Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@swiss

Hi Jim, a Burst DR stimulator as a spinal cord implant, is that a difficult operation or a routine implant? What is the cost in the US? I wonder if I can find such a methode here in Switzerland where I have tried just about everything and would like to evaluate this method through my neurologists.
Thanks for your help and continued success, felix

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@swiss

I don’t really know the cost, but you can get information about it at Burst DR at either St. Jude or Abbott. The technology was recently purchased by Abbott from St. Jude. My insurance covers the implant (I hope!).

The equipment includes a controller, which is like a small cellphone, wires, and a battery. The first thing they do is a week long trial, which involves a minor surgery to connect wires to the nerves that lead to where the pain is. If you receive at least 50% pain relief, you can be approved for a permanent implant.

The battery pack is quite small, and is placed under your skin as close to the wires as possible, through a 2 inch incision. Another incision is made through which they feed the wires into the space around your spinal cord, and attach the leads to the nerves. Recovery from the surgery takes 6 to 8 weeks, with the typical post surgery limitations. As soon as the surgical inflammation has gone down and the scar tissue has healed, which for me was 4 weeks, the system will be able to send its signals.

That’s a brief summary. You can find more online. Be sure to look for Burst DR. The letters, DR, are the inventor’s initials, and there are other stimulators that don’t have the DR, and they don’t have the same benefits. The inventor’s name is Dirk de Ridder, and he lives in Europe.

Others might have more to add to what I said.

Jim

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@swiss

Hi Jim, a Burst DR stimulator as a spinal cord implant, is that a difficult operation or a routine implant? What is the cost in the US? I wonder if I can find such a methode here in Switzerland where I have tried just about everything and would like to evaluate this method through my neurologists.
Thanks for your help and continued success, felix

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Great, many thanks, I just got a link from John and will inquire over here, sounds like a futuristic solution available now, best wishes from Switzerland, felix

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@superwife

Am really interested in the Walkasins – suppose it will take longer for us to have them in Canada. But hopefully someone will post more about them & I’ll keep watching for them here.
Sheila

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Hi Sheila (@superwife) – here is their website if you want some more info.
http://rxfunction.com/
John

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@swiss

Hi Jim, a Burst DR stimulator as a spinal cord implant, is that a difficult operation or a routine implant? What is the cost in the US? I wonder if I can find such a methode here in Switzerland where I have tried just about everything and would like to evaluate this method through my neurologists.
Thanks for your help and continued success, felix

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Hi @swiss @jimhd – here are the links for more info for the Burst DR:

St. Jude Medical – http://bit.ly/2m3Wmow
YouTube video on how it works – http://bit.ly/2tfcfeS
YouTube video on Burst DR patient trial – http://bit.ly/2ve7pzI

John

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@jimhd

I promised to report my progress. It’s been 4 weeks since the spinal cord stimulator was implanted. The benefit of the Burst DR stimulator isn’t really felt until the surgical inflammation and scar tissue have started healing. This past Saturday was the first time I could say definitively that I felt real relief from the peripheral neuropathy pain in my feet. I’m not all the way there yet, but I think I can see the light at the end of the tunnel. The company rep did some fine tuning today, and I can call him anytime I think the controller needs some adjustment. At this point, I can work all day in the yard and gardens and pasture, and my feet won’t hurt much. 4 weeks ago, my pain might have been a 7 or 8, but now I can say that it’s only been to a 3 or 4. Pretty exciting!

Jim

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@johnbishop

I worked for 5 or 6 hours in the yard today, with only minimal pain. Because of 4 surgeries this spring and summer, I couldn’t get out and pull weeds or mow. I was finally able to mow the lawns, thanks to my riding mower, but weeds took over the garden and landscaping. They were 2 feet high when I was able to bend over and have some range of motion, and a little each day, I made my way around to the garden (just finished that yesterday) , the flower beds and all the miscellaneous places weeds like to grow. The one place I hadn’t attacked was the orchard, and today I did about 80% of it. Some weeds can just be pulled up, but others required a shovel.

I think the therapist will see some improvement in my depression when I see him tomorrow. Yard work is always therapeutic for me. Sunshine also improves mood.

