Peripheral nerve stimulators
This is a long shot, but I’m looking for people who have used implanted peripheral nerve stimulators (PNS) to control nerve pain. They block the pain signal to the brain. Stimrouter and Stimwave are major brands. These are NOT the same thing as spinal cord stimulators, of which there are many brands. I’m about to have a Stimwave implanted to block intractable pelvic and leg nerve pain.
Interested in more discussions like this? Go to the Neuropathy Support Group.
I too am looking for Stimwave and Nalu users. I have had a nasty saphenous nerve neuralgia on my left knee since ACL surgery in 2011. As with most chronic pain stories, mine resulted in a total life change, having severe neuropathic pain almost all the time, losing my job, career and many friends ,and enduring countless procedures, medications and surgeries. Here I am almost 10 years into this and I am now mostly bedridden and disheartened. This is the classic chronic pain story .
In terms of nerve stimulator‘s, I had two trials of traditional SCS. Both were accompanied by significant side effects that resulted in failed trials. In 2015 I went to Australia to have the Axium DRG stimulator by Abbot put in. I had a successful trial and went on to have 7 months of 70% relief that allowed me to start a new life albeit with pain. It was great , I finally felt like I was moving forward. Sadly , despite many adjustments and trips to Australia ,my device just slowly lost its effectiveness. It was not a result of a technical problem, it was just my body getting used to it and undergoing neuroplasticity.
Nothing has helped ,however ,during my more recent nerve surgery a very significant finding was observed. A femoral nerve block infusion was used postoperatively to help my pain and indeed it blocked not only the post op pain but all my neuropathic pain in my leg too. Therefore it showed that most of my pain was still peripheral and not predominately central as we thought before. The 36 hours it was in was like the best present you could ever receive. Suddenly you were on “ the other side” of the pain experience. Cruelly, it can only be left on for a short time. Since then, there have been many attempts to find a spot along the course of the femoral nerve where the pain block could be reproduced. It was found that the only place is up in my groin where there are femoral sensory nerve branches.
I have therefore been on a hunt for a peripheral nerve stimulator device. As I am in Canada, these devices are still seen to be experimental and hence not covered under Canadian healthcare. There is a small group of people getting Stimwave devices in Ontario, but as I live in British Columbia I do not have access to that group. Therefore I am looking to come down to the states for either a Stimwave or Nalu trial . This really is my last hope and I am only looking for a small reduction in pain to allow me to have some type of functional lifestyle. There don’t seem to be any good scientific trials yet comparing these devices and I find it’s very hard getting unbiased advice from medical professionals in the US. There seem to be pros and cons with both devices. The main pro that I see with Nalu is that I can have a trial for a couple of weeks to see if it works. That will cost me 10,000$. My insurance does not cover any of this so I am paying the $50,000 for implantation if it works. During my pain journey, I have probably spent more than $200,000 on all my therapies as several of my major procedures were done in the US or were not covered in Canada. I am sure this is not unusual .There is no monetary figure you can put on your health.
On this thread , I have read the two or three descriptions of Stimwave and Nalu connectivity issues, and I do realize that both systems require the placement of a device on the skin. Both too , have issues of lead migration.
So I too would like to hear from anyone with experience with these devices, positive or negative to help me make my decision on which one to go with. It does seem that the Nalu device is presently under favour but technological changes happen all the time so it’s hard to keep up.
Presently nothing is happening during the Covid crisis and the closed Canada US border. I am trying to get my ducks in a row so I can jump in when things open up.
Sorry to hear of your experience. I now just use morphine to control the pain, plus, i use arthritis strength tylenol with caffeine and aspirin. Sometimes, I'm entirely free from pain and sometimes an ache. The drs tell me the pain is coming from my back, not where it hurts, it sure is hard to see that. Sometimes I want to cut my leg off. Before morphine, when I went to dr, I was in insufferable pain. I wanted to die and told him that if I had to live with that the rest of my life that I wanted to end it and even tho I'm a christian, I couldn't help it. I told him that if his wife were in the same pain that I was in, that he would give her something to ease the pain. Before that, I had Salon Pas patches up and down my leg where it helped the most and slept with an oversized heating pad laying down my leg. I'm hoping that I'm a candidate for spinal fusion and that it takes the pain away eventually. I don't mind a little pain but what I was going thru was horrible. Good luck finding something.
