I’m Bob, I have been DIAGNOSED with Trigeminal Neuralgia (TN1).
I have had marvelous healthcare professionals, of whom I would not necessarily recommend for YOUR treatment.
Massachusetts General Hospital, Dartmouth Hitchcock Medical Center, well, they did not offer FINANCING, not did they tell me THAT I NEEDED THEM. They never showed me TESTIMONIALS, nor did they tell me THAT THEY HAD AN A_M_A_Z_I_N_G_ INVENTION.
SCAMMERS have popped up on my radar! The likes of "Laser Med Center", yes, "You Can Google It!"...
My mission is to get a Denial of Service for these (expletive deleted) and all other (expletive deleted) PREYING upon people with ANY Disease/Disorder.
My best to all, bob
Note to Self: See if ANYONE HERE (((Hugs))) would like to add comments about these SCAMMERS on any Social Network that WE (((Hugs))) are on.; )
They are the lowest of the lowest scum who take advantage of people when they are ill. They know you will do anything and pay more than you can afford, if you think there is the smallest chance of a cure. They are many in the NHS here in England that do not know enough about our condition, and just push us to one side. You get to a certain age here in England and you do not seem to be important anymore, ( well that’s how I feel ). My New Year’s resolution should be. To think positive and not to let people put me down. Not to trust people as much as I have done in the past. My pain is real, why should I feel ashamed to be taking the doctors time. This network has given me so much, company understanding and friends. Also courage . Margaret.
“Wow”, just “wow”…this thread leaves me speechless! Stephanie, you go girl! I would never trust a technology that is explained in such obtuse jargon as to be uninterpretable…all procedures should be explained to patients in the most acessible language possible. I would not get something done if I didn’t understand it. But there are plenty of desperately hurting people who are so intimidated by obtuse language that they don’t question it, and spend their precious funds in an attempt to halt the pain.
How low is that?
Lily
Perhaps a dose of TN might do Mr Roger Porter good, he might whine a little then. Motto for today Keep calm. Your great Stefanie I like a person with guts. Love Margaret Stefanie said:
Why, yes, Bob, I WOULD like to add comments about the scammers that have been trying to entice TN patients, on several of our support networks, with claims of "immediate relief" with their "amazing new inventions."
Of course, Laser Med Center, in particular, has no medical evidence, or backing from ANY neurologists or neurosurgeons that can provide evidence that their "soothing blue laser light" is anything but a marketing scam.
Interestingly, after I spoke out against Laser Med Center and the false testimonials that were popping up all over the TN websites, I received several messages from Roger Porter, owner of laser Med Center. He also claims to be the amazing engineer that created the machine that will heal TN, along with 50+ other illnesses.
He markets this machine under two names. Curealase, which is the same as Laser Med Center, both in the same office. The Curaelase website states that his magical laser will cure everything from bad hips to diabetes, and Laser Med Center, which preys on those of us with TN. Below I am attaching the correspondence that I had with Roger Porter, copied and pasted exactly as it was written from my facebook messages. I will be interested in the reaction of my fellow TN'ers as to Roger's view of what "useless whiners" we all are, as victims of this disease. Although I believe he intended on offending me, what I got from it was simply disgust at his ignorance, and a chuckle at what an absolute $%^** this man is:
Roger Porter November 30 at 6:37pm Report Hi Stefanie, It sounds like you need us very badly. Someone has given you false information on Laser Med Center. What do you have to loose? Don't give up. Give us a call and let us help you. Roger Porter
Stefanie Wozniak November 30 at 8:11pm Sure! How about YOU pay for my plane ticket and cure-all laser sessions? I'll gladly fly there. You can shine your amazing light on my head! You know, the light that miraculously cures 50+ disease with ONE light, right? Then I can fly home and write my own testimonial about what a sad person one must be to try to bilk money out of people who are suffering tremendously. Sorry, I'm not at all short of funds, but I'd rather put my money in a shredder than to hand it over to a snake oil salesman. No Thanks!
Roger Porter December 1 at 9:55pm Report Are you really a rude, crude,socially unacceptable, spoiled, [expletive deleted] or is this a plea for help of a helpless,desperate person? Or a you just a useless whiner like all the rest of your pathetic TN group? In either case you are sadly ignorant of our technology. I feel sorry for you. I hope you find peace in this life or the next.
