know where they work..........

[nomorepain]

my first reaction is EEK !
my first experience with it was in 1979, i was told a routine test to see if my issue was with a disc or not. After a newbie tech told me i was his first for this procedure, i was not alarmed until i woke up 3days after the test with a headache where it felt i had an elephant sitting on my head, the damage was done, my L4-L5 disc was completely blown out, told i was to have surgery for the disc, but hey, it was on the house as long as i agreed not to sue their pants off..............................
my second in 2002, i was tense as heck, and nervous for a week before, tried everything i knew to get out of it, but did it with my fingers and toes crossed, and it was easy with a capable Doc behind the needle, all the worry was for nothing, but then again it usually is.........

[Justin]

Well, I go in Friday for my lumbar CT/myelo... hopefully, the dictated report isn't 4 pages long... I'll let everyone know if I hear anything new that is noteworthy to the community.