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Old 12-14-2011, 02:11 PM   #1
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Continued pain 1 year post 2 level lumbar fusion...

I have posted several times over the last year and I can't believe it has been a whole year (almost)! I had L4-5, L5-S1 two level lumbar fusion. I am confused why I still feel so much pain. I described it to my NS PA, that it felt like a brick in my low back. A painful brick!!!! I have some butt pain too. But, only when I overdo it. I feel a lot of pain and pressure in my low back. I had x-rays last night and it looks like perfect allignment of the screws and rods. Because of my continued pain, I had a CAT scan last night as well. Have not gotten the results yet. What would cause the kind of pain I describe after a year post surgery? I should mention that I was supposed to have a PLIF but, once they went in they did a posterialateral fusion. I understand that means instead of putting the cages (or expensive lego peices as my surgeon referred to them) in, they fused the joints. I also had two level formianotomy, laminectomy, and facetectomies at both levels. I think that is it. I sit a lot at work but, I do change body positions as needed and I always walk at lunch. If the CAT scan comes back normal, everyone will think it is in my head. Sometimes I wonder myself. I mean I should be better!!!!!!! I am on more pain medication than I was pre surgery!!!!! Thanks for your feedback
Heather

 
Old 12-16-2011, 10:30 PM   #2
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Re: Continued pain 1 year post 2 level lumbar fusion...

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Originally Posted by musiccitygirl View Post
I have posted several times over the last year and I can't believe it has been a whole year (almost)! I had L4-5, L5-S1 two level lumbar fusion. I am confused why I still feel so much pain. I described it to my NS PA, that it felt like a brick in my low back. A painful brick!!!! I have some butt pain too. But, only when I overdo it. I feel a lot of pain and pressure in my low back. I had x-rays last night and it looks like perfect allignment of the screws and rods. Because of my continued pain, I had a CAT scan last night as well. Have not gotten the results yet. What would cause the kind of pain I describe after a year post surgery? I should mention that I was supposed to have a PLIF but, once they went in they did a posterialateral fusion. I understand that means instead of putting the cages (or expensive lego peices as my surgeon referred to them) in, they fused the joints. I also had two level formianotomy, laminectomy, and facetectomies at both levels. I think that is it. I sit a lot at work but, I do change body positions as needed and I always walk at lunch. If the CAT scan comes back normal, everyone will think it is in my head. Sometimes I wonder myself. I mean I should be better!!!!!!! I am on more pain medication than I was pre surgery!!!!! Thanks for your feedback
Heather

 
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Old 12-16-2011, 10:36 PM   #3
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Re: Continued pain 1 year post 2 level lumbar fusion...

I had my lumbar fusion 10 years ago & still have suffered with pain continually. I have to have cervical fusion now simply because they said if I font I will be paralyzed. My neurosurgeon said he thinks the pain I still have in my back is due to irritation from the screws in my back. Did they use metal when they did yours? Just a thought. I really hope you have success & get relief!

 
Old 12-17-2011, 07:56 AM   #4
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Re: Continued pain 1 year post 2 level lumbar fusion...

Seamy same post under back problems. I got a lot of replies. But I did find out that my CAT scan was normal.....so basically I should be "fixed". But I am not. Do you still take pain meds? I take more now than before my surgery! So frustrating!!!!!!'

 
Old 12-17-2011, 10:05 AM   #5
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Re: Continued pain 1 year post 2 level lumbar fusion...

Hi MCC girl. Did the fusion resolve the neuro problems, "radiculopothy" pain going down the legs, feet on fire or in a buckets of ice water, etc, etc etc. That's generally why they do fusions. To decompress nerves and correct alignment of the vertabrea, not because of back pain. A posterior lumbar usually means you have predicle screws and rods that hold things in place. and they pack crushed bones or use bone plugs , sometimes hey add BMP to promote growth but their is little bone on bone contact to work with, They basicall pack bone into those joints and the crushed bone turns solid and there is your fusion if all goes right.

