I had L/3 L4 L5/s1 fusion a year and a half ago and I'm pain-free in the back now but have the leg twitching and body jolting problem. The last time I asked about it I was told it wasn't going to go away (it started before the surgery). When I touch my left leg on the outside (by the hip), I feel ripples up my spine (which is downright creepy but bearable), and I'm starting to think I might have a touch of caudal equine syndrome (where you don't feel sensations "down there") - for me it's hard to determine when I need to have a BM....I feel a funny sort of tingling in my groin in general and it's taken me a long time to figure out that's a sign to go to the bathroom. It's hard to know because my BM's were so messed up being on all the previous pain meds. I also think I'm not sexually aroused as well as before (but this might be due to being on an SSRI)....but anyways....it's a year and a half out, I was turned down for disability too but am doing pretty well now. I'm not on any pain meds. I lost all the weight I gained when I was couch-bound and reading your story about not being able to lay clothes out on the bed brought back some memories (not good ones).....I also had a 1 year old when the severe pain started and it really hampered my ability to care for him.
Hi there,
I to have been suffering with similair complaints ,.I have a badly missaligned spine ..
Have had shooting pains regular ..I,m now having power assisted micro -manipulation..Its somethin new and is very good ..I have had 3 treatments up to know and I can walk properly again the pains are going .. please google it and try it ..Love to you all ..Brenda..
***UPDATE***
Well, Its Rather funny...Back on Nov. 2008, There was a post, Rather long post made by Queenfroggee1, looking for some advice. Well, I found this message board looking for some advice on my problem and I hope someone helps me out. Well, as I read that other post it occurs to me...That was me way back then. How funny is that. Well, so here is my update. Well, I found a new primary Dr. down here in Lake Geneva closer to where im living now, actually only since Nov. of 09. Its been a year as of Feb that I have been unable to work due to my back.
Well, I found a nurse that saw my MRI results from Sept. 08, yes no new scans or xrays....My regular dr. who i have recently fired for lack for care and other things associated with lack of time spent on his each of his patient. He kept telling me he couldnt get me into see the surgeon any earlier because of my insurance(being that it is state insurance) yet this nurse called the same surgeon and got me an appt. 2 wks after i went in for pain and saw her. Nearly a full 2 months before his set appt for me.
So I went in and seen the surgeon in Nov of 09, He came into the room after looking at the only MRI film i had ever gotten done, he looked at the results from my nerve test, and the report from the 2nd spine doctor and the first thing and pretty the only thing he said was, Since what I have read and looked at, the only conclusion i can come up with is that since you were born with these conditions, and have tried several things...its gonna be surgery. I said wow. Finally, Im thinking someone is actually doing something for me.
So on January 19th, 2010. I had L4-5 fusion with a PLIF procedure. Except and this is the scary part. The surgeon told my fiancee that he was taken back for a minute when he opened up my back, my spine was so compressed, he said it looked like someone took a vice grip to it. He couldnt believe how i managed to function and get around like i was all this time. He ended up adding 4 spacers and I had not just 1 pinched nerve I had ****6**** severly pinched nerves...
So now, Ive applyed and been denied ssi/ssdi bennifits, but i have since then reapplied and am waiting to hear back. my recovery is a year. But the reason i came on here is I too get those ghost pains...No fun...
***But, I need help....Ive been getting these severe and painful massive jolts/spasms. They start like on one side of my body and then they work there way up and around and down the other side. Its like they when you think your gonna fall out of bed and you try to catch yourself. But this is hard and it hurts something fierce. and then sometimes is my hole body like someone shook my whole body all at once. Im hoping someone understands cause its really hard to explain. Also, my legs, lower back(by the insicion) and butt check almost feels like a numb not my own body feeling. like i know im touching it but all i feel is pressure sometimes not nessicarily the actual touch. and then sometimes its just pain and pins and needles. And ofcourse i still have the severe rls.
***Now my question is...I know i still under 30 days post-op and I know that Im gonna have new feelings for awhile or lack of feeling for awhile. And I know that i had an extreme amount of damage due to the shape of my spine and how long it was damage for, but are these normal for the time frame...Whatcha think?? Please anyone
Tis Me Froggee....(Kelly)
*UPDATE*
I wanted to tell you all that I am currently on 20 mg of Amitriptyline. I am no longer having convulsions and my lower back pain is greatly relieved. I do still have the numbness and shooting pains in my legs, but overall, I have had a lot of success. I have been on this amazing drug for about 3 months and I love it. It took a couple of weeks to work, but it was worth the wait. Apparently the drug blocks the pain pathway. The only noticeable side effect that I have experienced is some hair loss. I am not balding by any means. I am just "shedding" a little more than usual. My hair does not look thinner, so I can live with this. I highly recommend this drug to anyone with chronic pain.
