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Old 12-14-2011, 03:07 PM   #1
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Continued pain 1 year post two level lumbar fusion

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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!!!!!!!
Heather

 
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Old 12-14-2011, 04:20 PM   #2
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Re: Continued pain 1 year post two level lumbar fusion

Did your neurosurgeon or the PA bother to tell you that only about 30% of those who have surgery get relief from pain? 70% do not and will have pain at some level for the rest of their lives...some worse than before surgery. A little statistic most spine docs don't tell their patients.

The hospital where I had my surgery recently released the results of study they did on DNA and post-op spine pain. Turned out that the people who have continued pain after surgery have similar DNA profiles as do the people who don't have pain after surgery....a very strange coincidence. And the docs haven't a clue as to why but it may be that for some people, spine surgery just doesn't help. The study has now been expanded as they search for reasons why.

I'm grateful my doc was honest enough to tell me the stats on spine surgery before I made up my mind. My issue was a lot of numbness and with numbness, the rate of recovery is 70% so I went with it. Had I been in pain and been told I only had a 30% chance of getting relief, I don't know what I would have decided.

I'm so sorry you are still in pain and hope that with time it comes down. Mine did....I broke my neck after having surgery and that took a good 2-3 years for the pain to subside to tolerable levels. I hope your pain slowly fades too.

Jenny

 
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Old 12-14-2011, 04:25 PM   #3
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Re: Continued pain 1 year post two level lumbar fusion

Hi Heather, Nice to see you on the board again...but am sorry for the reason why you are posting. I remember you went back to work fairly early in the recovery process and as I recall, you've had some pain all along since the surgery. Would that be correct?

Since you don't have pain in your leg, it is probably not nerve compression, or any scar tissue pressing on the nerve. It is fairly common for people who have the lower lumbar segments fused to develop SI joint dysfunction or pain in the SI joint. You might investigate that possibility. Also, even if the screws and rods appear to be OK, the hardware could be causing an issue.

Have you finished fusing?

 
Old 12-15-2011, 06:54 AM   #4
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Re: Continued pain 1 year post two level lumbar fusion

Thanks for the posts. I did not know about the stats being so low. My NS told me he could make me 85% better. Hahahahahaha. My leg pain was never the reason I went through with the surgery. My severe back pain was the reason. And he knew this. However, before my surgery, the MRI stated that both of my SI nerve roots were compressed and the left was likely deflected or severly compressed. The pain I feel is a pressure pain. It honestly feels like I have a brick in my back. My pain meds help but, what am I supposed to do? Be on them the rest of my life. I have tried coming off of them but, as soon as one pill begins to wear off, I can feel the back pain beginning to become unbearable, and that is when I know it is time for another pill. I am basically a pill popper! I am a therapist and I sit at work and pop pills all day long. Sad I know. It is depressing........But, I honestly don't know what else to do. I do walk, and I have a great ergonomic chair and now a sit stand desk all courtesy of my employer trying to accomadate me. I am grateful for that. TT, my PA has not told me if my fusion has hardened. She said it is hard to tell from the x-rays alone, so we did a CAT scan night before last. I yet to recieve the results from the CAT. Hoping to hear today. But, what if they tell me everything looks great and there is no reason for my pain. Then I am in the same spot I was before surgery. I am 43 years old. What does this mean for me when I am 50, 60, etc. I feel defeated and I am so tired of hurting constantly. I just don't know what to do. I have very little time to take care of me, and I know that is not good but, in this economy, I have to work. Thanks for letting me vent!!!!! Heather

 
Old 12-15-2011, 07:28 AM   #5
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Re: Continued pain 1 year post two level lumbar fusion

[QUOTE=jennybyc;4894936]Did your neurosurgeon or the PA bother to tell you that only about 30% of those who have surgery get relief from pain? 70% do not and will have pain at some level for the rest of their lives...some worse than before surgery. A little statistic most spine docs don't tell their patients.

The hospital where I had my surgery recently released the results of study they did on DNA and post-op spine pain. Turned out that the people who have continued pain after surgery have similar DNA profiles as do the people who don't have pain after surgery....a very strange coincidence. And the docs haven't a clue as to why but it may be that for some people, spine surgery just doesn't help. The study has now been expanded as they search for reasons why.