Some docs routinely remove hardware at the one year point and some leave it in thinking that it's benign and shouldnt cause pain issues, However the ones that remove it ,particularly in smaller framed people do so because the hardware itself is casusing the pain, iritation to the tissue around it etc etc.. You may have excessive scarring, some people just scar more than others. My first fusion was the same as yours, L3-4 4-5, It did relieve the leg pain and for that I was very greatful, nothing really touched the nerve pain, but fusions are rarely done simply to relive back pain.

As far as alignment, a good set of hardware will maintain alignment although it's only job is to hold alignment untill the fusion takes place. The fusion material is fairly opaque particlularly when its dead and hasn't grownso their really isn't a test to tell if the the donar bone is alive and thriving or dead and just sitting their waiting to be reabsorbed over the years. My complaints were very similar but alll my complaints were dismissed. Back in the 90's they didn't keep anyone on painmeds unless you were terminally ill. The surgeons generally had some arbitrary number they felt was long enough and than that was it. Cold turkey. Genrally 6 to 10 weeks post op. If everything looked good in an xray and the neuro symtoms had been resolved the surgery was declared a success and any lingering pain was determined to be something you just had tolive with, all in your head or drug seeking behavior.

PM really has changed and done a complete 180 as far as using medication to manage chronic pain. Have you had PT, some docs believe in it and some don't. They waited 3 months for the basic PT with every surgery I had, But PT to address adhesions or scar management wasnt done untill well after the third attempt to fuse me. It may be neccesarry at this point. I dont mean the heat pack, massage and teaching of core stabililization excercises. In my case where I was told it was all in my head up untill the day the snapped hardware could be seen in an Xray after each surgery, i was tossed from one PM doc to another like a hot potatoe that nobody wanted to deal with.

After the first surgery about 2 years out they were finally able to see I had snapped 3 of the screws off right at the bone level and bent one of the rods into an S shape did they consider going back in and doing a revision. It took about two years to be able to see the the hardware was was damaged enough to be seen in an Xray.

The only thing that would cause hardware to break is if the fusion had failed and the hardware was bearing all the load. When they went back in the next surgeon said the old donar material flaked out like dried fish and I had blown the disc above and below. Hardware isnt meant to be the support system indefinitely and can break, Ive broken every set of hardware they have put in me but all my complaints of pain from non union or failed fusion were completely dissmissed by every surgeon and doc I saw untill it was visable in an Xray, which took a couple years for them to be able to visualize and except the failure of each fusion. So each surgery was about 3 years apart and I suffered imensely during those periods. '93, '96 and '99 they went back in to repair and revise, they ended up lengthening and replacing the old hardware with new, removing scar tissue and lengthening each sequential fusion. The disc above or below had tears and difuse bulging beause I simply never fused, no bone growth to hold things stable.

Fusing the joints along the side gives them very little bone on bone to fuse so they pack crushed bone material and started mixing BMP, "Bio morphic proteins to promote growth. Again this was back before it was FDA aproved and I was just a guinea pig for whatever version of BMP they were using and whatever type of bone growth stimulator the docs believed in at the time. Knowing what I know now, I wouldnt let them do a posterior fusion. Those lego pieces, give them a good flat surface to attempt a fusion.

With an anterior fusion you have large flat areas to place thse hollow lego pieces which have holes and are packed with crushed bones, or bone plugs and the hope is a solid union. If the fusion fails, the cages will slip and be displaced but again it takes a long time for this to show on films or cat scans.

Long story short, Im now fused from L1-S1 and have broken the last set of hardware they put in 1999. Odds decrease so greatly with each subsequent attempt and with each level involved, revision at this point has no chance of success. All they can do is manage the pain and Im greatful for that after 3 fusions in 6 years that failed and meds werent used beyond post op.

