Failed back surgery with little hope

[JoAnnaRF]

I am 35 year mother of 5 and in June 04 moved a sofa bed which put me on the floor with severe low back pain that went down left leg into foot with tingling, numbness and cramping in arch of left foot. Sent to a Neurosurgeon and had X-Ray and MRI showing herniated disc at L4-L5. Tried all PT with pain meds and when this failed had Microdiscectomy in June 04. Recovery was worse than expected and symptoms were actually worse. It has been a year and I am trapped in my own body. I have been in Pain Man. for 8 months with RACZ and epidurals and every medication they could think of. Hydrocodone is the only thing I can tolerate or am not allergic to.The pain is constant and severe in hips legs and feet. My feet swell in closed toed shoes causing my toenails to turn black. Had another MRI in May 05. Surgeon said I was fine. Live with it. I have a childhood history of J-R-Arthritis but he said nothing about that. No other tests were offered. I was just sent away. The MRI notes say I have a conjoined L5 and S1 nerve root but Dr. says it wouldn't cause my pain.Also noted was disc space narrowing with small right paracentral protrusion mildly impressing the tecal sac at T11-12. The doc also made no mention of this. All I know is that I am miserable and don't know what to do next since he refuses to help me. I sleep only 2 to 3 hours a night and wake up "stuck" in bed. The depression of living this way continues to worsen and I can't just "live with it" anymore. Any suggestions or thoughts would be much appreciated.

[Leslie M]

AFTER SUFFERING FROM A HERNIATED DISC AND SCIATICA FOR ABOUT TWO YEARS MY MOTHER HAD BACK SURGERY TO CORRECT. "BAND-AID' SURGERY WAS RECOMMENDED HOWEVER THE DOCTER SAID THE DAMAGE WAS BEYOUND WHAT "BAND-AID" SURGERY COULD RELIEVE. (I AM SORRY BUT I DONT KNOW THE NAME OF THE SURGARY SHE ENDED UP HAVING)HER BACK SURGARY WAS MORE INVASIVE THAN "BANDI-AID" SURGERY. IT WASNT LONG AFTER HER CORRECTIVE SURGERY SHE BEGAN HAVING SYMTOMS OF NERVE DAMAGE. THE FEELING OF WALKING ON BROKEN GLASS. SOME DAYS ARE BETTER THAN OTHERS,  BUT THIS IS A CONSTANT FEELING WITH RELATIVLY NO RELIEVE.  SHE OF COURSE IS TAKING SOME STRONG PAIN PILLS FOR THE LITTLE RELIEF SHE GETS.  AND LIKE OTHERS SHE WENT BACK TO HER SURGEON WHO COULD FIND NO FAULT OF HIS OWN. AFTER MANY  MRI'S AND X-RAYS LATER HE TOLD HER SHE WOULD HAVE TO LIVE WITH IT.  LIVE WITH IT? THIS WOMAN HAS A HIGH TOLLERANCE FOR PAIN. MY GOD SHE LIVED WITH SCIATICA FOR TWO YEARS. IF YOU HAVE EVER HAD SCIATICA YOU KNOW PAIN. SHE DESERVES SOME RELIEF. SHES EARNED IT. I ONCE SAW A MEDICAL SHOW WHERE A MAN HAD LOST HIS HAND AND HAD SEVERE NERVES DAMAGE AT THE END OF HIS ARM. THE DOCTERS PERFORMED A BRAIN SURGERY WHILE THE MAN WAS AWAKE,  THAT BASICLY SHUT OFF THAT(THOSE) NERVE(S) CAUSING THE PAIN. A PEDIATRIST TOLD HER THAT SHUTTING OFF THE NERVES WOULD MAKE HER FEET FLOP. I FIND IT HARD TO BELIEVE THAT THERE IS NO HOPE FOR MY MOTHER AND OTHERS LIKE HER. THIS PHENOMENON MUST HAVE SOME RELIEF SOMEHOW, SOMEWHERE. PLEASE HELP.
WITH MUCH THANKS
LESLIE

[john janiero]

Folks, I had on June 17 my second Microdiscectomy for an L5-S1 herniated disc.  This second procedure has not resolved itself as good as my first operation in Jan. of 2003, sad to report.  In my 1st operation for this problem, I recovered from surgery and was back at work within 17 days of the operation.  I am currently at 19 days post surgery and still feel pain when walking or standing for 20 minutes or more.  I am not sure if I will be another "failed back surgery" statistic, but I am sort of feeling like that might be the case.  I was hopeful before surgery that my result might be the same as the 1st operation for this same problem, but I guess I was to optimistic.  I guess just the fact that this is the 2nd time that this disc has been operated on maybe means the chances of successful outcome probably decrease, which sucks.  I hate the thought of having to live with this pain, which is not at all predictable.  I cannot cough, laugh, sneeze, or strain too hard when going to the bathroom.  Sitting for any period longer than 15 minutes gets very uncomfortable quickly.  Laying down on my back or on the side are really the only positions in which I can get any relief.  I would welcome any other people's comments who have had repeated herniations and resulting repeated microdiscectomies and their outcomes. I will be devoted to physical therapy as soon as I am able to start that up, and will definitely be dedicated to losing weight, but I fear that I may have to live with pain forever and pray that my back does not get even worse than it currently is.  Sharing info. helps at least to know that we are not alone.