I'm grateful my doc was honest enough to tell me the stats on spine surgery before I made up my mind. My issue was a lot of numbness and with numbness, the rate of recovery is 70% so I went with it. Had I been in pain and been told I only had a 30% chance of getting relief, I don't know what I would have decided.

I'm so sorry you are still in pain and hope that with time it comes down. Mine did....I broke my neck after having surgery and that took a good 2-3 years for the pain to subside to tolerable levels. I hope your pain slowly fades too.

Jenny[/QUOTE]

Jenny, how are you now? Are you numbness free/pain free? thanks for your post....Heather

 
Old 12-15-2011, 08:07 AM   #6
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Re: Continued pain 1 year post two level lumbar fusion

I hadn't heard about that study either. I look forward to hearing further results in the future.

Most articles I read prior to having fusion indicated that rates of success are considerably higher for those who primarily have leg pain than for those patients whose pain is in the back. My problems were primarily sciatic-type leg pain that prevented me from standing or walking for any length of time.

I never had relief after my first fusion which was at L4-L5. It actually took two more surgeries to finally figure out what was causing my pain (which turned out to be something that had not been visible on any imaging I'd had). But since all this began in earnest in 2005, I am now virtually pain-free.

You might want to think about going to a new spine specialist for a "second" opinion relating to what is currently causing your pain. Sometimes a new set of eyes can spot something your surgeon has missed or has ignored as not being relevent.

I remember your surgery and your returning to work quite soon afterward, and my recollection is that you had quite a struggle, never really having a period where you started to feel better and then had things turn around. I don't recall a period when you thought things were gradually improving.

[B]But, what if they tell me everything looks great and there is no reason for my pain. Then I am in the same spot I was before surgery.[/B] Unfortunately, this situation is fairly common. Then you have to either accept the situation as your surgeon frames it, or you begin a new hunt for answers. Given your age and situation, I would encourage you to start the hunt all over again.

It could be that the right level was not operated on, not enough was done the first time, that there is another pain generator that was not located prior to the first surgery...etc. There are myriad reasons why you are still in pain.

The doctor who did my first fusion, and the doctor who did my second procedure both told me to in effect give up and accept that this might be "as good as it gets." I knew I could not accept that as truth until I had turned over a few more stones. So, I kept at it. As it turned out, no one figured out what was causing my problems until he had me open on the operating table...and then, it was "Surprise!!" Luckily, for me, my surgeon didn't have any other surgeries that day, so he was able to devote more time to my case than he had originally planned.

Something similar may be going on with you too....

 
Old 12-15-2011, 08:46 AM   #7
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Re: Continued pain 1 year post two level lumbar fusion

Hi Heather, I'm so sorry you are having so much pain. If you remember, we talked last year about this time regarding both of our surgeries coming up. I had a 2-level fusion at L3-L4,L4-L5. I did have alot of right quad pain which led me to my surgery. After surgery my leg pain was gone. Still had back pain but was happy to be able to walk again without the throbbing pain in my right leg.

Well in july my right leg pain came back again. I've had mri's,cat-scans,myelograms,etc...... Nothing showed up as why I was having so much pain in my right quad. I too am still taking pain medicine and would love nothing more than to get off of them. The pain meds help my back but really do nothing for my leg pain. After seeing both of my doctors (who operated on me last year) they both wanted me to consider a spinal cord stimulator for relieving my pain. They have a 5 day trial that you try and if you get alot of relief, then you can have the permanent unit installed in lower back. I talked to the PM doctor who does that and who has done over 1000 of them and he told me that if I decided to try that, then if I didn't see dramatic improvement to not even think about going forward with the permanent SCS. He said that the SCS loses about 20% of its effectiveness over time. If I only felt alittle better with it and then just forget it. Well I haven't decided yet what I'll do yet.

