Lasertherapy or micro-surgery options Please HELP!!!!

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Lasertherapy or micro-surgery options Please HELP!!!!

Postby LouiseS » Mon Sep 27, 2010 12:20 pm

Hi

I read about a dr in Australia that does laser therapy. Does that work? Then micro-surgery I heard is also very succesfull. Who is the best dr and does it show proven results? I am from South-Africa. I go to an occupational therapist,but in the month that I have known about her and tried to make an appointment I only saw her once. I didn't react well on the bandaging, my arm gets red, cracked and blotchy when it is taken off, my fingers swell even more and look like russians. I really don't know what else to do! Can somebody please help? :cry: :?: :cry: :?:

Regards
Louise
LouiseS
 
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Re: Lasertherapy or micro-surgery options Please HELP!!!!

Postby Cassie » Tue Sep 28, 2010 6:37 pm

Hello, Louise,
You sure do bring up some interesting topics! I read your post about your horse and how the gentle petting had helped your arm, and I have to say I'm intrigued with that. I have a dog, and I'll be paying attention to how interacting with him affects my lymphedema.

Lasers are a huge controversy in the lymphedema community. The doctor in Australia has unfortunately not done any decent studies, so we have little more than his word for the effectiveness of laser therapy. There are at least two studies about lymphedema and lasers that started recently in the U.S., but the results will not be available for a couple of years. The major one is headed by a therapist who is gung-ho in favor of lasers, and in communicating with her I'm sure not convinced that she'll be able to be objective about her results. She is also not looking specifically for safety issues, some of which may not be discovered for months or even years after treatment (for instance, there's anecdotal reports of laser treatment triggering radiation-induced brachial plexopathy in women who have been treated for breast cancer, but that can take a long time to get diagnosed). So, neither safety nor efficacy are established for laser use. There are a lot of enthusiastic laser users among lymphedema therapists and patients, but the long-term effectiveness varies a lot.

There are two types of micro-surgery currently being used. One links lymph vessels directly into tiny blood vessels to help drain some of the fluid from the arm. Reports from women who have had the procedure are that their arm improved some, but they still need to do MLD and wear compression garments. The doctor in the U.S. who is pioneering this surgery here is very clear that it is not a cure, but only helps in some cases. One known problem with it is that the pressure in the lymph system is much less than the pressure in the circulatory system, so connecting them sometimes creates a blockage when the lymph pressure can't overcome the blood pressure and enter the circulatory system.

The other type of micro-surgery being tried for lymphedema is node transplant. Nodes from the groin are harvested and placed in the underarm to replace missing or damaged nodes from cancer surgery. Again, there are no decent studies of the effectiveness or safety of this procedure. The biggest known danger would be the development of leg or abdominal/genital lymphedema because of removing nodes from the groin. One of the surgeons doing this procedure in the U.S. is currently conducting a study involving her transplant patients, but again the results won't be known for some time. I don't know how long-term her study will be, but as we're all aware not removal can result in lymphedema even many years later. What other problems this surgery might create remain unknown.

There's a lot of interest right now in the lymph system as people discover how greatly it impacts our body's functioning and health. So there's hope that new treatments will come out of all this interest, but at the moment everything you've mentioned here is still very experimental, and the results of both laser and micro-surgery very mixed. I wish there were better news on all this. Maybe some day!

Currently the standard treatment is Complete Decongestive Therapy, which involves consistent treatment with a therapist. Like you, I had trouble with bandaging. I'm compression sensitive, and after the first time wrapping my therapist realized that and wrapped looser, which certainly has helped with my arm. The cracking sounds bad! Good lotion generously applied might help with that. It does take our skin awhile to get used to all this! You might try chatting with the therapist and working out how the two of you can get together on this. Once the swelling is reduced and you have the skills you need to take care of yourself, you'll be able to take back control of your life.

Please keep us posted!
Gentle hugs,
Cassie
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Re: Lasertherapy or micro-surgery options Please HELP!!!!

Postby LouiseS » Wed Sep 29, 2010 1:07 pm

Hi Cassie

Thank you so much for all that info! I went today again for the bandaging (morning), but I took it off now it is 19h00 here now. It was so sore again and the other problem is that I am developing behind my collarbone a pocket of fluid and it gradually got worse as the day went on. I must honestly say now I am not in a good state of mind! I told my husband I am going to stop all therapy (I am an pediatric occupational therapist myself), it does not work and I must just carry on with my swollen arm. I don't know what else to do! I have 4 young kids and I don't know if it is because I am busy with them that the pain is more!

