12 1/2 post op from laminectomy and fusion L4 L5 / S1

Yes I am a failed fusion S1 -L5 its been since 1999,

I have been in pain ever since, I know it's been tough long road, with injections and a failed surgery, if you want to inbox me we can talk more in depth and details, but I know what life is like when you feel like you have noone to talk to.

Cynthia (Cindy)

I see where you are coming from.  I also had a C3,C4 fusion but I thought it was OK.  Now, after so many years, my neck, shoulders, upper and lower back, legs and whatever else hurts pretty bad.  I also have been through it all and Ido have a nerve stimulator which works fairly well on my legs but not my lower back which appears the most painful.  About 2 years ago, I went to a pain doctor whos great and recommended the stimulator.  I really did not want that particular manufacturer but that is all they had.  When I have it on low, I barely feel it.  When I up it to a higher level, I really do feel the buzzing and depending upon which position my body is in, that determinines the sharp increase in level which can feel a little uncomfortable.  Also, the remote which looks something out of the 60's or 70's doesn't really function like I would want it to.  The battery is the replaceable kind after 4 or 5 years it has to be replaced which means another surgerical procedure.  If I have to go through that, then just take the damn thing out.  I was talking to my pain PA specialist, not doctor as never have seen him mentioning the newer Nevro SCS which I see that is different and reviewing other people here, saying that it works and of course some, the opposite.  But most say it does work and reduces the pain to a tolerable level where my body can function.  As of this time, my pain has gotten steadily worse and my lower back when I start to walk hurts a lot.  The constant pain causing me being cold most all the time, makes me irritable.  I take anti-depressants which help some and oxicodone but the dose is so low, that it doesn't help much.  I have never tried Lyrica but was thinking about it.  I have  tried neurontin in the past and it just became at a point where I would fall asleep while eating and my face would drop into the bowl of soup or other meals.  I would also fall asleep talking to people.  Do you know how embarrasing that is?  People thing you are weird and walk away from you.  It was the medicine that did it.  Isn't tramadol, a low pain med on the order of Vicadin?  I have on them all.  I want to cut out the tylenol part as it can cause kidney damage and already have chronic kidney stage 3 disease.  I have to talk to my PA about that.  Having peripheral neuropathy causes lots of leg cramps which I hate. 

This is what I think Pam.  These neurosurgeons want to always do some fusion somewhere and they make big bucks doing it.  Personally, I will not have a second fusion as that was recommended.  I do not believe it really helps that much.  It's possible it wont work but in your case I couldn't say.  A lot of people here feel the same way.  I know you don't want to continue on pain meds and steadily being increased.  Eventually after some time you do get addicted to it and if you wean off of it, you go into withdrawls.  It happened to me.  Heat on my lower back does help some while the heating pad is on.  Afterwards, it is the same pain as before.  If I had a pain level of 3 or 4, that would be great.  Most of the time my pain level in 6 to 7 which is uncomfortable.  Really makes me miserable and tired all the time.  I take a few naps a day and sleep is broken up.  Believe it or not, I moan and groan not knowing I am doing it.  I had pain levels as high as 9  which then I double up with severe pain.  It depends on the day, weather and in Seattle it is cloudy and rains a lot.  So, you are asking for help.  What I am saying here, I know what you are going through.  You need to have a good pain doctor, talk with him and ask questions, do your homework by looking up information on Google or elseware, and become your own advocate.

I can say lots more but this letter will become a book.  I don't think the moderators would like that.  You know, you can write using private messaging here and as long as you want, I think.  If you want to stay in contact with me, that would be fine.   Then I discuss more ways to possibly deal with some of these conditions.  We here, are the ones that are hurting and others outside of our relm do not understand like family and friends as they dont have it constantly.  You are marked as a complainer and makes you feel worse off.  Like I said earlier, you have to be your own advocate.  Listen, take care of yourself and feel better.  Easier said than done, I know.  If you would like, we can communicate again.  Have a nice day, Pam  bye

