New spinal cord stimulator.. How much recovery from this procedure?

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Hi all

I'm 2 years into my CRPS diagnosis after herniating disc at C5/6..after surgery to remove disc, left at pain worsened, took some time but finally found my wonderful pain specialist who has been working tirelessly to get me a consult with neurosurgeon for SCS implantation. My CRPS almost immediately went to my left leg which is now far more painful than arm ever was.. I've tried everything from blocks to drugs.. Now on ketamine with my other narcotics but am having a laminectomy for placement of SCS for left leg day after tomorrow. Just wondering how everyone found the recovery? (Daughters wedding is destination in 3 months and I'm worried next few months is even going to be more painful after reading some blogs..). Any info would help. Thank you all for letting me read your stories. You have no idea how much this has helped me get through 'acceptance' of this terrible diagnosis.. You are all magnificent warriors!

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  • Posted

    I don't know, I've heard that just simple things can cause your CRPS to get worse I know stress and even what you eat can have something to do with your flare-ups so I would hate to think about a surgery of this magnitude would or could do with your pain level from the CRPS . Whatever you decide to do I wish you the best of luck. I just have one question the doctor who is performng this surgery is he aware of your CRPS and does he know a lot about this disease ?

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  • Posted

    Andea,

    I opted not to get a SCS. Howeve, my mother -n-law got one a few yrs back and she recovered fast and wonderfully. The battery pack and wires are all just under the skin, so they don't have to go through muscle and ligaments, thus a quick, easy recovery. The only place that might take longer to recover from is where they have to make the small incision in the back to place the leads in ur spinal column. They FO have to go through muscle and ligaments there.

    I have a intrathecal pain pump, so pretty much the same surgery, except with a pain pump there's only the one catheter tip to implant in the spine, where as with the SCS there are at least 2 leads to be implanted in the spine.

    I've been advised, since any trauma to the body can cause more pain and the CRPS can spread, to always have sympathetic nerve blocks before any surgery.....just an added step to try to prevent a spread of the CRPS.

    Also, I've read medical reports that says using Propathol(sp) gas given during the surgery can help prevent added pain and spread too.

    Maybe a couple of points to talk to ur surgeon about. Hope this puts ur mind at ease and that u will b up and about real soon!

    Prayers that all goes well and u have a very speedy recovery and a fun time celebrating with ur daughter at her wedding!

    God bless,

    Browneyes

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  • Posted

    Andea,

    I opted not to get a SCS. Howeve, my mother -n-law got one a few yrs back and she recovered fast and wonderfully. The battery pack and wires are all just under the skin, so they don't have to go through muscle and ligaments, thus a quick, easy recovery. The only place that might take longer to recover from is where they have to make the small incision in the back to place the leads in ur spinal column. They DO have to go through muscle and ligaments there.

    I have a intrathecal pain pump, so pretty much the same surgery, except with a pain pump there's only the one catheter tip to implant in the spine, where as with the SCS there are at least 2 leads to be implanted in the spine.

    I've been advised, since any trauma to the body can cause more pain and the CRPS can spread, to always have sympathetic nerve blocks before any surgery.....just an added step to try to prevent a spread of the CRPS.

    Also, I've read medical reports that says using Propathol(sp) gas given during the surgery can help prevent added pain and spread too.

    Maybe a couple of points to talk to ur surgeon about. Hope this puts ur mind at ease and that u will b up and about real soon!

    Prayers that all goes well and u have a very speedy recovery and a fun time celebrating with ur daughter at her wedding!

    God bless,

    Browneyes

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    • Posted

      Hi Browneyes

      Thank you for the info.. I am post op day #5 today and all going well so far. You were right about battery pack and wires being just under skin so just a bit of tenderness there at incision as well as laminectomy site (mid back approx 5" long is certainly more sore 'inside'.

      There are considerable restrictions for the first 2months to allow full recovery and I only have a very basic program on stimulator until tech fully programs it in a couple of weeks, but am appreciating about 40-50%pain relief left leg.

      The only significant draw back so far was the experience of having the surgery done 'awake '..lots of local anaesthetic and some IV drugs to sedate but have to be awake enough to let surgeon know lead is in the correct place with stimulation and when they are done needing your in put the put you in a deeper sleep.. That was the plan until I realized that I was feeling the surgeon cut skin for battery pack despite local and drugs, I had to scream to get their attention and they had to stop until I was out again. Very upsetting!!! And I'm a nurse who has worked in these areas and never quite believed this could happen but it most definitely did, and I'm deeply happy that it's over. Next surgery for insertion of stimulator for arm can be done under a general anaesthetic so I don't have that worry.

      My surgeon has said that despite a good trial, 30% of patients just fail the stimulator surgery.. It either mechanical, or infection, or they just fail to get any benefit from SCS.. I'm praying I fall in the other 70%and this thing will help me deal with this disease.. Now if only I can figure out how to help people understand that this is not a 'fix', or a 'cure' but another treat memt for a chronic, incurable disease. Helping family and friends deal with the implications of this disease is also a struggle I'm finding..

      Anyway thank you again for the info and all the best to you and yours.

      Andrea

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    • Posted

      Andrea,

      Great to hear ur healing well with minimal pain from the surgery and glad ur getting pain relief from the stimulator! I'll be hoping and praying you have no complications and heal fast! Be sure and follow Dr's orders to a T and you'll do fine! No stretching, bending, twisting!

