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NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Movement Disorders (https://www.neurotalk.org/movement-disorders/)
-   -   Uncontrollable jerking after a epidural (https://www.neurotalk.org/movement-disorders/109034-uncontrollable-jerking-epidural.html)

Jerky 06-11-2010 01:57 PM
Quote:
Originally Posted by mamagoo (Post 663396)
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

mamagoo 06-23-2010 03:33 AM
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

Jerky 08-31-2010 05:40 AM
I hope this helps others not have to suffer as long as I did
 
Quote:
Originally Posted by mamagoo (Post 663396)
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.
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

Jerky 08-31-2010 05:43 AM
18 months to get the truth and a answer jerky
 
Quote:
Originally Posted by Jerky (Post 593586)
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.
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

mamagoo 08-31-2010 10:59 PM
Quote:
Originally Posted by Jerky (Post 690277)
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

Kellysmom 06-15-2011 05:21 PM
How have you been?
 
Quote:
Originally Posted by Jerky (Post 690276)
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
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

Jerky 06-23-2011 06:20 AM
Doctors lie
 
Quote:
Originally Posted by Kellysmom (Post 779154)
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
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.

mamagoo 07-21-2011 07:13 PM
Quote:
Originally Posted by Jerky (Post 780857)
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

mamagoo 07-27-2011 08:05 PM
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

momto5 07-28-2011 06:10 AM
That's so awesome! What is kinetic tape?


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