Uncontrollable jerking after a epidural
 

I hurt my back and was told I had 5 bulging disk L1 through L5. After 2 months of bed rest with no luck and still having pain in lower back and down left leg was told I needed to get an epidural to help with the pain.
The first epidural reduced the pain in the leg by 50% but did not help in the lower back. I was then given a second epidural and it was painful. I was told to stay off my feet for 48 hours and did so except to use the restroom. 30 min after getting up on the third day I started to jerk in my lower back. My back was pulling in toward my stomach. It has progressive got worst as time went by, now 6 months. The only way I can get it to stop is to lay flat on my back for a period of time. The longer I am up and put pressure on my lower spine the worst it gets and the longer it takes to get it stopped by laying flat.

Have seen several Drs and told everything from caused by stress to it being Myoclonic jerking. But none of them know what caused it or what to do about it. The jerking will even start while sleeping if I roll on my side and but pressure on my lower back.

Can anyone but some light on this or had similar condition after an epidural.

Welcome to NeuroTalk Jerky! :welcome_sign: :Wave-Hello:

I'm sorry for what you're going through. Have they tried any medication to calm the jerking? I'm thinking maybe anti-spasmodic meds like Topamax or something similar?

I don't have experience with that, but I have had migraines that would go on for weeks or even months at a time and I took Topamax for a long period and after I weaned off the headaches were gone.

I was amazed that they stopped but my MS neuro said something about it stopping the cycle (or something to that effect.)

Yes they have tried seizure meds, muscle relaxers, anti- depressants and so on.. I have so many half use bottles of meds that I could be a drug store from where they try something and then take me off of it. I have seen other posting were after a epidural the same things started and looking for what was found to cause it and what if anything was found to cure it Thanks

have you had any luck in finding out what is going on. I had an epidural post op pca pump and since have been having tremors, jerking and cramping in my right leg. It will feel like pressure builds up in my spine then after sharp intense pain across my back, my leg goes crazy. It is just effecting my quad muscles and my hamstring. the hamstring will cramp up and twist my leg around from toes to hip.

God be with you and hope you are doing better by now

No I have not.. It like the Doctors do not believe me that this started only after the epidural. Now they are trying to say it is in my head!!! But funny it happen while I am sleeping if I roll on my side and put preasure on my lower spine. It also increase if you just push in on my lower spine. But as they say once there is a chance that a Doctor screwed up none of the others will step up and take the time to see what is going on do to possible suit.. It is a tight group and they cover for each other.

I saw a movement disorder neuro in Omaha NE and he said "i'm leaning toward the epidural being the cause."

Just got local results of MRI's of head and thorasic spine and they say they show nothing. So now they want to do C-spine mri. I have had soooo many blood, urine, and the mri's that it is crazy that they say "oh, we didnt find anything everything is "normal"... well then why does my leg jerk around all the time now. I am so dang sick of taking pills and when have a problem with one of them they just throw in another to try and stop the problem caused by the other ones.
I'm in trouble at work because of missing so much. My supervisor is great and heck one day when my hamstring decided to cramp and twist my leg/foot around she would not leave my side. She has been so sweet and feels bad that I have a warning coming, never had one in the 10 yrs been working there. I'm out of FMLA as it ran along with the short term disability back when this got so bad that I was off for almost a full 12 weeks from Jan 18th. I honestly dont know what to do or which way to turn next. I have already passed my deductable and out of pocket for the year (6000.00) but you still have to pay the co pays for the office visits and at 35.00 PCP and 50.00 specialist and not being able to work because if I take the meds to get my leg calmed down they knock me out. I should be asleep now as in 1.5 hrs my alarm to get up for work will be going off and here I am because my leg went nuts and got wrapped up in the bedding, good thing i'm single or would be kicking the cr** out of anyone who was in bed with me LOL
Hope you have better luck than I am having in this mess...

God Bless and may your Special Angels wrap their wings around you and bring you comfort.

I know what you mean, I was lucky and have a disability policy that pay 1\3 of my normal salary but that still makes things rough. I have seen 13 DRs and even a disorder Dr. But they all seem to know each other and are covering something up. Only one would say it was from the epidural but then he dumped me by referring me to another. They now are trying to say it is all in my head even though I jerk while in my sleep if I roll on my side. It seem that any time I am up and put preasure on my lower spine that the jerking starts slow at first and then get worst the longer I am up and the pain increases. Riding in a car with the vibration and bumps get it going real bad.
I was forced by Metlife to file for SSDI but they rejected the first filing and the appeal has been going on for 5 months now.
I think that they damaged a disk or nerve when doing the epidural. The convently lost the film of the procedure. Either that or broke of the barb or part of the needle in my back that is causing the jerking. (kind of like a short out in electric) I each pain pills till my stomach is hurting and the hit the an acids.. As far as sleeping I had to get another bed due to waking my wife up when the jerking starts at night or when I go to bed keeping her awake waiting for it to start.. My jerking is in the lower back when up , but when I lay down it is in lower back and my legs.
I am looking into laser surgery ... They say when they go in and look around they find all kinds of things that do not show up on MRI or CAT.

