The rian laser/what do we really know about it?

kira66715

I posted this on the brachial plexopathy thread, but wanted to create a new thread. I recently went to a new LE clinic and they use the laser on all of their patients. I asked to see the medical literature to support it: and it's just the one study of 61 women, treated with either one or two courses, and there was a 33% improvement in the women who got the two treatments--but they were only followed for 3 months. If you do a pubmed search, Dr. Piller wrote an article back in 1998 about following women for 2.5 years, but they only had modest improvements. 

In an interview article with the other author of the paper that got the rian laser FDA approval, the doctor said how the laser works is "a mystery". The article is : Laser MAY reduce lymphedema

http://www.annieappleseedproject.org/lastoredswel.html 

It is approved by the FDA as a level two device, which means any reporting of side effects is voluntary. When drugs come to market, they're tested on about two thousand patients, and then if they're popular, a few million use them, and the side effects start to manifest--like vioxx, fen-phen, some of the quinolone antibiotics, seldane, baychol, avandia--just to name a few favorites from recent years.

Personally, I am not comfortable having someone use a device on me where the mechanism is a mystery, and no long term follow up studies exist.

The FDA has a way for consumers to report problems, and it's private and easy

http://www.fda.gov/medwatch/how.htm

So, on the boards we have posts from Trisha who is thrilled with the laser, and others who have bought it and really like it, and a post from a woman who feels it may have caused brachial plexopathy.

It worries me, because LE in general has few options and of course we're going to want to try something that holds the promise of a lasting improvement.

So, I just wanted to state my concerns--and I don't want to discredit the laser, because I don't have enough information to judge it. But I'd love to hear what people have experienced.

Kira 

neat

You requested posts about personal experiences with the Rian low level laser. I began using it about 15 months ago.

The low level laser (LTU-904 cold therapeutic laser) has made a huge positive difference in my life.

Since beginning the laser treatments, I have significantly less discomfort from my post-mastectomy lymphedema, my swelling is reduced, I get many fewer infections in my finger tips (which had been a frequent and repeated problem), and a relatively hard part in my forearm became soft and much much smaller. The low level laser has definitely improved my quality of life. I am incredibly more comfortable with my pain diminished. I credit the laser with much of my improvement in the past 15 months.

Best wishes for good health!

kira66715

Neat, thank you--because there are only two small studies out there, the only real knowledge we have is each other's experiences. 

The studies appeared to be done on women who had significant LE: they measured at least 200 ml larger in the arm.

I'm glad its working for you and you're improving.

Kira 

neat

Kira, 

My LE, although bilateral and widespread (bilateral hands, arms, truncal, plus some swelling in lower body), was not huge. I never had radiation nor chemo.

The LLL made it so my LE is hardly visibly noticeable to others. The LLL decreased my pain and discomfort. Before the LLL, I had frequent fingertip infections, but now I very rarely get finger infections, which to me indicates an improvement in my health and bodily function.

Because my body build is on the small side of normal, most of my LLL treatments were done with the LLL on the low setting, instead of high, which I think was helpful for me. Given the big effect that the low setting had on me, I think that the high setting would have been too much for my body, but each person's body is different.

I am still careful with my diet, exercise, activities and other things to keep my LE in check, but the LLL is what seemed to help me the most. The LLL made a threshold difference that gave me my quality of life back.

Best wishes!

kira66715

Neat, I discussed the laser with the OT today, and we decided to hold off for now, but reserve the right to use it in the future.

  This is off point, but a couple of us here with LE that are "smaller" than normal and have compared notes, and I personally think it makes it harder to treat us. I lost a fair amount of weight and there's just no padding, so my initial bandaging was nearly impossible to tolerate, and I had to develop an ability to tolerate compression.

  It's great to hear a success story.

Kira 

neat

Kira,

Your observation about small patients being harder to treat is interesting. Like you, I had some trouble being lean without much padding.

As mentioned above, we also adjusted my laser treatments due to my size, which worked out well for me and I think helped the laser be such a success for me.

Glad that you enjoyed hearing my success story. We LE patients can use encouragement and I hope that my drastic improvements are encouraging for you

Best wishes for good health!

HappyTrisha

I never realized that the studies were conducted on women who had significant LE.  That makes it all the more impressive to me.  My LE is definitely considered mild - well when I had LE showing, it was considered mild. 

People always have to operate within their own comfort level.  And we are not all the same.  I am someone who will always eagerly seek out the latest treatment if there is a chance it can help me.  I believe I first read about the low-level laser treatment on this forum.  Thank you to the sister who first wrote about it.   Those of us who are having positive results come and talk about them not to blow our own horns but to try to be helpful and encourage others.  My quality of life is not affected by whether or not anyone here chooses to avail themselves of the treatment.  I take the time out of my life to come here to try to help others.  No other reason. 

kira66715

Trisha, as you said, we all operate at our own comfort levels--I'm someone who likes to see data and understand mechanism--but I realize the studies were done on 60 women, and there must be thousands more out there who have used it, but no one is publishing it in the medical literature. I wrote to the physicians in Australia to get more data, but there just isn't any.

