Please post your myelogram experiences
 

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.

my myelogram
 

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

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

re myelograms
 

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.

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!

myelogram
 

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.

I had my radiculogram in 1982 at Hammersmith HOspital, London. (Those were the days before MRIs). I was told I must not lie down for 12 hours in order to avoid a headache. Unfortunately, despite following instructions I had the most appalling migraine of my life - my head continued to thunder and i continued vomitting for over a week. I went into my laminectomy more concerned about my head than my back! In retrospect I think my back was easing up, but I was incapable of thinking, let alone having a discussion about it. Never, ever again.

1986. Regina Sask Canada. I was 18.

1. severe headache, one, didnt dare move my eyes! week two severe when standing only.

2. No one told me of the headache following the Mylo or do I recall a work up.

2a.

2b. herniated disc found l4-s1. They than did what I think I remember as a procedure to shrike it, Cymopapian. (spelling?).

2 c. No need for IV antibiotics or other treatment for infection.

3. I wasnt informed of the complication. However my Mother warned me that I should be aware I could be out of action for a while.

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

Holly Headache.
 

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:mad:

Gil:)

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

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..........

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...

Dr. J
 

Great times.;)

Yes i am still looking into ADR Or fusing my L5- S1 and see how the other levels hold out.
I hope med technology improves before they blow up.:eek:

Good Luck:eek:

Gil:)

Dr. J,

The two guys from S Philly sound good, but I'm going with local guys, Bubba and Cooter. It only cost a bag of BBQ pork rinds and a 6 pack of PBR. After all, we are in a recession.

How is your sciatica? I'm hoping your surgeon gave you some insight on the cause and, more importantly, a cure.

Bob

Recent Myelogram
 

Hello,
I just had a myelogram 4 days ago in 3 areas, lumbar, thoracic and cervical. I had absolutely no headache and so far the only problems I have had is the feeling of very tingly irritated nerves becoming slightly worse today. It sounds like amped nerves to me. I did not have any infection (yet), but have also had seasick vertigo type feelings. I've tried zofran, zantac, and tums. What has worked is benedryl (thank goodness).

Last time I had a lumbar myelogram (april 08) there was no headache or infection but I had to take prednisone to calm down the pain in my nerves.
Phylly

Hey Bob, my legs are still giving me trouble and by trouble, I mean hell.

Phylly, thanks for posting your myelogram experience. It sounds like you are doing well. I'm curious as to what expect in regard to nerve pain after the myelogram... it doesn't sound too bad. I have a certification exam in April and I really need to study without being distracted by leg pain.

Thanks again! :) BTW, how are you feeling?

oooooahhhh mylegrams
 

:eek:
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.........

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.

Hit the Shower
 

Hi Dr J
God luck and hope it goes well.
Drink Gatoraide and water

Gil:D

Justin,

Keep your eye on the guy with the hand grenade. Take your own pain meds in case they forget about you for an hour or so.

Good luck, I hope it shows you what the problem is and that it's something easily treated.

Bob

in myleogram hell now
 

Had CT myleo on Monday,

When I asked doctor about complications, side effects etc. He said menigitis but rare, and shrugged his shoulder and said the word headache as if to say it would be no big deal. I have to admit that I had read enough to know otherwise but decided to have the procedure anyway.

Headache developed by Tuesday morning.

Its so severe in the am that I have to crawl to the bathroom. Can't take my puppy for a walk, need my husband to stay home to watch the kids.
Had to cancel my 40th bday party on Saturday which a friend put a lot of time and money into. Not that any of this matters - just explaining the severity

Headache subsides a bit my mid afternoon.

Nurse said its my choice to come in for blood patch or endure.

Not sure what to do, I can't take anything worse.

I am so over being a spine patient. Its neverending.

Justin,
Good luck on your myelogram on Friday. I sincerely hope you have no side effects. I've had 3 and 2 went well and the other I had to get a blood patch and that took care of the issues.
Best wishes,
Linda

Thanks Bob and Linda. Myelogram went well yesterday (no grenades!). I have a very minor headache today. I've been drinking plenty of fluids... I should have the dictated report on Monday.

I hope you feel better Cheryl.