mel

You sound like my twin! Let me tell  you about my experience and I believe I may have a few tips for you.  I had a fusion from L2-S1 in 2013. Dr. also fused from L3-L5 on my left side and put in a "cage". And they fused me from L3-L5 through my stomach to get to the inside of my spine. They did the fusion on my left side because my spine had collapsed and I was leaning heavily towards the left. I woke up with my left knee pulled up to my chin because he damaged my femoral nerve. I have a deep aching in that leg to this day. Dr. also told me "you MIGHT need another fusion from L5-S1 because one of the screws didn't go in right. Sure enough, 8 months later, after I went back to work, I was having a lot of pain trying to sit in my chair because my low back hurt. I also had a lot of pain walking.  I also had neuropathy in my right foot.  I take a high dose of gabapentin for that - 800 mg 5 x a day. I've heard that adding lyrica helps.  I can't walk very far. When I go grocery shopping, I have to lean on the cart. If I were to go to the mall or something, I would need a walker.  So anyway, the MRI showed that the fusion at L5-S1 had failed. So they did a second fusion - using the method you discussed in your comment.  They also used bone from a cadaver.  Or maybe they used the cadaver instead of the synthesized stuff. 

The first time I had the fusion, I wore a back brace for six months.  I also wore the bone stimulator - I thought it was for an hour a day - but I wore that for almost 9 months. I think it's a little behind the 8 ball to start wearing it now.  Well, anyway, the L5-S1 fusion failed.  This is very very common.

So, he fused it a second time - May 2014. I went back to work after 6 weeks. Again with the back brace and the bone stimulator. Again with the pain - couldn't sit in my chair - had difficulty standing as well, so I sat for a while, stood for a while, kneeled for a while. In Dec 2014 I had my Medtronic neurostimulator put back in.  The first one I had helped a lot with leg pain.  The second one only helped between my knees and my ankles because the doctor put it in the wrong place. In Dec 2014 I went out on disability. I was paid short term disability for 6 months, then approved for long term disability through my work insurance, then they took it away and said I was 3 days short of meeting the pre-existing clause. So they took my income away. Anyway, around a year after the second fusion - I got a CT scan which showed that the L5-S1 fusion had failed AGAIN - AND now the L1-L2 is shot as well.  I have the same pain you do.  The only way I can sleep is on my back with a couple of pillows under my legs, and on my stomach with a pillow under my stomach.  Can't lay on my right or left side.  I'm waiting for social security disability.  I have had a total of 5 back surgeries now - one in 2009, 3 over a 2 day period in 2013, and one in 2014. Plus 2 neurostimulator implant surgeries.  I have already been denied once by social security - they said - well, you've had 5 back surgeries, but we believe you can still do your work.  HAH - what a joke! I've been told NOT to do ANY Physical Therapy except in a pool. I don't have a pool, so that's out. I recently had a couple of sympathetic nerve blocks. One actually helped my right foot - I have pain in that foot - it hurts to wear a SHOE or to walk on that foot. They just did a Radio Frequency Ablation - last week, and I'm waiting to see if helps on a more permanent basis.

My advice to you,

My doctor says not to worry about the synthesised materials causing cancer - but I would google it for myself and see what it says.

I would proceed with the 2nd fusion - but this time - wear the bone stimulator for at least 6 months.  They'll have to give you a new one because the other one is programmed to only work 9 months.

I would stay out of work for at least 6 months after the 2nd fusion - I think that was the mistake with my 2nd fusion - is that I went back to work after only 6  weeks.

Get on some REAL pain meds. Tramadol  is a step above tylenol.

Don't push yourself to work in pain.  You'll make it worse.

Good luck to you Pam. You are in this for the long haul. 

Linda

I see Mel and I are giving you different advice about the surgery. He might be right. They are telling me not to get another fusion in my case - they said it's not going to help. I think you should go see a neurologist - or if you do decide to do the surgery again - have a neurosurgeon do it - not an orthopedist. That was my mistake. Mel also mentioned the Nevro neurostimulator.  Supposedly it helps with leg pain AND back pain.  It has problems with the battery though.  Some people iin this forum have had serious issues with it - Mel, and Cynthia included, but you will find others who have f ound it to be a miracle cure.  Again, this is something you should research - not through Nevro's website, but by googling it and reading people's comments. 

So sorry you are going through this. 

Good luck to you.

And if the heating pad feels good, by all means do it!

Linda