Laser Workshops

[aangel]

We will be visiting the US at the end of January 2007 and offer workshops on the use of laser for lymphedema for any interested groups, including patient groups. There is no charge, but the workshop is sponsored by the company that manufactures the laser. The workshop covers the clinical trial data and practical use of the laser. Anyone interested in getting a group together is welcome to contact me.

Ann Angel

[tsegadesta]

Hello, which area in the US are you visiting? Thanks.

[suzeeq]

I know that the FDA just recently approved laser treatment for arm lymphedema due to breast cancer. Can you get treated with laser for leg lymphedema here in the US? I know the studies were done only on arms in Australia, but they are using it there for leg LE as well. How picky is the FDA? How come the US is behind on everything? Surgeries are being done for LE in Europe. Not that I want surgery. I actually looked into what was being done there, but still sounds too risky for me. Liposuction? That won't treat the underlying cause, it will only remove fat and fat cells. The lymph will build right back up again. So the laser treatment so far sounds very encouraging and non-invasive. Sign me up! Lol! My question too - where in the US are you coming to? Susan

[silkie]

Hi Susan

I do so agree with you . Laser is in its infancy

I missed a workshop in Glasgow Scotland.

I would have liked to have gone

But as you say clearing out would be great but it will not cure

the problem at sourse so I am with you. learn all you can

A few years ago debulking was supposed to be the wonder operation

Look what that has done to many of our lymphers that went thru it

Learn learn learn Research and keep on doing it and until YOU

with all the facts before you feel safe about any procedure

Don't take chances.

In the UK the government recently recommended Gastric Bypasses

on the NHS for the obese I have this vision of overweight people

some that like me were misdiagnosed for lymphedema and lipedema all their lives going thinking this is wonderful HOW WRONG

This procedure is dangerous terrible side effects it can also cause
Secondary lymph . along with so many other life long problems

I think the risk of more health worries to cosmetically make an ongoing condition look better is something I am not prepared to take

Huggggggggg
Silks xxxx

[patoco]

Hi Everyone

There is actually good evidence (clinically) for the laser being used in arm lymphedema. Very effective and safe for the removal of scar tissue in the lymphatics.

As of this date, there is no study of its effectives on leg lymphedema, although it has been used in Australia for years.

In my own situation, I originally had lymphedema from the malformation (or lack of formation) of some significant nodes in the inguinal regions.

However, the lymphedema has been greatly complicated and made worse from the scarring of cellulitis.

It is true that the laser is no cure for lymphers like me....but....consider the possible improvment if all the scar tissue could be removed and at least that impediment to lymph flow wouldn't be there.

From everything I have read and heard, I am actually kind of excited about the possibilities of this treatment modality.

Pat O

[eve alvirIII]

Suzeeq, Silkie and Patoco

I am very, very interested in laser surgery for my right leg lymphedema. I would even be willing to be a guinea pig. Did you get a private reply for the end-of January 2007 workshops to be held in the US?

Someone out there - please let me know where in the us can I find a surgeon to do laser surgery on a lymphedematous leg!!!!!!

[suzeeq]

Hi Eve, there hasn't been any reply from aangel about coming to the US in January. Count me in too. I would be very interested at least about hearing more about this. I gave what info I had to my LE therapist and hope that she will follow through. I have never had cellulitis so probably don't have scar tissue or damage as of yet, and wonder if laser would benefit me. I am starting to get some fibrosis in my ankle. Of course I have the skin thickening in my leg, mostly from the knee down. Pins and needles, numbness, achiness, burning - all are present. Wondering if laser would help these symptoms. Just recently found out that I don't have lymph nodes on the left side. Not sure if the doctor meant in my left leg or in my pelvic or abdominal area. I travelled 2000 miles to see this doctor so it's not like I can easily make another appt. and ask additional questions.

