Mayo Clinic Connect
Anyone here dealing with peripheral neuropathy?
Liked by John, Volunteer Mentor, peggyj4411, jazzy27, heather074 ... see all
@jesfactsmon @johnbishop Hi guys! John, I have to thank you so much for posting the DRG studies you found. I will read them all, and have read a bit already. You are a pro at finding information!!! Hank, I will post as soon as I get a trial done. So far, I have called and emailed my pain doc about 3 days ago, but have not heard from him to reschedule yet. I know that in Illinois, all elective procedures begin on May 12th. I read that patients are prioritized as far as who gets procedures done first. I know there are people with really serious things that have been delayed, so I don't know when I will be scheduled. When I am scheduled, I will post that I am. It is just not soon enough. I feel like a human pain machine, with such aberrant, abnormal foot sensations that it is utterly freaky. I would describe, but it is actually rather disgusting. EWWWWW!!!!! Anyway, I cannot do it soon enough. My husband is so funny. I live on Marijuana and Kratom, and now he is pushing alcohol. He says that maybe if I get drunk enough, I won't feel a thing. I may have a few glasses of wine tonite, but I am not a drinker, so I don't know if I can get the stuff down. I also don't want to like alcohol, as it is not a good thing to drink. So far, the Kratom works best for helping pain, and not making me stoned. Last night, while watching Breaking Bad, a great series for binge watching, I was taking bits of Marijuana Gummies as I watched. Whoa, with a 45 minute delay before they work, I thought I went to the moon with how I felt once a Gummy kicked in. I can't believe I ever enjoyed the stuff. But it beats pain. I also was able to still concentrate on TV, which is good. Anyway, I am rambling, probably cause I have marijuana in me as I am writing. What a life!!!! And now, we can't even hug anybody. Big gip! Anyway, be safe and as well as you can be. I will post once my trial is planned, and probably sooner! Lori
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Here's hoping you are close to the top of the schedule for procedures when they open up Lori!
Liked by helennicola
Enjoy those gummies to the furthest extent that is possible! 🙂
I haven't read much about it, but from the little that I did this is what caught my eye about it:
"Three months after the implant, 70 percent of participants who received DRG stimulation had greater than 80 percent pain relief, compared to 52 percent of the control group who underwent SCS."
The above was from the following website:
I am VERY interested to hear whether @lorirenee1 gets positive results. Go Lori!
Hi, I'm new to the group. I suffer from idopathic peripheral neuropathy so I'm very interested in what works for others that I could try. However, I'm frustrated in my quest because so many of the participants use shortcuts to identify different therapies or medicines they use. I have no idea what DRG, SCS and all the other abreviations mean. I realize that many of you have been on this site for some time and I'm sorry for the pain you're experiencing. If you could, the first time you mention one of these items please spell out what the letters stand for then in () add the abreviation after the words. Then to your heart's content go ahead and use the abreviations.
Liked by John, Volunteer Mentor, rwinney, jeffrapp
Lori, my wife and I are also interested in how this goes for you. I had not heard of it before but still get immediately excited whenever I find out about any new possible PN solution. Maybe this DRG procedure will provide us all some new hope, based on your results. Tonight Linda's pain level was through the roof for 3 full hours before bedtime. She went to bed and went right to sleep thank god (I rubbed her feet as she was drifting off -this has been helpful to her lately). I started looking through some old links to websites related to PN research and noticed one about FLT3 that I did not remember. Apparently there is a company, Biodol, that is trying to develop a pain treatment with it. If anyone knows anything regarding it I'd love to hear about it. Anyway, hope you get scheduled soon Lori.
@jesfactsmon I have bad pain with my neuropathy and I take pain pills when it gets bad. Does your wife take pain pills? Of course if I have any THC in my urine they will stop prescribing me pain pills.
@jamesinsonoma All of the abbreviations can be hard to keep up with.
(Adding to what I wrote in the following post yesterday: How long have you had the diagnosis of PN? Have you tried very many treatments? If you're like me, multiple doctors have had me try many, many meds, along with an SCS implant and seeing a pain therapist.)
