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1 yr post fusion & still in horrible pain

Started by wkb98 on 06/03/2010 12:12am

Hello all,
I'm new to this board, but have been a member of the WebMD board for years. A quick history, I have suffered from sever low back pain for 4 years. I had two herniated discs (L3-L5), DDD, and spinal stenosis. i tried literally everything to avoid surgery, but 14 months ago I had a two level 360 fusion. Since the surgery my sharp pain, radiating pain, and numbness in my feet and legs has gone away. The docs say everything has healed and fused as it should, but I am still in constant horrible pain. The pain is now localized in my lower back and is a very intense ache that never goes away and gets worse when I go to bed. The docs don't think it's nerve damage. I'm still having to take 6 percocet 10's a day. My pain management doc wants to try an injection where the screws meet the bone. He said if that helps then the screws may be the source of the pain and may need to be removed. Does anyone have any ideas what could be causing this pain? Is it likely the screws? Are there any tests to be done? Are there any common reasons people experience pain like this after a fusion? I'm running out of options and don't know what else to do. The pain is taking over my life. Please help. Thanks.

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17 Responses

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Hi wkb, there are times when the screws just happen to cause problems and need to be replaced. I think its great ur dr wants to try the spinal shot in the area where ur screws meet bone to determine if ur pain decreases and if so, then ur a canadite (sp) to get the pesky buggers removed. I wish u the best, good luck:)

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Whoops, meant to say "removed" NOT replaced.

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So sorry about your pain. I had spinal fusion with laminectomies 8 weeks ago. Even before my surgery my Dr said I will always have back pain. The surgery was for my leg pain. It mostly worked, but now I get flashes of pain in my thighs. It feels as though all my nerves are just under the skin of my upper thighs. It hurts just to touch them. Dr said it was because he had to dig out my nerves, because I waited so long to have surgery. I also have back pain, that has not and never will go away. So now I have different pains. Also my Dr is cutting my meds, I shouldn't need anything he says. I disagree.

I would try anything that comes around. Go for the injection .

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Candyk, sounds like we have the same doctor!. Mine also told me after my two-level lumbar fusion in September I would be in pain for the rest of my life and it was something I was going to have to live with--but the strongest pain meds he's willing to give out are Soma and Tramadol. I got a 30 day supply of Norco after the surgery but no refills. So I decided to change my pain management over to my family doctor who's known me for a long time and knows I'm responsible about taking meds properly. But he's nervous about narcotics, so I just keep getting higher doses of Tramadol.

Wkb98, my main post operative problem is a huge seroma (fluid-filled sac) that is pressing on the nerves around the incision site (L3-S1). It is assumed it is the primary cause of my hip and thigh pain and left leg and foot numbness. Even though it's been nine months since the surgery, the seroma is apparently still not diffused yet so I haven't had any improvement. The seroma was instigated when my drainage tube had to be removed the day after surgery when it was discovered the bulb was completely filled with spinal fluid (and why I was screaming in pain when I lifted my head). It took five days for that to heal, as my doctor didn't want to go back in...but that was a heck of a lot of fluid in there with no place to go.

I'm unemployed now and on SSD but Medicare doesn't start for two years. I've been hanging on to COBRA from my job but simply can't afford it any more. But if my doctor suggested what your doctor's suggesting to lessen the pain, I'd do it. What's another five or six more medical bills?

Good luck and keep us informed!

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Sounds familiar...My husband's situation was similiar. What they found out by an Xray followed up with an MRI to confirm and then followed up with a 3hr nerve block was 1 out of the 4 titanium screws had broke and was pushing on a nerve. Causing intense constant pain. he has since had the hardware removed so his added pain is almost gone. What he feels now is the pain that never went away from his original double fusion surgery. At least this pain he can tolerate better than the screw touching the nerve.