[eve alvirIII]

Hi SuzeeQ and Patoco,

Haven't heard about the venue of the January 31st and Feb. 1st workshop in New York. AAngel replied that these dates are fixed, but no one has gone on line to inform interested people as to WHERE the workshops are being held.

Please reply. Regards to all!

EveAlvir

[Minnie]

Hi all,

I was watching the local news last night and saw a story about a little boy with such swollen tonsils that he was told to have a tonsillectomy. His mom didn't want to go that route yet, so she took him to a holistic medicine place in my area and the doctor (not technically, I guess), treated him with a light beam generator. After the first treatment, his glands had already gotten smaller and his mother could see down his throat, where she couldn't before (they showed this on t.v.).

Well, I immediately got on the phone and spoke to the "doctor" and she said that she has treated two women with L.E. in their arms and both have seen remarkable results. One woman's arm and hand were so swollen that she couldn't write. After a treament (or two, I can't remember), she was able to write!

Today I got on this website (I haven't been here in a while) and now hear of the Laser Therapy Unit from Riancorp. I don't know if this is the same thing or not.

By the way, this clinic does acupuncture. My sister -in -law (in another state) is also an acupunturist (I would not let her touch my LE left leg!) also has some sort of laser machine, though she never used it on me.

Anyway, I have an appointment for 2/20 with this woman for my first treatment (unless anyone talks me out of it). I am 47 and have had LE in my left leg since I was 40 (off and on swelling 4 years before that). I have had 2 c-sections and a hysterectomy (2004), but that doesn't seem to have had any effect. I am not overweight and I walk 3 miles on my treadmill daily. I wear compression stockings 24 hours a day (2 while I walk) on my leg. It is under control (the swelling), but I sure would love to see it gone!

The woman also said that one of the women (the one who can now write) actually purchased one of these machines finally, because she wanted to be able to do it herself at home.

Any thoughts?

Debbie

[eve alvirIII]

Thank God someone answered or at least got another reaction to my search and quest of the LOW LEVEL LASER THERAPY. The workshop is supposed to be in New York tomorrow, January 31st and on Feb. 1st. I called and called several people at Rian corp. and they kept promising to let me know the venue, the time, etc. - NOTHING came.

Debbi - I'll send you a PM(private mail). Mine is robertalvir@yahoo.com. I'll share what I have researched on the laser therapy.

Bless you. Take care. You'll hear further from me.

Evelyn Alvir

[Jami]

i would love to hear more about this, i have quite a bit of fibrosis in my leg and the only optional treatment i knew for it was enzyme therapy and i'm not sure if that works.

sincerely,
jami

[eve alvirIII]

To Debbie and Jami,

AAngel kindly replied to my p-mail to inform me that the workshop in New York will be in late May of this year. They are presently in L.A. I will try to contact her tomorrow to find out if there are therapists/distributors or doctors who are now administering this FDA-approved laser therapy machine. Read up on Rian Corp. to find out what laser therapy is all about. It's very promising for our limb fibrosis, lymphedemous and painful arms and legs, even for swollen tonsils.

Eve

[eve alvirIII]

AAngel,

I thank you very much for letting me know about the end-of-May workshop in New York. I look forward to meeting you and finally getting a welcome means of treating lymphedema.

Question: Is there anyone in New York who has your laser machine and treating patients with it already? If not in New York, anywhere here in the East Coast?

Thanks.

Eve

[Minnie]

Eve, please keep me posted in what you learn! Hopefully we are going to find some success in treating our problem.

Debbie

[suzeeq]

Hi All, Anyone with info on this laser therapy - could you let all of us know as opposed to only emailing privately a few people? We are all interested. Thanks, Susan

[Minnie]

Sorry. Of course I meant to keep us all posted. Susan, why didn't the doctor give you specific info on the lack of your lymph nodes? Is there a reason you can't call the office if you have more questions? How did the doctor find out that you have no lymph nodes? Just curious.