I also have idiopathic small fiber polyneuropathy (sfpn) Sfn is small fiber neuropathy. Almost 3 years ago I had a Burst DR spinal cord stimulator implant (scs), and for the first year I had 75% pain relief. After the first year, the pain began to return, so I would make an appointment with the company rep to adjust the settings on the controller. This became a 3 month process. Around the end of last year the adjustments stopped helping. At the end of February I turned it off to see how much it was doing, and I couldn't feel any change. I turned it back on a few days ago and my pain hasn't slowed down at all. My feet and ankles have bad burning pain, so the neurosurgeon I met with last fall talked to the guy who does the controller adjustments to suggest a different approach. It hasn't helped.
Moving on, I had an appointment with the doctor to discuss a new treatment, a drg implant (dorsal root ganglion), which targets more specifically the nerves that are causing problems.
If you have time, it could be helpful if you go back in the discussion and read what others have written about sfn, scs drg, etc.
Liked by John, Volunteer Mentor, rwinney
I added some other thoughts to this post for your consideration, in parentheses.
I know I run across acronyms frequently. PN is peripheral neuropathy, but could be polyneuropathy, AN for autonomic neuropathy, OA for osteoarthritis, HX for history, ECT for electroconvulsive therapy, PT for physical therapy, PCP for primary care physician, PNP is psychiatric nurse practitioner, etc (et cetera)… I can't imagine cataloging all of them. But given the current covid19 isolation, this might be a good time to try. (I'm not sure what covid19 means exactly.)
Each specialist has their list of medications they might prescribe for pn, in my experience, at least. I had a nerve conduction study (NCS) maybe 10 years ago because I was feeling tingling and pins and needles in my feet and legs. I was given the diagnosis of PN, but I didn't do anything to treat it until the numbness and after that the pain kicked in. My PCP prescribed me the standard neuropathy meds – Gabapentin, and others that I don't remember. Then I started seeing a neurologist who had a list beyond that of my PCP. Next in line was a pair specialist, whose list was the longest. I tried everything that might remotely treat my nerve pain. At some point my pain was labeled intractable, which means nothing helps. BTW, it's pretty much the same with treating depression. I started taking morphine sulfate contin, and that's the only medication that touches the pain, though it really only takes the edge off the pain. A few meds have helped for a little while; some had no effect; some helped but had unacceptable side effects (most notably Lyrica).
As I mentioned earlier, the SCS implant was great while it lasted. The man who has done the adjustments to the controller suggested that I consider a drg stimulator, which led me to a neurosurgeon who is wonderful. She said that the drg stimulator is kind of a last resort, and she wanted to be sure I tried all of the options (which I surely must have) before going ahead with the drg implant.
(In summary, James, these are the things I've tried. You have probably tried some of them. Of course, what hadn't worked for me could well be just the treatment you need.)
Many here will attest to the fact that the search for pain relief can be a very long, very difficult, often frustrating journey. We all hope that someday a magic pill will be discovered. But until that time, we go down the lists of treatments that have helped some people. Each of us is unique, so the right treatment is unique to each of us. Unfortunately for some, treatment options run out eventually, even psychological approaches. (The good thing about this and other discussions is that we're always reading about new approaches that might improve our quality of life.)
Isn't life great?!?
Life is good. I'm grateful for good doctors, for a nice place to live out in the country, for Medicare, for a good church, and for the woman who's loved me (most of the time) for 49 years. And God is good.
Good to meet you, James.
Liked by John, Volunteer Mentor, lorirenee1, rwinney
@artscaping Can you love someone that you dont actually know? Because, I think I love you Chris!!! 😊You're the best! Thanks for being so uniquely you.
I'm hopeful and very willing to share anything and everything I learn with hope that it can help someone elses journey.
Good morning all. I'm finally scheduled for Mayo's 3 week pain rehabilitation program to begin June 18th through July 9th. I'm overwhelmed, excited, happy, scared, concerned etc…Covid has turned things upside down. Also, I am faced with anxiety simply because it will be a daunting task physically and mentally. M-F 8:30-4:30 for 3 weeks.