You really have done some work on this. He really is the lowest of the low, and all other people out there who try to make money out of other people suffering. There is a lot of people on this site who have cause to be grateful to you. This must have taken hours all the research you have done. TN is a horrible condition and sufferers do get desperate, I myself would try anything if I thought it would take away the pain. Thanks Stefanie. Margaret
“…except those who have YET to try it.” A powerful statement, Sir.
You have been with us for some time, your Profile doesn’t mention a definitive diagnosis, has that changed?
I am grateful that I have had healthcare insurance, and saddened that so many others don’t.
As I stated, “Massachusetts General Hospital, Dartmouth Hitchcock Medical Center, well, they did not offer FINANCING, nor did they tell me THAT I NEEDED THEM. They never showed me TESTIMONIALS, nor did they tell me THAT THEY HAD AN A_M_A_Z_I_N_G_ INVENTION.”
Please keep us updated. BTW - How much do they charge for their services? Take good care, bob
here is what richard porter said to a member on the forum when she denied his offer:
Roger Porter December 1 at 9:55pm Report Are you really a rude, crude,socially unacceptable, spoiled, bitch or is this a plea for help of a helpless,desperate person? Or a you just a useless whiner like all the rest of your pathetic TN group?In either case you are sadly ignorant of our technology. I feel sorry for you. I hope you find peace in this life or the next.
does that narrative really build a sense of trust for you?
if you are not a shill for robert porter, you're about to get bilked out of $5K.
To paraphrase, this is Roger Porter's Laser Med Center:
After treating over 3,000 patients, 30,000 treatments in the CuraeLase clinics, we have recognized distinct patterns of improvement. The conditions include arthritis (osteo and degenerative), neuropathic and musculoskeletal."
I have no idea what his weasel words mean, though I understand disclaimers...here is Roger Porter's:
"*While most people respond very well, some people may require additional treatment."
I understand he offers financing, perhaps through "Curalease"?
It isn't funny, unless you Google "roger porter laser med center", many searches can get a person to stop to think, or at least stop in on our site:)
Bob has valid points. One should be prudently suspicious of any technique such as that advocated by the Laser Med Center, which does not have a Medicare procedure code and cannot be billed to medical insurance. Be even more suspicious when the only evidence offered for the technique are stories told (presumably) by patients on a website. FYI all, this socalled "Curalase" appears to have only the weakest form of US FDA certification: it is believed to be safe. Not effective, only safe.
There is a large body of literature on various studies attempting to use laser illumination to promote healing in torn muscles, tendons, broken bones, etc. Unlike TENS (Transcutaceous Electrical Nerve Stimulation) machines, however, it appears that very few of these "studies" meet even the most basic criteria of evidence based medicine and random-controlled trials (RCT). Likewise, the last time I wandered through the Laser Med Center website, I didn't see any specific references to named studies -- only general statements that there are a lot of studies, some of which appear promising but none of which were actually done specifically for Trigeminal Neuralgia.
The procedure won't hurt you. But even if it does involve daily appointments for a couple of weeks, there is a pertinent question: would you pay a doctor $5,000 to apply a common light bulb to the rear of your skull for half an hour for ten days? Because that may turn out to be pretty much what all of this hype and hoopla amounts to. Low-power blue-green lasers can be purchased on the open market for less than $1,000 dollars. So it's not a matter of recovering their investment.
Wes, you are a pastor, not a doctor. Thus your reports of your own positive experience are certainly welcome, but you are simply not qualified to advocate any treatment as "the best" treatment for TN or even an effective treatment for other patients. And you are most definitely over the top if you publicly accuse anyone of having a personal vendetta with a named individual practitioner. That can be read as libel.
To the best of my ability to determine, you are talking about a procedure that is not reimbursable under medical insurance (did your insurance provide coverage?), and which the FDA has found "safe" without registering any finding at all concerning its effectiveness. I have found no randomized double-blind trials on so-called Curalase in a serious search of medical and online literature. If you know of such trials, I want to hear more about them.
These things being said, I urge you to edit your posting and delete accusations of bad faith toward people who do not agree with your conclusions. If you do not do so, I will ask the site owners to remove your posting as SPAM.
