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rpowell01

Anybody tried this yet?

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http://www.neurolumen.com/

 

Go to website and watch the videos. The lady who created this was originally for her daughter. Its a device that will help with pain such as in the legs and back due to nerve issues. It has some sort of laser with it along with electrodes. Its not a TENS unit. It reads that medicare has not approved this yet but its my understanding the VA has it by reading elsewhere on the internet. The person who wrote a review said that James A. Haley has it so I ask my VA PCP about it to see why I was not offered this yet.

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Hmm... I am skeptical, but if it is stupid, but works, then it's not stupid. :smile: Like you, I am willing to try almost anything to address my chronic pain, but on face value, this may actually be nothing more than a glorified TENS unit (per the "How it works" page).

Also, the FDA is after them:
http://www.fda.gov/ICECI/EnforcementActions/WarningLetters/2014/ucm399933.htm

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I would guess that this company'' NEUROLUMEN''  Will provide the 'examples'' the FDA Requires if this is a legitimate!

sounds good to me.

 

......Buck.

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Its my understanding that they were on TWO different maybe three different TV shows but I don't watch these medical shows. It now my understanding that ALL TENS units are actually hurting people more than helping them. Correct?

Also I read somewhere that this guy was lent one for 30 days as a trial before he bought it. The price tag on this thing is way over $1k. Also to watch the video on why it was created stuns me. Her daughter could not walk and after creating this she was able to walk. Her daughter is like most of us with all this DDD/DJD stuff.

I am still waiting on my VA PCP to respond and I will let you know what he says or does. I even asked him to see if they would just lend it to me just to see if it worked. If it works then I will ask to be given one. I am willing to try anything right now because the VA hasn't done crap for me. The last time any specialist touched me for my back issues was around mid 2013. Yes you heard it, mid 2013. My VA PCP refuses to do anything because Pain Management released me back to him. Yes I had all the PT and Epidurals from the VA to no avail. I even went as far to spending way TOO MUCH $$$$ on facet blocks in my lumbar spine and my mid back to no avail either. Don't get me wrong the pain in my left buttocks has went away, but I still have a lot of pain every single day below my left knee in my calves, feet and toes which is from PolyNeuropathy. Keep in mind I am not diabetic whatsoever.  The Neurologist who conducted the latest EMG where I got my facet blocks told me this is why I have loss of sensation in my shins, feet and toes. Heck I don't know when ants bites me until its way, way too late and I severely pay for it. Those ant bites takes weeks to heal. My right buttock is in severe pain as I write this right now. I still have pain in my whole right leg. 

So, the nerve in the left leg has healed but the chronic radiculopathy that has been inflamed for too long has caused this PolyNeuropathy. If anybody doesn't know about this the nerve walls begin to deteriorate so there is no healing nor cure for it and its caused by one of many things but like my Neurologist said to me whenever he did the EMG, the chronic radiculopathy, the constant pressing on the nerve roots  at L5-S1 was inflamed that bad and whenever nobody did any treatment on this this is what caused it. I still have CHRONIC RIGHT L5-S1 Radiculopathy.

Dr. Bash told me months before I had my first EMG that if the VA did not do anything I would be in a wheel chair. My VA PCP keeps saying I won't. HELLO!!! Who am I to believe? Dr. Bash of course because he diagnosed everything months before I threatened my VA PCP with a Senator inquiry for not setting up testing such as EMG.

Anyway sorry for the long spill, I don't get to get on here that much anymore because of the pain. Heck I don't things I loved doing such as playing my audio keyboard that I have played for 20 years. I haven't played that in months. Geez time is flying..

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Heh rpowel, long time no blog.  I am sorry to hear that you are having these issues.  I have had similar situations.  Frankly, I would not advice doing those OTC, non medical devices, I think if you ask anyone most people have had problems with those infomercial type products.  I managed to get lucky and my private insurance issued me a Intensity IF combo unit.  You can get one for 75 bucks.  It will feel funny at first.  I like the IF function better than the TENS but some people like it the other way. Personally I alternate between the modes.

I use still but I alternate with ice, heat, pain medication, Butrans, oxycodone, VA pain cream, VA capsicum pain cream, acupuncture, trigger point, facet blocks, medial branch blolcks, rhizotomies and so forth.  A combination of a few with alternating patterns helps quite a bit.

I am reluctant to let the VA cut on me, so I have contacted a highly respected surgeon here in OK.j Best in the state who happens to take my insurance.  The other is a place called North American Spine,  I am looking into them but they are a commercial business  out of Dallas, which i'm still leary about.  However, I am looking at many options and seeing which if any have a high success rate in having a better quality of life.

The 15 mg of oxycotton per day with the Butrans is of some help the first few days and tapers off until you replace the patch.  I understand why the docs do the pill count every visit.  

I also looked up some the info on this.  It's in Oklahoma, say "whatcha talking bout Willis"  I 've seen the permanent stim modules with long electrodes and a small outside transmitter, however, nothing like this.   It might be worth to take a "look see"

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I have not tried acupuncture yet. I have found that if I pay for a good massage, it tends to help for a few days. VA PT clinic will not do any form of massage, no matter how much I have asked. Like rpowell, I too have been failed by the VA pain clinic. Ironically, I don't understand why his PCP will not issue a TENS unit. My PCP issued me one a few years ago and it does provide a moderate level of temporary relief, but the VA is stingy on the electrodes and only issues one set per month. Like ArNG11, I also am skeptical about non FDA-approved devices. I do understand trying to pursue any path which could provide relief, but worry about them just being snake oil.

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Well today I awoke feeling pretty darn good. Compared to yesterday where I could barely sit or even lay on my back because of the pain in my right buttock. Funny how the nerves work. Last week I was in pain for a week in a half, worst ever so far. It felt like a constant crap in my calves then this past Saturday I awoke and boom no pain in my calves.

Anyway I wanted to see if I had hyperalgesia and waited all day up to about 1:30 to see if the pain would start. It didn't. So I took a pain pill and still no pain. If a person had hyperalgesia syndrome caused by the pain meds they would for example; wake up in NO pain if they were having a good day but within a few hours they would start feeling pain or if they woke up NOT in pain but took a pain pill then began to be in pain then that is most likely hyperalgesia caused by the pain meds. Pain meds CAN cause pain sensitivity to increase. I use to be able to deal with pain. Example: one day back in the late 90s I had to go to the ER to get some sutures put in my hand. I told the MD I didn't want any local anesthesia so he didn't use any. Yes it was painful but I was able to deal with the pain. So I had a very high tolerance to pain. Pain meds can increase this when taking them long term. I said "can". Not everybody gets Hyperalgesia so your best bet would be to test yourself to see if you have it. If you do you might want to lower your daily dose of pain meds. I am testing it now and decided if I am not in pain then I won't take any pain meds except of course I have to take the Gabapentin because I get sick as a dog when I miss a dose of that stuff since I am on 3600mg a day.

 

As for the device the only way to get FDA approval for devices like this is to try them. Heck do you know 90% of the drugs on the market really hasn't been tested on humans even though they are FDA approved? Look how many drugs that are FDA approved killed millions of people so far because they were never really tested. This is the game of pharmaceutical corporations. They make billions and settle for millions in lawsuits so in turn they still make billions.

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