Update regarding cold laser therapy
Comments
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Well, I just lost my long post, so starting over ...
I'm interested in following you all in the quest for the laser ... mind another hanger-on-er? I am (I believe) stage 1 and very frustrated with my journey thus far with LD treatment
... the laser sounds like something I coud pursue, beyond the stretching and the self-massage and the hated sleeve. Thanks~~
gayle
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Gayle, the more the merrier! I do believe we might be onto something very good. Tonight I went to the hospital's medical records dept. and signed a release so my records could be sent to BioHorizon. I guess they need documentation to try to convince the insurance company. I'm into hurry up and wait. I just hope the insurance company doesn't try to mess around with this. I do have all the requirements for medical equipment at home. But I have little faith in the good intentions of insurance companies these days, so I won't count my chickens.
If you go to BioHorizon's website you can get a list of all of the facilities in the US currently using their low level laser.
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There's no facilities close to me. What would I do next?
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I would call BioHorizons toll free number and tell them where you are located and ask if they know of anything close to you. If you have research energy, I noticed that there are other companies who are now selling the low level laser for LE purposes. Now that there is provisional FDA approval, I guess any number of companies can get in on it. It's possible that they would have lists of places using their product and maybe there would be something close to you. Here's hoping!
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The reason I rented (and then bought) the laser is because no facility around where I live used one.
I am very very interested in whether biohorizon succeeds in getting insurance coverage. Do keep us posted!
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KS1, I know I am going to be in hurry up and wait mode here, but today I had a message from BioHorizon asking for the name of my recommending physician. So I provided that (gave them the name of my onc). I can feel this is going to be a slow and tedious process...
I will definitely update as information trickles in!
Trisha
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Also keeping an eye on your progress
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I have decided to pursue this mode of therapy. I begin next week w/a 3x/week for 3 weeks protocal. I spoke w/the PT that I trained w/that also uses the laser on some of her patients. She has been a lymphedema therapist for 18 years now. She said they use it on some of their patients that are stabilized or that did not get great results from the standard of care (MLD, wrapping) and that they have seen a success rate parallel to that of the study the company did: 30% saw marked improvement, 30% some minor improvement and 30% saw no change. She also reiterated that the motto for PT and lymphedema treatment is: first do no harm. In this she states that the laser by Riancorp has not been shown to do harm. SO, I figure nothing lost if I at least TRY this. I have to drive an hour each way to get to the therapist that actually uses this device (and I live in a large metropolitan area), but again, I want to try it. Will keep you all up on my results... Fingers crossed and lots of positive vibes please!
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Sending you best wishes that the low level laser helps you, Nordy! The Rian LLL helped my LE.
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Thank you! I start next week...
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Well I told you it would be hurry up and wait - but at least it's in process. I received an email from BioHorizon this morning telling me that they had submitted all of the paperwork and were waiting to see whether my insurance company would okay it. I know that it took a while for the hospital to send them the records, so that was part of the hold up.
Fingers crossed and thrilled to see that Nordy is giving it a try!!! I sure would love to have it for home use, but if that falls through and I have to go every six months for a tune-up, then I will. Not that I recommend the lazy way of life for everyone, but I haven't used my sleeve at all and my arm is just fine. If it does swell - and I am not talking about big swelling - it goes down as quickly.
I'm sold!
Is there a way we can get notification if posts are added to this thread? I don't always think to look and don't want to miss anything.
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from another post:
Tina337 wrote:
Saw my LANA certified/Vodder trained LE therapist on Wednesday. I asked her opinion about using the laser. Her answer was "no", specifically because there are no empirical studies that prove it works.
There are more certified therapists who do not and will not use the laser than those who use it. And it is not a do it at home without supervision treatment..
Buyer beware!
Ever since we had Ann Angel posting here as a "shill" for Rian Corp.,and how wonderful the laser was (when we wrote to Rian, we got a letter back signed by Ann Angel as an officer of Rian Corp.,) lets all do our due dilligence and research before touting this treatment as safe and proven effective.