      I had forgot you would be awake for part of the surgery. If I remember, that's one reason I decided against the stimulator. So, so sorry for ur horrible experience in the OR! That would have freaked me out to feel them cutting on me! I probably would have called the whole thing off after that. Ur brave to let them finish!!

      Now to get u well.... take good care of yourself and if something doesn't feel right or look right, make them listen! You know ur body better than anyone and you know when something's wrong! I got an infection after back surgery( a 360, infection in tummy) and tried to tell the drs and nurses something was wrong for 3 weeks. They kept saying I was ok because I wasn't running a 101.5° fever! By the time someone finally listened, I was full of infection and ended up having 2 more surgeries, in hospital for 35 days and wore a wound vac and had home health for months and months! It was an awful time and they told me I should have died. Do don't hesitate to make them listen if something doesn't feel right!

      As far as family and friends understanding this is not a cure, probably won't happen. They just can't understand. It's not their fault. If u haven't experienced something, u just don't know! As my dr told me when I got my pain pump, "it's just another tool in the tool box, not a cure!"

      Best of everything to u.....keep me updated on ur progress.

      Praying for days of less or NO pain for you!

      Browneyes

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    • Posted

      Thank you browneyes.. Although, I'm immensely sorry you had to go through that it's an excellent reminder to all of us to fight for right you know to be true in your own body. We are the experts after all. My GP says that all the time.. Thank goodness you're the expert because they often have no idea about this disease (at least he's able to admit that and leave the decision making to the experts)

      I promise to be vigilant and follow the restrictions to a T, as I want this to work! (Especially after fighting so hard to get it)

      Still doing well with exception of some raw nerves in leg (probably stirred things up with surgery itself) hope you don't mind but I have adopted (and have already used several times) your analogy of the tool box.. An excellent one I might add.. Thank you.

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    • Posted

      Andrea,

      Thank you for ur kind words! And glad ur doing somewhat OK. I believe, like u, that any surgery when u have CRPS, stirs the nerves up.

      I'm always glad when anybody can take what I say and use it, as "the tool box." I believe that's what these support groups are all about,, sharing and using what's been shared.....

      So, tool box on girl...haha!

      Browneyes

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  • Posted

    Andrea,

    I'm 6 days Post op for the SCS. I must admit I was very skeptical about it but it is doing great with the meds. I'm still very sore from the surgery itself (lots of incision pain) but I'm anxiously waiting to be able to have a life again!

    I was diagnosed with CRPS a year ago after being pinned to a concrete pole by a forklift while I was pregnant. Its been a long battle but I'm just glad for the 40-50% relief I feel!

    Its hard to explain to family and friends that you will never be fixed,cured or the old you again! Please tell me how you got your family to understand more?

    Wishing you a great recovery

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    • Posted

      ukila1219, I had ask a question in your previous post what is SCS, but then I read this one, sorry you don't have to reply to last of my post. I think I might have the answer to family understanding a little better. I don't know if where you are at if you can get this or not but I assume since the internet goes just about everywhere maybe. Are you able to get what's called Vimeo ? It's an app and there is a movie (Documentary) that is put on there about CRPS,  and it is produced by Charles Mattocks and he is the son of Bob Marley, you may have seen him on some shows like the today show, Rachel Ray, etc. His mother was diagnosed with CRPS and he decided when he went with her for treatment & saw all the other people that had CRPS that this disease didn't have a voice and needed one so he made it his priority to give a voice to this horrible disease in order to make people aware of what it was and how it could affect a person who has CRPS. I had did research on this after finding out that my son had it and had never heard of it before which it should've been put out there long ago since the horrible disease has been around 100 years you would think everybody would know about it but alot of times what people don't understand they don't fool with but anyways the name of the Movie/Documentary is "Trial by Fire" a documentary by Charles Mattocks and I think that shows and tells alot in order for people to better understand it, I showed it to my husband because I had researched it but my husband didn't seem to understand it at all and I keep researching because my son needs me to be the mom that can at least try to help him. Keep us updated and let me know if you find the documentary and what you think about it.

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    • Posted

      Thanks Eva!!! I will definitely look for this today! I've been struggling trying to explain to my family for months with no understanding from them. My two teenage daughters have nearly loss their minds because they don't understand why I haven't gotten better. They also have had to take on a lot of responsibility with their 11 month old brother ( I was almost 6 months pregnant when I got injured and diagnosed with CRPS). Its a life changing disease that affects more than the person who has it!

      I will keep you updated as much as possible. And I hope your son gets some type of relief from this monster

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    • Posted

      Ukila, I hope this does help and it's hard I know for me to see my son go through this and I can't even imagine what you must be gong through knowing that your children have to watch you go through this, I know we as parents want to protect our children and take away all their pains, I know I feel helpless not being able to do no more than I can except just being there and letting him know that I'm there, but it makes you feel lost. If you ever just wanna chat hit me up on here if nothing esle I've always been a good listener . I am like the mother of every child that my kid's have come in contact with. Let me know when you get to see the documentary and what your children think. I think they might relate better because there are children that give their testimonials too and they may understand it better. God Bless and keep you is my prayer and for those babies too.

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