Justin:

I'm interested in what the report has to say about your troubles that you have been having. I also had a headache from a previous Myelogram. They had me in the hospital overnight, for the procedure, and had my bed at an angle to keep it from going to my brain. The next morning, I told them what a waste of a hospital bed it was and, they kept me awake all night :mad:. As soon as I stood up, it felt like someone had hit my head with a sledgehammer. Ah, the fun stuff we get to experience. :D

I hope you are well. I am getting ready to bring the patient home.

Terry Newton

I've had 2 CT myelograms. No serious problems after them, but the first one was a very painful procedure. It was performed by a resident who had a very difficult time getting the needle past all of my scar tissue, bone spurs and hardware. It took him 3 separate attempts and 3 needles. I was about as miserable as I have ever been for almost an hour. Luckily, no headache afterwards. I do remember being warned of the possible dangers/side effects. The nurse I had was wonderful! She advised me to drink caffeinated beverages and keep my head down for 8 hours post CT. About a year later, when my dr. wanted another one....I called ahead and insisted that I needed an experienced dr. No more residents for my poor spine! They got to practice on me once...but not twice! The second CT myelogram was a piece of cake compared to the first one...and again....no headache and lots of caffeine and rest afterwards.

I'm curious. My doctor wanted me to have a myelogram when I got back from Germany. One of the reasons I didn't was because the place doing the procedure was a diagnostic center. As soon as it was over, I would have had to get up to go home. I wouldn't have been able to keep my head down until I got home. Would that have been too late? Does it really matter?

Thanks, Dale

Dale,

When I had mine, they cautioned me to keep upright to avoid headaches. It was done in a hospital but as an outpatient. They released me about 2 hours after it was over. For some reason they recommended coffee and had me drink 3 cups of hospital coffee. I guess they didn't think the nerve irritation was enough discomfort so they thought they would offend my taste buds and top off my bladder.......

Bob

Hey Terry,

I had a minor headache all weekend. Then, on Monday morning I woke up to the pleasant feeling of excruciating pain in my low back and legs. I got a dose pack from my PM doc on Tuesday, and I still feel awful. I just want to curl up in a ball and cry.

I'm getting a massage to help "knock" some of this out of my system. I found a really great deep tissue masseuse that is the best I've ever had -- even better than Bora Bora!

I'm praying for relief...I feel so debilitated right now, and, of course, I have a ton of crap going on. arrghhhh. :mad:

PS: how is your wife?

Justin,

Sometimes those hand grenades have delayed fuses. I hope it subsides soon. That was one of those intense pains that made me wonder if something more serious was wrong. I even had a colonoscopy (I made the gastro doc buy me dinner and a movie first) to make sure it wasn't an intestinal issue.

Bob

Justin,

You're hoping your head won't provide you with a death wish, only to have the pain explode in your back. You can't win! I hope the massage works. After my 3 level, I was told no deep tissue massage in that area.

Wishing you pain free days... and nights! Dale

Justin,
I am so sorry that you are in pain from the myelogram. I also had to take a medrol pack and it really didn't work right away, it took about a week for the full effect so hang there. I hope that the test will let you know what is wrong. You may have the report by now and I hope it is not too serious. I wish for the best for you. I am so scared and having my surgery this Tuesday. Please let us know what is going on with you so we can send lots of E-hugs over.
Phylly

Justin,
I'm so sorry to hear that you are having so much pain and hoping and praying that you will be feeling better quickly. Let us know what is going on with you. I'll pray for you. Hang in there.
Linda

Bob, Dale, Phylly, Linda, et al:

Thank you all for your kind words. This has been a really challenging week for me pain-wise. The deep tissue massage was very helpful, and got me through the last day and a half pretty well.

However, I hit a brick wall today. I'm still in my 20's and my back has been through major trauma, 2 surgeries and things are looking grim once again. Don't get me wrong, I am very thankful for the health I do have--it's just hard to think down the road 10, 20, 30 years from now.

Once your health is compromised or "taken from you," your outlook on life changes drastically. I know mine has changed over the last 15 years living with spine problems...there are days I wish I could go back and never put on that football uniform.

The past is the past, but I will admit that I've asked myself this question a lot lately: "What would my life be like with a normal spine?" I refuse to entertain an answer because deep down I know 9/10 days would be better...

