Hello Everyone,
I have had several discussions on the board about my chronic pain due to FBSS (Failed Back Surgery Syndrome). I had a workplace accident in 2003 that resulted in me “breaking my back” I endured three surgeries, one of them to repair a dura tear that happened when the surgeon nicked my dura. (Nicked me? Damn near killed me!) The surgeons fused me from L3 to S1. Since that time I have been saddled with terrible pain in my lower back radiating to my legs mostly terminating at my knees.
To treat the pain I am taking a ton of morphine everyday and 3 or 4 percocets for breakthrough pain. In order to fight the lethargy from the morphine and percocets I take amphetamine to keep me awake during the day. Needless to say I don’t like the drugs, but have little choice as the pain is overwhelming without them. Each year or so I have to up the meds because tolerance is causing them not to work like they should. I also use a TENS unit for temporary relief. I am 45 now and no longer able to work because of the injury. Between the pain and the drugs it makes it impossible. I do miss working very much, not only the money, but the social interaction.
So, here is the problem. I have seen every doctor I can think of looking for a solution. Unfortunately there doesn’t seem to be an agreement on what to do or even an agreement on what is wrong. 12 years of schooling and no one seems to have a clue why I am hurting so badly. They have talked about putting in a Spinal Stimulator, sort of like an internal TENS unit. I have vetoed that idea because it apparently doesn’t work much better than the external unit and I have talked to a few people who have had them implanted. More than 75% of them told me it wasn’t worth it to have it done.
The only other surgical option that I have been offered is for the surgeons to go in and remove the titanium screws and rods that held me together while my spine fused itself together. The thinking from the surgeon is that the hardware is causing the pain, possibly from resting on or putting pressure on a nerve. So, this is the surgery I am contemplating. However the odds of success isn’t that great. I am being quoted “possibly” 50/50 on it helping. In fact it seems that the approach is “I really don’t have a clue, but maybe I can open you up and take a look around”. Kinda scary don’t you think?
So, that is what I have for an option. Basically I can agree to let a surgeon cut my lower back open for the 4th time and take a look around and pull out the hardware, yet no firm word on expectations or outcome. Normally I wouldn’t even consider something like this, but what are the other options? Do I not try and keep tossing down narcotics by the handful? My biggest fear is that being only 45 that the meds will not work in 20 years. My tolerance keeps going up and there is only so much of the meds you can take before you stop breathing.
I know that you aren’t a doctor. I am not looking for medical advice, although I will be more than happy to listen if you have a suggestion. What I am looking for is what you think you would do. Would you take a chance on the surgery or would it not be worth the risk? Is a 4th surgery one too many? I really don’t know what to do and talking about it helps me think. Thanks in advance for your responses.
I would keep going to more doctors and doing more research. Then I would probably try the surgery if nothing else presents itself as a possible solution. I’d figure you’re not likely to be worse off afterward from the way you’re describing it. 50/50 isn’t bad odds if the possible negative outcome isn’t likely to be worse than it is currently, and not doing anything isn’t a feasible solution for you in years to come.
My back was banged up at work in 1998, so I have some perspective on chronic back pain. You’re lucky - it sounds like narcotics bring some pain relief for you. I might as well swallow small pebbles, curl up and sob.
With your sciatic pain, it seems fairly obvious that the nerve roots are compromised. Have you ever had an upright MRI? One of those takes a look at your back under load, either seated or standing, rather than lying down and letting things relax and open up.
The instrumentation from your earlier fusion shouldn’t be affecting the nerves, but never say never. A three-level lumbar fusion shouldn’t be such a horrible thing, but unfortunately, yours didn’t go well.
Are you seeing a neurosurgeon or an orthopedic surgeon?
Sorry to hear about your pain. The narcotics are finally working, although it took years to get the right combination. Still, there are times when even the morphine doesn’t work and a bad day is the result.
I have never had a upright MRI, good suggestion, I will mention it to my doctor. The surgeon that did the surgery was an orthopedic, but the one suggesting the hardware removal is a neurosurgeon. I really think that he doesn’t have a clue what to do and is only suggesting this as “something”.
As far as the narcotics, yes they seem to be handling the pain at the moment, but I do want to get off them. There are too many negatives about being on them. Everything from constant constipation to the tolerance issue. Plus, I don’t really like the thought of having to do a “speedball” just to stay awake.
You would think that a 3 level fusion wouldn’t be that bad. I have been told by various doctors that because the fusion site is so low it is problematic. But, as bad as I think that I have it, I know that there is a lot worse out there so in a weird sort of way I am thankful it isn’t worse.
Your situation does sound very difficult. I have had two surgeries on different parts of my spine with good outcomes in both cases (and believe me I an thankful it turned out so well). You can consider my reply in that light.
