Does anyone have any experience with spinal cord stimulation? My pain doctor doesn’t know about EM but says “pain is pain”. He is recommending a Nevro HF10 device. I have EM in both feet. I have been bedbound for 3 years. I am unable to stand or walk. I’m currently on Gabapentin and Compounded Ketamine cream. Gabapentin provides some pain relief but causes extreme exhaustion and weight gain. Ketamine cream is barely helpful. Effect lasts for 10 minutes. None of the doctors that I have seen were that knowledgeable about EM and none were willing to prescribe Mexiletine.
There has been some discussion of spinal cord stimulation in the community, though none recently. If you haven’t perused the old discussions, click on the link below. They might provide some insights.
Also, if I was in New York, I would try to get an appointment with this guy:
EDIT: Just to clarify, I don’t have any experience with that doctor. However, he is in The Erythromelalgia Association’s physician directory and my guess is that an anesthesiologist/pain management specialist who holds a faculty appointment at an Ivy League university will know a lot about EM.
I had a Spinal Cord Stimulator (SCS) installed and tried it diligently for almost one year, about 10 years ago. I did not get any pain relief. The sensation by the SCS was violent in its own form - a constant buzzing that tried to mask the EM pain. The leads in my spinal cord and battery pack are still implanted. I was diagnosed with EM in 2008 after about 8 years of searching for answers. Again, the SCS did not work for me.
Hi Mike,
Thank you for sharing your experience with SCS. Sorry it did not work out for you. I’m still in the process of trying to figure out whether or not to try it. Do you remember what device they implanted? Was it a high frequency system? Did they need to perform a laminectomy to install the leads? Hope I’m not asking too many questions but I am very anxious about this.
Thanks,
Connie
Before trying SPS, I would try exchanging Gabapentin for Lyrica. Gabapentin did not work for me. I was at the highest dose possible and the side effects were bad. Lyrica is much better. There is a reason Gabapentin is so much cheaper than Lyrica. My EM has been fairly well controlled/ manageable with Lyrica, Salsalate (aspirin based anti-inflammatory), cymbalta and CBD oil. Good luck in whatever you decide to do.
I’ve just met with a doctor where I live in Toronto. He is the Neuromodulation guru here. He strongly suggested that I skip over the spinal cord stimulation procedure and opt for a dorsal root ganglion stimulator.
I’ve tried absolutely everything imaginable over the last six years. I’m out of options so I’m giving this procedure serious consideration…
Spinal cord stimulator or pain blocks with TENS units were discussed with doctors for my mom and the neurologist who is really super smart told me they were a bad idea. One of my sisters tied it for some unrelated problem and said a cheap one shocked her. The opinions I got from doctors was that the small amount of simulation would be like hitting the problem with a light fly swatter when you need a heavy cannon ball. But also they said the chances of it triggering a flare was much greater than relieving one. So we never tried it. There was a thing called the Scrambler which was used at MAYO clinic for some cancer pain treatment, but it was not prescribed for Nerve problems. It supposedly acted in a different nerve route and had to be tunes by an expert. Mexilitine is a heart arrhythmic agent, and it’s not effective against EM pain unless it’s being prescribed in Cardiac dosage levels. Some have tried it at low doses for other neuropathies but it must be at a fairly high dose like heart rate doses for heart problems to help with EM according to surveys in studies. And if you want to have it at that dosage level two things will have to happen. First you will have to be off the heavy duty pain killers like Opioids. That alone leaves mom off the list as the pain would be unbearable to get off the Opioids. Second the test levels have to be done in the hospital so they can give you enough to hopefully help with you’re pain, but not enough that it causes your heart to go into some problem and you die of a heart attack. So it’s not something you just take and pop in you’re mouth to do it right is a three day hospital stay, if they want you to be safe. So although it’s reportedly effective up to 20 percent of the time for those with the Genetic defect, how well it works on others is unknown and less. So it seems at least from the old data and recollections Mexilintine can help only a small percentage of EM patients. Also for my mom when she went for nerve velocity studies that found her LARGE FIBER NEUROPATHY, she had the shocks from the nerve velocity tests bother her at the site of the shock and she had PHANTOM PAIN from those locations for at least ten years. When her neurologist heard about this he told me you need to bring her back in because that should not be happening and is very unusual.
I can only say to try everything else before you get a surgery like this, try changing your diet, changing my diet by cutting out unhealthy foods has reduced my symptoms greatly and its worth a try before possibly doing something irreversible.
Connie,
Sorry I haven’t checked into this website for a while. To my knowledge, they did not do a laminectomy to insert the leads. I remember it being a simple procedure in an operating room, but I was awake to be able to answer their questions. I don’t remember it being high frequency either.
The EM pain was just too much for the SCS to handle without it being overbearing.
I hope you have been able to find some relief.
Mike