9 months post lumbar fusion, with pain and doc wont listen

I am looking for someone who has the same problem I do - almost fully fused single level L5-S1 after 9 months yet when I try to return to a physically strenuous job, I experience flare ups. The weather looks good inside my spine via CT and XRay; however, just 30 minutes on my recumbent bike sends me into a good level 4 pain. I have explained my job duties to my ortho from day one. I think he understands what I am saying, but then he returns me to my job "usual and ccustomary with no restrictions". As you know if you go through lumbar surgery, you can feel good one day and overdo it without realizing it so that the next day or days or week your body feels like it was hit by a bus. My doctor refuses to acknowledge anything wrong even though I complain of left leg pain shooting down to my foot. I had a hardware block a week and a half ago. Thought it worked at first but now I'm not so sure. I am considering getting a second opinion from a different doctor and look into a spinal cord stimulator. I am 48, in good health and need to be physically able to work because I make good money at my job and cannot afford to lose it. Does this scenario seem to fit anyone?

BRNSHUE in San Diego

Hello and welcome to the chronic pain forum. I am sorry to read that you are still having a lot of trouble. I do not know what you do for a living but if Its pretty physical there is a real good chance you will not be able to do the work. This is real common. Once a person has surgery their back is weakened, no way of avoiding that. Have you been tried on any of the nerve meds like Lyrica, Gabapentin or Cymbalta to name a few? Sounds like you have some nerve involvment going on from the pain you are describing. In all honesty it can take a good year to 18 months to completely heal from having a fusion.

Something else to consider is getting a 2nd opinion with another dr to just make sure it all looks solid. I would do plenty of research before considering a SCS unit. They either help or they don't. In fact you can use the search feature here at the forum & type in SCS unit & you will be able to pull up a lot of info.

Anyway, I wanted to pop on and say hello & welcome aboard.....Take care...Susie

Hello Brn. Welcome to the chronic pain forum at HW.

Sorry your still having issues but as Susie said its not so far out post op that any Drs going to be overly concerned. Spinal nerves can be raw and irritated for a year as your body's attempting to mend.

I know its difficult to be patient and give yourself a break but you will benefit in the end from not overdoing things. I can't understand your Dr not listening to you about the physical demands of your job. Do you by chance have a physical therapist? Sometimes they can be an alliance between you and Dr.

If nothing else then yes a second opinion may be in order but be warned your still considered you to be post op status and many surgeons have a thing about other surgeons work.

Good luck!

Hoooo-booyyyy!

Now that presents a challenge. I am much like you in that I tend to push myself very hard, and my PT's have to have eyes on the back of their head because I'll keep trying to "play" with the equipment and truly work out.

We got fusions, and primary restrictions are: BLT: No Bending, Lifting, Twisting. Your joints (vertebrae) are now fused solid and simply do not have the mobility a regular spine would have by having disk space in there. When we have fusions and try to use our "new backs" like we would a healthy back, we cause more damage in the areas above and below the fusions.

You need to respect the fusion didn't "fix" your spine, it gave you a replacement part that is now becoming solid. Picture one solid joint where there once were two. But you also need to respect that top joint and protect it, or you'll damage that one too, with bending, lifting, twisting....especially with that kind of weight.

I "know" I can lift more than 10 lbs but I have to move my body and use my spine differently now. Trying to return to using it the same way can cause injury.



Merrida

Oh how I want to wash my car, too! I cannot believe it has been nine months since it has been cleaned. My goal is to wash it myself once Iam able, and I keep fending off my husband from doing it for me. There are a whole new set of rules now. I'm learning how to not overdo. Hard lesson! I'm home now because I went into a full on flare up at work about an hour ago. It is time to get the doctor to hear me because I cannot perform minimum duties at work. I need to bend, twist lift (more than 10 pounds) and work or I am of no use there. So incredibly infuriating and frustrating!

Watch what you mix with Soma, it's very potent. In fact if you take Soma on an empty stomach then eat a minute later it'll release the entire dosage. It'll get you so loopy you'll barely be able to move. I found out the hard way. I wanted to eat with Soma and BAM! My wife said, I was talking jibberish for over an hour.

Take the perc's in moderation and it's fine. I never been on Oxy. I'm allergic to Cymbalta, another found out the hard way story. Let's just say I'm so restless that it feels like I had 20 cups of coffee on Cymbalta.

Use what works for you. I haven't changed my meds in 4 years.

It's my firm belief that "a number of" failed fusions result from recipients not respecting the hardware. Trying to move as if your spine is not fused overloads the adjacent joints and tissues....it's a domino effect, setting the body up for additionally needed fusions.

I'm not suggesting it can be 100% avoided, but I am suggesting that by respecting the hardware and its purpose, we can limit and reduce our chances at being repeat offenders.

After my last hip replacement, I was "forced" to slouch to bear weight. A by-product was I could feel this adapted posture stressing my T12/L1 region (L1 being already fused, straight down to L5). I have had to learn to "life myself up and out of my pelvis" instead of "relaxing."