I hope all of y'all are doing well. Y'all are in my prayers. Take care.
I just read all the posts and must say that my symptoms are nothing compared to what you are all going thru. I really feel sorry for you and hope you find some relief. However I thought in the interest of all readers I would share my stuff too in case it's useful to someone.
I have had very mild muscle twitching in my right calf for I think 10 or 15 years, barely there, but if you watched it for a while, it would look like I had some small rodents hiding in there moving around. No biggie. I've been fairly active, mostly hardcore mountain biking. Then last year after the last day of snowboarding, I woke up in the middle of the night with my left calf (which is the back leg on my board) fully cramped up which i walked out, rubbed, stretched etc and it was painful for a couple of days and started twitching. Then it happened again. I started stretching my calf regularly and the cramps stopped but I get them every now and then at night and sometimes it wants to cramp as I run upstairs. But the twitching has been constant ever since and lately the twitches are strong enough that they make my foot move. My calves feel crampy all the time and a bit tender when I rub them and feel like they can cramp without notice. But I was able to mtn bike all last summer to the smae level althought there were a couple of days when my calves would cramp, usually in the middle of a jump where I would spring off both legs (and they would both cramp in mid air!) Along with all this I have had back pain for a few years which I assumed got worse from laying hardwood, tiling , moving large boulders by hand, all the stupid stuff I do at home. So went to the doc as my wife says I'm starting to walk around like an old man (I'm 50 by the way), stooped over because standing up straight would cause a sharp pain in my lower back. So bent over activities like biking seem to be ok. Had an MRI and they concluded I had moderate to severe spinal stenosis and that I had a syrinx from about the mid back to the lumbar, but very thin. They supposed that the stenosis may be the problem but also said that it could be that I'm just twitchy for no reason. This is because I sometimes have twitches elswhere like my shoulder, bicep, eyelid, just random it seems. A couple of years ago my left bicep had a regular twitch which was constant day and night for about 3 months. But the left calf seems certainly due to snowboarding, or perhaps some underlying predisposition to twitching was inititaed by it, who knows. But my sister also has had twitching, but not at all to my extent. She also is not as physical as I am. Also should note that when I am doing work (renos) on my knees for a long time, I am more likely to get the cramps that night. Thats not my job, tho seems like it sometimes. I'm a desk jockey during the day staring at a computer.
So theres my story, no surgeries or accidents like most of you, but still got twitching and cramps and still have back pain, still doing my ab workout which does seem to help, but now the twitches seem stronger than ever. Electrolyes are fine, eat well, drink lots. But after reading Skeetals note have decided not to do back surgery, try the core strengthening first. Like really try for a year or more. Things seemed better for the first 3 months of the ab workout, doing twice a day religeously, then life got in the way and now I think its a bit worse. Doing bent over hard work is definetly not helping and the renos are almost over. I'll let you know in time if my renewed ab thing works out. btw, had a friend who did do surgery and it did not make that big of a difference to him and he did not stick to any core strengthening routine, thinking the sugery would fix it. Not!
Good luck to all of you.
Hi Nola...I wish we could help one another out alot more, our info is pretty darn limited..
I wanted to mention abt the neurontin..most of those side effects will wear down in a few weeks so be patient...
As far as the narcotics..I am on a fairly low dose of oxycontin, and it does help with the back pain,,,as far as inhibiting mentally, there is some fuzziness/forgetfulness/lightheadedness....but quite minor really, and no I don't think mentally I'm any different, just maybe you'd call it slower reactions???
It would be worth a try if you're pain is limiting you're life!!
Just make sure and see a Pain Management Physician (PMP) who can prescribe and monitor the use of these meds for you correctly.
SKEETEL
My God girl...You need to see a good lawyer/doctor combo(apparently there are some)..what that doctor has done to you is inexcusable ....how can they talk and play music when they are dealing with our bodies and in an area that could effect our whole lives???....I am so sorry for your problems and how unnecessary too.
All I can say is its my opinion that this doctor...has seriously injured a nerve in your spine...read up on ESI's and what complictions are possible.
I suggest both of you join the PAIN MANAGEMENT forum....there are many posters there in similar pain and they have sure helped me with many questions...
God bless you both