[JoAnnaRF]

I have been to both. Neuro and Ortho. A Neurosurgeon did my surgery. I have also been seeing a Rheumatologist.
I feel for you with he pain you describe, it is all too familiar. And having company can't be helpping matters. I hope that the injection beforehand helps you to get thru it but if not just let them know what you are going thru. They will understand. As much as you are looking forward to it, sometimes these things that are supposed to be "fun" become things that we just want to "get thru" in one piece. I wish you all the best.
JoAnna

[Enik]

I didn't realize that you had already had so many failed injections!  I think that the reason mine have helped is that I have stenosis - at least that's what I've read. However, after this one I have to wait 9 months before I can have another one.
The main reason I am having this last one (which hopefully will help!) is that I'm having company starting next week and lasing for 3 weeks. Otherwise, I would try to wait as long as possible.
When I sit the pain kind of subsides; but the minute I start walking or standing it comes back and is intolerable.
I don't see how you are coping!  I really admire your stamina.
You have 4 children to care for; I find it hard to take care of my little Boston Terrier.  My left leg feels as if knives are going through it constantly - especially the outside of the calf.
I know I'll have to eventually have an operation, and, as I said before I will no doubt go to the Cleveland clinic in Ohio.
Surely you can be helped. I wish you the best of luck in finding the perfect doctor - are you looking for a neurosurgeon or an orthopedic surgeon?  I have no idea which to choose.

[JoAnnaRF]

I have actually had two sets of the injections. I believe 7 in all. Each time I was taken to the recovery room to see people who were once hunched over like me when they walked in the door, now walking erect and praising the epidural injections. I was so jealous as I was rolled out of recovery and continued to walk hunched over and limping. My injections were given by a Specialist that does these things in his sleep, so I do not blame him. He has said that my problem is simply not treatable with injections. If it was going to work, it would have by now. So back to the Neurosurgeon. Then went to Orthopedic Surgeon who sent me to a Rheumatologist who wants me to see yet another Neurosurgeon. I feel like the typical "hot potato". Like most of the people on this board, Fixing me has become a full time job.
I hope you are doing well. And thanks so much for the words of advice.

[JoAnnaRF]

Actually there is a Cleveland Clinic less than an hour from me. I have considered this option but have yet to research the network to see if any of the Physician's affiliated are covered by my insurance. I am happy that the epidural injections worked for you to some extent and your son as well. My case was not so fortunate but I don't blame my doctor for that. The space was too small due to excessive scar tissue. I do wonder if the epidurals should have been offered before surgery instead of after. But one can wonder about the if's and why's forever. It doesn't change today. Thanks for the input and I will definitely look more closely at The CLeveland Clinic options.

[Enik]

I hope you can find a competent doctor approved by your insurance company!  Isn't it sad that we have to put our health in the hands of an insurance company and can't decide for ourselves whom to see??  I, too, am having trouble finding a good doctor. I'm not sure about how to research to find out what doctors have had successful back surgeries. After reading about so many failed surgeries, I'm starting to feel that it's no use to have it. Good luck with your research!  
About the epidural shots - my first shot didn't work at all. The doctor couldn't find the right place. Apparently, you must feel the medicine going in the area which is painful.  When I had the second shot, I knew it worked because I felt it in exactly the right area. The doctor said that it was very difficult to do.
When I asked him why, he said, "because you have DEGENERATIVE stenosis."  Actually, the MRI reading said I had diffuse degenerative changes and mild spinal stenosis. I'm not fond of the doctor, and I can tell that if I did have surgery and had problems, he would not be at all sympathetic or helpful.
Perhaps the epidural could help you.  I have a narrowing also, but an experienced specialist in injections can find the right spot.

[Enik]

I have not (yet) had back surgery and find all your comments very interesting. However, I do disagree with the success of epidural injections, if performed by a knowledgable doctor.  My shot was not uncomfortable and worked like a charm, even though I have degenerative spinal stenosis. The problem I have is that these shots do not necessarily last very long when successful.
My son, who is 44, had a shot 4 months ago for 2 severe herniated discs (protruding); he is doing great - no more sciatic pain or back pain.  I, on the other hand, have not been so lucky. My shot has only lasted a little over 1 month.
In my opinion, the most important thing is to make certain that you have a competent, very-experienced neurosurgeon (or orthopedic surgeon). The reason I joined this website is that I have a friend who has been very satisfied with the care she has received from the Ohio Cleveland Clinic.  I realize that this is a distance to travel; but if I decide to have surgery I feel that my health is worth the time and expense. Perhaps there is a Cleveland Clinic within your traveling area?  (no, I do not work for the Cleveland Clinic!!!)