My earlier input is still pertinent, and might even be read as a gentle "do unto others" admonition.
You are not a doctor, Pastor. You are not qualified to call *any* treatment the "best" available,though you are welcome to report your own positive results in a more limited context. However, let's correct a mis-impression, please. Trials have nothing to do with "handing over the technology to others". And without them, one is stuck with anecdotal reports, which are the weakest and least reliable form of medical evidence, often cherry-picked and manipulated by the less scrupulous among the so-called "alternative medicine" advocates. I point out that the primary support for "treatments" such as Laertril was individual anecdotal reports. Though TN is not a fatal disorder (however horrid it truly is!), that record of patient harm should be taken as a serious cautionary example.
So I encourage you to edit your previous posting to remove accusations of bad faith or bias on the part of Vespers. Such accusations are simply not appropriate.
Your statement that you have the right to express your opinion is valid to a point. This is a private support group network and we have certain policies that must be adhered to. One of these policies is the Lasermed Center, their Director and all references to their treatments and "cures" have been BANNED from our groups for quite a while.
I have deleted all your postings concerning this center, their treatments and so-called success rates and "testimonials". Any further reference to this center and your treatment progress will result in your membership being suspended.
Our policies are established and not subject to negotiation.
Sure wish I had of found this site and read about this place before they scammed me out of $5,700, not to mention the cost of the trip there and back. I am very angry and bitter about the whole thing. The finance company is a joke you get a year of free interest then it goes up to almost 30 percent. A hard lesson learned for me, pain makes us do stupid things and there will always be someone there to take advantage of people like us. If anyone is thinking about going to this place, don't. If you have any questions about it please feel free to ask. I got to meet Mr. Porter and spoke with him personally the day of my last treatment. Pretty amazing to say the least....
Sure wish I had of found this site and read about this place before they scammed me out of $5,700, not to mention the cost of the trip there and back. I am very angry and bitter about the whole thing. The finance company is a joke you get a year of free interest then it goes up to almost 30 percent. A hard lesson learned for me, pain makes us do stupid things and there will always be someone there to take advantage of people like us. If anyone is thinking about going to this place, don't. If you have any questions about it please feel free to ask. I got to meet Mr. Porter and spoke with him personally the day of my last treatment. Pretty amazing to say the least....
Donnatn15 I am so sorry that you went through all of that. I am currently looking into a similar treatment out in Texas. did you not get any relief from the pain? I am nervous about spending all that money for no relief.
No, no effects at all, sorry to say. The place in Texas if it's in Houston may be the franchise that one lady started. I have been in touch with a lady I met on FB. She went to LM the first time with no results then the place in Texas with no results either. Alot of money wasted on both. Please be careful.
glad I saw this thread… I so wanted to hope, but as a nurse I have to admit i noticed there was no evidence, no studies no reference articles etc. now i wonder if what i saw may have been a few paid actors. so thank you for warnings
A note for Kacee: from the reading I've done over 17 years, I've seen no support for your assertion that "laser therapy works for a lot of people." At present, there are no published double-blind randomized trials (that I've found, at any rate). Low Level Laser Light illumination is certified as "safe" by the FDA, but not as "effective". There is no Medicare insurance billing code for the procedure
Moreover, I've talked with at least two people who went through a procedure at one of the centers who claim to be able to cure TN, and came out the other side with no improvement at all. When these people filed complaints with consumer fraud agencies and the Better Business Bureau, the inventor of the procedure -- who happens to be an engineer, not a physician -- and a doctor affiliated with him in the practice refused to refund over $5,000 that she had paid, and instead threatened to sue for damaging his reputation. We've also seen some highly abusive behavior here at LwTN from people who tried to use the site as a SPAM outlet on behalf of one of the centers.
On balance, I personally think the technique and the people who use it are phony as a three dollar bill.
Thank you for posting the (supposed) pros and the cons. Those of us that are new to this forum and/or seeking help could be drawn in to these wonderful sounding ads. As someone else said - we are seeking all the help we can find and are so easily sucked into the hype of a "cure". Am I discouraged??? No. This is what God has given me and I accept His judgement that I can handle it. Can the pain get worse? Possibly, but I'll do the best I can with His help.
If this personal message is not allowed on here would someone please let me know. Thank you.