So the moral is, you may have a failed fusion, their is no way to tell if that material is alive and thriving or dead and waiting to be reabsorbed until they actually go in and stick an instrument into that material to check and see if it's solid or just sitting there. Eventually it will all be reabsorbed and that is clear on an Xray but that takes years. It's tough to get a surgeon to admit his surgery failed so you may have to get a second opinion, you may have to get entirely out of the loop of docs your in to get an honest opinion as no doc wants to say the other screwed up. Not that they really had to do anything wrong for a fusion to fail, some people just dont fuse. I happen to be one. Back surgery that doesn't resolve the pain or creates more is called the catch all Failed back surgery syndrome, FBSS.

It's really to soon for any diagnostic I know off to determne if your fusion grew or failed to grow other than being able to see clear reabsorption or breaking of hardware. You wouldnt reabsorb all the material at the one year point and the hardware should still be in tact at one year unless you do a tremendous amount of heavy lifting or put other stresses on it like child birth. So their could be something very wrong that simply isn't showing up. It's a long frustating road but fortunately the veiw on opiates has completely changed for some PM docs since the 90"s before these meds even existed. Some still dont believe they can be used responsably by anyone and do interventional procedures only.

My best advice is get another opinion far outside the loop of docs your in so that the doc doesn't feel like he's steppping on your docs toes which gets uncomfy if they both work in the same hospital or play on the same golf course. Your not crazy to still have pain, but they rarely do exploratory back surgery. They can check the integrity of the fusion if they attempt to remove the hardware which would get you an answer much quicker than simply waiting untill your heardware looks like a twisted train track or a broken latter if they used horizontal rods to prevent twisting.

Hang in their, dont let a doc dismiss you. Ask about PT specific for scar management and myofacial release if you havent recieved it and keep plugging away. Unfortunately we have an amazing capacity to endure pain. But if I were you I would do what I did and continue to complain if it hurts untill you have an answer or it becomes blatently clear whats going on with your fusion via diagnostics like Flexion and extension Xrays, observed flouropscopy where screws can be seen pulling in and out of holes during flexion and extension. I have 12 screws * rods, and a 6 level fusion that failed. 6 levels because I have a 6th lumbar vertabrea. MOst of the bone has been reabsorbed and I have several broken screws, bent rods and screws that pull out of the holes when I bend over or extend my spine. Unfirtunately I'm not willing to try again as each surgery has tought me a new meaning to what severe pain is which makes you have to reset the entire pain scale. What once was a 9 would be a 5 on my scale 18 years later. Odds of succesful revision on 6 levels and the 4th back surgery are about 240% chance of failure so no moere surgery unless I loose control of bowel or bladder function or a rod pops through the skin. MY pain is fairly well managed with an implanted pump but even that has limits if I want to stay awake and engaged in life.I shoot for a 5 on good days whihc to me is a 50$ reduction in pain. Sure, they could crank it up and I would be a zombie that couldn't stay awake, but that's not qulaity of life either.

Goodluck, Dave

 
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Old 12-17-2011, 06:15 PM   #6
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Re: Continued pain 1 year post 2 level lumbar fusion...

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Originally Posted by musiccitygirl View Post
Seamy same post under back problems. I got a lot of replies. But I did find out that my CAT scan was normal.....so basically I should be "fixed". But I am not. Do you still take pain meds? I take more now than before my surgery! So frustrating!!!!!!'
Nobody has really been able to tell me why I still have so much back pain that still radiates down my leg. My neurosurgeon thinks it's from the screws in my back - says the screws could be keeping the nerves & tissue irritated!? I def. Take pain meds- I take talwin nx 3x day, baclofen 3x day, amitriptyline & lyrica. The reason I take the talwin ( not sure if it's a really good pain med) but I don't seem to get as physically addicted to it. Use to take percocet but couldn't stand if I missed a dose or two , I'd be sick. Now I'm going to have cervical surgery because I have a very compressed spinal cord & having a LOT of pain & numbness & tingling in both armes & hands. Hope you find what's causing so much pain. I know awful it is to hurt & nobody can tell you why!