For newbies and readers, please read this entire thread from start to finish.
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Oh I definitely intend to be trained on how to use it. I would never consider it for home use without thorough training. You are likely right that fewer therapists use it than don't but the fact that the Vodder School is now training its therpists in its use is certainly a good sign. I was also impressed that the doctor who responded to Kira said it didn't appear to do any harm. It isn't for everyone. And not all hospitals/centers are trained in its use. I don't want to sound entirely skeptical but I would think that if one of the centers I used to go do did not have it and I asked about it, they might not give a resounding vote of approval.
The only thing I can vouch for is what its done for me. Nothing more, nothing less. It is certainly an individual decision.
Be well. I will continue to update.
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Just to clarify, the question and answer from Kathleen Francis was from LymphLinks, the newsletter of the National Lymphedema Network--and she said it appears to do no harm, but know that it was approved with no real study, through the 510(K) process.
A nationally renowned LE therapist wrote to me that she would never use it, because there have been absolutely no studies on whether women who have it used on them have more cancer recurrence, and Rian says not to use it over the axilla if metastatic cancer is present, and this PT cited that 10% of SNB are false negatives.
The studies have been too small and only measured sizes of arms, with short follow up periods. No one has studied brachial plexus injuries, cancer recurrence.
As Jane said, buyer beware.
Nordy's therapist said that 30% have great benefit, 30% little and 30% none. But that's just looking at swelling.
It is an individual decision, but "doing no harm"--well the studies haven't been done to really prove that.
I also posted a link to Andrea Cheville's review of the research, and she does a great job of summarizing how few and how small and how inadequate the studies of the laser have been. This is also from the NLN
An Assessment of the Role of Low-Level Laser Therapy in the Treatment of LymphedemaBy Jeffery R. Basford MD, PhD and Andrea L. Cheville MD, MSLight has been used to treat disease since the dawn of time. Nevertheless, its popularity has fluctuated over the years. Early use, such as that recorded by the Greeks and Romans, emphasized its thermal effects and, as recently as the early 1900's, the Nobel Prize in Physics was awarded for the use of the ultraviolet portion of the light spectrum in the treatment of tuberculosis. Subsequent improvements in medical care, however, led to a gradual decline and near extinction of interest in the therapeutic use of light.The invention of the laser (Light Amplification by Stimulated Emission of Radiation) in the early 1960's led to a new attention to light's non-thermal capabilities and a reversal of this trend. At the heart of this interest was the belief that specific wavelength of light (i.e. colors) at intensities too low to increase a tissue's temperature more than a few tenth's of a degree can alter cellular and tissue activities. Initial work began in Eastern Europe and focused on the treatment of non-healing wounds.The next few decades saw a rapid expansion of interest and a variety of names applied to the approach. Although terms such as Biostimulation, Cold Laser and Low Intensity Laser have been used, nowadays, Low Level Laser Therapy (LLLT) is the most generally accepted term.Scientific Background and SupportAs noted above, LLLT involves the application of low powers and energies of laser irradiation to tissue with the goal of producing benefits by non-destructively altering cellular or tissue function. Early lasers were gas-filled devices (e.g., helium and neon, krypton and argon), but by the 1980s these instruments began to be replaced with cheaper and easier to use superluminous diodes. Today, diode use prevails and with the exception of some helium-neon lasers, most "laser treatments" are in reality performed with individual or groups of Gallium-Arsenide (GaAs) and Gallium-Aluminium-Arsenide (GaAlAs) diodes.While laser and diode radiation might have therapeutic benefits, the conditions most likely to respond and the extent of these benefits remain areas of active investigation. The answer to the first question, why these devices may have benefits, is now generally accepted to be that as their radiation is purer (in other words has a narrower bandwidth) than light from other sources, it is more capable of producing wavelength-dependent resonant frequency interactions with cell organelles such as the mitochondria. There is also a general, but not universal, acceptance that multiple treatments are necessary, that the treated tissue must be under stress, and the energies involved in treatment should be low (between 1-4 J/cm2). Most devices, in fact, are relatively