Jim

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@jimhd

I promised to report my progress. It’s been 4 weeks since the spinal cord stimulator was implanted. The benefit of the Burst DR stimulator isn’t really felt until the surgical inflammation and scar tissue have started healing. This past Saturday was the first time I could say definitively that I felt real relief from the peripheral neuropathy pain in my feet. I’m not all the way there yet, but I think I can see the light at the end of the tunnel. The company rep did some fine tuning today, and I can call him anytime I think the controller needs some adjustment. At this point, I can work all day in the yard and gardens and pasture, and my feet won’t hurt much. 4 weeks ago, my pain might have been a 7 or 8, but now I can say that it’s only been to a 3 or 4. Pretty exciting!

Jim

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@jimhd I am so pleased for you! Teresa

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I am a caregiver. My partner has idiopathic neuropathy. In the past 3 to 4 years we have seen every specialty of physicians that we can see. Some of the tests, etc tried are: EMG(needle in the legs), MRI, Blood tests of every kind, Tens machine, a trial for spinal stimulator, very large dosage of Vitamin B-12 injections for several months, My partner does no not have diabetes. He was treated by a chiropractic doctor and a homeopathic doctor with trial of multiple vitamins and minerals. He has tried physical therapy, He has seen two different pain management doctors in two different groups of doctors. He even tried a foot doctor. He hurts so badly that he does suffer from depression at times because of the pain. He never gets any relief. How does one suffer acute pain day and night for years? He has tried neurontin, Lyrica, and cymbalta with no relief. He had a very bad time with cymbalta. It was so difficult to stop taking cymbalta and he had brain sparks from that drug for months after he stopped taking it. We live in the Jackson Mississippi area and most of the doctors in our area just have no answers for us. I think that they fail to help patients so often that they have given up. We are in process of trying to decide if we should try the Mayo Clinic in Florida. We have no other doctor to help us in our area. Both feet are numb with acute pain. He can not wear any shoe that touches his toes. He wears sandals with socks year round. HIs hands are starting to be numb but no pain there yet. Is there anyone out there who has this acute “hopeless” problem? Has any physician helped you to find relief?

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@ealanddtc

I am a caregiver. My partner has idiopathic neuropathy. In the past 3 to 4 years we have seen every specialty of physicians that we can see. Some of the tests, etc tried are: EMG(needle in the legs), MRI, Blood tests of every kind, Tens machine, a trial for spinal stimulator, very large dosage of Vitamin B-12 injections for several months, My partner does no not have diabetes. He was treated by a chiropractic doctor and a homeopathic doctor with trial of multiple vitamins and minerals. He has tried physical therapy, He has seen two different pain management doctors in two different groups of doctors. He even tried a foot doctor. He hurts so badly that he does suffer from depression at times because of the pain. He never gets any relief. How does one suffer acute pain day and night for years? He has tried neurontin, Lyrica, and cymbalta with no relief. He had a very bad time with cymbalta. It was so difficult to stop taking cymbalta and he had brain sparks from that drug for months after he stopped taking it. We live in the Jackson Mississippi area and most of the doctors in our area just have no answers for us. I think that they fail to help patients so often that they have given up. We are in process of trying to decide if we should try the Mayo Clinic in Florida. We have no other doctor to help us in our area. Both feet are numb with acute pain. He can not wear any shoe that touches his toes. He wears sandals with socks year round. HIs hands are starting to be numb but no pain there yet. Is there anyone out there who has this acute “hopeless” problem? Has any physician helped you to find relief?

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Hello @ealanddtc – welcome to Mayo Connect. I’m glad you found us! I can empathize with your partner. I’ve been struggling with idiopathic small fiber peripheral neuropathy (SFPN) for 20+ years. The only saving grace for me is that I only have the numbness and not the pain. I do know there are no medications that will fix the problem with the numbness. They all just block the pain signals to the brain (my words – I’m not a medical professional and have no training!). I also have spent a lot of money on the different snake oils offered to fix it to no avail. There is hope though. I can share what works for me and has taken away some of the numbness or at least stopped the progression up my legs. Here is the bookmark to my “story” that is earlier in this discussion.
https://connect.mayoclinic.org/comment/36103/bookmark/?ajax_hook=action&_wpnonce=b6c96fff56
I’m hoping others will jump in and share what works for them also.