 
Old 12-19-2011, 08:05 AM   #7
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Re: Continued pain 1 year post 2 level lumbar fusion...

* A posterior lumbar usually means you have predicle screws and rods that hold things in place. and they pack crushed bones or use bone plugs , sometimes hey add BMP to promote growth but their is little bone on bone contact to work with, They basicall pack bone into those joints and the crushed bone turns solid and there is your fusion if all goes right.

Yes, I have two rods and three screws on each side. My PLIF was aborted in the process of surgery. He said the base of my spine was too deep so he decided to do a posterialateral fusion (fusion of the joints) instead. He did not put in the cages or what he referred to as very expensive lego peice. He also did say another reason he changed his mind was due to the fact that my dura was too thin. As far as I know I have no BMP but, I do have cadaver bone.

I am fortunate that my pain management doctor does keep me in supply of the opiates I need to work. I work 40+ hours a week and I am a therapist so I sit and listen to other people on a daily basis. I need the medication or, I would simply be too misrible to concentrate and listen to my client. My doctor has me on 20 mg of oxy TID, 15 mg of roxi BID, and one soma at bedtime. I also have a script for Klonopin for anxiety when I need it. I am just so tired of hurting. My gut tells me this is a hardware issue. I feel like I have a brick in my back and a ton of pressure. My sciatica is vertually gone but, it was never my first complaint, the back pain was.
thanks so much for giving me your detailed advice and ideas. Do you work? How long have you had to deal with your back issues. Thanks Heather


*It did relieve the leg pain and for that I was very greatful, nothing really touched the nerve pain, but fusions are rarely done simply to relive back pain.
I had very little leg pain and he knew that 80% of my pain was mechanical low back pain. I had no disc between both levels, it was basically bone on bone with nerve root compression.

 
Old 12-19-2011, 10:10 AM   #8
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Re: Continued pain 1 year post 2 level lumbar fusion...

@musiccitygirl- no I dont work, I was a nurse when I started having really bad pain & burning in my lower back & leg. Waited about 5 months & tried to work before I had surgery. I got on disability about a year and a half after my second surgery ( they tried a discectomy , didn't work so they had to do a fusion at l4-5 ,probably should have done at l3-4 also. But I chose not too. I have cadaver bone & screws & they took strips of bone from my hip to hold the bone in & screws the strips in?. The only problem with that is I have is PAIN in that hip. They think it is bursitis but they gave me an injection in that spit for it& not sure what happened( one dr told me he probably hit the bone) but I could turn over in bed, get out of bed without screaming for 3-4 days! My ns I'm seeing now is the first dr that told me my constant back pain & leg pain may be from the hardware itself. He said he could go in & take the hardware out but doesn't want to fool with it right now because he said my cervical problems are much more dangerous & needs to be taken care of now. My only fear is letting them do the surgery & take out the screws & that nit be the problem. I REALLY do not want to have another surgery & it nit take care of the pain because like you it is soo frustrating to have pain after surgery & you feel like I should be " fixed" because I had surgery. Good luck!

 
Old 12-19-2011, 10:46 AM   #9
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Re: Continued pain 1 year post 2 level lumbar fusion...

Nanacan,
I am so sorry you have to suffer thorugh this with your neck as well. OUCH. And you def could not continue being a nurse. I am glad I am in a job that I can do. But, if I weren't working, I could take much better care of myself. I wish you well and I hope things continue to get better. I really wonder if it is not the instrumentation that is the culprit. I wish they could just take it out and I would be like "pain free". Sounds too easy. I don't know about the meds I take. I def think I need them but, I worry that I will be on them forever, or even worse...my PM sees that my XRays and CAT are clean and desides I don't even need them. That would really suck. Hopefully that won't happen but, if it did I guess I would live through it like everything else. Have a great day!!!! Heather

 
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Old 12-19-2011, 11:38 AM   #10
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Re: Continued pain 1 year post 2 level lumbar fusion...

