Post Mastectomy Pain Syndrome (PMPS)

I trying a Quell nerve stimulator - totally non-invasive, it costs $250, and then about $30 monthly for the electrodes and comes with 100% money back 60 day guarantee, if bought directly from the company. I figured it was worth a try, as they only thing that I've found that works for my pain is topical marijuana cream and oxycodone, and even that only takes the edge off - so what the heck, right?

I decided that a Quell was worth a try, I've been using it for 10 days now, and let me tell you - IT"S WORKING!!!!!! It's helping all of my pain issues, the post mastectomy, neuropathy, the arthralgias that are caused by the aromatase inhibitor, the osteoarthritis pain, the fibro pain - all of it. https://www.quellrelief.com/ The clinician tab has more of the technical info on the machine. I was initially wearing it 24/7, but the last couple of days I've taken some 3-ish hour breaks from it, and the pain relief continues, I've been able to cut my pain pill usage almost in 1/2 in a week.

This is what I posted this on a FB forum, it tells a little about it.

I'd like to talk a little about the Quell unit - it's very new on the market. It's actually quite different than a tens unit (the similarity being that they both use electrical current to stimulate nerves) Tens units work similarly, but if you go to the Quell website, under the clinicians tab, you'll see that the Quell unit works differently, implanted simulators work on only the dermatomes that nerves go to. The Quell unit works on the Gate Theory of pain management (check out on Google). I've had my Quell unit for a week now, I've been able to drop my pain pill usage almost in half, I think that I could drop it faster, but worry about withdrawal symptoms, my pain level has dropped by more than 50%, even with the lower dosage of pain meds. I'm able to accomplish a lot more, with a lot less pain. I can tell you over the last 6 years I've tried every pain med on the market, antidepressants, anti spasmodics, anti convulsants , all the neurontin type drugs, trigger point injections, neuroplastic brain techniques (which interestingly are sort of based on the gate theory too), several different types of PT (myofascial release is really the only one that helped at all). I've never managed to get the placebo effect with any of them. But by the end of the 1st day with the Quell unit on, my pain had already dropped, and now a week later it's still dropping. My physical therapists both said that they believe that the technology makes sense to them and are very interested in more info (they are researching it more for them selves). Hope my rant is ok.....but this is the first thing in 6 years that I actually think might work for me. I have chemo induced fibro, aromatase inhibitor induced arthralgias in all of my joints, severe neuropathy in my feet and legs, PMPS, osteoarthritis in all of my joints (thanks to the AI), and I'm sure a few that I missed, and this device is helping with all of my pains. I feel like I may be able to get my life back. OH, and I have tried TENS units and they only made it worse. And now I've seen my PCP and chatted about it with my old PCP, and they are both super interested, both knew alot about the Pain Gate theory.

So for now, I'm going to keep wearing it, and hope that it continues to work for me. You're welcome to ask me any questions about it.

Linda

My aunt has the implanted stimulator and the Quell, after only 1 day, is working better for her than the stimulator does.

LindaKR. Where are you placing the Quell electrode? Are you wearing it around your ankle?

so you wear it all the time? seems incredible! How long do the batteries last? Is it suppose to have any SEs?

Does anyone have success wearing Quell just for the tightness and pain in chest and upper arms i.e. PMPS?

....it also helps with the achiness that I get in my arm from lymphedema.

Thanks Linda. I'm still on the fence but if I could get some relief from this terrible tightness and burning in my chest that would be great. I'm thinking I might give it a try after I take my first big solo trip since my surgery last April. I fly to Vancouver and do a road trip in British Columbia. I love western Canada and am excited to see how I do with carting luggage and my camera gear.

I am so glad to hear your positive report and hope it continues.

The Post Mastectomy pain syndrome, is like not permanent pain, but as you described it, sharp pain for about 20 seconds, and then as often as a few time in 10 minutes! Also it hurts when you move the arm! And the last but not the least, a burning senzation of the skin and you wish to have it numb all the way to armpit! Some of the ladies describe it as "iron bra" or a vice!

If you want to join to our group in FB you can find it by clicking on link

https://www.facebook.com/groups/759940397434876/

Gentle Hugs

jo5....Yikes!!!!! No rash for me. I wear it almost all the time and switch legs.

just trying Cymbalta - the SE's make me fee like i'm back in chemo! Nausea, bad taste in mouth, no appetite etc...this can not be good for me ;(

About the Quell--I saw someone in my office wearing what I thought was a brace of some sort on her leg. I asked her what happened and she explained to me that it was a Quell unit! I told her I had heard about this device from women who participate in this discussion. She told me that she is VERY happy with the Quell! She has had several back surgeries over the past 19 years and was taking morphine and other drugs to alleviate her back pain. Her pain doctor recently had his license suspended for a brief time for an investigation of possibly over-prescribing medication. My co-worker's pain was so intense that she was wondering whether she could continue working especially since she was without her medication due to the problems with her doctor so she took the opportunity to try the Quell. She said the Quell has changed her life! She if off the morphine and other pain meds completely and feels as though she has gotten her life back!

Hi, I'm new to this thread. I had a BMX on June 30,2016. I've had a hard time with the pain. Both my BS and my PS seem confused by my pain level. One part of it is that I can't take pain meds so I have done this without anything. A big part of the pain is a burning especially in the middle of my chest. I feel more like a burn patient then a surgical patient. It's also underneath both breast. Is this nerve pain? Anyone know if it will get better? And will the fills for the TE make the pain worse? Thanks for the help

momto4 and 4boys it is awful that you have to be on this thread as you probably expected your recovery to be fairly straightforward as described to you by your surgeons preop. Getting to a pain specialist as early as possible is important. I know I waited almost a year nd the pain doc emphasized the importance of early intervention(at least at about 3 months post op) even though my PC doc had put me on Neurontin without much relief. There are a variety of interventions, however, a big bonus of seeing a specialist is that your story is heard and not dismissed. Sadly, your surgeons job is over and they have such limited knowledge and perhaps even less interest in any chronic problem that resulted from their surgical intervention. Definitely seek a pain specialist who can oversee an entire pain management plan. Let us know how you continue to do in this crazy world of recovery.

Jo-5 they say misery loves company but I am so sorry you are still suffering. They never tell you this could happen. In fact both of my surgeons said they've never seen this. That's not very reassuring. What is a ten unit? I do use Aleve. It works ok but not great on the nerve pain and it can upset my stomach so I need to be careful.

Hi Ladies, I think some of my symptoms fit right in.. but let me know if I dont' have PMPS... I dont' really feel pain (like I did with the TEs) but I do feel a constant tightness and a burning sensation on my sternum. In fact, if feels like I am a 3rd degree burn patient. I am 5 weeks out of BMX, and 2.5 weeks out of TE Removal, and trying to start stretches, but don't want to hurt myself and cause problems either. I still have all the glue they used from the surgery 2.5 weeks ago...

I just am wondering what to do about the tightness and burning feeling? I can most times zone it out but sometimes it's really bad. I'm on NOTHING for pain as I don't want to mess up the pathways for Tamoxifen.

Any advice?