Debbie

[suzeeq]

Hi Debbie, Thanks for your reply. About my lack of lymph nodes - I had a lymphoscintigraphy back in Sept. Then I had a consultation with the lymphedema specialist, Dr. Maryls Witte, who is apparently world renowned. You know how studies have shown that patients only hear about 30% of what is told to them during a doctor's visit? And probably even less if they are undressed, which I was! I was nervous, I don't know why, because the test was over. But I guess I was a little intimidated of her status, and the fact that I am a nurse and I wanted to sound intelligent and not ask a bunch of silly questions. I really don't remember her telling me at the time about not having any lymph nodes. I found that out when she sent a written report to my PCP, and a copy to me. Yes, I could call the office or email her, but I hate to bother anyone. And I don't think it matters if the nodes are lacking in my leg, or pelvic or abdominal area. Treatment will still be the same. I live in Ohio and doubt that I will be seeing her again. It's funny, I can be assertive when it comes to my patients, but if it's about me, I'm a wimp! She told me about the surgeries that were being done in Europe, but I am not convinced that they work. This laser therapy sounds the most promising, but I don't know how to get it. Plus the FDA only approved it for post mastectomy patients, and I have LE in my leg and buttock. I asked at the LE clinic that I go to, and they didn't know anything. Anyway, this is a long story. I appreciate your interest. Thanks, Susan

[Minnie]

That's too bad about your visit with that doctor, but I know how you feel, Susan. So many doctor visits I wish I had taken my husband or someone with me to hear thinkgs that I may have missed or ask questions I don't think of.

Well, the person I'm going to on the 20th is a holistic medical person and does acupuncture (which I am NOT getting), and she's doing the light beam generator. I'll keep you all posted on what goes on with that, and if it seems promising, maybe you can check with acupuncturists in your area to see if they have that machine. If you Google it, there is a little information about how it helps lymph problems.

Debbie

[eve alvirIII]

I'm re-copying this here (see below, as you may have missed it on the other forum topic. I didn't get any reaction from anyone, but I was thinking that this particular group may be interested.

-0-0-0-

February 15, 2007

Mr. Mark Knight
President
Biohorizon Medical, Inc.
1970 East Grand Avenue
Suite 370
El Segundo, CA. 90245

Dear Mr. Knight:

You were so kind as to give me a call some time ago when I left a message with Guillermo at your office inquiring about the Workshop in New York. I have since heard from Ann Angel of Rian Corporation that the scheduled workshop was postponed to end of May.

I am a suffering right leg lymphedema patient, with a very fibrotic foot. Daily (except Sundays) manual lymph drainage and brutal bandaging has been administered to me for six months now. I have considerably sized down my leg except for my foot. I have anxiously been reading and researching your newly FDA approved laser therapy. The thousands if not millions of LE sufferers would be profoundly grateful for something like laser treatment that would relieve us. I also sent emails all around (lymphedema forums and co-patients) asking as to who might be already giving this type of treatment here in the East Coast. If it is long in waiting I would consider flying to El Segundo to be treated.

Kindly inform me about a clinic, hospital or doctor who has your laser machine in New York or environ, including Canada. As for your end-of-May workshop, my lymphedema therapist, an acupuncturist, my internist and a friend rehab doctor are all interested in attending this workshop. If you wish, I can give their names to you for your health professional list.

Thank you so much for the attention you can give me.

Gratefully yours,

Evelyn Alvir
78-20 Springfield Blvd.
Oakland Gardens, NY 11364

[suzeeq]

Hi Evelyn, I just saw your letter to Mr. Knight of Biohorizon. Thanks for the follow up and your perserverance in trying to get information. It has opened my eyes that I need to become more assertive about my condition. I am the one that has to live with this, and no one else is going to research this for me. Every day, I still look at my leg in disbelief, wondering how in the world this happened to me! So, I am going to contact the specialist that I saw in Arizona, and ask her if she can give me any info on this laser therapy.And then I can ask her a couple of additional questions that I had. If she gets back to me, and if she has any relevant info for all of us, I will certainly post. Thanks, Susan

[eve alvirIII]

Susan...you're one in a huge vast crowd! No one seems to pay mind to this newly approved FDA gizmo. I will also keep searching and will keep this forum updated.