Justin,

I hope relief comes your way soon. I've been dealing with back pain since 1983 when I was rear ended by idiot in 1971 Buick LeSabre (voted drunk driver car of the year 4 years in a row) that folded my car in the shape of a tent. That was followed up by a head on with a drunk in 1986.

I have a very high threshold for pain. I've taken as many as 12 sutures without anesthesia on a few occasions. I was at work the day after the Buick collision. I have NEVER experienced the kind of pain as I have in the last 3 years from the back problems. This is the first time I've had to take opiates for pain. It never seems to end and with the limitations of the doctors I've seen, no end is in sight.

The things that keep me going are my wonderful wife, my beautiful 2 year old son, my grown children and grandchildren.

These great things I've been blessed with are well worth any pain I have to put up with. I had a great example when I was growing up. My Grandmother was an arthritic cripple since she was 9 years old. She raised 5 kids (one of them mildly handicapped), helped raise some of her grandchildren, always had a clean house, hosted Sunday dinners beyond belief and prayed every morning and night for her blessings. I never heard her complain once that her fingers, toes and joints were almost useless and constantly giving her agonizing pain.

I completely understand your agony and wish a miracle could happen for you to be healed.

The great thing is that even through all of this, you continue to offer support and knowledge. When you become a practicing physician, you will be a great one. You'll be able to understand and treat with deep compassion patients like us that have constant pain. I have every confidence you will be an integral part of a breakthrough treatment to relieve pain via a procedure or cure for your chosen field.

Maybe God chose these afflictions for us to help us appreciate life. I truly believe He doesn't put more of a burden on us than we can handle and you've been a great example for a lot of people, both in person and on this (and that other) forum.

Keep the faith Justin. This too will pass.

Bob

Hey Bob,

Thank you so much for your support and kind words. You sound like one tough SOB. ;) My father-in-law always comments on how I should have been Catholic with all the self-penance I put myself through.

Anyway, your Grandmother sounds like she was an incredible person.

Thanks for your post...yesterday I was in a "funk" with my pain. I truly appreciate the life that God has given me and the trials and tribulations I have been through, as I know they have shaped me into the person God wants me to be. I do look at my surgeries and car accidents of the past as opportunities. However, there are days like yesterday where it's easy to throw in the towel when you are feeling like crap.

This too will pass, indeed. Thanks again Bob and I will continue to pray for you and your wife.

Life is truly beautiful. :D

Hey Justin:

I've been busy with the; "Little patient" lately so I did not notice your post. Elizabeth is a much better patient than I am and she is doing fine. She has happy pills that are making her disposition tolerable. It's hard for her to laugh though, which makes it difficult to live with me. I am a constant jokester so, it is so difficult to be serious around her.

I am sorry that you are going through such a horrible time. Where is the pain located? What did the results say from the myelogram? Is there going to be something that can be done for you? This has been so discouraging to see you decompensate from where you have been. I am hoping and praying that you can get back on track and become the neurosurgeon you are meant to become. :D

Your friend,

Terry Newton

Justin,

Pain is a humbling equalizer but it teaches humanity, something some doctors never fully appreciate. You will make a wonderful, very compassionate doctor. You will understand and appreciate your patient's fears, concerns and hopes.

I'm hoping the lastest episode resolves itself and you're able to put your pain in the back of you mind. And just for the telling, no one I've ever met has a 'normal' spine;)

Please take care, Dale

Justin,

You figured out before who I was. Cannot hide anywhere. Just joking.
I hope you feel better.
I am also interested about what the docs tell you because I have had the sciatica/radiculopathy/numbness (c**p) in both legs for five months. Now, I am getting increased back pain. Reading online there doesn't seem to be a good solution after ADR.
I went to a workers comp doc on Thursday and he was telling me my ADR had failed to relieve my pain. I told him the pain doc told me that L5/S1, below my ADR, has DDD. This doc (chief of neuro) disagreed with me of course. It was disheartening to hear him talk. He totally dismissed lumbar discography and essentially warned me about having any further surgery "because it probably wouldn't work".
He also spoke about getting a myleogram.
My docs haven't even spoken the big "S".
So I was pretty discouraged afterwards. It is tough.