My L5/S1 is in need of fusion as well, and my surgeon elected to postpone it because I have a good grasp of my body mechanics. That L5/S1 region is one of the trickiest because it directly affects the ability to bend and "fold" the "torso/limbs" region.

It's only my personal opinion, but I believe if we fusion patients ambulate in a way "as if" we are also fused above and below our actual fusions, we increase our chances of success, not to mention, better posture and less chance of irritation/exacerbation. There's a call of difference between "are you hurt" or "are you injured."


Humbly,

Merrida

Pain is all relative. I think it would be unfair for either of us to try and compare our pain to one another's pain. Your pain is real, and you know it. That's one challenge we CP'ers face because it can only be "measured" on a subjective scale, a scale they ask us to rate, but a rating which they sometimes dismiss.

My spinal fusions were in December of 2012. I see my surgeon again on Monday. Before surgery, I could not feel my left leg from the knee down and had foot drop. The bottoms of my feet felt like I was walking on crushed glass and rocks. The sciatica in both legs was severe enough to wake up me, my family, even the neighbors (who complained about the loud noises I made when in pain). My back was in a great deal of pain and my meds simply were not touching it.

Now, after my fusions, my current situation is this: Almost zero sciatica. Occasionally I'll get a ghost sensation if I push myself (which, like you, is in my very essence!). The "crushed glass" sensation on the bottom of my feet, totally gone. The leg buckling, totally gone (as related directly to my spine). My low back pain in the areas that were fused are pretty much pain free.

However, my left leg still has foot drop but instead of feeling nothing, it is constantly in pain, untouched by meds. But it's the only neurological pain I have. I believe it's the nerves regenerating. I still cannot move my left foot/ankle.

I had a total hip replacement on the right 2 months ago, and that is still recovering, and it still affects my spine. The areas above and below my fusions are in pain. My right SI joint is in chronic pain. My right hip still is in pain.

But I believe it pays to be reminded that what we had done takes up to 2 years to settle. I have areas that have become hypersensitive, and areas around the incision that are still numb. It helps when other CP'ers who have been there know from experience can reassure us what we're feeling isn't abnormal. It's just different.

I applied for Disability too, last week. I was too embarrassed to do it earlier because my identity wrapped around being very physical, and losing that felt like losing part of my soul. I understand.

My personal opinion is that, based on what my surgeon and PT's have relayed, post-fusion, understand that bending, lifting, twisting,...has to be deferred, delegated or detained. If you must, do it with the utmost care. Things like shoveling snow (I live in New England, we get SNOW!), raking,...all stress our fusions, prolonging recovering, prolonging pain.

My $0.02.


Merrida

When I had my fusions, I needed bone grafts and bone marrow grafts,...both of which were taken from my pelvis at the time of surgery...so no "donor" tissue was used.

He warned me in advance that many patients complain of pain at the donor site, sometimes more-so than the surgical site. To this day I swear I can feel a large bore needle jammed into my pelvis. I know there's nothing there because the XRays prove nothing "broke off"....it's just my perception. It still tweaks me out, 9 months later.

I think therapy is very beneficial,--psychotherapy (if you get one familiar with CP-related issues), and of course, physical therapy. I'm still in PT....

It's helpful to have those objective third parties validate there are legitimate reasons why you cannot bend, lift and twist certain ways or lift more than XYZ-lbs for now... There's a method to their madness, honest!



Merrida

I swear there are times I can feel the actual titanium in my body. So again, you're not alone.

Did you ask your doc WHY he would write that regarding your SSI? I'd ask him directly, (rather than guess and wonder), PLUS continue seeking another medical opinion. I think sometimes they make these decisions about our lives because it's easier for THEM to not have to deal with our complexities.


Merrida

I'll deal with it tomorrow. This whole thing has caused me to give notice. After my appointment tomorrow, I'll find out why the ortho decided to take away my benefits AND make it so I make less than half my normal income. I'mjust a little emotionally wiped out right now.

Thank you, everyone, for helping me out today! I hope to continue keeping up with you!

Lori

You bring up some excellent points... Points I'm facing as well.

My hip surgeon feels that due to complications, I suffered a set back, but there's no reason I should be "disabled." He just feels it will take time to get me functional again.

My therapist told me point blank she does not and will not support my Disability claim because, in her words, I am not disabled, and she knows I do not want to be stigmatized with that label. (True, thus the embarrassment, but I thought I was making huge progress by filing, after years of my family "encouraging" me to file the bloody paperwork already!). My psych nurse repeatedly brings up how I'm not depressed over my physical conditions, so she doesn't "see" how I could be disabled.

So my positive attitude is working against me. If I was depressed and angry,....that would help my case?

Your doctor may be indicating NOT that your condition was "caused" by work, but rather that the duties of work "exacerbated" your existing condition, thus he wants the reduction to 4 hours/day that you work so you don't injure yourself and create a worse situation.

My guess is he's trying to restrict/reduce activities you do that he feels could potentially hurt you and impede your recovery.


Merrida