I know one thing I am tired of it all and VERY Disappointed in the medical practice. They seem to not want to take the time to investigate and get involved. I am sick of seeing Dr for the second time and paying their big bill just to be told they can not help. Why do the not just pick up the phone and call you and save us the trip and cost ... Well we know they want the $

I will say that the pain use to get bad in 30 min but now 16 months later it seems to take an hour to get real bad . But that could be due to the stronger pain pills also. Like I said I am tired of it , been house trapped except for Dr visits and Pt the whole time. I have just got a inversion table to try it has not even been put together yet hoping it will decompress my disk and help. I have a tens unit which seems to take my mind off the pain when it get real bad that I use.

Hope to hear back and know your frustration.

well, after my PCP's (dr Kristy) nurse called w/mri results and said i had to have the c=spine mri, I had asked if they had lab results from doc in Omaha, she said NO. I saw him on May 12. I called his office and talked to the gal there supposidly they not only mailed out results to my docs here but they faxed them too right after the appt. So the gal I spoke w/there was going to fax them again... That was tuesday afternoon.. it is now 4am on friday morning and I have yet to hear back about the c-spine mri appt and have heard nothing from my local docs at all.
After I had see the local neuro the 1st time she did IV dilantin to try and stop my leg so I could have the 1st mri's and it stopped it for almost 3 hours, it started back up in the mri and they had to tie my leg down to finish it. I had stopped over to report to dr kristy's nurse what neuro said. Nurse wasnt at desk but dr kristy was headed up. While talking with her I showed her my leg was calm and that had had the dilantin.. she slipped and said "well, guess I better get my other 3 in and get them started on it" Just off handedly I said "did they by any chance have surgery w/an epidural pain pump after" her reply was "well....yeah 2 did for sure she wasnt sure of the third but since have learned the 3rd did too. So that makes 4 of us with this going on and that is just one doc's patients.
On wednesday I got wrote up at work for being absent, knew it was coming and I know that is not their fault. I can only have 3 more in the next 6 months then i get the final written warning ...after that any will cause termination. Have local HR person looking into when I might get some of my intermitten fmla back...so far have not gotten an answer. She said I was close on hours so maybe they would give me some back.
Will Pray that you find some answers and get someone to listen maybe if one of us gets an answer we can get the other docs to listen and stop this damn stuff. I'm ready to convince someone to give me botox injections in the nerves to kill them off and I will learn to walk without those muscles.

got call from PCP nurse (smart one) she appologized for not getting me called last week about mri... going to have it this thurs. before I have an appt w/pcp about the reaction to one of the drugs that made my feet blow up like balloons. maybe will get to lose a med after that... can hope anyway

meeting of the minds or butting of the heads...
 

well, had the c spine mri this afternoon. Saw PCP after, she went over the results of labs done in Omaha and discovered the "red blood cell" every type of test related to them to be sky high... so since I had to quit donating blood to the red cross "just until this with your leg is taken care of".. I gave a pint of blood to the trash today. I suggested they see if the lab tech dept at U of NE at Kearney might want it to have students run tests on. Since one of the tests that have been ran is for HIV and it was negative the blood would be clean. They could have fun testing it for all the different drugs in my system LOL
Had a meeting of the mind and played a bit of lets make a deal w/PCP... she agreed that dumb to wait another month and then have Dr Torres ship me on to Mayo that would be better to get it done now. Told her that if this is going to be permanent then want to look into having nerve root injected with botox to kill it off so I can learn to walk with the muscle I can control in my leg. Her reply to that was i would have to talk to someone "higher" than her to get something like that done. She is going to burn a cd with my mri films and send them off to Omaha to movement disorder doc so he can have someone else look to see what is there. I went armed with information from here an "we move" site. including a chart that shows where in spine nerve root for what is going on with my leg came from. Told her you can see it is something that has happened between L3 and L5. She did cut back the drug that I was put on to counteract the side effect of one of the other drugs to PRN. So one less pill to take in the mornings. Unless I wake up with balloons for feet.
They will let me know after get blood results back on red counts today when I go back for another donation of pint of blood to the trash.

