Nerve pain and SCS advice needed please?!

Posted , 3 users are following.

I will give a general background to my problems.

I had a L5/S1 fusion in 2008, and had a problem with the feeling in my right leg post surgery for the first week, over the first month the feeling came back and I had great relief/results from the surgery.

In November 2013 I started to have dreadful back pain again and struggled walking, after a week 10 days it would go away and I'd be back to the way I was. This happen every few weeks until February '14 when things got worse and I was signed off work.

My condition got worse as the months went by, the pain increased and has been going down my legs into my feet. I now walk with a stick every day.

The pain in my feet gets worse as the day goes by, by evening I can barely stand/walk. It's stabbing, shooting, burning and very intense.

I've been spinal consultants, podiatrists and physiotherapists. Nothing has helped any of the pain.

Yesterday I saw a Dr at the Pain Clinic and was told I have a failed fusion. What does this mean?

They said my problems are caused by nerve damage and the only thing they can offer is SCS. I came home with leaflets and was advised to Google it also, I found this site and I'm wondering if anyone has had any of these issues, can you suggest anything that can help? Should I try SCS? Does it work? All I've read so far is negative reports which scares me!

Any help, advice or suggestions are welcome.

Thanks

Shelly x

1 like, 4 replies

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4 Replies

  • Posted

    Dear Shelly,

    You poor thing.  You have probably developed a lot of scar tissue that is pressing on a nerve or s omething.  You should try getting a sympathetic nerve block.  I have severe neuoropathy in my right foot and have had 5 back surgeries.  They recently did a sympathetic nerve block, and I was shocked that it actually helped my foot/calf for a week!  So now they are going to do an RFA (radio frequency ablation - burning the nerve) which should help on a more long term basis.  I would try that first. Other option would be to consider a Medtronic neurostimulator (an SCS) that is a battery in you back and a lead that sends tingles down your leg to "mask" the pain.  I had one in the past that helped, but it got removed during my last back surgery. I had it put back in, but the surgeon decided to put it in a different place, so it hasn't helped.  My new neurosurgeon is suggesting a Nevro Senso HF10 (the modern SCS), but I have read a lot of negative comments about th is on this site, so I am going to try the RFA first.  Good luck to you!

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  • Posted

    Dear Bluemilo, A failed f usion at L5-S1 is not that uncommon.  It means that the fusion didn't take - I had the same problem, and got it fused a second time and that one failed too!  They might also call it failed back surgery syndrome or arthrosis.  I had to quit working because I couldn't sit at a desk any length of time. I' waiting on SSI Disability now.  I have severe nerve damage in my left leg - my femoral nerve - caused by a lateral fusion (fused from my left side). And I have severe neuropathy in my right foot.  I recently had a sympathetic nerve block at L4 which helped my right foot but not my left leg. They probably want to put the latest and greatest SCS called Nevro Sensa, but I have read a lot of people who have had problems with this - pain worse, battery has to be charged every day - AND the battery burns your skin while charging - so proceed carefully.  I would try a sympathetic nerve block first.  Good luck to you!
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  • Posted

    I have similar issues with my feet.  I got a sympathetic nerve block at L4 and it helped my feet for about a week. So now they are going to do the RFA.  My doctor wants me to get the Nevro, but I too have read a lot of negative reports.  So I'm going to wait and see what happens with the RFA.  Keep in mind that probably the only people who write in here are those with a bad experience.
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  • Posted

    HI, If you do a neurostimulator look at the Nevro product with the high frequency radio signal.  It has shown to give a wider area of relief than the lower frequency devices.  (Medtronic)  I don't know if the other neurostimulator companies have the high frequency signal yet or not but I know Nevro does.  The low frequency tends to help the just the legs and arms depending on placement.  The high frequency will help mask the pain in the lower back and the legs.  It has a drawback in that you have to recharge it everyday for 30 minutes.  I just had the trial with the Nevro for neck pain and it actually took my pain away and I had pain in my arms upperback neck and head.  My hunched up shoulder actually relaxed.  I won't mind the daily 30 min charging if it does what the trial did for me.

    The cool thing with the high frequency is that you don't experience any tingling and can drive with it on and sleep comfortably without the tingling like a TENS unit. The low frequency can give jolts of tingling if the leads or wires get compressed and it is deemed to distracting too drive with it on.  You don't have to adjust the signal strength either.  Once the high frequency Nevro has found the sweet spot that lowers your pain, no adjustments are needed.  You don't feel any tingling with this Nevro unit and can keep it on continously and no problems with driving with it on.  The high frequency implant also works differently from the low frequency neurostimulator.  The high frequency stimulator activates a flow of a neuro chemical that calms and masks the pain signal to the brain. The low frequency is a blocking action of the signal as I understand it.  The research is showing that the high frequency devices are better at reducing pain and affect a wider area.  The high frequency device I think will eventually be the "go to" implant.  It is newer technology and they are finding new uses for it including migraines according to my rep from Nevro.  I have read some of the stories about the neurostimulator battery pack being too big and migrating but I am not going to worry about that.  The doctors are only human and I am sure there have been mistakes.   How many I don't know.  I asked the surgery coordinator nurse if they had any fails with the permanent implants and she said not with high frequency and this is a big clinic.  If it happens I will deal with it.  I kind of think that the worst stories are going to be found in forums.  It is true that these neurostimulators don't work for all people so that is why they have the trial.  I have a great rep and pain doctor and we are all motivated to make this thing work.  I can no longer tolerate pain drugs so this is last ditch effort for me.  Best of luck to you.  Cathy

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