I'm able to walk without assistance, though occasionally lose my balance. I have to be extra careful on stairs. I cannot "turn-around" without holding onto something first without risking losing my balance, and I cannot close my eyes while standing up without losing my balance. These are all signs of advancing peripheral neuropathy.
I'm able to cycle as well as I always have, and recently did 47 miles in a single day, averaging 15mph. I can also drive just fine since driving is primarily muscle memory in my legs, and I've had zero issues with foot placement on gas or brake pedal over the years up to and including today.
The sensory (pain) issues in my legs below my knees go from feeling cold, to bee stinging sensations, feeling like they're on fire, and numb.
I take 150mg of lyrica 3x/day which is considered high dosage, and duloxetene 60mg/day to help as well. These two drugs are losing their pain management effects.
In addition, I have ankylosing spondylitis, which is managed well with Humira, and my inflammation markers are within normal range, so it appears my A.S. isn't impacting my neuropathy.
My Pain Management doctor says it's time to start thinking about Spinal Cord stimulation and getting off the nerve pain meds since they're losing their effect. I'm 63 years old and I've suffered from advancing peripheral neruopathy in my legs since I was 30.
In all this time, several of my docors have recommended I go on disability which I've steadfastly refused. I had two sons and a wife to provide for and that responsibility was mine and mine alone. I've had a very successful 40+ year career in Information Technology mostly in Financial Services and have zero regrets for the path I took.
So now I find myself coming to the forum I've been on since 1998 and asking for personal help. Y'all are some of the smartest people with the broadest life experiences I'm hoping someone can help me here.
Is there anyone on this forum who has similar peripheral neuropathy issues in their legs, whether idiopathic or diabetes caused, and is using a spinal cord stimulator to help manage their pain?
If so, can you please share your experience with me, whether here on the forum or privately via DM?
In addition, are there any preferences towards which spinal cord stimulator to use?
My primary pain management doctor is recommending a spinal cord stimulator from Medtronic.
A second opinion pain management doctor is recommending a spinal cord stimulator from Biotronik
Looking for anyone with experience or a family member with experience with spinal cord stimulation and whether or not they've helped. I feel like I'm at the end of my rope with medication and having to live with this constant pain and its ability to disrupt my ability to think clearly and quality of life just isn't an option.
Thanks in advance for any info.
If this works for you, it will fine tune your decision on the spine stimulator. Although these units can't specifically target your spine, you will know whether or not you may not even need anything but a TENS unit to feel better. I would place these pads along the base of your spine to see whether or not the electrical stimulation disrupts your pain.
Daughter in TX had one placed (Boston Scientific) several months ago for pain. Her word - Wonderful. That’s all I know.
Not what you’re asking, but B12 shots may help deal with neuropathy and regrow nerves.
Hey USC,
Sorry to hear about the neuropathy. I also have it and use gabapentin to control the pain. I’ve had it for about the past 20 years or so. I don’t have most of the issues you describe, although going down stairs and maintaining balance are definitely facts of life. I have lower back pain but never operated on.
I will monitor the thread for others information. Always good to learn. Best to you and it’s been a minute. Stay in touch, bro.
‘Pod
NEVRO HFX SCS. I’ve had it for 10 years. Just had newest model inserted. It works.
I went to the chiropractor years ago for a herniated disc and they hooked me up to some sort of machine. It gave me the most relief. I had them jack it all the way to ten.
I had horrible sharp pains in my feet for some time. After a long drive I had to wait a few minutes before I could even walk.
Staying away from the combination of alcohol, soft drinks, and Sodium has seemed to work wonders for me. I’ve cut my sodium level to hardly nothing. I’m in much better health in my 70’s then I was in my 60s. You would be surprised at how much sodium is in everything we eat.
My wife had a spinal cord stimulator (Medtronic) placed for chronic pain related to severe scoliosis. Within a few weeks it became infected with Methacillin Resistant Staphylococcus Aureus. Long story short, she passed away about 8 months later from sepsis due to the Staph A. It was a painful, slow, wasting death. Some people get relief with the stimulators but there are risks.
For peripheral neuropathy especially that caused by Diabetes, a cutaneous (on the external ear) vagus nerve stimulator worn for 19 days was found in the initial study to be 87% successful in relieving neuropathy pain, It also was found to markedly reduce blood sugars and Hemoglobin A1C levels. The effect lasted for over 7.8 months. The study was published last month in Frontiers in Neuroscience.
There is an ongoing nation-wide study sponsored by a major medical center of which I am a regional medical director designed to confirm the original studies result.
Insurers are paying for this for diabetic neuropathy but it has also been used for other etiologies of neuropathy as well as obesity, and addiction disorders.
Should our follow up study confirm the findings of the first study the treatment of diabetic and possibly other neuropathies will be dramatically changed as patients in this study got improvement though they had failed the usual medical management such as Lyrica, Neurontin, Cymbalta, tricyclics etc.
Our regional portion of this study is based in DFW, but other centers are also recruiting patients.
Best wishes for improvement of your very painful condition.
Excellent thread with excellent information. Much thanks to everyone. And truly hope there are solutions that work for everyone in their futures.
I play Pollyanna whenever possible. Good thing about numb feet is that you can go out in snow to pick up a dog mess barefoot when you’re worried it will get buried in snow and don’t want to take the time to put on shoes. And it’s only rarely painful for me so I can stay up all night on those occasions and not waste my time doing silly things like sleeping when I could be on the computer.
In addition, OTC lidocaine patches on my spine and other supplements reduce pain: benfotiamine; liposomal vitamin C; quercetin; GABA; B-12; methylfolate; a high quality krill oil; niacinamide; and a decaffeinated, high potency green tea extract (Soltea).
Of this daunting list, the OTC patches, benfotiamine, and liposomal vitamin C seem to be the most immediately effective and the best place to start.
While I know nothing much about your condition, I did have an employee in 1994 that hit his elbow on a handrail causing nerve damage to his elbow and lower arm. After trying several treatment options, he decided to let them insert an electrode into the spinal column to stimulate the nerves. In his case, he lost the use of his right arm which shriveled up and became useless, plus workman’s comp refused to pay for any of it including his disability.
My advice would be to be careful.
The negatives:
It takes a long while to charge the battery: about an hour where I have to sit quite still while it charges. The charger will sometimes stop charging and I have to restart it again.
There are 3 neurostimulator settings, none of them completely address there the pain is located.
If you forget to reduce your setting at bedtime, it "buzzes" your spine so that it is impossible to sleep/ignore and you have to get up, find the control unit, and reduce the setting.
Unless you are very careful, it is very easy to lose the control unit!
Other than that, no complaints...