Hi Musiccitygirl, MY first surgery was in 93, That failed and led to one fusion after the other that steadily grew in length. The last one in 99 left me bed wridden for a year untill they finally got me on long actingmeds. This was just a couple years after the invention of Oxycontin, Prior to that the only long acting med available was MSContin which was prety much reserved for the terminally ill. I was 36 in 99 when they did the last revision and ended up on SSD after a 2 year fight. The last set of hardware has broken too and that fusion failed.

Iwasn't untill i had an intratehecal pump implanted in 2002 that I was realy able to stay upright for more than 20 minutes at a time. I slowly began working out, lost 30 lbs and I was able to return to work, But after an 8 or 9 shift hour shift nothing touches the pain, I dont sleep for 2 days after working but it's better to get out of the house and remain as active as possible. I still excercise daily and work part time, 12-15 hours a week. I don't know what's worse, The pain or the length of time in pain. 18 years is a long time. Without an amazing and suportive wife I never would have made it.

I had my first surgery 30 days before the birth of my daughter, Fortunately we decided to have children before the initial injury or that never would have happened given the toll it took on us financially.

The pump was the best decision for me because I am able to achieve the same level of relief as I did with high dose orals with far less cognative impairment, not that you can tell when I post at 4 am or after going 2 days without sleep, But no more falling alseep when Im just watching TV, I was able to learn a new trade that I wasl ucky enough to have a firend in the buisness that got me in the door.

With fusions the biggest risk is damame to the disc above or blow, The fused areas puts added stress on those discs, Each time they went back in , my fusions grew in length, First it was L3-4, 4-5, Then 3-4, 4-, 5-6, Yes I have 6 lumbar vertabrea, its not that uncommon, and the last revision was L1-S1. The doc said I would have what he called the crunchies untill my own crushed donar bone and the BMP solidified. I still crunch and grind to this day. Keeping my core strong and stable using what I learned through PT is what allows me to get through a 8 or 9 hour day, but im pretty wrecked for a couple days after.

Surprisingly, I dont take any BT meds or muscle relaxers while at work, I stlll feel the cognative imapirment from orals and as long as Im buisy and distracted I can get through a long day without any BT meds, The pain and spasm doesn't set in untill I stop moving and get home. Your issue may be the disc above or below, have you had any imaging done of those discs? It's unlikely you have a S1-S2 problem but you could certainly have an isue with the disc above.

Have you talked to your doc about removing the hardware, as I said befoe, some docs do it routinely, even more so on smaller framed women that can actually feel the hardware through the skin. I can feel the screws that have puled out and sometimes they will pull out a qtr to a hald an inch and when I try to starighten up they wont slide back in the holes without a wholelot of effort on the floor. This is another thing that is easily eeen in an Xray, when their is no bone growth into the threads and the holes are bigger than the screw. Kind of like sticking a nail into dry wall and yanking it back and forth untill it just hangs in the hole.

Obviously, my situation is worse case scenario total failure to fuse and breaking the hardware. When reading these forums it may appear this is common but the fact is that people who have succesful fusions and simply move on with life dont come to pain management forums and talk about how succesfull their fusion was. They just move on. So we get a bit of a negative or slanted view of all back surgeries. Obviously their are pro athlestes that have fusions and disc surgery that return to the field, Joe Montana, Troy Aikmen just to name a few.

The risk of failure increase with each surgery and with every level involved. All but one surgeon I have consulted with have asked me why I think a another even longer revision would be a sucess after so many failures. I did talk see one guy that specialized n repair and he had a rediclous plan to do a global 360, run a bar from hip to hip to mount the posterior hardware to and he wanted to remove 2 ribs from each side and gu op two more levels and include T12 and T11. Thainkng of that just makes me cringe and when you add in all the factors, 4 surgery, 8 levels involved, the odds of success work out to be negative 240%, 20% chance of failure with each level involved and odds decrease 20% each time they go in, But I try to make the best of it and have learned the worst thing you can do is be sedentary and sit around and get more and more out of shape, depressed and generally unwell. I had my first heart attack in 2001 before mi had the pup and my pain was moderatly managed.