Thank you for being your partner’s advocate. It can be a depressing thing if you let it get you down. You just have to stay positive and keep taking one day at a time.

John

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@ealanddtc

I am a caregiver. My partner has idiopathic neuropathy. In the past 3 to 4 years we have seen every specialty of physicians that we can see. Some of the tests, etc tried are: EMG(needle in the legs), MRI, Blood tests of every kind, Tens machine, a trial for spinal stimulator, very large dosage of Vitamin B-12 injections for several months, My partner does no not have diabetes. He was treated by a chiropractic doctor and a homeopathic doctor with trial of multiple vitamins and minerals. He has tried physical therapy, He has seen two different pain management doctors in two different groups of doctors. He even tried a foot doctor. He hurts so badly that he does suffer from depression at times because of the pain. He never gets any relief. How does one suffer acute pain day and night for years? He has tried neurontin, Lyrica, and cymbalta with no relief. He had a very bad time with cymbalta. It was so difficult to stop taking cymbalta and he had brain sparks from that drug for months after he stopped taking it. We live in the Jackson Mississippi area and most of the doctors in our area just have no answers for us. I think that they fail to help patients so often that they have given up. We are in process of trying to decide if we should try the Mayo Clinic in Florida. We have no other doctor to help us in our area. Both feet are numb with acute pain. He can not wear any shoe that touches his toes. He wears sandals with socks year round. HIs hands are starting to be numb but no pain there yet. Is there anyone out there who has this acute “hopeless” problem? Has any physician helped you to find relief?

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@ealanddtc

I fully relate to your partner’s condition. I have idiopathic peripheral neuropathy, with numbness, pins and needles, and burning pain in my feet, and some numbness in my hands, and the neuropathy is also causing urinary and sexual problems. I’ve seen several neurologists, a pain specialist and my pcp. I’ve gone through the whole list of neuropathy meds,both those that are specific to neuropathy, and off label ones, with no effect. I’ve been taking Morphine sulfate contin, in addition to the other meds, with minimal pain relief. 4 weeks ago, I had a spinal cord stimulator implant, and starting last Saturday, I had significant pain relief. I still have some pain, but it’s so good for my feet not to hurt so much all the time. It won’t do anything for the other issues, but it’s a start.

Depression took over my life in 2004, and when the neuropathy pain started, it really impacted the depression. In ’05 & ’06, I attempted suicide a number of times, and had to retire on disability. There was no way I could function in my vocation as a minister. I’m still working with a therapist, 11 years later, and thoughts of suicide are pretty much a daily challenge.

Chronic pain can be debilitating, and certainly affects our mood. I would recommend finding a pain psychologist. They can be a great help.

Many people have found Marijuana helps with chronic pain. It’s legal here in Oregon, but too expensive to be a reasonable option for me. Maybe Medicare will one day decide that it’s a safe, legitimate alternative to opioids and everything else that’s out there.

I hope he finds something that helps soon. He’s fortunate to have a caring caregiver. We all have a need for love, especially for love that is active, not just passive or romantic.

Jim

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@ealanddtc

I am a caregiver. My partner has idiopathic neuropathy. In the past 3 to 4 years we have seen every specialty of physicians that we can see. Some of the tests, etc tried are: EMG(needle in the legs), MRI, Blood tests of every kind, Tens machine, a trial for spinal stimulator, very large dosage of Vitamin B-12 injections for several months, My partner does no not have diabetes. He was treated by a chiropractic doctor and a homeopathic doctor with trial of multiple vitamins and minerals. He has tried physical therapy, He has seen two different pain management doctors in two different groups of doctors. He even tried a foot doctor. He hurts so badly that he does suffer from depression at times because of the pain. He never gets any relief. How does one suffer acute pain day and night for years? He has tried neurontin, Lyrica, and cymbalta with no relief. He had a very bad time with cymbalta. It was so difficult to stop taking cymbalta and he had brain sparks from that drug for months after he stopped taking it. We live in the Jackson Mississippi area and most of the doctors in our area just have no answers for us. I think that they fail to help patients so often that they have given up. We are in process of trying to decide if we should try the Mayo Clinic in Florida. We have no other doctor to help us in our area. Both feet are numb with acute pain. He can not wear any shoe that touches his toes. He wears sandals with socks year round. HIs hands are starting to be numb but no pain there yet. Is there anyone out there who has this acute “hopeless” problem? Has any physician helped you to find relief?