The surgery they propose, removing the hardware, sounds like it is low risk - it is hard to see how that could make your situation worse. Lots of back surgeries have high potential to make things worse, which is a great argument against trying them, but it doesn’t sound that way this time. So, the downside doesn’t sound bad. Of course it would mean missing work and being in pain, for most people - but for you that is not even a change.
If doctors think it plausible that your hardware is hitting a nerve or some such, and think the surgery is worth trying, if I were you I would go along with them.
I’m picturing not much disadvantage to trying the surgery, and a 50/50 chance of a huge advantage, so it sounds pretty good.
Of course, learning something else (like whatever an upright MRI tells you) without going through the surgery is almost free compared to the other options, so exhaust that approach first.
Since I am not a doctor and have no business healing people, this consult is free.
Thanks for your thoughts. I am really glad to hear that your surgery went well. Refreshing to hear a good outcome for a change.
Still unsure of what to do. Perhaps I am wary of another surgery because of the experience with the last 3. The recovery time was long (many months) and very painful. The worst was the staples right along my spine. I can handle a lot of pain and such, but for some reason the staples along my spine made me very queasy. It itched so badly and was very uncomfortable and when they pulled the staples out I swear I wanted to throw up. Overall, the whole surgery thing was not pleasant.
But, most of all on the first surgery the doctor nicked my dura and I ended up in the ICU for 2 weeks. I realize that this surgery is nothing like the other one I experienced, but as the old saying goes “once bitten, twice shy”.
Reading my post I hope that I am not coming off as a self absorbed whiny cry-baby. I am just so tired of hurting all the time and being on the drugs. The pain and loss of a career effect me in so many ways, not the least of which is an in and out battle with depression.
I sometimes feel “less” of a man because I can no longer work. Seeing my wife head to work everyday makes me die a little inside each day. I tried to explain to my wife that it is different for men than women (she said she would love to stay home all the time) as I think men identify themselves by what they do. It is very hard to talk with friends as they are always discussing their jobs, promotions and accomplishments. It makes me feel embarrassed and ashamed that I am not among the working any longer. Perhaps I am hoping that by taking a chance with another surgery I might be able to return to the workplace one day.
I’m having my fourth back surgery next week. They’re going to remove three screws on the left side of my lumbar spine from my fusion last June as well as remove a bit of bone to make more room for the L5 nerve root. Hopefully, this will rid me of some of the pain I’m having and allow my left foot drop to begin healing. I’ve thought long and hard about this. The neurosurgeon assures me that this is a much simpler operation than my fuison and that there is virtually no risk of anything being worse as a result.
It’s always scary to have any surgery – especially multiple spinal surgeries. However, continuing to live with this drop foot and in chronic pain is not something I’m willing to do. The benefits outweigh the risks for me. Once you’ve seen enough doctors to realize that you have little choice, then you have to make the decision. Get the best surgeon you possibly can, prepare your body to be in the best shape possible, and if you must, have the surgery. If you can survive without it, then don’t let them cut on you.
I know that the situation stinks. It’s your life, though. Decide what you are willing to deal with, make the choice, then realize that no matter what happens, there was nothing else you could do.
Best of luck to you. I hope everything works out beyond your wildest expectations and you are one of the “miracles” doctors sometimes talk about. Be positive and relax. Trust yourself and the experts.
Sorry to hear of your troubles, I’m in the same boat. They can’t figure out what is causing the worst pain I’m having, so they only work on the obvious problems. I have my 5th surgery coming after the new year due to a broken fusion at L1-2 and 3 of the 4 discs below it blown out. I haven’t had to stop working yet, but it’s not far off if they have to keep upping the drugs.
I do have a dorsal column stimulator, and while it certainly didn’t help as much as I wanted it to, I am worried about it coming out with the next surgery. It has to be removed for the other work.
Can’t really say what you should do, I just avoided the surgeries until the problem was bad enough that any downside of the surgery didn’t outweigh the current problem. I feel like I’m at the point where I have no other choice than to let them cut on me, even though expectations are not high. I hear more bad than good about work done in the lumbar region, but in this case you may be OK having the hardware out.
Whatever you do, I hope you find some relief.
I have absolutely no medical qualifications whatsoever, so take my suggestions at your own risk. Have you consulted with a good chiropractor? Maybe they could make adjustments that could help. What about a physical therapist? Could they suggest a routine of strengthening exercises that could relieve some of the pain?