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Hi all, I had 3 level fusion L3-L4-L5 with titanium screws on 1/12/2009. I have had increasing pain since then. (I should mention that I also have fibromyalgia.) I seemed to improve the first 3-4 months but once I started PT, i got worse. I have been thru - land PT, aqua PT, 7 epidural injections, chronic pain/fibromyalgia group for six weeks, TENS, narcotics, etc. etc. etc. I had to retire early as I could not take the pain of driving 1 hour to work each way and working as an AA for 8 hours a day (sitting). My surgeon says "the fusion is healed and doesn't want to see me anymore." He tells me I will have to learn to live with the pain but before the surgery he told me I would be golfing and walking after 2-3 months post-surgery. Now he says I have severe compression between L5-S1 which he never mentioned before the surgery, and that is what is causing my pain. I am desperate for relief and am considering some alternatives such as acupuncture, spinal cord stimulator, pain pump, chiro.....I don't know which way to turn. My current pain doctor will not give me more than 2 Vicodins a day (5-500) and I feel like my life as I knew it is essentially over. I was an avid golfter, worked out 2-3 times per week, and walked 3-5 miles at least 5 days a week. I have gained about 30 pounds (I know, I know....I am trying to diet now.) Now, I can barely make it down my driveway to the mailbox and back because of the pain and the leg weakness. I just turned 60 but I feel 80. I want my life back. The neuro I went to a few weeks ago looked at my history and said....."people with rheumatologic diseases (fibromyalgia) don't usually fare well with surgery" in other words, I should never have had the surgery. I have lumbar pain, pain in the right "periformis", down the right thigh, and extreme weakness in the right leg. This is the same pain I had before the surgery. Now I get nerve pain down my left leg (never had a left leg problem before the surgery) but only in certain positions, like lying in bed and trying to go to sleep. Most of the time I have to sleep with my knees elevated on a big firm pillow. So lets cut to the chase, If anyone has found relief with any methods, please let me know. I am at the point of being desperate.

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I AM 9 MONTHS OUT OF A SPINAL FUSION L-4.RUPTURED DISC.....AND 3 DEGENERATED DISCS REPAIRED...ALSO STILL IN SO ,MUCH PAIN I AM SERIOUSLY THINKING OF ENDING IT...BEEN WORKING STANDING ALL DAY LIFTING UP TO 50 LB BOXES AND I AM IN SO MUCH PAIN I CANNOT STAND IT ANYMORE..MY DR.WOULD NOT GIVE ME A WORK RESTRICTION BECAUSE HE SAID THEY WILL FIRE ME...WHICH IS SO REDICULOUS........I WOULD RATHER BE FIRRED THAT HURT MY BACK AGAIN...I AM ALREADY IN SO MUCH PAIN I CANT TAKE IT ANYMORE......THIS IS NO LIFE FOR ANYONE...THE LOWER BACK PAIN IS SO BAD I JUST CRY AND STAY DEPRESSED....I FEEL SO HOPELESS.......MY DR TOOK ME OFF PAIN MEDS BEFORE I EVER WENT BACK TO WORK...BUT THEY DIDNT EVEN STOP THE PAIN WHEN I DID TAKE THEM.....WONDER IF WE WILL EVER HAVE ANY RELIEF??

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darla, I have real Bad 10 plus PAIN every day also from lower back. I'm going for surgery in about 30 days. The percentage is about 33% on this back surgery I`m having(a Fusion). The pain management doctor said we have a 33% chance to get worse also. The odds are not in our favor. I have two children and a wife that's about only reason I'm going through with this. Now on the discussion that I jumped in on. Talk to your doctor at pain management and get them to give you OxyContin 60s. I was taking the medicine for approximately 10 years that your on there is a lot of ups and downs and mood swings. Good luck to all. Sam