low-powered and have outputs between 30 and 500 mW (power). Treatment typically is delivered at multiple sites with the laser applicator in contact with the skin, or in a noncontact approach in which the beam is scanned over the area to be treated. While attention may be placed on waveform of a device's output, evidence supporting the benefits of a specific pattern of pulsing over a simple continuous wave is limited.Safety and BenefitsLLLT, by definition, involves low amounts of energy and no risk of thermal injury. While some have raised the thought that stimulation could accelerate cancer growth, this issue remains theoretical. As a result, safety concerns related to LLLT are low and adverse effect reports rare. In fact, an attractive aspect of LLLT is that treatment does not raise tissue temperature significantly. Therefore, LLLT can be used during the acute stages of an injury or in conditions for which heat might be expected to worsen swelling or inflammation.Soft tissue and musculoskeletal injuries have proven particularly intriguing as these sites tend to be superficial and LLLT is claimed to have both analgesic and tissue healing effects. Laboratory studies support the concept that LLLT can increase collagen production, alter DNA synthesis, reduce the expression of inflammatory markers, and enhance the function of damaged muscles and nerves. Extension of these effects to animals and humans has proven more difficult to establish. Although many investigations find benefits from LLLT in a variety of musculoskeletal, arthritic, soft tissue, and painful conditions, differences in their designs, parameter choices, and subject populations make it difficult for systematic and meta-analytic studies to confirm LLLT's clinical benefits. Fortunately, study designs are improving and the existence of a growing number of larger, well-designed studies may change the current situation. Similarly, a frequent lack of a head-to-head comparison with alternative treatments such as ultrasound and massage often complicates assessment of clinical utility.LymphedemaLymphedema, at first blush, might not appear to be particularly amenable to LLLT, given past emphasis on its use to promote healing and to alleviate musculoskeletal dysfunction and pain. Nevertheless, while still in its early days, the idea that LLLT might be beneficial may not be far-fetched, given its documented effects on processes as diverse as protein and prostaglandin synthesis, cell membrane transport, inflammation and intracellular metabolism. In fact, a number of investigators have reported reductions in swelling and improved comfort following treatment. As is true for LLLT in general, the initial studies, while intriguing, are too small and frequently too poorly designed to do more than suggest benefits. Subsequent work has been marked by improving designs and while the amount of research completed is still limited, it is worthwhile to review its strengths and weaknesses.For example, a recent study by Kozanoglu and colleagues reports on 47 women with post-mastectomy edema following modified radical mastectomies and axillary dissections. Subjects were randomized to receive either twenty 2-hour sessions of pneumatic compression therapy or twelve 20-minute sessions of LLLT over the antecubital fossa and axilla with a 904nm infrared pulsed Ga-As laser device over a four-week period. All subjects received a home program of daily exercise, range of motion and skin care. The investigators found that while both groups showed significant improvements in their limb circumferences following treatment, those improvements in the LLLT group tended to be larger and more prolonged in the study's impressively long, 1-year follow-up period. No significant inter-group differences were noted in terms of pain relief or grip strength.Carati and colleagues reported in 2003 on a rather complex trial in which 61 women with breast cancer-related arm lymphedema were divided into groups receiving either nine sessions of pulsed 904 nm irradiation at 17 sites along the axilla over a 3-week period, or an identical placebo treatment with an inactive device. At the end of this trial, a second experiment was performed comparing the relative benefits of one versus two courses of radiation.Interesting and Related FindingsThe investigators reported two interesting and related findings: while a single course of treatment had no effect on their subjects' lymphedema, two courses did; and the benefits became noticeable at follow-up one month after the completion of treatment. No effects on range of motion were noted.Kaviani and colleagues reported in 2006 on a small double-blind controlled trial in which 11 women with post mastectomy lymphedema were assigned to either receive 890 nm radiation over the axilla and arm from a GaAs laser device or identical treatment with a sham device. Evaluation of the eight who completed the treatment over a 22-week period revealed improvement in both groups. The authors noted the improvements tended