I just came across the story "Sara's experience" posted by the moderator, Pat Oconnor. It's well-worth the read. I just wonder how Sara is doing now. She had a nine-day laser therapy in Adelaide, South Australia. Look it up, it's entitled, "Lymphedema Laser Treatment - Sara's Experience."

Just joined the National Lymphedema Network for a tax-decutible fee of $35 which entitles one to a thoroughly interesting and informative newsletter, discounts on lymhedema-related medical items, discount at Patients' Summit (the next one will be held on Oct. 5-7, 2007 in Atlanta, Georgia. You can log on www.lymphnet.org.). The founder of the National Lymphedema Network is also a lymphedema sufferer - Saskia R.J. Thiadens. I'm also writing to her regarding laser therapy.

Good luck...try to keep well.

Eve

[Minnie]

Hi all,

I just went for my first Light Beam Generator treatment with a certified acupuncturist (the one I told you about on t.v.). She spent more than an hour with me using the machine. It was very relaxing. She was certain that this would be the answer to my prayers and thought that I would be able to get rid of my stockings. I wish I had been more optimistic, but I admit that I am skeptical, however much I hope this is the answer. Well, I didn't notice any difference yet, but I have had this problem for more seven years and, because I have swelling from my buttock to my toes, she wasn't sure where the blockage is to concentrate the machine on one area. She told me to go home without my stocking (I wear one 24/7) and do manual lymph massage. She gave me some capsules to take called SENG, a systemic formula for lymphogin. I have another appointment on Friday and then I will probably schedule another one. She said that I can pay $40 after that and come in and use the machine whenever I want if she isn't here. Today cost $l50. She was going to do a little acupunture (not on my leg), but didn't. She was very sweet and optimistic. I wish I could see some improvement. My stocking is back on.

[eve alvirIII]

Hi Minnie,

Thanks for the update on your treatment by an acupuncturist. Please keep us informed how well you're doing. As you know I've been in search of the laser therapy which may be an answer to lymphedema.

Eve

[Minnie]

Just to follow up, I have had another hour with the "therapist" and the LBG that first week. The following week I did 2 one hour sessions with the LBG by myself in her office. I have some puffiness under one of my eyes and she said it would help with that, so I spent about 30 minutes with one of the lights on my eyes (thinking that if I could see a difference on a small area, I might believe it could actually do something for my leg!)
Well, later that night, I though (excitedly!) that the puff had gone down on my eye - but the next day it was where it always is and I must have just imagined it. My leg has shown no improvement whatsoever.

I have found the LBG on a website that is called Quackery, and I really do think that's what it is. Tomorrow, Saturday, I am scheduled for two hours to use the machine by myself. I figured I would give it one more really good try, but I hate the fact that I am throwing away $80 more and I should really just take my family out to a nice dinner instead! I spent $120 the first two sessions and $40 for the following hours by myself, so after tomorrow that will be $400!

My advice - don't waste your money. As far as that Sara's story, she does mention that she got MLD massage after each laser treatment and it is possible that it was the massage that helped her. If you look at the website, and other literature about the LBG, it practically refers to it as a miracle worker and that you will see results immediately. Wouldn't you think that something that powerful would be on Oprah and all over the news! Not only that, but the one photo I have seen of a before and after photo is actually identical to one I saw years ago to prove the effectiveness of MLD, not the LBG! Where are the pictures for proof? Believe me, I want to find a cure, but I hate that those of us who are desperate are wasting money on hoaxes. As for the FDA approval, apparently they approve things as long as it is not dangerous for the patient, not based on whether it actually does what it says. I think the LBG is not dangerous; I think it is a joke. I am tempted to cancel my appointment tomorrow, but I think I really should give it the one more try just to confirm my point, but I'd rather be pleasantly surprised by a result!