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It is critical that fusion patients have their hardware inspected (MRI is best; some are sufficiently checked by XRays) at least yearly; our clinic does followup tests at 1, 3, 6, and 12 months post-recovery then every 6-12 months, 6 if pain persists (it usually does once the nerves grow back). Your MD is wise to look for structural damage first--the hardware then your bodily structures... Following that, fusion patients are prime candidates for facet joint radiofrequency nerve ablation, especially if arthritis is present (the pain from inflammation responds well to deadening the nerve response). Best part of this treatment is that before proceeding with it, an injection of lidocaine is injected at the nerves that are suspected to be causing the pain to determine if the procedure (which literally quickly zapu
the nerve endings, causing a quick damage that causes the rest of the nerve shield to die--the mortality only requires a quick application of heat and electricity to allow the nerves to completely kill their response, which takes 2-4 weeks for complete relief, though the lidocaine injected at the start of the ablation procedure generally provides relief for the initial time while nerve mortality is progressing--this is--both the preliminary test (that gives short term relief through numbing of the nerve) and ablation procedure (takes 15 minutes to an hour total, depending on how fast the tech preps you--gets you positioned, cleans the area, etc, and while you should have a driver and an ice pack immediately after and some people benefit hugely from taking a Valium an hour before leaving for the appointment, it is entirely outpatient)... Everything is done with a live XRay (real time so your movement and the entire treatment site are able to be viewed so surgery is not needed)--a very new technology hovers above the spine so the doctor is able to be very precise in where he puts the needle (also when, if the analgesic provides relief, he puts the probe into the treatment areas for the procedure). To be absolutely perfect in locating the region to ablate, that is, to crank up some power and heat going through the probe to the tiny nerve area, the physician's probe sends energy into the spot that makes the skin thump because the nerve responds to the power "buzzing" through the probe, which feels similar to your eye twitching with spasms; as he is right at the nerve ending and the technician slowly turns up the power of the probe, the twitching increases until the doctor is certain of exactly how long to apply the heat through the same probe...

The relief is tremendous for those it doesprove helpful for (lumbar spine is especially helped--mobility is a key improvement from lumbar RF nerve ablation). Cervical ablation is the least predictable and also the most likely to cause residual stiffness and pain; sacral vertebrae also less certain to achieve relief but not as likely to experience pain. For lumbar and lower thoracic fusion, definitely inquire--a couple of YEARS or more relief and increased motion from fifteen minutes of procedure is certainly a worthwhile possible benefit with relatively minimal risk (apart from some being very nervous and the short--15 seconds or so--time at the highest temperature feeling for some people like a bee sting at some spots).

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another thing to mention: for the member who said they are going to have surgery, SO FEW PATIENTS NEED/ARE BEST HELPED BY FUSIONS ANYMORE. My own fusion was 1) an EXCEPTION TO THE NO-SURGERY 90+% RULE and 2) only because 5 vertebrae (3 lumbar, 2 thoracic were reduced to PIXIE DUST--extreme burst fractures with less than 20% of their mass remaining being the criteria for fusion where I went (and the 1st place I refused care at--risked death for a better chance at life)... I had 9 EXTRA vertebrae fractured thoroughly (but not totally burst), too, and a split heel (calcaneous dissection), both ankles broken in many places, and much bone loss in my tarsals... So please consider that you may get non-surgical relief elsewhere... It is really worth the immediate short-term cost to not face debilitation, disability, potentially not being able to work... Even just not being bed bound for a month more than makes up for the cost of a flight to see the best docs (who happen to take Medicare in the case of Dr John Birkedal @ Wake Forest University Baptist Medical Center (the hospital that I--having faced a severe trauma--insisted on being transferred to... They saved me from death to start, from paralysis to boot, and EVEN FROM STAYING IN A WHEELCHAIR after falling 40 feet. How many people land on slabs and also spikes of granite after a four story drop... And survive? I was told what I already knew: if I hadn't literally been smashed to bits, no surgery would've been needed, and that is NOT true most places... That spine center is the 2nd best in rank for many reasons, and I would never trust anything less extreme than my own 14" of burst-to-rubble spine to a fusion--it does NOT help most pain--it worsens it. Please consider that your entire future may be ruined by a fusion and 90+% do NOT need it.

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I always had problem getting pain meds for my chronic back pain until I followed one doctor's suggestion to be seen at a pain clinic. After seeing my XRAYs and MRIs, the pain clinic Dr. had no problem prescribing methadone for pain.It has really made my quality of life better, and my own Dr.s have continued to do so. I think once a pain specialist okays the pain meds, other Dr.s are less afraid of the DEA. Small cities may not have one, but ask your Dr. or search the internet.
Regarding fusions: If you have structural or mechanical issues with your spine, you may as well have it done. Spondylolisthesis is a good example. Scoliosis is another. 2nd opinions are always a good idea if you're uncertain.
Good luck to you all. PAIN SUCKS!!!

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I Had a spinal fusion S1 -L1 on Nov 2003 still have pain in lower back and legs.
my doctor said that maby their was nerve damage , no to much to do other than therapys and pain medications .
I even had ozone inyectios in Mexico that help me to reduce only the leg pain
dont recommend to remove screws because their is no information that this will improve your condition and you still have to go again to surgery

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Hi! I have a similar problem. One year ago I had a fusion and now I am having issues with the hardware or my SI joints. Have you found anything to help with the pain? Are you going to have your hardware removed?