My docs do their part tomanage the pain and I do my part to stay in shape and stay as active as posssible.

Their may be a simple remedy like removing the hardware, but untill they go in and check the integrity of the fusion, the surgery plan is up in the air, It may be a simple removal or a total revision that includes more levels. I think I cought you were a PT. I can only imagine the the irony of being in that position, where your helping others recover from their surgery while wondering what the heck went wrong with yours.

If you have confidence in a doc that believes removing the hardware is the answer, it would be hard not to take that risk if a sulotion or remedy seemed that simple. I have certainly met people over the years that remolval did solve all their issues. Then again, if the meds mange your pain sufficiently and you able to do your job, remain positive and enjoy life, It's a big risk.

No matter how bad things may seem, They can always get worse. That's why I mentioned having to reset my own pain scale,. When unimaginable pain becomes your reality and their is no such thing as a 12 on the scale, you have to reset that scale and make 10 something you can't imagine,like having an arm ripped off by a piece of farm equipment or whatever you would consider a 10, 10 is just a number I dont use, it's for pain I haven't experienced and I know things could be worse because they did get worse with each subsequent surgery.
Take care, Dave

Last edited by Shoreline; 12-19-2011 at 11:57 AM. Reason: grammer

 
Old 12-19-2011, 05:35 PM   #11
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Re: Continued pain 1 year post 2 level lumbar fusion...

music city-

there is no way i could sit that long even with my pain meds, and compared to mine you take baby asp lol, and you sound like you are doing great inspite of your ongoing pain issues;i sure envy you. when i was taking oxycontin i was titrated up to 80mg 3 times a day; with out it i coulnt get out of bed, my pain affects low back radiates down both legs w deep sharp pain in butt;also neck w pain n numbness in hands. now i am presribed fentanyl patch and it is so much better-much more alert; and the pain relief is steady where i really grew to despise the pills-the highs n lows n living my life 8 hrs at a time....well i hope you continue to get better-bestwishes
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Old 08-04-2012, 07:14 PM   #12
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Unhappy Re: Continued pain 1 year post 2 level lumbar fusion...

I had a lumbrosacral fusion to my L4&5 in 1991. Today I am 41 years old and still suffer from severe lower back pain. In fact as I sit here at my computer I am terribly uncomfortable due to the pain in my lower back and down my left leg. I have had several xrays done and know every single screw in my back has broke but the doctors tell me there is nothing they can do for me. I occasionally have numbness in my left butt cheek where they made the incison to remove the bone fragments from my left hip. Since it has been so long since I had the surgery I can not honestly tell you my pain is worse than before surgery because I can't remember my level of pain back then. I can say that I never expected 21 years later to continue to suffer like I am now.

I have been to the doctors over and over and nothing. Its like talking to a brick wall or they don't seem to believe me. If anyone has any suggestions on how to handle my situation my ears are open. I do know that at my age my pain tolerance is not like it used to.

 
Old 08-05-2012, 05:35 PM   #13
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Re: Continued pain 1 year post 2 level lumbar fusion...

Music city gal. I fractured my back 3 times. Finally in Aug 2008 i underwent a 8 hr lumbar surgery. Actually very similar to yours. In my book its goes like this, once a bad back always a bad back. I have never met a person whom have had a serious back surgery like us and come out totally pain free in years to come. I actually could use another surgery due to severe degeneration in the many levels above were my bracket was placed and have nerve compression. But until it effects me walking I refuse todo another surgery. Its very frustrating when you have such a surgery and hoping you have great success and its not. Keep in mind from the surgery you will develop scare tissue which eventually can compress the nerves as well and make alot of pain. I actually have mass amounts of scare tissue all in the area were my bracket is placed and two surgeons have said we can go in and clean it out. But i say then you go clean it out but then it develops again from that surgery. And they say yes thats true. All i can say from experience is if the pains that bad find a dr that your comftorable with and understands pain mgmt.Feel good and if you ever want feel free to message me anytime. Getting advice from other pain mgmt patients is a great way to learn about what we live with and take daily.

