New pain after myelogram

I had a whole spine myelogram, with CT a week ago Monday. I got the awful hip, leg pain and numbness, that are not all that uncommon, instantly with the dye injection. (see myelogram comments [url]https://www.surgeryencyclopedia.com/La-Pa/Myelography.html])
All my spine pain got horrible immediately and has only gone back a little in a week and a half. I lost hearing in one ear, vision is still messed up in both eyes. The pain and numbness, etc. has not gone away. I called the hospital where it was done Friday and was supposed to get a reply from the doctor, but haven't gotten return call yet. At least I know it's not all that unusual - after searching for hours!

My PCP gave me Prednisone, but it's not doing much. My pain isn't bad enough to call my pain doc yet, but it's a consideration still. I get to see the neurosurgeon who ordered the procedure in another week, and I don't feel like I have anything to go to the ER for, although the hip pain isn't going away. ER docs aren't really trained to do anything for this. I don't think I need a blood patch. No intolerable spine pain, although it's not back to my usual level 7. I'll call the doc who did the procedure again tomorrow.

I had a myelogram 6 years ago after breaking my neck. That time wasn't fun, but this time it was bad enough I won't agree to do it again. I don't expect to learn of anything more important than want was seen on the MRI a few weeks ago. My neurosurgeon is very conservative, so I don't expect he'll consider surgery. just like he didn't 6 years ago. I'm not in a wheelchair. Yet. Just pain I don't want to live with.
(Don't worry. I am needed, so not considering anything drastic!)

Alice, My last several myelograms have been extremely painful. Since I can't have MRIs, they do CT Scans and Myelograms. They explained it to me that do to the multiple surgeries, nerve damage and multiple CSF leaks, my nerves are hypersensitive and the pain is more than after my fusion surgeries. There is a risk with the Myelograms of having a CSF Leak. I have been dealing with one for 5 months this time. The best thing to do is lay flat as possible.I am on a 1 hour up and up to 15 minutes down at this point. That is they way I live these days. Anytime I extend my up time I have to put up with extreme symptoms. Increase caffeine (I use caffeine pills as the nausea is so bad I can't handle coffee). My neurologist also told me to increase my salt input. The salt and caffeine help with CSF production if it is a CSF Leak. Also lying flat helps with the symptoms. If it is a CSF Leak, avoid anything strenuous, no lifting or bending. Many times, the CSF leak will heal itself or a blood patch is necessary. If they are not sure if it is a leak or know the exact location, they can do a blind patch. If they know it is a leak and where it is, they can do a targeted patch. I have all kinds of information on CSF Leaks if you need.

The nausea, double and blurry vision and hearing isues along with positional headaches are classic signs of a CSF leak. I suggest with the possibility of a CSF leak that people keep a detailed journal of when it started, symptoms daily and what if anything helps. After a period of time, the journal helps document the possibility of a leak.Not all leakers have all the symptoms or even the intensity of certain ones. But showing a history of a week or even a month can help doctors who don't deal with CSF Leaks on a regular basis. My neurologist stated that with the laying flat, salt and caffeine pills, it may take a period of over a month before results are experienced. A leak causes low cerebral pressure which causes the headaches, nausea, vision and hearing issues. The fluid that normally surrounds the brain is leaked and the body does not keep up. A normal person produces 3 to 4 times the volume of CSF daily that the body holds around the brain and spinal cord. It is absorbed into the tissues. With a leak, you have to stimulate more production to try and keep up. The larger the leak the less likely the body will keep up. The stats show that the longer a person leaks, the less likely it ill heal on its own and will require a blood patch or surgery. Not trying to be doom and gloom just realistic.

I had to stop drinking coffee even though I looked forward to it. They wanted me to drink coffee because the caffeine helps stimulate CSF production and to help me clear the fog do to the sleep meds I take. The coffee added to my nausea. I have been drinking tea and taking caffeine pills now. I was able to get my work comp to pay for the caffeine pills.A little bit helps. Have you received the results of the myelogram yet?

I have been searching for years to try to figure out what happened to me after my myleogram. I was fine after the procedure but that night as the local wore off my entire body lit up. It was like I was on fire. Every nerve in my body was on 10. It wouldn’t stop and it got worse and worse as time went on. We went right back to the hospital and into the ER. Told them what had happened and they didn’t really seem to listen. They put me on IV dilauded and that didn’t even make a dent in the pain. We finally talked to the surgeon who ordered the test and he said by doing the stenosis surgery to put a rod from T-2 to T-11 would fix it. Well I learned later that that would fix the stenosis NOT the whole body pain. Spent almost a year in a bed screaming until I finally went to another hospital and the doctor there saved me. He did a bunch of procedures on my back which reduced the pain.

The stenosis surgery was a total failure. Some idiot left a port on drain and killed me twice because they couldn’t figure out why I was bleeding out. They even opened me back up to recheck the work until someone realized what had happened. They also cracked one of the screw holes in my vertebrae and the entire rod bent forward and healed that way so I’m fixed at a 35 degree angle from my belly button up. I have to hold my head all the way back just to almost look straight ahead.

The surgeon finally saw me for a check up and despite pleading for answers he says you need another myleogram which he knew was the last thing i would ever do again. He saw how badly broken I now was an he excused himself for a moment. about a minute later his assistant came in and asked us to leave the premises! I guess his ego couldn’t deal with the fact he screwed up? I dunno.

Now I have extensive and extreme muscle, nerve, bone and arthritic pain and I am physically dependent upon 9 different medications. I can’t really be fixed, the risks are far beyond the reward. I can’t lie down flat anymore. I can’t lie on my stomach. I can’t travel anywhere I can’t get to in one day because I need to rent an adjustable bed at my destination before I go. I can’t just stop in a hotel and sleep.

You might wonder what was the reason I even went to the doctor in the first place? Well I went because the tip of one of my toes was tingling. That was it. You’d be even more shocked if I told you the hospital. Let’s out it this way. My football team wears purple, my baseball team wears orange and this hospital is considered the best in the entire world. I beg to differ. I would go to a blind psychopathic witchdoctor before I would ever go back to this hospital!

I’m am not looking for sympathy. This happened in 2006 and despite becoming permanently physically disabled at 32 I at least got to see my kids grow up. That is a gift rarely received. I consider myself lucky. There are people out there far worse off then I am. I’m just hoping to figure out what happened to me after the myleogram because no one would give me an answer.