Mayo Clinic Connect
Has anybody had an implantable neurostimulator for chronic pain?
Liked by bekie, grandmaR
I have Bost. Scientific wavewriter since December for 8-9 levels of lumbar pain. It worked well for me overall and especially in eliminating pain spikes. However my left cluneal nerve is now emitting 8-9 pain most of the time. Pain doc is recommending and researching using Stimwave as a second device. Any one else have 2 devices or had some kind of cluneal nerve impingement repair surgery? I am trying to avoid 3-level spinal fusion. I need 2 pain pills a day and I want to get off them and just use med mar when I need to.
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@baq315a Are you scared of having a fusion. I'm having one done on June 9th and possibly on the 11th. It is a big one, from T10 to my pelvis. I really don't have a choice and do not want to live off of pain pills. I have degeneration that has caused a scoliosis plus senosis in my L4,5 and S1. I'm going to Mayo at Rochester. I have full confidence in my surgeon. They even did a test to see if the surgery would work and when I went in my pain was a 9, when I came out it was a 1 and the next day I still didn't feel pain. My assistant surgeon said that's the way I will feel after the surgery. The pain came back and I'm ready and positive about this surgery even though it's a big one. It will limit me, but I would rather have that then the pain I am having and t he numbness in my foot at times.
Your surgery would be small considering mine. Mayo is the best, my surgeon has the qualifications that I can put my total trust in him. I hope you get pain relief again. I know pain and sciatic pain is not fun. I limp all the time.
Liked by gldnrtrvrlvr
I also selected a spine surgeon from Mayo-Roch, and got precerted so to speak so I can go forward once I decide on fusion. Yes I rear it it last resort. Sounds like you are on right path. My problem is only lumbar discs l2/l3, l3/l4, ND L4/5. Have much Spondylolisthesis and other similar problems. Which Roch doc are you seeing? Staying up there 2 weeks postop? I may use a Jax surgeon not at Mayo here, a Duke trained neurosurgeon.
That's some spectacular test results. Please keep us updated, as you can, on your surgery and recovery. That is a considerable fusion, but you will be in a much better place afterward, and Mayo surgeons are excellent surgeons. It's where I will go next time around.
I had a Medtronic Stim unit implanted for over a year back in 2014 and had it removed after a year of having it adjusted over and over. I had a temporary implant that I felt helped so I went and had permanent implant. I now know that it was premature in feeling it was working. I guess I was holding on with a feeling that I was getting relief. It ended up being a false relief because I wanted it to be. I now have major scar tissue that is causing pain in different ways.
I would highly recommend that you do plenty of research, look at the surgeons results, try to get testimonials before going under the knife. Once you are cut, you can’t go back ! Good luck
@mlross4508 Have you had the fusion or a stimulator implant? I turned my stimulator off for the month of March and felt no increase in pain. I turned it back on in April, and still felt no change in the pain. So, I guess I might as well have it removed.
Because of Covid19, my appointment with the specialist was postponed to the end of June, so I haven't talked with her about what else she would recommend before getting the drg stimulator.
Are your pain and sleep doing better? Any changes to your meds? I hope that the Covid19 hasn't put your life on hold. Except for not being able to go to church and the missed doctor appointments, my life isn't all that different from my normal routine.
After my unacceptable experience with the SCS implant surgeon, the company rep suggested that I look into the drg, and he gave me the name of a different surgeon. What an amazing difference between her and the first surgeon. I have no complaint regarding the implant itself, just the fact that I never had an appointment with him before and after the surgery. I only spoke to his staff on the phone. To my way of thinking, that's incompetent and unacceptable behavior. You listed 4 options that you could choose from, and I wonder if you've gone ahead with any of them, and if so, how effective has it been in treating your pain.
@baq315a When you post put the persons words or numbers, like I did in front of this post. I think this post is for me. Good for you having a fusion and I'm sure at Duke you will be fine. My son and daughter-in-law were professors and taught at Duke and She got her Tenor (sp) there. They are now in NY and she's teaching at Columbia U and does research. My son cannot teach because he is Bipolar 1. He has really a tough time with it. I don't know how he is because we have no contact. It's a long story, but I haven't seen my granddaughter since she was 3 and she's 8 now. We have skyped with her when she's at her other grandmother in Chicago. Part of it is my son's wife is controlling. I'm glad she's taking care of him, but please come home. All I can do is pray. I really have adjusted to it mostly except for not seeing Malowe. When is your surgery? Mine is June 9th, It's a big fusion from T10 to my pelvis. They may have to go in the front and back. I go next week to have a lot of test done. I have degeneration that has caused a scoliosis and my T-4,5 and S1 has stenosis. May Jesus be with you.
@gidnrtrvrlvr Thank you for your post. I'm going to be off posting for a while and it depends on how I feel when I get home if I will be able to post. I will let you know as soon as I can. Yes, I love my surgeon, he has a lot of qualifications and I am totally ok and no fear at all. I am just happy I finally got a it scheduled. Jeanie
Curious, can you explain your disc listings? Is that an I before 2 & 3 or? Not sure what ND is either? Not familiar with those terms, just the spinal vertebrae initials C/T/L/S and numbers for those…thx!