They had told me that the stimulator was the last thing they could do for me. I'm old but I think in fairly good health, but my balance is terrible. I pray with every step I take that I won't fall and break my hip. I've had 30 some operations and never had a problem, I hope my luck, blessings haven't run out.If I could get out of pain and be able to walk right without feeling that I'm going to fall down that it will be the biggest blessing that God could give me for these last yrs of my life. I'm going to be 79 in Oct, I'm an antique! You look pretty young. I hope that you do well.
After the initial visits to see what was going on, I just got tired of making the trips over to get the settings changed when it would not stay in the right place, I didn't think there was anything I could do so I just gave up. He would have had me going to the office every week and I didn't want to keep doing it. It takes too much time and too much gas! Maybe I give up too easy but I was so disappointed in it. Have a wonderful week!
@billielynne There are some great exercises just for balance. Physical therapists or videos on youtube would give you specific exercises for balance. I am 68. Not so young! I am so sorry about your experience with that machine. The DRG that I am implanting is totally controlled from home with ABBOTT reps on the phone to guide me. What you went thru is too much!!! Take care, Lorirenee1
@jesfactsmon Hi Hank, Still on for DRG implant on July 9. Wish it was tomorrow. I am like a human pain machine. Got pissed and went shopping in spite of the pain. Walked around the block a few times. At least I seem to be recovering from the trial! How is Linda? How are you? Bye for now, Lori
I forgot to introduce myself to the group . My name is Alan and Im from Vancouver BC. I am 60 yrs old and have been suffering ever since 2011. I had a very active and rewarding job , was athletic , had a very happy marriage , was outgoing and had a very active social life. Of those , only the marriage remains . I am very fortunate for when adversity strikes, your family and a one or 2 good friends are all that matters. Mine is a classic chronic pain saga that I’m sure you are all familiar with. I am hoping to engage with this group to share support and encouragement in addition to sharing information.
Now to reply to you, Yes I’m on high dose opioids too . When my DRG was working I weaned off them …it was so good being off them . It’s like your personality comes back and all the side effects go away . But here I am 5 years later on max dose plus oxcarb and lyrica and having a very rough go of it. I too would have an amputation in a minute if it would solve anything , but alas , not. Really hoping a PNS device will give me a little boost .
So I can relate totally to your feelings of despair , as I share them .
Hang in there, kid! Just think, this may give you some or a lot of your life back. Can you imagine? Whoa, that is going to be great! We are both in your corner rooting madly. Hank
@jesfactsmon AWWWWWW, just thanks, from the bottom of my heart!!!! Do not forget, Hank, that the ABBOTT rep would gladly sit down with Linda and teach her to use the foot ipads AHEAD OF TIME. Please, tell Linda that it is easy. Like pushing a door bell. Seriously. Please do not let her techno phobia get in the way. It is barely technology that she will do. Just simple button pushing. God in heaven, it would be criminal if this stopped her!!!! I will keep you posted. July 9th cannot come soon enough. Pain amped up all over again. Love to you and Linda. Such sweet friends. My silver lining among my clouds…… Lori
@jesfactsmon Hi Hank, I think my DRG is the Axion by ABBOTT. It has the longest battery life. I am getting scared because I just read here about a man @alh123 Alan, who's DRG just stopped being effective. God in heaven. But I don't know what else to do. Nothing is perfect, for sure. But his lost effectiveness after 7 months. It takes a few months to even heal. I don't know. I just don't know. I have to go through with this, I have to at least try. Just sad and scared today…….Lori