My friend who has EM but is not a member here has volunteered permission for me to quote from her email following a trial run with a spinal cord stimulator for pain relief. This is what she has written following the trial:
"I did the trial which was quite odd as I was not ill yet still in hospital for a week . The electrodes were placed from my low back and via an epidural like process pushed up to my seventh thoracic vertebrae. That was a lot higher than I thought it would be! This is done under twilight anaesthetic as you are roused and asked if you can feel tingling in your legs ,which signifies correct placement. The battery is connected to the electrodes that come out of your back . This site is closed with a stitch and dressing and the battery taped at your waist. Sound a bit horrible but it was nothing at all. No pain was involved at all, only the pain of a hospital stay. You rest the rest of the day and the following one the technician from the spinal stimulation company visits. In this case a very happy, professional and all round delightful young lady. With great patience she turned the unit on and tapped away at her computer until I could feel a tingle in the areas of my worst pain. In my case this was down my shins and outer thighs rather than red swollen feet. The red feet I am able to control pretty well with meds and environmental things. It was difficult to move the tingle into the areas of pain, rest of me was tingling away, but shin - nothing . Took a couple of hours of facing until it was as good as it could be. Then the unit was turned down so I couldn’t actually feel the tingle . Apparently better and more long lasting results come from this type of stim.
Then I slept like a baby ! I slept like that for the whole week . Unexpectedly it also made sitting more comfortable as blood did not seem to rush into my legs. I also walked outside in the heat and yes ,I did have a flare BUT I did get a considerable distance before this happened ,functional eg could go to say fruit shop without a flare. In aircon or I suppose outside were it cool I could really go walk most of the day and evening without pain. I had only expected help with sleeping so the effect on actual flares and blood pooling was a big bonus. The technician came back several times to fine tune me!
After the trial I now have to wait at least six weeks until everything heals and risk of infection reduced before I go to get the implant with the battery placed in the top of my buttock . The whole thing costs about Forty thousand dollars and is completely covered by my healthcare .
Overall the main risk is infection at battery site; this seems odd. I of course did some research and this is a worldwide problem. If you get a bad infection the device needs to be removed.
I actually got about two weeks improvement in sleep after the stim was removed ,so it obviously did a great job . I was also pleased it was sub threshold to the tingling . Much nicer and less intrusive and it seems more effective. So naturally I’m in ! Looking forward to implant, hoping it is infection free . Can’t sleep again for leg pain’ two weeks passed and am in third week ,so it proves I want one."
I will update this when she has had the implant itself.
Hi Veerla, good to hear from you.
I just looked it up via the search box and there has been a lot of discussion about this method of pain relief and personal accounts are invaluable. Shame it didn’t work for you. Like I always say, there are no two people on this site exactly the same!
I hope you are doing well otherwise?
Wow, this sounds very promising! However, I imagine being in the UK it's likely to be a long time before it arrives here and due to the finance problems we are experiencing it's not likely to be a priority. I don't have health insurance and certainly couldn't afford that amount of money. Although, I suppose I have always get the option of equity release which I would consider, as I don't have children so it doesn't matter to me whether there is any money once I have gone!
Thanks for the link. Obviously this is London and I am in Cornwall. A friend goes to St. Thomas hospital for something to do with his eyes. However, the link you sent will tell me all about it.
I had my first spinal cord stimulator (scs) implanted in 2009. An updated version replaced the original in 2012. It worked to some degree for the first couple years, masking the throbbing, burning pain in my lower legs and feet. As my pain escalated, the scs was not as effective. To mask the pain the scs introduces a buzzing to override pain sensation. As mentioned in the previous post the Medtronic rep was able to isolate the buzzing sensation to the areas in my lower body that were experiencing pain. In order for the buzzing to be felt the scs had to be turned up so high that the buzzing became painful as well. It became even more difficult to think or be aware of anything other than the EM pain and buzzing. The buzzing was bothersome at low pain levels and for me intolerable at higher pain levels. When the scs is turned on, it's like my mind and body are too cluttered with overactive sensations. About all I processed was the pain and buzzing. The competition of sensations; EM vs. buzzing was too much for my mind and body to accept. Since there isn't a way to turn off the EM pain, I turned off the buzzing from the scs.
The scs generator is still implanted in my lower back and I keep it charged but I rarely turn it on (if the generator loses charge for extended periods it won't be able to be recharged). The doctors knew I wasn't using the scs when the second generator was implanted, but it was a new and improved version of the original generator able to get more precise in its delivery to the pain location and not as rough a transition when going from a standing/sitting position to lying down. With severe EM pain, the buzzing is too much extra sensation to be comfortable - for me.
Thanks for the link. Obviously this is London and I am in Cornwall. A friend goes to St. Thomas hospital for something to do with his eyes. However, the link you sent will tell me all about it.
Thanks for the link. Obviously this is London and I am in Cornwall. A friend goes to St. Thomas hospital for something to do with his eyes. However, the link you sent will tell me all about it.
Bristol is obviously a lot nearer. In fact I went there to see an endocrine specialist over a year ago due to my adrenal gland problem, as I wasn't getting any sense from the Cornwall specialists. However, I could drive then and I can't now. Well maybe in a while at the moment I have 3 ulcers on my feet and it wouldn't be sensible. The other option of London might be possible as I can fly from my airport which is only about a mile away. That said I wonder about the dangers of flying as I have thick blood and there might be a possibility of DVT. I am not sure as it's only a short flight.
Also, I would have to pay and as I said I don't have insurance. I don't think there is anyway that the NHS would pay for me to go to London, I don't mean the flight it's the treatment and I would have to find somewhere to stay, which puts up the cost especially in London. Still if it was to work it would be well worth having equity release to pay for it. Anything would be better than the life I have at the moment, which is no life at all really. I have actually got to the stage a few times as my husband and I did last year when he had terminal cancer of taking my own life! That's silly really as one day I might find an answer, especially if the dermatologist that I am seeing a week on Tuesday has any ideas. I have been to podiatry today and they were great and I even saw a doctor, not sure what type. The podiatrist and the doctor were horrified at the state of my feet and legs. They agreed that the best course of action for the moment is to see the dermatologist and also think of pain relief. They asked me about trying Pregabalin which I have already tried and I was only put on 50 mgs and I had double vision, plus blurred vision I could barely see and I kept falling over. So, no way would I consider this or Gabapentin again. The only problem today was that she bandaged my left foot, as the dressings don't stick very well and by the time I got home, by ambulance it was even worse the pain and so I have had to removed the bandage and currently have my feet in freezer bags in my bowl of water. I know for sure that before long the pain will go!
I was just replying to the one above when the one came in about Penzance. Wow, great that certainly is a possibility as I could even get ambulance patient transport to take me there and it's NHS! Brilliant.
In fact looking at the link there is even out patient clinics at Treliske, Truro which is even nearer. I know it would be Penzance for treatment by the sounds of things. I did go to the pain clinic a few years ago when they said it was nerve damage, but as I have said before the tests showed only mild damage, but it might be small fibre nerve damage. They tried lidocaine patches, but my silly skin they just fell off after about half an hour! So, I don't even know whether they would have worked. Not only did the fall off they left all the sticky stuff on my feet and I had a real job cleaning it off.