Post multilevel lumbar fusion and discectomy, still having pain.
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Hello, I am 8months post L3-S1 PLIF. I am experiencing severe pain when I bend or twist, really any movement with elivate my pain. I have done pt, Aqua therapy, pain meds, etc... I have changed my pain mngt Dr because he did not feel I had anything physiologically wrong with me and dismissed my pain. I had tests run by a new dr and my si joints are rubbing together bilaterally and the facet joints are also causing quite a bit of pain where my fusion is located in my lumbar region. We found this out by having an injection a few weeks ago and radiographs also show this.
Now my new dr wants to run a trial of a spinal cord stimulator. I have a few questions about this that I can't seem to get any anwsers on. If I have a scs and it makes the pain go away, what happens to the joints that continue to rub together for the many years that the scs is inside of me? I know that exercise will help to build the muscle up but not enough to cure the diseased bone. Can anyone speak to this question that I have? I feel I need some type of a cartilage spacer placed in between the si joints and the facet joints. I don't think there is even anything out there like that. Should I ask about removing the hardware? Would that help? I'm so disappointed and discouraged, I feel I am worse off than before my surgery and trying to get a dr to provide pain meds to help with the day to day necessities of life is next to impossible. Leg numbness still occurs but is better than before surgery. Has anyone else experienced this and can you provide any words of wisdom? I'm 44, fairly fit although you would never know it now since I can't perform any of my old activities. Thanks.
0 likes, 6 replies
CHICO_MARX melm1972
Posted
I had the same fusion in 2015; nightmare op as they had to go in a second time to drain fluid accumulating in my sacrum. 12 days in the hospital. After that, a pretty fast recovery...broke all the records at my PT joint. Doing 230# leg presses in no time. Got off the back brace in a few months and it was over...just can't touch my toes anymore...but who cares at 69.
This year, I had my left knee replaced. Five weeks post op, I started developing sciatica...pain just shooting from back and hips through glutes and down my leg. Turned out to be those same SI joints of yours. Mine were locked tight. Ortho sent me to a chiropractor with experience on fused patients. Corrected the problem inside a month. Now...
At 8 months post op, I'm having the same sciatic pain but down BOTH legs. Numbness, shooting pain, weakness to where I can't walk and more. Only one thing causes that...and it can't be fixed by a chiropractor. MRI showed severe stenosis L2 through L5. Appointment with spine surgeon again in a few weeks...looks like another operation is in my future to clean out all the canals the nerves run through from out of both sides of the spinal column.
I'm not expecting any problems. Had severe sciatica over 5 years ago that no meds or docs could fix. My spine guy went in and found a bone spur "crushing" (his word) my sciatic nerve at L4/L5. Took care of that plus shaved back the calcified disc at L5/S1. Pain free in a day or two; zero rehab. Hoping for the same this time.
You may want to look into this further...
melm1972 CHICO_MARX
Posted
Thank you, I do plan on looking into it further, that's why I'm on this site and scouring the web incessantly. I also see my neuro sx tomorrow, I plan to address a lot with him.
my main concern is if I have a scs placed, it alleviates the pain but I still have the joints rubbing so years down the road when the battery on the scs wears out what is done with those joints that have suffered many more years of wear and tear that I haven't been able to feel with out the scs? There doesn't seem to be a way to fix the facet and si joints.
good luck to you as well.
CHICO_MARX melm1972
Posted
I am the TSA's worst nightmare. Go through the archway and all the bells and whistles go off. Then they make me go through the full body scanner. "Hey Frankie! Ya gotta come over here and see this guy!!!" Metal knee, metal hip, metal back. Slowly getting turned into a Terminator. Told my wife to toast me when I die, sell all the titanium and throw one big party. Still have one knee to go...4 1/2 pounds and counting...
jannie11 melm1972
Posted
I am a 66 year old woman in New Zealand and while my diagnosis was different to yours, I would like to tell you my experience in the hope that something may be of help to you. I had spent a year in excruciating pain which no painkillers would ease. I could barely look after myself. I was diagnosed with lumbar spondylosis, degenerate spondylothesis, disc degeneration and also a disc prolapse. I underwent a Navigated L3-L5 decompression and fusion (bone graft from my hip) last July. I have followed my surgeon's post op instructions, he told me that I was not to have any physiotherapy or other therapies. But he did tell me that walking would be the key to my recovery. I could barely walk when I left hospital but now am walking most days, up to 4 km at a time and could walk further if I chose to. I still do not twist my body at all, and if I have to bend over I bend my knees, not my spine. I did not wear any kind of brace post surgery. While I still have some pain, it is nothing like before and I am hoping that this will improve over time as he told me I would have a long recovery. I have long metal rods on each side of my spine held in place with 6 long screws.I guess what I am saying is that each surgeon has his own preferences as to what should happen post op, if you are not happy do get another opinion.I wish you good luck for the future, do let us know how you are getting on.
scott17436 melm1972
Posted
I had a double L4-S1 ALIF in April last year. Solved a few issues but didn't solve the pain on extension. I've just had, on Wednesday, another operation called fixation of L4-S1. Basically I now have what you've got, 8 screws and 4 rods holding everything together. This was done through 4 inch long cuts, so keyhole in the loose terms! I was in agony the day of the surgery and yesterday. It's eased a little today. Not on the liquid morphine anymore, just my normal slow release stuff plus my nerve pain meds. I'm hoping this will help alleviate my pain but I also read so many stories like yours and the others above! Fingers crossed you get yours fixed and mines works. Good luck.
michael54457 melm1972
Posted
Hi Melissa,
Not sure if I can help but I have been through a similar experience.
In March 2015 I underwent T4-T7 decompression laminectomies, T2-T7 pedicle screw stabilisation and postero-lateral fusion.
Have been suffering various levels of pain since.
Even after 22 months I still suffer occasional bad muscle spasms in my entire back area and bad pins and needles and cramps in my feet.
Don't know much about the spinal cord stimulator but a friend of mine had a similar op that you had and had one fitted because of the bad nerve pain he was getting in one leg. Said it made a big difference to the pain he had been going through.
Don't think removing the hardware would help, would make things worse if anything.
I am living in northern Thailand at the moment. Just today I went to see the Chinese doctor and got a course of herbal tea, one cup morning and night for five days. Tried it last year and it made a big difference to my pain level.
I have been taking Pregabalin and Baclofen for the nerve pain and muscle spasms but all they do is keep the pain down to a level I can stand. I use alternative medicine to lower it more, like the Chinese tea, accupuncture and Thai massage.
Hope you can find a way to ease your pain Melissa. Good luck !