[JoAnnaRF]

er_gyrl:
Our stories are almost a mirror of each other! I feel for you. Are you in the U.S.? Sounds like you are somewhere else. But yeah it sounds like your doc just blew you off so to speak.. Take your films to another and see what he says. As for the epidural shots, I'd rather eat broken glass than to go through that again. So I don't blame you saying NO WAY to that suggestion. Maybe it would be different if they actually did any good at all.
So just keep looking for a doctor that will listen and help you.
The best of luck to you! JoAnna

[er_gyrl]

WOW!! It is really great to know I am not the only one in the world suffering...I had a decompression surgery in Nov/04,at the L4/L5 & L5/S1 levels, when they went in to operate they found that I had conjoined nerve roots at L5/S1, which at that point they seperated, also I herniated both discs and they cleaned that up as well as i had a Laminectomy at L5..

I am 30 years old, hurt my back at work, i have 4 kids and man the pain is still excruciating, down my leg into my foot.... Since the surgery I have lost feeling in my right foot, last three toes...I went back to my surgeon he ordered a MRI which showed my levels were well decompressed but my L5 nerve root has a anterior displacement,from the surgery...I realize that once you have surgery you are never the same, but my q is, why is it when I brought it to my surgeons attention, he made it seem like nothing......he told me to go for epidural steroid shots...FORGET IT!! been there done that...it hurt like hell..

Then at the end of my appointment with my neurosugeon, he expressed to me that he was closing his practice and moving to the united states, so what I wanna know was he not interested because he wouldn't be here to stay on as my doctor??? As far as I am concrenedI have reached the point of utter frustration, I am finding it difficult to work, play w/ my kids etc.....and I don't know what to do.........................

DOES ANYBODY HAVE ANY SUGGESTIONS????

[er_gyrl]

Thanks for responding, you are right I am in Niagara Falls, Ontario, Canada..It is just so frustrating, I really liked that doctor I think I saw three, until I was comfortable enough w/ him...

There aren't very many choices here,I might see what there is over the boarder see if I can get a referral over there, anyways hope things work out for you as well, keep in touch and let me know how things are going for you..

BEST OF LUCK!! er_gyrl

[JoAnnaRF]

I went to see an Othopedic surgeon who took more X-Rays and said I have severe arthritis all down my lower spine. He is sending me to see a Rheumatologist. Hopefully I will find answers one of these miserable days!
All of you looking for a place to vent your frustrations with people going through the same sorts of things, I have found a terrific message board that is so active it is almost like a chat room.For anyone interested, it's at
www.messageboard.spine-health.com/
Good luck to all who read this!

[bubbasviagra]

well i wish i could ofer a little hope but i like your father have been dealing with this same problem for two years now .. it started simply as a fall off a ladder landing on a stiff right leg.. it jarred my back and it hurt but i went back to work.. well over the course of two weeks it gradually got worse and worse with my thiegh burning then going numb like it was put to sleep... i went to a neurologist and a damn good one name DR Yarremsetty .. yes he is indian but a very compassionate man who really cares about patient first... he reviewed the mri and determined i had rupture the L4, L 5 .. so first we tried three series of epidural steriod injections .. because i hate to go under the knife.. and when that didnt help he refered me to a neurosurgeon who did a microdisectomy .. well that made it worse and by worse i mean worse.. so from that point i went in for a disc-o-gram or milogram what ever you want to call it .. i call it the inquisition bed of torture.. it hurt like hell and they gave me interveinous morphine for pain and i really didnt get a buzz .. any how the pain finally went down and i went on home the following week i went back to my surgeon and he said i needed minamal invasive fusion surgery well i havent had it yet .. cause im fighting with workmans comp about the need .. while im sure there are a few masochist's out there who like the idea of seven hours under the knife i dont!!!!! but after taking oxycontin for two years and gradually working up to 80mg twice a day.. im still in a lot of pain but i dont like the idea of being a junkie either so i am hoping that the fusion will work if my lawyer can swing the surgery for me ... ISURANCE BASTARDS....... any how maybe your dad needs better pain management before i started on oxycontin i spent close to a month in the bed.. yes its addictive but a miricle drug when your really hurting.. i have three small children and my life is just starting at 34 yrs old im not ready for the grave quite yet .. so i'll have to deal with the drug side affects at a latter date.. i hope i had better news but back injury is a real *****.. it's one of those things you just have to do the best you can with have your dad adjust his pain meds if the ones he's on are'nt working.. with the right combo it's possible to live your life one day at a time out of the bed...