  So, who do I check with? The women who used it.

  Personally, I'd love to see a long term study, with more women and then I'd be reassured. The OT at the clinic discussed it with me, and we decided to hold off for now--but reserve the right to use it in the future.

  It's great that it helped you and that you share. I just wish the company that made it would follow the patients and share also, so that patients like me, who need reassurance, could be reassured.

  You're not blowing your horn, IMO, you're sharing a success story.

  I'm just very, very cautious--and scared--and you're right, we all have our own level of comfort. The more I hear good stories, the more it increases my comfort level.

Kira 

HappyTrisha

Kira, what I did the first time I heard about it was went right to Google.  I think it is critical to do as much research on things as we can.  I guess I was lucky enough to find some anectdotal information and stories that really made me feel excited about the possibilities.  Then I checked into it more through sisters here who had used it (with success); at that point I called the person they recommended at the company that got the original distributions right.  When I found out it was FDA approved for LE, I was ready to give it a try.  Though I am not the most cautious person in the world, I definitely was not comfortable using it at home, they way some sisters were doing.  So when I called Biohorizons they told me about people in my area who were using it to treat.  Then I was off to the races!

kira66715

Trisha, I work in medicine, and we teach "evidence based medicine" which kind of discounts clinical experience (not always the wisest thing....) 

I did research the world literature on it, and unfortunately, there's not much--and the company told me that they have no plans to do further research or document follow up.

So, when there's not much medical evidence, you've got to go with clinical experience.

I'm so glad it's worked for you and so many other women--one of the problems of working in medicine is that I've seen so many pendulum swings--promising new technology that doesn't pan out when finally scrutinized, new drugs that turn out to be disasters--so I WANT DATA--and it's just not going to happen here.

So, hearing from other women is so helpful.

It's early for me--my surgery was 5/08, and I developed lots of axillary webs a week later and a bug bite caused my hand to swell the next week, and that's what I've been fighting for the last 5 months. They did assess my "affected" arm at the clinic--and it's 7% smaller than the other side (it shrunk??) but they all agree that my axilla is still a mess of scar tissue--so that's what the therapist is working on.

Anectdotal information is what we need here. (What I need.) Thanks for sharing.

I wish all the therapists who use it would generate reports of how women are doing....

Kira 

HappyTrisha

Kira, my understanding from my LE therapist is that the laser is most effective on that scar tissue!  There are all kinds of LE therapists.  I am thrilled with mine but that's probably because she is very liberal in her approach - meaning that she doesn't INSIST on a particular type of treatment if it isn't going to be part of a patient's routine.  Another hospital close by insisted that I wrap like the michelin tire man daily and was married to manual therapy.  The therapist had been doing LE therapy for a long while and was associated with a very good hospital.  But then he also didn't believe in the compression pump and I'm sure he didn't know about the laser since his name wasn't mentioned to me by the people at Biohorizons.  I think I am trying to say that there are LE therapists and there are LE therapists. 

 I certainly understand everything you are saying though.  It is really tough without direct medical evidence and major and extensive studies.

kira66715

Trisha, I know what you mean--we live in the same state, and I've made the rounds of all the LE clinics in the state, and even went up to Mass General for a consult this week--she was really helpful.

Rian wrote me that they do not intend to ever do further studies of the laser. That's just too bad.

I did get some personal correspondence from a therapist in another state, who met with a physician with extensive laser experience, and that person said lasers shouldn't be used within 6 months of radiation. (I'm about 2 months out...) Rian has no contra-indications--but intuitively that restriction makes sense to me.

FYI: the Mass General PT, knew of therapists who used the laser, but didn't think it was appropriate for me. At this point.

This is what I heard from Rian when I asked for data:

Attached please find what additional studies I can offer you. The clinical study you refer to is the best science to date on this device/modality. LLLT has been used for years outside of the US , but as you know, most the rest of the world operates without as much focus on rigorous clinical studies. The manufacture is in Australia and they have no plans for further clinical studies.

Well, we learn from each other, and I can only hope that clinics in the US who use it will follow women and report on their experiences.

Kira 

HappyTrisha

Kira, gotcha.  Now I remember.  Okay you have all the information you need in terms of our instate people.  The other thing about your radiation - I would definitely hold off then.  I guess I wasn't aware, or didn't remember, that you had just finished rads recently.  Now it's all making sense, including the possibility that you will look at it futher on down the road.

Good luck.

Snomis1

Google can be a great source of information.  It can also be difficult to navigate due to the large quantity of junk and commercial interests.  When doing a google search for medical information, a suggestion to limit the seach to medically relevant research data is to use the site "google.com/scholar".  Starting here will help you find medically relevant data much quicker.  

Good Luck 

carol57

Snomis1, That is a very useful tip!  Thank you!

kira66715

Ironically, Happy Tricia's LE therapist is in my Klose class and we spoke about the laser and she's not impressed with it at all.



So, it's been 4 years since they got it and offered it to me, and they don't really use it, and the head of the Vodder school, who uses Neil Pillar as a consult,isn't convinced that the laser is of any value...he sent me literature on it.



Kira, 33% a CLT