to be more pronounced in subjects treated with the active device. The authors concluded that their results were encouraging but that further research was needed.Piller and Thelander provide two reports of a group of 10 women with post-mastectomy lymphedema who underwent an uncontrolled 10-week trial involving sixteen treatments with a laser which was scanned over the treated area rather than held at a number of fixed positions. Evaluation at the end of treatment revealed a roughly 20% reduction in volume, as measured by limb circumference. Follow-up of seven of these subjects indicated by self-assessment that their limb volume improvements persisted.White and colleagues recently published an abstract describing a randomized trial that compared LLLT to "standard care" for the initial treatment of breast cancer-related lymphedema. The 148 participants received either two weeks of LLLT or decongestive therapy. A statistically significant reduction in arm circumference relative to the control group was noted after LLLT in participants with mild but not moderate lymphedema. It should be noted that while the results are intriguing, conclusions and generalization are limited, as bandages were not worn between therapy sessions in the decongestive group and details about the nature of LLLT were not provided in this preliminary report.SummaryThis paper has provided an overview of LLLT and the relevance of its research findings to lymphedema. A number of observations are possible. The first is that the evidence supporting the use of LLLT in its initial areas of pain and musculoskeletal applications is promising, but still limited by heterogeneity in study designs (with studies characterized by small sample size with limited follow-up in many cases), irradiation and outcome measures. The second is that the study of the application of LLLT to lymphedema is following a pattern similar to that of LLLT as a whole: small, uncontrolled studies (e.g., Piller and Thelander) followed by larger and better designed trials such as that by Carati and colleagues. The results are encouraging, but the pool of evidence is limited and further work by multiple investigators, as well as more comparisons with alternative treatments, is needed before the benefits of LLLT for lymphedema can be accepted comfortably as established. Further, how or whether LLLT should be integrated in conventional complex decongestive therapy (CDT) remains uncertain. Until rigorous trials permit therapeutic comparison of CDT and LLLT, patients should be informed that LLLT does not eliminate their need for phase II CDT maintenance treatments.http://www.lymphnet.org/newsletter/articles.htm#Vol21No4
Kira
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Again Kira, the Vodder School is now using it. I won't post endlessly about it since I think we both know where the other stands. As you can see from reading here, there are people who are going for it and people who won't go anywhere near it. For those who don't I certainly understand their caution. In terms of effectiveness, I am one of the lucky ones who has gotten the swelling under control and don't need additional maintenance treatments. I will continue going forward using it (I feel some comfort that the hospital I go to is associated with Brown University Medical School and they feel comfortable enough to have the LE clinic use it.)
I will also keep my fingers crossed that no future harm comes to me as a result. But then I also kept my fingers crossed when I was in a trial for herceptin that no future harm would come to me. Some of us are willing to be the guinea pigs in the hopes that it has some benefit for others. That way of life isn't for everyone.
Be well.
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Trisha, Vodder is selling it, and at Vodder recertifications they let Rian market it--it doesn't translate to all Vodder therapists using it: my Vodder certified therapist wouldn't touch it. Tina's Vodder certified therapist wouldn't touch it either.
The two other LE clinics in RI that are also at Brown affiliated teaching hospitals do not use the laser.
As I'm on the faculty of the medical school and sit on committees there: I am well aware that Brown affiliated simply means that medical students, residents and fellows are taught at those hospitals.
There is no physical therapy training program at Brown.
I was seen at a Harvard afiliated LE clinic at MGH, and they won't use it.
You're right, we could argue this forever, which is pointless.
Kira
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I've got a great idea. Since I started this thread and there are some of us here who are still interested in using the laser, despite your extremely lengthy and repetitive admonitions every time we try to post about it, why not start your own thread about the reasons NOT to use the laser? That way those of us interested in continuing with it can talk about it in peace. I promise I won't come onto your thread and try to convince people to use it.