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I feel your pain…no pun intended…I have your pain. I ended up seeing a rheumatologist at Mayo Scottsdale for my issues. As many find it is a trial and error process for pain management. I’ve tried so many I don’t believe there are any left. As it stands, I take 9 gabapentin and one cymbalta capsule a day. I seem to do fine with cymbalta. I take it in the morning to get the full effect. However, my neuropathy pain is so severe I also apply a fentanyl patch of 50mcg/hr every 2-3 days. I cannot function without the patch. Towards the end of the life of a patch, my pain is almost unbearable. Depending on the level of my activity, the pain can return just after 2 days. But my prescription only allows me one every 3 days. So, I have to either go without or stretch some out to 4 days when I’m not so active. I can’t get anymore than 30 patches in a 90 day prescription because of insurance. If I do it’s $1100 more!! I believe it will only get tougher for doctors to prescribe any kind of opioid pain meds. I pray my patches aren’t going to be effected by the new regulations by the Feds. I hope this will lead you on to some answers to your questions and eventually to some relief.

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Hi I was just diagnosed with peripheral Neuropathy. I don’t have an appointment with Neurogist until August 31st.

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@pkindron

Hi I was just diagnosed with peripheral Neuropathy. I don’t have an appointment with Neurogist until August 31st.

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Hi Patti (@pkindron), one thing I would suggest if you don’t already done it is to make up a list of questions you may have for the neurologist so you don’t forget when you have your appointment at the end of August. It’s so easy to forget what you wanted to ask when the appointment rolls around (for me anyway!).

John

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I have been to many neurologists and cardiologists over the past 5 years in my home state, Hawaii, also in Washington State, California, and next will be in Arizona, trying to find a way to slow the progression of this peripheral neuropathy and some ominous changes in my heart and other organs. Now both arms are in braces for carpal tunnel syndrome and walking is no longer possible due to the lack of feeling in both legs. The latest doctor was the first to test my Kappa and Lambda light chains (along with protein in urine, and other related tests) and it appears to be amyloidosis. However, I won’t know for sure until I get to the Mayo Clinic and have the hematology tests and biopsies done. If you are having a problem with PN that goes beyond RLS, have you asked your neurologist about checking on your free serum light chains?

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@pkindron

Hi I was just diagnosed with peripheral Neuropathy. I don’t have an appointment with Neurogist until August 31st.

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@pkindron, I also have peripheral neuropathy, with no discernable cause. I’ve tried every medication available for neuropathy, and several others that are off label, and none of them have helped. Reactions to Lyrica made me incoherent, and I spent a night in the hospital, which was unfortunate, because it was helping. I am now taking Cymbalta (not sure it’s doing anything) and Morphine sulfate contin. Still a lot of burning pain. BUT, 5 weeks ago, I had a spinal cord stimulator implant, and after the surgery healed, it started to relieve the pain. For a week, my pain has gone down from 8 to a max of 4, after a day working in the yard. There are quite a few meds used for neuropathy pain, but I don’t know about treatment for the other symptoms. I have numbness in my hands and feet, and neuropathy evidence in other places. I know that balance and weakness are also symptoms, though I haven’t reached that level.

Gabapentin and Lyrica have helped many people. I don’t know if you have any pain, but if so, it’s usually treatable. I had the numbness and pins and needles for a few years before the pain started. I’ve learned that everyone is different. I don’t think that anyone can predict the progression of the disease. We can hope and pray that our progress is very slow.

Jim

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@pkindron

Hi I was just diagnosed with peripheral Neuropathy. I don’t have an appointment with Neurogist until August 31st.

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That is a great idea. I will make up a list of questions for the neurologist. I was even thinking of purchasing a journal and writing down all the information I have. I’ve been to 3 other doctors and they don’t explain to you about what to expect. I was handed a referral to go to the neurologist and on the referral form it stated i was going for the consult because of Peripheral neuropathy but he didn’t even tell me what it was. I guess I should of asked the question but after the 4 MRI’s and he told me that there was no tumors/cancer I was so happy about it I didn’t even look at the referral until I left his office. Thank you so much!!
Patti

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