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Hey,

In september 2009 I had to have a thoracotomy (removal of 1.5 ribs, collapse of the lung etc) to get my double thoracic fusion done at T8/9 and T10/11. I then had another surgery last year to remove some of my L5/S1 disc although it wasn't a fusion. I am still in unbelievable pain and am taking oxycontin and endone every day. Much of my pain is to do with the entire rib area where I'm experiencing hypersensitivity of the skin because my brain is confused by the nerve signals. my other pain is constant across the middle and lower back and is a dull ache as well. There is no reason for it anymore as I have been told I am technically 'fixed' except for a little bit of remaining bulging disc in the lumbar. After a surgery like yours, I am not surprised that you are still in pain. There is a very common reason people experience pain like that after a fusion - it is extensive surgery and you may have developed chronic pain syndrome. I have learnt a lot about chronic pain and my first suggestion would be to make sure your pain management doc is actually a fully certified pain specialist doctor and has a good reputation with spine surgeons. I did a rehabilitation program with a so-called 'pain specialist' who was actually just a physiotherapist with no medical training and did not listen to anything I said about my pain. It was complete bullshit. I ended up seeing a proper pain specialist who was able to explain the science behind chronic pain and suggest some treatments. My advice to you would be to keep trying new things even if you are sceptical about them, but at the same time to not get disappointed if you can't find a quick fix.

Chronic pain doesn't necessarily mean there is something technically 'wrong'. The simplest way I can explain it is that the brain gets confused and reads signals from the spine as pain signals even when nothing is wrong. You can try techniques that will 're-train' the brain but this may involve physiotherapy of some sort. Then again there may actually be something wrong so it's obviously worth investigating. Mental state can also make pain worse - anxiety, depression etc.

But yeah if you rule out all other options you may want to explore treatments for chronic pain!
good luck

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Hi I just had a rebuild of L2-S1 sept of 09. I was having rod and screw pain. They did a metal test amd confirmed the pain. Jan this year I had them removed. Well I wasn't fused completely so he put smaller ones in. I still have that pain but I keep developing a seroma the entire size of my fusion. I had it asperated 110cc = 1/2 cup. It filled up the next day. They then went in and physically removed it and put a drain in for 2 days and told to keep rolled up towels in a back brace for pressure for as long as I could stand it. That lasted 2 weeks not even well I've got another one, now they say I need to just let my body absorb it, of course we dont know how long that will take. But it is very painful just like you are describing and it feels like 500lbs of pressure on my lower body. If they inject the Screws with Lidacane and u feel relief then that's it. But a MRI will show If it's a seroma. I wish u good luck I feel your pain. I am a 32y/o mom of a 12 y/o boy and this was my 12 th back surgery.

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Hi I just had a rebuild of L2-S1 sept of 09. I was having rod and screw pain. They did a metal test amd confirmed the pain. Jan this year I had them removed. Well I wasn't fused completely so he put smaller ones in. I still have that pain but I keep developing a seroma the entire size of my fusion. I had it asperated 110cc = 1/2 cup. It filled up the next day. They then went in and physically removed it and put a drain in for 2 days and told to keep rolled up towels in a back brace for pressure for as long as I could stand it. That lasted 2 weeks not even well I've got another one, now they say I need to just let my body absorb it, of course we dont know how long that will take. But it is very painful just like you are describing and it feels like 500lbs of pressure on my lower body. If they inject the Screws with Lidacane and u feel relief then that's it. But a MRI will show If it's a seroma. I wish u good luck I feel your pain. I am a 32y/o mom of a 12 y/o boy and this was my 12 th back surgery.

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I just brought my husband home from Cedars Sinai where Dr Siddiq was suppose to do some fusing but when he opened up my husband the previous surgeon had used screws that were too long and one screw was sticking in his pelvis causing constant pain from the minute he had the previous surgery on 4/20/11. Dr Siddiq removed all the hardware and filed a couple spurs off. 3 days after surgery 5 all the previous pain is gone. Hmmmmmmmmmmmm.

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