Thanks!
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So for those interested in still discussing the possible use of low level laser, I still consider it huge that Vodder would even consider using it and allow their therapists to train on how to use it. Something like this, that was just given provisional FDA certifcation not that long ago, naturally isn't going to be in universal use a short while later. And in this economy, not all centers are going to have the money to put out to get it, even if they wanted to. Not saying everyone wants to.
So obviously while there are some therapists that won't go anywhere near it, so are there those very willing to. I personally sought out someone who was using it in therapy.
I'll keep you posted on the insurance part of it.
Nordy, keep us posted on your treatment!
Trisha
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Hi All, I called BioHorizon Medical trying to locate a clinic in my area for cold laser treatment of my LE. I was passed around to a few different people and finally left a message on someones voice mail. I haven't had any response(this was last week). I was wondering if anyone has a name and phone # of someone that might be able to help me??? Thanks!
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Here's the person I dealt with:
Mark Knight
BioHorizon
1970 East Grand Avenue, Suite 370
El Segundo, CA 90245
Off 310-321-5830 x203
Fax 310-321-5428 -
Thanks KS! This is probably the same Mark-I left a message on his voice mail. Never received a callback so I will try once again and also send an e-mail! Thanks again! Katiejane
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Bump for Malatete
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Well, I just wanted to post on this since I said I was going to do it... and I did. I did 3x/week for 3 weeks, then off for about 4 weeks as I had stage 2 of my reconstruction, then back for 3x/week for 3 weeks. I wish I could say that it helped.
I don't think it did a thing... maybe and this is a big maybe, it might have helped lessen some of my fibrotic tissue on my forearm. But, on a positive note, it certainly didn't make things worse. So, I am out some $$, but I chalk it up to being the guinea pig for us all... I wish I could report good results, but I guess I am in that 3rd of people that don't see really any change. I wish I did... Hats off to those who do. In between treatments (during that time off) I thought it seemed a bit less... and the measurements were down, but after surgery and the second round of things, there was really no change. Having said that, my arm did not swell nearly as much as normal with surgery, so maybe it really did help a little? I don't know, I am too on the fence on this one to give it a high thumbs up. I know some people have great results... I just was not one of them. -
Nordy, thank you for taking the time to share your experience. I know I've come off as the anti-laser voice on this thread, but what I really want is good studies, so we know more about it.
There was a recent study released from Univ. of Pittsburgh, on 17 women--their total experience with it in three years. It's getting a lot of press in certain LE circles, and I can't help but wish that there were more women studied, and a longer follow up. There were almost more authors on the study than subjects.
I hope the day will come when the laser has been studied enough for us to know how it works, when it works and who should use it.
The more we honestly share with each other, the more we learn.
Thanks.
Kira
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Hello everyone. I'm new to this board. I developed lymphedema in my left arm when I was undergoing chemotherapy. It is pretty much under control with the use of daytime compression and (sometime use) of a Reid Sleeve readymade at night. I have been interested in the Rian Corp laser for about a year, but could not find a therapist in my area who was using the device, and it is too pricy for me at this time. I was researching the use of LED light for healing (a different medical problem, LOL!). It appears that there is little, if any, difference in LED vs laser for healing - it's the wavelength that matters. There are many positive NASA studies on the use of LEDs in healing. 880nm infrared LED devices are available for $125 or less - this seems closest to the 904nm Rian Corp laser wavelength. There are also 660nm wavelength devices available also, a wavelength that has been shown to promote skin healing, but that might not penetrate deep enough to affect the lymph system and to soften fibrosis. Has anyone tried one of these LED devices for lymphedema?