[breenie]

My dad had a herniated disk and 2 bulging disk.  He had surgery and was fine for 10 days and then all of a sudden the pain was horrible he had a high fever and couldn't walk.  Called Dr. he said nerve ending were coming back to life.  Well for 3 more weeks he just kept getting worse and worse, finally my mom took him to the ER cause pain was more than he could bare.  He was admitted and a Ct Scan was done and then a MRI and was found that he has diskitis and osteomyelitis. HE was in hospital for 5 weeks and was sent home on IV and oral antibiotics.  He still is unable to walk without a walker or move without severe pain.  He does go to pain management. I just wanted to know if their was anyone who has been through this and what do we have to look forward to. When ask the Dr. he just says the pain will get no better and that he will have to another surgery with bones fused together. My dad is so depressed thinking that this pain and immobility is all that he has to look forward to.  He is only 53 and had plans for his retirement in 2 years.  Please if any one has any info it would be greatly appreciated. We need something to give him hope.

[CCF-Neuro-M.D.-PW]

Its unfortunate that the surgery was not more benficial. What the persistent back pain is exactly from is not clear, and I cannot tell you what it is with the information that you give me. Without any MRI evidence that there are disc fragments or recurent herniation, anotehr surgery is unlikely to benefit. CT myelogram may provide more information about disc fragments or residual stenosis or root stenosis. An EMG is unlikly to provide much information in teh setting of chronic pain and previous surgery. A conjoined nerve root would not cause pain in itself inless it was compressed. A small paracentral disc protrusion is also unlikely to be causing symptoms. A rheumatologist may be able to pinpoint non-neruological ie soft tissue pain elements and comment on your history of JRA.
Until the origin of teh pain can be identified, you should seek a comprehensive pain management program with psychological orpsychaitric support especially if you are beginning to feel depressed
Good luck

[JoAnnaRF]

Cranky,
Thanks so much for you input. Since my surgery I have had 2 sets of the epidurals which just irritated the situation. After a year the Neurosurgeon finally sent me for another MRI and when I saw him for the results he was very condesending, rude and defensive. He failed to mention all of the findings on the MRI, just mentioned the area he had operated on. He has ordered NO new tests to try and help me after he promised me he would "FIX" me. After a year of miserable patience on my part I now have an appointent with an Orthopedic surgeon that specializes on the spine. No other Neurosurgeon will even see me since someone else did the cutting saying they won't touch someones elses mess. My Pain Man. Doc now walks in and tells me all about his vacations and personal life while he writes out another script for pain meds. I ask what next and he says this is it. I am done with both of these doctors. I need my life back and hope that the Orthpedic Specialist will finally be able to help me. I will insist on the tests you have suggested and cross my fingers. At this rate I see myself in a wheelchair before I turn 40.
Thanks again for taking the time to fill me in on these tests.

[jhenry]

JoAnn,

My best advise to you is to find a better doctor.  Preferrably a Orthopedic and a Neurosurgen.  I had 2 back surgerys within 10 months.  The first one, the doctor totally messed me up and made things worse and when I told him I was getting worse not better, he said to do more exercises.  That's when I decided to find a doctor who could identify the problem and correct it!

Over the next three months I interviewed and researched doctor's to perform this task.  I lucked out and found 2 great ones, who found the problem with a simple xray and the other doctors couldn't identify the problem with all the other tests I had performed; MRI, Cat Scan, Emg and Milogram.

Don't stay with the doctor who won't help you!  Ask family, friends, other doctors and check on the internet to find a better doctor.  I'm sure your problem can be corrected with the right doctors.  I'm back to normal, doing whatever I like and I'm 61 years old.  Good luck!

[cranky]

Have you had an NCV/EMG to try to pinpoint exactly what nerves are being affected.  I have seen on alot of boards that alot of neurosurgeons have an attitude that if I did surgery and your not fixed it's not my problem, or if it's not on an mri then it doesn't exist.  I finally had a myelogram on a tilt table with flexion and extension views, my neurologist recommended it, the ongoing compression to my nerves in the central canal was very obvious and surgery was done, but if the mri was the only test that was done I would not be walking today.
Neurologists have a pat comment which is, there is nothing that I can do for your surgically, so why do we continue to treat with these guys?  Go to a spinal specialist, an orthopedic who specializes in spinal surgery and spinal conditions and get treatment that will do some good.  
I had a shoulder injury several years ago and they continued to treat me with steroid injections and returning me to work where I continued to tear my shoulder up.  Surgery was finally done and to this day I cannot pick up a coke can with my arm due to the nerve damage that was done.  Medicating a problem is not a solution when there is nerve involvement!