Please tell me if you all try it and I want to hear whether you see any difference in your LE. Sorry this is so negative. Maybe after tomorrow I'll be able to report something more positive.

[eve alvirIII]

Thanks for the follow-up post Minnie. You're right about the LBG. Please don't go back wasting your money!!!! I also asked two new therapists I met and they truthfully told me of patients who've tried it and got no results.

What I'm after and haven't gotten an answer from Mr. Mark Knight is the low level cold laser therapy that is so successful in Australia. As the company person, AAngel indicated in the past, they're having a workshop in New York at the end of May. I intend to go and see what it is all about.

[Minnie]

Well, I'm off in about 10 minutes to the two hour session (I feel it's too late to cancel at this point), but keep us posted on your findings about the cold laser therapy machine.

Debbie

[Minnie]

Well, that was fun. Nothing like throwing away $80 and wasting two hours of my time. No miracles here.

[joanne johnson]

Hi Minnie,
I'm sorry that you didn't get any positive results from your treatment. I know it was expensive, time consuming most mostly disappointing. If you did not try it, you would not have found out that it didn't work. Now you don't need to second guess or have any regrets. I hope this makes you feel a little better.
We always hope that we are making the correct decisions and it's a learning experience for all of us. Hang in there!

[Donda]

Okay I hope I am posting to a group..I'm 42 female..like to accessorize..don't want lymphedema
I use a laser and have for several monhts..i did the research -read the double blind study, eamiled the company, met with the rep and the therapist from Australia..had it used on my big hard red leg and then..happily purchased one and use it at home....it keeps your leg from being rock hard....you can do it yourself..it's a level one laser...you can NOT injure anything...I have studied this for hours and am simply to tired to explain the process but it is FDA approved..even NASA uses laser and so do sports teams..don't be talked out of exploring this new and awesome technology....also..you should check out Poppy lane website and explore the dietary help it's simply logical to incoporate all the help that we can!
Please let me know that someone read this so i know I posted it correctly!

[patoco]

Hi Donda

Welcome , you did post to the group

I have read all the studies on the laser and even had a chance to chat with company reps at the NLN convention last Fall. I agree that this looks like a very promising tool that will be able to help.

That is one reason we have this lengthy discussion thread on it. I encouraged reps to participate here and am glad they have.

As for the dietary recommendations on Poppy Lane. I have read through all their recommendations extensively. Since I was an organic gardener at one time, my diet was loaded with all those foods they recommend.

While I agree that they are healthy foods overall, far too much research needs to be done (independent clinical studies) for me to say, yes, this is helpful for lymphedema.

My diet was saturated with good ebzopyrones, etc etc and frankly, it didn't stop my right leg going from transcient swelling to permenent swelling, nor did it stop my left leg from become a cement stump.

It also didn't prevent me from getting two b-cell lymphomas.

Their product Lympaction has done had any clinical studies either that backsup the claims for it.

I am reminded of a product that came out a number of years ago called coumarin. Highly endorsed in Australia it did show great promise in helping the swelling. It was quickly adopted and used all over the world for lymphedema. Then, suddenly people who had been using it started experiencing liver damage and failure. So much so that it is not used anymore. So here was a product, brought out for public use without proper clinical data as regards the safety factor. Too many people are paying a terrible price for this mistake.

So, a healthy diet is critical for over-all health, but none has been clinically shown to help lymphedema.

I also disagree with the Pulsed Magnetic Field Therapy, again show me the double-blind independent clinical studies to back up the claims.

Donda, we simply must do all we can to help ourselves, but at the same time we need to use discretion in the products and things we try. The world is awash with products claiming to do all kinds of things and the only way to be safe is to demand these studies as proof of what people claim.

Again, welcome to our forums! Look forward to getting to know you.

Pat O