 
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Old 08-06-2012, 06:19 PM   #14
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Re: Continued pain 1 year post 2 level lumbar fusion...

Freddy,
Tell me more about yourself.....how do you manage your pain now? I had some recent surgery unrelated to back but, they completely screwed up my post op pain control because they didn't look at what I was taking pre op. OUCH is all I can say. I am still basically the same. I am still working full time as a therapist, and dealing with chronic low back pain. It hurts so much. And I need to do more to take care of myself but, the to be honest, I make a lot of $$$$$, and I can't leave my career to be massaged, stroked, and PT'ed all day. It sucks. All I have time for is the meds to help me get through the day. But, on the positive side the meds do get me into the 5 range and I have a pretty productive life. Just gets depressing sometimes. Heather

 
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Sharim HB User
Chronic Spinal Post Op Pain Measured in Years

I am addressing this to everyone who still has "post op" pain after spinal surgery. First off each of the three times my neurosurgeon operated on my lumbar spine he never claimed he would cure my pain. As a matter of fact he stated so each time. I knew going in that I would probably continue the spine pain and radiculopathy and weakness. And this has continued for me. There are many reasons for continued pain and new worsening pain. We may have other levels that are becoming unstable and for those of us with multiple level osteoarthritis this is probably very true. Another reason is the build up of scar tissue and cysts that form after any insult to the spinal elements including epidural injections. Failure of the bone to bond and or fill the empty disc space, and finally failure of the instrumentation/hardware: screws break, implant breaks or dislodges and so on.
I don't know about the rest of you but I had a hell of a time in the beginning of my journey. It took me about 16 months to find the right doctors. I had a neurologist in the early days that denied I could have bilateral butt and leg symptoms. He was horrible, he would sit and play with his computer while I was in for office visits. He put me through 16 weeks of PT, that's 3 times a week for 16 weeks. I only have horrible thoughts about him even now. I finally found a great team with my PMS (pain management specialist) my neurosurgeon. By the time I got to the neurosurgeon I have a severe entrapment of the L3 nerve root, herniated discs with central and para-central "protrusions" (herniated, bulging, protruding it's all basically the same thing it's a "nomanclature" issue meaning that each person reviewing/reporting on radialogical tests uses their own preferred explanations for disc herniations) I had moderate to severe lateral recess stenosis and so on. The neurosurgeon said "I would operate tomorrow if I could but I can't get you in until next week". He was clearly concerned that we fix this quickly. So the first surgery was a decompression at L2-3 and L4-5. This lasted a little while. I went back to work, too early (office work, heavy computer work). The following year I was back and had another decompression surgery but this time in the operative report there was scar tissue and a couple of cysts. 18 months later I had my third and final surgery, decompression at L2-3 and fusion at L4-5, with removal of scar tissue and some cysts.
This did not alleviate any pain, some strength came back but now it's 3 years later and I have some bad *** pain. I cannot make my bed without dropping to my knees the pain is so bad, I cannot cook for the grand children without again dropping to my knees by the time I am done. 1/2 hour in the car and I am ready to scream. Shopping is ok but the pain hits when I sit in the car. When I wake in the mornings if I am on my back it takes me several minutes to assess how I am going to get out of bed, what can I move without igniting the pain?
I have just begun reading articles about the scar tissue from this surgery and the damage that this could be doing. I do form scar tissue, years ago I lost both ovaries to scar tissue from my appendectomy. It just wrapped around them and cut the blood supply. The OB/GYN said he never, ever saw such a thing before.