I went to my PM doctor (who I think alot of) and we talked and looked at my myelogram pictures and decided to try a ESI and see if that would help.
I had that shot on tuesday of this week and yesterday I felt better than I have in a long time. Short live! I went to town last night and was walking alittle to fast I guess, when I got back to my car my back felt imflammed. I went back home and started ice treatment and didn't have a very good sleep night. This morning, about the same. My lower back feels very imflammed.

So as of right now, I'm not doing that good. I'm telling you about the spinal cord stimulator as a option you might want to check out. There is pros and cons to having this device implanted but what are we suppose to do? I don't have the answer and my docs don't either.

Research the SCS and talk to your doctor about it. It's an option. Just one that is out there and they do help some people. I've yet to decide. I was hoping the ESI would help and I knew it was a gamble but it was one I was willing to try.

I've also had a knee scope and carpal tunnel surgery this year. It's a shame that back surgery can't be as successful as the knee or hand can.

I'm wishing you the best and keep us all informed. Let us know what your cat-scan pictures showed. Good Luck and I'll be back with any progress or updates on what I'm going to do. Take care.

Keith

Last edited by parman; 12-15-2011 at 08:48 AM.

 
Old 12-15-2011, 09:21 AM   #8
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Re: Continued pain 1 year post two level lumbar fusion

Hi Heather. I can understand totally where u are coming from. I had a TLIF 1 year ago at only 1 level l5-s1. I had tremendous back/hip pain and sciatica that ran all the way to my toes. Discogram was positive so I proceeded with the fusion. The sciatica has relieved some and the mid lbp. However the pain below the fused site has gotten worse, it goes into my hip and leg above my knee. He said he thought my SI Joint was bad prior to surgery and was underestimated. I went to PM doc and ofc he increased my pain meds and started tests to see if it was my SI Joint. After the diagnostic injection I knew immediately he hit the spot. The pain went away. After 6 hrs it was right back. Next they did a cortisone injection which worked a week or so then the pain returned. They did a RFA which helped a little yet didn't kill the pain. So he sent me back to a Neurosurgeon to see if he would suggest a Fusion of the SI Joint. He did all the images and we came to a conclusion I had no other choice. I went and got another opinion and was advised I needed a fusion. I can say with 100% certainty that even though I had all the diagnostic tests done to confirm IDD at l5-s1 that most of my pain originated in my SI joint. After being fused obviously u will have adjacent segment issues, which only adds to the pain in the SI Joint. I just wish more Ortho and Neuro surgeons would try and confirm this as a pain source more often. Imaging isn't always helpful but other tests are. I am now going to have a SI joint fusion done. It will be MIS by SI Bone I-FUSE. It's still early for data but my surgeon has done quite a few and had good success. I would seriously look at the SI Joint maybe being a lot of your issues. The longer it goes un diagnosed the worse it gets and conservative means will not help.. I wish u well and hope for an answer and success. XwinX

 
Old 12-15-2011, 10:40 AM   #9
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Re: Continued pain 1 year post two level lumbar fusion

TT, what was the ultimate problem? What was it that they missed? That is great that you are now pain free, almost. Heather.

 
Old 12-15-2011, 11:16 AM   #10
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Re: Continued pain 1 year post two level lumbar fusion

I haven't gotten my CAT scan results yet but, I was going through my old medical records and guess what? In 2009, I was diagnosed with [COLOR="Navy"]DJD of the bilateral SI joints.[/COLOR] They gave me injections in both my SI joints, and 8 facet injections. I hated those. And they didn't work.

Also they diagnosed me with Disc bulge L3-4, L4,L5, disc bulge with a small central disc protrusion. And Disc desiccation at L4-5, L5-S1. Also moderate left lateral recess stenosis. In my surgery notes, the NS performed:
* Bilateral decompressive lumbar laminectomies L4 and L5, and S1.
* Bilateral medial facectomies and foraminotimies at L4,L5, and S1.
* Bilateral pedicle screw fixation L43, L5, and S1
*Posterolateral fusion with harvested autograft and allograft l4, L5, and S1.
* Harvesting of autograft, spinous processes, bilateral lamina from the same incision of the use of intraoperative fluocoscopy.
I bet my SI joint DJD is still a big culprit in my pain. And, I bet the instrumentation itself is a source of pain. It is funny how we as the patient have to assume the role of a psuedo doctor.

