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Hello Everyone! New to the Forum and need some advice on need for S1-L3 fusion/replacement

All - The short story is that I have DDD and lordosis, am 47 years old and the morning pain has gotten to be 9/10 and I need to use a cane in the mornings to be moving around. I have been all around the circle from PT to injections to facet rhizotomy and now hear different things from different doctors. Mostly, many do not want to do a triple level fusion and would rather I use a spine signal disruptor installed; which does not fix the problem! I am looking forward to those who have walked this same path. Big Al

Here is the full story - 

I have lordosis and Degenerative Disk Disease which I did not know until my 40's. I remember as a teenager lying in my bed at the end of the night and having my lower back hurt. In my 30's my back pain became more consistent and felt tight, especially in the mornings and I did exercise and weight loss which managed it well. In my 40's it got worse and over the last 6 months (I am now 47) it has taken a serious painful turn.

It is worst in the mornings with a pain level of 9/10 in the lower back with shooting nerve pain. I have to use a cane to urinate in the night and have even gotten to the point of using a portable urine jug so I do not have to get up. Every morning I need to slowly start walking, stretch with hot water in the shower for 20 mins and then take 800mg of Alleve as well as using a TENS device for ~1hour. At that point, the pain will subside to 3 /10. It remains tight during the day and can still give shooting nerve pain if I move in a certain way. I cannot play golf any longer and exercise now consists of treadmill and elliptical with some light weight lifting.

In the summer of 2018, I met with Dr XYZ, Orthopedic surgeon who sent me to YYZ for pain management. Over the course of the next 3 months I had 5 steroid injections including a facet rhizotomy with little relief and no lasting improvement. At that point, I went to see Dr ABC, Nuerosurgeon who confirmed that L5-S1 has little disk left, L4-L5 was badly degenerated and L3-L4 was questionable. He asked me to have a discogram. Which revealed that L3-L4 was also bad (meaning the dye spilled out of the disc) so, Dr ABC said I was not a candidate for surgery since XXX Back institute (and many Dr's according to him) will not do a full 3 level fusion. So, he recommended a disruptor be installed in my spinal cord. I did not move forward with this option since I does not fix the stability issue. I went to Dr AAC, also at XXX back insitute who agreed with Dr ABC's assessment.

Next was Dr ACC, [edit]  and after reviewing all my data said that I should not do surgery, but instead have Stem Cell Treatment which is 8K out of pocket and had few results for people in my condition.

Next I saw Dr BBB, who recommended a fusion, not a replacement but wanted a better look at the L3-L4 disk. He requested that I take a Myelogram to know. I guess my regular discogram did not give him enough information. I have not had the myelogram yet and this gets us up to date.

One opinion I believe is that the reason my back hurts so much in the morning is due to the fact that my facet joints have become arthritic since they have to bear the full load. If that is the case, then I wonder if the back sugery will help that. I am sure it will help since building in stability has to help.


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Comments

  • memerainboltmemerainbolt IndianaPosts: 6,443

    BigAl

    Please don't try to diagnose yourself or assume you have something, such as arthritis. The myelogram could possibly give you an answer on the nerves. Do some more research so when you see him again you can ask questions and maybe find out different options.
    Take care and keep us posted.

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  • BizcoachBBizcoach CanadaPosts: 27
    edited 06/25/2019 - 1:09 PM

    A fusion decision should.not be taken lightly as many end up with pain worse than before and many have chronic nerve pain (nerve damage) 

     I had been 100% bedridden 3.5 years as I tried all alternative therapies and pain management experimentations before deciding to proceed with fusion .It improbvedved spine stability but has not helped pain so a.spinal cord stimulator has helped.a bit. I am.out of bed for a couple.hours each day. Life is good again but very limited. 

    Resesrch people's experiences on this site and sesrch for a great spine specialist at a major university/hospital and start a proper spine diagnosis process.



  • bugslybbugsly MinnesotaPosts: 36

    BigAl

    Hang in there, I have had L3 to S1 fused 3 years ago.  Everything went great, took my pain away.  I also have DDD. Now I'm having problems with my SI joint.  If you decide to do the fusion follow all directions of do and don'ts. I have no regrets.  An MRI would help in diagnosis. My surgeon scraped off my arthritis which he said I have a lot.  What was going on with my low back is also going on in my neck. Another surgery down the road.  Research for a good surgeon if you decide to take that road.

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