One thing is for sure, is that this will make you a better doc. I wanted to put those discogram needles in the wc doc when he had a painful disc to see if he could tell the difference between a painful disc and one that is not. Ha. Ha.

Rest and hopefully your pain will be relieved soon.

runner

dose pack
 

Hi Justin,
Have you finished your medrol dose pack yet? Honestly, mine took over a week to kick in. You may find that you are going to feel a lot better soon. I will think about you feeling better! You are too young and too vital to get knocked down. There are solutions out there, I know your Dr. will find something for you. My hubby and I will be thinking about you along with my 30 year old snowbordering son Justin who feels rather lucky after I told him about you. Feel better soon.
Phylly

Thank you for the support!
 

Wow, I have to say I am overwhelmed with the support on this forum. To Everyone: thank you for your kind words and support.:D

I will finish my dose pack today. It has helped, but I am still having extreme pain in my lower back and legs. The pain is very distracting and makes functioning difficult (studying is a world of fun right now too! ;)).

My Myelogram Results:

Well, my myelogram results demonstrate that there is a possible "smoking gun" to my symptoms. My entire patient profile (through Mark) has been updated and Dr. Bertagnoli will review it shortly (Dr. B and I decided to wait to review my case until my myelogram was done--it took me 8 freaking weeks to get a myelogram :rolleyes:).

On preliminary review of the films, there is a substantial issue that will most definitely have to be addressed in one fashion or another. I will post a film shortly, so people can see what's going on--it's very evident even to the untrained eye.

Once again, God bless everyone for their support. I don't know any other way to put it, but I feel like I am slowly deteriorating--unfortunately, this is reminiscent of my time leading up to my ADR surgery. :mad:

Hi Justin

It sounds that your myelogram was not as eventful as mind that is good.

Why did it take eight weeks?

Thanks for the P.M.

Keep us posted on what Dr B has to say?

Pain sucks but its better than a dirt nap:)

Gil

Justin:

You've been such an amazing support to others in spite of the pain that you have been in. I am glad that they found what is causing your problems. I hope there is a good surgical solution for you and that you will be back on track once again. You are in my thoughts and prayers. I am glad we ended up in the same spot together. :D

Your friend,

Terry Newton

Terry,

Thanks for your kind words...I'm VERY GLAD we ended up at the same spot. It's like a breathe of fresh air! :) Please give your wife my regards--and quit making her laugh so much...that's an order. ;)

Hi Justin,
What you are going through will no doubt make you a better, more compassionate person and doctor. Most doctors just don't get it but you will and it will make a huge difference for your patients. I understand the hesitancy to try and look to the next 10, 20, or 30 years with spine problems. Just know that better things are ahead and that is what we need to focus on not where we are right now. You are young and will be able to take advantage of all of the new technology just around the corner. Hold on to your faith. It will carry you far.
Bless you,
Linda

Justin,

Catching up on posts and so I'll say ditto to all the deserved kudos.

Between Dr. B and Mark, your in good hands. Stay strong. You are in my thoughts and prayers. Sandy

arachnoiditis?
 

Has anyone developed arachnoiditis after a myelogram? i read about it here --Arachnoiditis -- but wanted to see if anyone on here had experienced it; i hope not. Temporary spinal headaches are one thing, but permanent arachnoiditis is what concerns me.

I've read about a few people that have developed arachnoiditis after ADR and fusions, but i don't recall anyone linking it to a myelogram.

thanks,
Liz

ps... justin, what does your myelogram show? i hope you're feeling better.

Justin,

I was reading this thread again.
I can relate about what you said about slowly deteriorating and what you went through before ADR.
I am looking at 2-3 more epidurals in the coming weeks and just cannot get over the pain. When I started this with the facet block and then the epidural, I could not help thinking that everything was so similar. It is truly disheartening. I hate being a patient. Would rather be on the other side. I am sure you feel the same way.
I feel for you.

runner (K)

K,

I couldn't have said it better. I feel for you as well. I know you can relate when I say that I am sick of all of these spine issues. It overshadows everything you have going on in life, and you essentially become a prisoner to your own pain. Oh well, I do make a conscious effort to take a mental inventory of what I am blessed with in life despite this temporary pain.

This too shall pass.

PS... Liz, I started another thread about my myelogram findings...thanks for caring.