Good suggestion, but already tried. The Chiropractors won’t touch me, period. They take one look at my x-rays and tell me there is nothing they can do. As far as PT, just yesterday my wife and I talked to a trusted PT, one who my wife knows and has complete faith in. She reviewed my records and sadly told me that she didn’t think that there was anything she could do to help me with the pain. I don’t have much in the way of physical limitations, except for extreme bending ie: can’t tie my shoes or put socks without raising my leg up. I can do most anything, the problem is after I do it I am in such pain that I end up in bed for a day or two.
To give you an example, I just re-grouted our shower in our master bath today. A very simple job, one that required not much in the way of exertion but I finished about 6 hours ago. I am in so much pain that I am laying in bed typing this. The morphine is not effective tonight and the percocets aren’t helping much either. Thankfully my wife is understanding and will give me a massage and hold my hand when it seems I can’t take it any longer.
It is really sad, because I want to be productive and do things. But, every time I do this is the result.:smack:
I have a tremendous amount of sympathy for you on both these things. First, though my surgeries went well, I had steroid injections first (which were insufficiently helpful). During the first injection they nicked the nerve root and I was fully awake for the brief sensation this caused, which people who haven’t had spinal nerve injuries cannot imagine. I am not the squeamish type and I handle pain pretty well. I’ve had over 40 kidney stones and know what pain is about, and when I recently had some minor skin surgery with suturing I did well enough without any general or local anesthetic at all. But having the nerves themselves messed with, and having it happen where they join the spinal cord or caudal equine, is a whole new category that goes way beyond pain. People who have not dealt with this just will not understand at all. This has made me more “twice shy” than I could have anticipated. It is not an issue of ability to handle pain, it is an issue of instantly generating a new and obscure phobia. Now when I go in for another injection I am an anxious wreck for days in advance; I feel more worry than before an actual surgery (which is much higher risk even if still fairly safe). I feel genuine panic and start getting irrational about trying to avoid the injection. Messing with the nerves is just unfair and out of bounds.
And, second, work is like a body part or something, at least to many of us, and to men more than women I bet. Being out of that game is, to me, like being on the sidelines of life itself. I like vacations and enjoy the occasional excuse to be out of the office, but that’s relative to a basic framework that is work-oriented or at least stands partly on that pillar. Especially, to hear other people say they envy it, or to have them in any way infer some intention on your part to go along with the out-of-work situation, is really offensive. I have had some outages associated with chronic respiratory disease caused by workplace chemical exposure and can report the same kind of feeling you describe.
My husband is currently recuperating from his 5th spinal surgery - 3 were cervical, the last two have been lumbar. His orthopedist works with a neurologist and both are in surgery together, and I’m very impressed with them. It helps that the orthopedist is a friend of the family’s and he’s also a professor at Johns Hopkins. If you live near Baltimore, I’ll give you his name…
I should clarify - there have been 3 different orthopedists - the first did a cervical, then our friend did the next two to fix what the first guy didn’t. Another did the first lumbar (we didn’t want to do the drive to Baltimore again) and less than a year later, the pain was back even worse. Now, less than a week after the re-do surgery, he’s virtually pain-free, except for the incision, obviously. We decided the results from a really good surgeon are more than worth the 2+ hour drive each way.
Anyway, I’d recommend you consult different surgeons and perhaps look for an orthopedist who works with a neurologist. Do a lot of your own research - I know my husband was watching videos of the surgery he was going to have so he could discuss it with the doctor, and he read everything he could find. That’s why, much as he dreaded it, he decided to go with the 5th surgery. (Last time, I hope.)
Good luck to you. His pain wasn’t nearly what you’re describing, and he was in agony. I can’t imagine what you’re dealing with.
Best of luck to you on your upcoming surgery. Please do me a favor and report back if you can. I am curious as to how the removal of the hardware went and if it helped you at all.
And to everyone who has responded, thanks so much for the kind words. It is tough to be in this situation, but I have a wife and kids who love me,a Great Dane to keep me company when I am hurting and a good sense of humor which helps me get through. I just hope that one day I can re-join the productive people of the world.
I have all of my thoracic and all but 3 of my lumbar vert fused but was lucky enough to have a successful outcome. I’ve had times over the years of varying problems but the surgery didn’t fail thank god. I have had a few times where I had to make a ‘devil you know is better than the devil you don’t’ decisions and have always gone with the devil you know. I don’t know how anyone else can really advise you, it’s all dependent on how you feel and your future prognosis but I wish you luck with your decision and pain management. Best to you.
Ditto on what FairyChatMom said. Find a good surgeon, one who specializes in Failed Back Syndrome. Also, read some research on spinal stimulators. Talking to other patients in the waiting room isn’t research. Most studies find them to be effective, and they have very few risks. I assume you aren’t a doctor, but make learning about your condition and who treats it and what treatments exist your job from now on. The more educated you are, the better the choices you will make. In your situation, you need to make the best choices possible.