I really appreciate all of your posts. I just want so badly to figure this out and find a way to do something about it. My reality is that I do have to work and I have very little time for myself with a husband and two kids but, I have got to find a way to help myself because sitting her at work on my big butt all day long is not helping at all. Heather

 
Old 12-15-2011, 08:55 PM   #11
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Re: Continued pain 1 year post two level lumbar fusion

You might want to ask about having a diagnostic SI joint block.

It is very common to have SI joint pain after a L5-S1 fusion.

We thought my issues were more at L5-S1 but when he opened me up, the facets at L3 were worn away. That segment was very unstable and was pinching nerves whenever it moved. The facets were worn down to little nubs so the surgeon reconstructed that segment. This had not shown up on any MRIs I had done in the past. The surgeon was surprised.

 
Old 12-15-2011, 09:03 PM   #12
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Re: Continued pain 1 year post two level lumbar fusion

I had some relief in my earlier fusions, when I was younger. But in my most recent, nearly 2 yr ago, I had some nerve pain improvement but ended up with a chronic low back ache and stiffness.
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Old 12-15-2011, 10:37 PM   #13
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Re: Continued pain 1 year post two level lumbar fusion

I see you are in Nashville. You might want to look into Prolotherapy Nashville and read up on what they have to offer. It might be worth going for a consultation if you aren't getting any satisfactory answers from your doctor.

Some people have good luck with it, and it might be worth trying prior to contemplating another surgery or procedure.

 
Old 12-16-2011, 01:21 PM   #14
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Re: Continued pain 1 year post two level lumbar fusion

Well, I am back to square one. CAT scan normal. Instrumentation in tact, no adjacent disease...blah blah blah. So one year later and the only thing I have is more pain and meds. Not what I had expected at all. And to make it even worse, the recommendation was for me to go to pain management. I have been in pain management for 2+ years. I think they wanted me to go to their PM but, I told them I would stick with mine that I have been going to for all this time. I am very discouraged. Now I am sure no one understands that I say I am still in pain. I don't even understand. Oh well, I will take my meds and continue to take it one day at a time. What else can I do? I needed this to work, I don't have the kinda of time or money to keep going to different doctors and being continually poked and proded.....Thanks for letting me vent. I do appreciate it.

 
Old 12-16-2011, 08:06 PM   #15
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Re: Continued pain 1 year post two level lumbar fusion

It is very frustrating when you are pinning your hopes to some imaging showing a problem. You never know if you should hope something else is wrong, or the CT scan or MRI reveals nothing. I went through that so many times, being told the films showed no nerve compression when I knew something was still compressing a nerve and causing my sciatic-type pain.

If you talked with your surgeon, did he tell you what he thinks is the cause of your continued pain?

If it helps any, yours is a typical experience. The doctors do not know what to do in a case like ours where the "pain generator" is not readily apparent. For the first twelve months, every time a patient goes in, he hears " the nerves are still recovering...sometimes it takes awhile...nerves are slow to heal."

Then, after the twelve month mark, often the theme changes to "I can't see anything more to do surgically...yada, yada...I'm sending you to pain management...I recommend you try a spinal cord stimulator to see if it will help relieve your pain." At this point, he is hoping to push the patient out the door.

It is at this point that you either start looking for another doctor, or, if you are convinced of your surgeon's abilities, you go back and convince him that you are still in as much pain as before the surgery...that something is still wrong...that there was never any improvement post surgery as far as the pain goes....if he has no explanation as to why this is the case and shows no indication of being willing to help you, then you might want to have a consultation with one more surgeon...to see if there is something the first doc missed. But you have to be careful in whom you pick for the second opinion. You don't want someone in the same practice, or the same medical group, or someone who may have trained under your surgeon, etc.

I usually suggest if a neurosurgeon did the surgery, get a second opinion with an ortho spine surgeon or vice versa, as the two specialties sometimes approach things slightly differently.

If your heart isn't in this process, you go to pain management and hope that things will get better with time.

 
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