I have had a Boston Scientific Spinal Cord Stimulator since 2012. Spinal cord injury at work. Complete lower lumbar. (2000) Pain for years.Leg seizing all the time, etc. Dr Abram,Burger / Phoenix, Az. did the operation & I have been doing well until 2018. My fusion collapsed due to degeneration/ age, etc. No one will see me now because I have had 3 Drs. before. Unable to find someone in Florida that will help me. Constant pain now & no longer mobile. Refer from Mayo to Baptist.Due to advanced condition, refused.
Welcome to Mayo Connect. I don't know if you read my experience with a stimulator, so in a brief summary – I had a Burst DR spinal cord stimulator implant in June of 2015, gave me great relief from small fiber peripheral polyneuropathy pain that began in the balls of my feet and is progressing up my legs. It was effective for 2 years, then it became necessary to make adjustments to it every 3 months. After 2 years of that, it had become less and less effective, and now does nothing to relieve the pain. I'm trying to see the neurospecialist to discuss a dorsal root ganglion stimulator implant, but my appointment keeps getting bumped back.
Getting close to the end of my options is discouraging and disappointing. Living with chronic pain for which there seems to be no treatment wears us down, doesn't it. I wonder if AARP might have some resources to advocate for you. Are you wanting to have surgery on your back or a new stimulator?
One of the people in this group is amazing when it comes to finding helpful information is @johnbishop . Perhaps he will have some suggestions.
I'm a couple of months from turning 70, and I've been curious to see if I'm treated any differently at 70. I hope not.
Sorry it took me a couple of days to find your message. I'm really busy these days with my yard work.
I look forward to hearing what happens.
Liked by Colleen Young, Connect Director
Hey Jim! Glad to give you some ans. on my stimulator, etc. I have no problem with the stimulator. I have degeneration where my spine was fused. No one wants to help me because of the placement of the leads along my spinal cord. I don't know what course they could take & may never know if no one even won't give me a chance to try to repair it. I have been active all my life & now I am down to a few hrs up, few hrs.in the chair, etc. I can still get things done but it takes all day. NO LIFTING at all or i am down for a few days also. I won't use pain meds except over the counter because I am allergic to most things unless it is natural. HA! 70s are quite a adventure!! Some Drs act like you are too senile to know your own body!! Tends to bring out the attitude in me! Good luck with your health! I will try to find John bishop. Thanks
Chronic pain is emotionally and physically exhausting. It affects everything you do, IF you can do whatever it is that you want to do. It’s just miserable and I think unless someone has been there, they just don’t understand. I can honestly say that even working in a hospital as an RN, surrounded by people of all healthcare professionals, I often felt alone and definitely misunderstood. I especially think when the person’s pain is caused by something unable to be seen by others – pain in neck, back, chronic headaches, jaw pain, etc. – then it is less likely to be believed as (even) existing, or not being “as bad” as the person says or acts, and if said chronic pain causes significant emotional distress/depression then that just adds to the burden. These days my pain is tolerable (neck and back) and with ESTylenol/NSAIDS and a SCS for my back/leg, I’m doing ok. But my other major chronic pain episode (my first experience with it) began in fall 2000 and culminated 11 years after multiple doctors/dentists/oral maxillofacial surgeons and multiple procedures including both minor and major surgeries, ending with having bilateral jaw joint replacements. Recovery was a good 6 months re swelling etc. I had profound depression through most of those years. I had been written off as a “crazy/uncooperative patient” by several of the people I sought help from. I ended up being traumatized by one so called specialist – I still have flashbacks to her screaming at me in office. Ended up being diagnosed with PTSD. (No comparison to what military deal with, please understand, just saying it was explained what was causing my symptoms.) Anyway, sorry for rambling. Been having a rough time right now with more flashbacks – thinking part of it is this social isolation and it is 11th anniversary of my surgery (about 8-9 hours) coming up. The great news is it worked! My jaw pain is no more, I can eat, smile, talk, yawn, hallelujah! I just need to shake the bad stuff back and not think about it. Thanks for listening.
Liked by Colleen Young, Connect Director, Jim, Volunteer Mentor, Merry, Volunteer Mentor, migizii ... see all
I know I’ve mentioned it before, but with the SCS and DRG stimulators not helping me, the Medtronic Pain Pump (now that I have a competent provider) is making a huge difference on my legs and feet. We’re still increasing to a “therapeutic” level for me, but I can pretty much stay active on my feet all day. I pay for it at the end of the day, but that’s what the fine tuning is working on.
Now if I could just find some treatment for the rest of the chronic pain throughout my body. Looking into having my stimulators removed now that the surgical centers are reopening. The other specialists all want MRIs and since the Stim units have not been helpful at all I want them removed.
I hope you are able to get some relief soon. I’ll be praying for you.
Hello @armsteaddarlene, I would like to add my welcome to Connect along with @jimhd and other members. You mentioned you were referred from Mayo to Baptist (Baptist Medical Center?) but were refused due to advanced condition. Are you currently being treated at Mayo Clinic in Florida?
Are you able to share more about the collapsed fusion and the reason for the referral?
@wisco50 I want to welcome you to connect where we cant diagnose but are a caring bunch of people who try to help . I,m so sorry for your isolation you have . I would like to ask @merpreb to talk with you here as she has PTSD also and is a cancer lung survivor .
Thanks. Normally I do well (used to living by myself), I think it’s the timing of my “anniversary” date, coupled with the COVID thing (which appears to have no end) and with my SCS I have been much more active in garden (than I have in years!) which makes my neck act up. I’m about to be 70 this summer, so it gets to be a balancing act, LOL!
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