This scar tissue thing has a name "Arachnoiditis", adhesive arachnoiditis, epidural fibrosis: is chronic inflammation of the arachnoid layer of the meninges" So that is one of the layers of the tissues covering the spinal elements. What is happening is the scar tissue is forming and involving this layer. Some of the causes I recorded: "surgery, repeat surgeries and epidural injections". "This cannot always be diagnosed by MR or CT." The radiologist needs to really be up on this and looking for it otherwise they will miss it. Yet another part of this illness that is very difficult to diagnose and another illness that they want to label as a "syndrome". We all know what happens with "syndromes", they are not always recognized.
Now I also have been referring to my illnesses as "Primary, Generalized, Idiopathic, Osteoarthritis" (PGIO). Primary-not secondary to injury, Generalized is multiple sites most often BILATERAL, Idiopathic-that really is a re-stated primary as this mean "no known cause", and OA needs no explanation. Also this form is familial more than one family member will have this, it hits early, before 50 and as far as I am concerned is insidious. When people hear arthritis they just shrug and go "oh yeah just arthritis". This is not just arthritis but a compilation of several different types of OA. I have it in my cervical spine, in T1-2 and T11-12 and T12-L1, L2-L5, (thoracic not formally dx'd because my insurance refuses to pay for that MRI or CT scan it is not necessary (this is kind of true it is expected with all the other DDD or DJD), elbows, hands: base of thumbs and assortment of fingers, knees, ankles. I tell people for medical history "I don't yet have it in my hips". Each incident or location of OA is a different ailment. Notice I am using the plural as this is my case all bilateral DJD/DDD (degenerative joint disease or degenerative disc disease)
I also have Fibromyalgia or Myofascial Pain as PT insists on calling it. I have bilateral carpal tunnel (2 surgeries-no good), and for some reason my hand surgeon decided that I needed my ulnar nerves moved from my funny bone to the inside of the elbow. I think that my neck issues played a part in that surgery decision he just insisted it needed to be done. The muscle in my hand below the pinky and ring finger is done, no movement.
Again, Fibromyalgia is a syndrome, this is a real illness just because they could not find causality and it can be a diffuse clinical presentation it get's called a syndrome. It is a real disease!
Those of us who continue to have this much pain after surgery(s) need to get much more insistent that something is really wrong. They try to label us as "malingerers", "lazy" and so on. We need to push back, keep trying new doctors, keep going and going until someone listens. When they come into the exam room and don't sit down to talk they are not prepared to "LISTEN". If you get a bad vibe from a doctor get another one.
I had a great job, I lost it, they did not care for me coming into work taking all the meds I have to take, taking off too much time for doctors, treatments, and inability to go into work. I did not "earn" a raise the last year I worked, I did not even have a chance to earn my bonus. I really loved the my job. I traveled internationally with my job, it was the kind of job where you made a difference, could make great changes affecting a lot of people for the better. I lost it, I couldn't hold on. Thank goodness for a benefit package that gave me disability insurance.
But back to the reasons for continued pain in-spite of surgery, following doctors orders-PT, exercise, proper rest and so on. Especially when the pain changes and becomes un-bearable, pain that changes or moves needs to be assessed properly. We need to continue to fight the good fight if not for ourselves than for our descendants who will get this disease. Get in on clinical trials. I joined a DNA trial so did my mom and brother (you can find clinical trials at spineuniverse.com. These are simple trials that only require a little spit, you don't have to go anywhere. Join the on-going trial with the Arthritis Association, you fill out forms every 6 months, questionnaires on your continued treatment and medication modalities this helps doctors to make treatment decisions with you. That is a large impact trial that they pull the data from every so often and you will see first hand news reports regarding treatments. The questionnaire asks about meds and which help and don't help, treatments-which help and which don't. It's a really important trial a chance to make a difference.
Sorry I am a bit long winded today but there is so much new information coming out that it needs to be transmitted to those it affects most, us. I am sorry for all your pain, get the right treatments, the right meds and the right doctors.

 
The following user gives a hug of support to Sharim:
Nanacan (03-06-2013)
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