It's taken over a year to get to Mayo and I'm very grateful that I'm going, dont get me wrong. I know I will be in the best place possible for proper evaluation, support and encouragement. I will fall back on my tools of diaphragmatic breathing, meditation and mindfulness. I will pull up my BIG girl pants and make it happen!
Be well and I hope everyone has a manageable day. 😊
Liked by John, Volunteer Mentor, Jim, Volunteer Mentor, lorirenee1
Very best of luck Rachel. My wife Linda and I are VERY interested in your experience with this. We watched the video yesterday with Dr. Sletten which you had mentioned. I must admit I did not really understand some (much) of what he was talking about but I was surprised that Linda seemed to get quite a bit out of it and was enthused about it. I guess I need to see it again. Anyway, will be interested in your adventure in Fla. Wow, 8 hours/day for 3 weeks, that sounds very intense! But exciting also. Rachel, could you remind me a little about your pain situation again and where you have the worst of it. Thanks, Hank
that is wonderful news Rachel! I wish you the best of luck, you will do great because you have all the mental tools and positive attitude needed already. 😁 Helen
@rwinnwy Glad you finally got an appt to start in June that is great hope it sure helps you
@rwinney — Happy dance indeed!! You have your friends here a mouse click away for support 🙂
Did you see this?
Pain Rehab FL Graduates Answer Frequently Asked Questions: https://www.youtube.com/watch?v=40Njc4X90fE
Liked by lioness, rwinney
I have Small Fiber Polyneuropathy, chronic migraines and photophobia (eye surgeries in the past to restore my vision). I feel my body now has Central Sensitization as well. Not sure how else all is explained (hence Mayo Clinic). At this stage of my neuropathy, pins/needles, numbness, sensations have been turned down to a low roar with Lyrica and supplements. They appear less often but do flare. My thighs burn, back spasms, leg and arm muscles twitch, calves get intense pain and are weak, neck/shoulders/arms burn and are weak, arms still go numb and tingly when sleeping on them, toe pains with wrong pressure, random pains spring up in hands and wrists along with weakness and aching. I wake in pain from my bed which can be anything from a back and hip flare, which may last days to weeks making it hard to walk, or my neck and shoulder pain flares alone or into migraine. I refer to my legs dying last year because they slowly lost ability to walk a normal distance without pain, locking in the hips, feeling like they turned to cement. They ache profusely when pushing to use. I sleep 50/50 between bed and recliner depending on day and body circumstance. I take hydrocodone for pain and when that doesn't cut it alone, I use medical marijuana. I've researched and come to a conclusion that this all may be bigger than just neuropathy alone. That's why Dr. Slettons video lined up for me. I check all the boxes. 7 years ago my life changed with eye surgeries, then 4 years ago with neck pain then migraines then neuropathy. If I recall your wife does not meds. That's a challenge depending on her pain. I have mitigating factors and the biggest is an opiod. We all know the evil they possess…however, this is a catch 22 for me. It's a love/hate relationship and I need Mayo to prove to me that I dont need them. I've tried again and again to prove this to myself. Problem is my body is addicted after 3 years on them so on my better days when I work so hard to not take them, I feel the effects of chills or sweats. I hate something having a hold over me like that. Heres the thing though, I have way more pain days and they are a life saver to me. Only time will tell. Bottom line is, if I use my body, I hurt and I'm not about to sit around to save myself from pain, that dormancy only creates more pain. So it is desperately about finding balance between rest/activity and body/mind with the help of proper, helpful medications. Sorry to go on and on. Hurts my hands but I'm a glutton for punishment, a die hard. Pacing is not my forte, yet I work hard on it every day. The new book I read reminded me that I'm a challenging makeup….type A personality and perfectionist! Ughhh….I'll admit it. 😉
Thank you Linda! Fingers crossed
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And a big thank you to both you and your wife for your vote of confidence in my journey to Mayo.
Liked by John, Volunteer Mentor
Thanks so much John. I sure know I do and I appreciate it very much. Yes, I have read that link. Thank you. Highly successful, I am hopeful!
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