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I researched various treatments, found several lasers. I've tried 904 and 830. They worked for me. There is a lot of research on lots of different lasers for other conditions and many of those studies highlight the effect of the lasers on the lymph system even when the condition treated was muscular or skeletal. I convinced my doctor husband I should try it and sometimes I think he's more enthusiastic than I am. My LE arm is about 4-5% volume bigger than my other one; my hand is slightly puffy - I think because I wore my sleeve so assiduously and the glove did not help; I have some small LE patches on my breast remnant but all my scars are now soft and I have full range of movement, no pain. I have never had cellulitis. The lasers are very safe: I snuck on a training course for healthcare professionals and was very reassured. I am glad I found the lasers and even more that I was fortunate enough to afford treatment. I wish they were available to more LE sufferers.
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Lymphcontrol, I'm so happy that you've gained good control of your lymphdema. But I wonder if you've actually read all of this thread. The fact is that laser treatment for post-breast cancer lymphedema has not been proven to be safe at all. There are studies underway at present, but the evidence just isn't there yet. And while there are anecdotal accounts of good results with laser use, such as yours, there are also anecdotal accounts of damaging results from their use in this circumstance, so the jury's still out.
What concerns me almost as much, though, is that your website is one that sells lasers, so your interest in being here and posting this information is questionable, and even borders on violation of our board rules. Should you care to join us here as a fellow lymphedema veteran of course you'd be more than welcome. But hawking your unproven brand of lymphedema treatment to vulnerable women, for your own profit, isn't likely to go over very well.
Be well!
Binney -
From your website:
Lymph Control has been appointed UK distributors of the Riancorp LTU-904, the Australian hand held laser that has helped many sufferers to regain control over their lymphoedema.
Lymph Control Offices Lymph Control was set up in 2008 by wife and husband team Sarah and Joseph Blackburn.
One of our most prominent national experts, Andrea Cheville, has extensively researched the laser, and sees no evidence that it is effective, and/or safe.
You are actually violating the rules of our board, as you're promoting a product you sell.
Kira
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Firstly let me start by saying that I own Riancorp. The company that manufactures the laser. I dont want to push the product, just clear up some factual information.
Firstly, as far as FDA is concerned, the laser is safe and effective. There were some earlier blogs about the FDA510k process that were actually incorrect. FDA did review all of our research information. It was the review and question asking that took 4 years. FDA asked for considerable additional information, including additional statistical information. Remember that FDA has cleared many low level laser products for a range of conditions, so FDA has reviewed many applications regarding LLLT safety.
The comment that there has been anecdotal reports of damage from LLLT have not been officially reported to us (the manufactuere) or FDA. I did read a blog reporting of damage, but it was not from the Riancorp device, but from a heat generating light device that is not FDA released for lymphedema. There are several companies promoting various laser and light devices for lymphedema that technically are acting outside FDA regulations. Its important that individuals are given corrrect information.
There have also been several new clinical trials regarding laser for lymphedema released in 2010. I am happy to post the abstracts, but I dont want to step over the "promotion" line.
Ann Angel
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Dear Kira and Binney,
I am sorry that you consider my post violated your rules. As it was removed immediately after I posted it and my account was suspended for a week or so, I doubt that many people could have seen what I said to decide for themselves - possibly only the person who objected. I could not even reply. Not even my diagnosis remained visible - I too have been through the hell of cancer treatments, lymphoedema and clinical depression. This experience on thie site was very hurtful and not in the spirit of sisterly support I have found on my local L/O and BC websites even where people did not agree wth me.
I hope you are caring enough to allow this posting to remain visible. I wish I had saved the earlier one.
I was inspired to add my single comment by what seemed to me amazingly hostile postings on this web site about a treatment I have found effective for myself. Its safety is accepted by the authorities in Europe where I live. I thought I was being careful to express my own personal positive experience with low level laser treatment - something that happened before I started to import a product difficult to access in my country. As it happens I don't run the site or import the product to make a profit. I live in a country where most medical care is free at the point of delivery and to profit from the suffering of others is considered immoral by most of us. And if I had wanted to covertly promote a product I would not have used the userid I have chosen for here.
What we need as L/O sufferers is access to a wide range of information about treatments and as much evidence as can be gathered about how they work, their safety, effectiveness and importantly too, people's personal experiences with them.
Please be a little more open-minded.
Sarah
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