Please let me know if they find anything out that is the cause. Food for thought, in my state if a student or someone training is involved in your treatment you can not file suit.... it is classified as schooling. I am looking into two sites Laser spine institute located in Tampa Fl and also got information about a Dr. Mroz at Cleveland Clinic that was trained at UCLA spine institute on invasive spine surgery. One thing I have been told that kind of makes sense is that the jerking is my body responding to the pain. So looking for a way to get rid of the pain to see if the jerking stops. My wife still thinks that part of a needle or damage from the needle is causing it so she is not for surgery. I hope if they do surgery they will look around in there and if part of a needle is in there they can see it. I do know one thing this is not in my head and I am tired of living life from pain pill to pain pill!
You can contact me direct at rms-it at fuse(dot) net
Best of luck and if they identify my issue or something related to it I will let you know... God Bless

mayo clinic called yesterday afternoon
 

I am sooo excited...hope they decide my case is worth at least an appt so I can plead my case in person instead of over the phone. Late yesterday afternoon I got a call and the Movement Disorder Neuro at UNMC sent a referral to Mayo to the head of the same dept there (Dr T trained under him) the woman on the phone grilled me over what has all been going on and if I had any litigation over it going on at present time, she said Mayo does not get involved in litigation. She said that "my case was interesting" and she was passing it on to the Neurologist team that decides if an appt will be offered...so now the wait to see.. she said I should hear from the team in the next few days...Please say a Prayer that they will see me, my insurance company will buy the RN a new map so she can see that Rochester MN is closer to central NE than Cleveland OH, John Hopkins or the U of AZ...and that the neurologist there have the knowledge to fix this not only for me but for others who have the same thing going on. God bless you all Jo

I hope this helps others not have to suffer as long as I did
 

Well almost 18 months after I got the epidural I finally have the answer. I do not think for a minute that the 16 doctors I have seen did not all know the answer but rather did not want to tell me what was wrong due to the fact that they did not want to be in a malpractice suit against one of their brothers. I just was diagnosed with a tear/hole in a disc that is leaking spinal fluid. I have been told that it is leaking onto a root nerve which looks damaged also. They say when spinal fluid hits other nerves it causes them to reach with sever pain and kind of short out. This explains my pain increasing and the uncontrollable jerking. Check out this website if after a epidural you have complications. chirogeek com/000_Anular_Tear_1.htm[/url]) At least now I have an answer to it all

Jerky

18 months to get the truth and a answer jerky
 

Well almost 18 months after I got the epidural I finally have the answer. I do not think for a minute that the 16 doctors I have seen did not all know the answer but rather did not want to tell me what was wrong due to the fact that they did not want to be in a malpractice suit against one of their brothers. I just was diagnosed with a tear/hole in a disc that is leaking spinal fluid. I have been told that it is leaking onto a root nerve which looks damaged also. They say when spinal fluid hits other nerves it causes them to reach with sever pain and kind of short out. This explains my pain increasing and the uncontrollable jerking. Check out this website if after a epidural you have complications. chirogeek com/000_Anular_Tear_1.htm[/url]) At least now I have an answer to it all

Going to check it out... getting off the drugs is calming my leg down more than they were doing... MD neuro in Omaha wants me clear off them... my leg was actually better before they started drugging me up at least I had times when it would be calm. will check out the site.. thanks for sharing and finding an answer to this H ----- Jo

How have you been?
 

My son has been going thru this same experience...two years ago he had an ESI and has had uncontrollable pain and spasms in his leg and buttocks ever since...we went to the Mayo in MN and they had no clue what was wrong.
Please let me know how you are doing and how did they diagnose that you had a tear?
I pray that you will respomd and are still on these boards

Doctors lie
 

Well I have had back surgery since then and they were supposed to have sealed the tear in the disk that was leaking spinal fluid. They did tell me that they could not fix the damage that was done to the root nerve by the epidural, but thought that stopping the spinal fluid from leaking on it could stop the uncontrollable jerking. After surgery I do not jerk as bad or as fast as I did before. Prior to surgery I would start jerking in 15 min or so after getting up off my back. Now it is a few hours before it starts and it is not as hard as prior to surgery. I do not know if they stopped the leak all the way or not or if the jerking is still caused by preasure being put on the damage root nerve. Hope this helps some and I know your frustration... Doctors just do not want to find things untill the 18 months are over so they can not be involved in a law suite.

Start eating Aunt Beans famous fava beans.. they have helped me and I have now divorce Johnny Walker Red... and have moved to a bronze cane... yet to me officially named. Top contenders are "Captain Morgan" (due to being bronze colored and a Captain out ranks my son who feels he can yell at me from halfway around the world when he finds out the things I am doing LOL) other name up for grabs is "Roosevelt" (walk softly and carry a big stick, also a President definitely out ranks him BIG TIME) Haven't been over here much as spend most of my time hoping and Praying to catch up with him for a few minutes on facebook or if he has a good connection we visit on Skype. My new therapist is a neurological Physical therapist and also does alternative therapies... he has me doing neurostretch massage of tigger points in my leg and it is working wonders. Also have kinetic tape down my shin and at my knee. I can tap my toes on purpose LOL. Hope you all find someone who can help you make the amazing leaps that I have made in the past few months. God bless you all

want to let everyone know... between the fava beans, kinetic tape, and the neurostretch massage.... I RAN YESTERDAY!!!! really RAN not just a trot... I felt like ROCKY when he gets to the top of the steps LOL

That's so awesome! What is kinetic tape?