I don't know what to do, tomorrow I will just go and visit my horse!

Thanks again

Kind regards
Louise :(
LouiseS
 
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Re: Lasertherapy or micro-surgery options Please HELP!!!!

Postby Cassie » Wed Sep 29, 2010 1:37 pm

Aw, Louise, I'm so sorry! I hear your frustration with this. Please don't give up! The swelling of your arm is not all that's going on with lymphedema. Lymph fluid is high in protein, so when it sits in your arm and is not moved out with Manual Lymph Drainage and compression, the protein molecules irritate the tissues and cause chronic inflammation. That in turn causes fibrosis to form, which permanently hardens the tissue and further blocks lymph flow. Eventually it compromises the skin and there is leakage through the pores of caustic lymph fluid, which results in both non-healing, weeping sores and an even higher infection risk. Even early lymphedema like you have is a higher infection risk because of the warm, protein-rich lymph fluid that is present throughout the tissues, and treatment will lower that risk.

There's so much to learn! But you're already an OT, and that will give you some help. You can learn to do the Manual Lymph Drainage yourself, and you can learn to wrap your arm yourself or purchase one of the adjustable non-elastic garments (FarrowWrap, Circaid) to help you get the swelling under control. That's not ideal, but it's better than nothing, and with your training should be doable. There are books and videos that can help you when you don't have access to a well-trained lymphedema therapist. But first check around and see if there are other therapists within range of you who might be better able to treat you.

While you wait for help, consider wearing a sports shirt (like UnderArmor), one size smaller than you'd normally wear and turned inside out so the seams don't irritate your skin. An Isotoner therapeutic glove can help protect your hand until you can get better help. Elevate your arm whenever possible (on the back of the couch when you're reading or watching TV, on pillows at night), stay VERY WELL hydrated (it helps dilute the lymph fluid), and stop from time to time to raise your arm and slowly pump the fist, and to take several deep abdominal breaths (that stimulates the thoracic duct, the largest lymph vessel in our bodies). Avoid extreme temperatures (even in bath or shower, and when washing dishes -- I use a long-handled scrub brush to keep my hand out of the water). Keep your skin well moisturized and be very careful of any skin breaks. Handling small kids is a hazard, for sure! :D Use good body mechanics and always lift with both hands so you're not putting undue strain on your affected arm.

You can do this, Louise! It matters -- YOU matter!
Cassie
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Re: Lasertherapy or micro-surgery options Please HELP!!!!

Postby LouiseS » Tue Oct 05, 2010 3:22 pm

Thanks so much! The therapist cancelled again today for therapy on me! I have just had it! There is not one dr I can turn to in SA nobody knows anything about lymphedema! :cry:
LouiseS
 
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Joined: Sun Aug 08, 2010 1:18 pm

Re: Lasertherapy or micro-surgery options Please HELP!!!!

Postby Cassie » Tue Oct 05, 2010 4:46 pm

Louise, the Lymphoedema Association of Australia lists therapists in South Africa. You might email any or all of them and ask for help in finding someone reliable. I sure can understand your frustration but would just hate for you to give up now!

Here's their list:
Jennifer Blenkinsop, OTR/L, CLT, Ashford Home, 39 Ashford Road, Parkwood 2193, Johannesburg, South Africa
tel: +27-11-783-2806 (from outside S.A.) or 052-828-7024 (from inside SA)

Mrs Imelda Burton, 52 Elm Avenue, Wentworth, Durban, 4052, South Africa; Ph/Fax: (031) 4686260


Aileen Goodenough
P.O. Box 255
Howick
South Africa
3290

Tel & Fax (+27)(0) 33 3302855
E-mail azgoodenough@polka.co.za



Elaine Greenblatt, 87 Zonda Avenue, Victory Park, Johannesburg, South Africa, 2195;
Ph: (011) 782 5448; Fax: (011) 782 8497, e-mail: docmike@infonet.co.za

Carolyn Hoffman Cape Town Phone: 27-21-531-4565 Fax: 27-21-531-4564 Email: massage@plasticsurgeryunit.co.za

Mrs. Isla Muhl, Wynberg Hosp., PO Box 18171, Wynberg, Cape Town, South Africa 7824;
Ph: (021) 799-3000; Fax: (021) 799-3111

Sue Serebro
Johannesburg
Gauteng, South Africa
Tel: 27 (11) 4471815 (W)
Tel: 27824100051 (Mob)
Email: kriklerserebro@icon.co.za



Warm hugs!
Cassie
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