Living with lymphedema in the USA

[debles1]

Is there not any drugs or surgery offered in the USA for lymphedema. The compression method does not work for me. It is hard to wear some shirts. I have had lymphedema in my right arm since 2008.

[Lynora]

Hi debles1 - you may find more information and contact info via the US forums such as:

lymphnet.org

lymphedemapeople.com

clt-lana.org

lymphedematreatmentact.org

There are a few US users on this forum but mainly UK residents, where the LSN is based.

[CCT67]

Hi there, Sadly there are no drugs yet that target Lymphoedema and reduce symptom however in 2017 drug trials started in the US and Australia and will continue in the UK in 2018. Hopefully the drug being trialled (Ubenimex) will be the answer we’re all hoping for! If you google Ubenimex and Stanford University you will find info on the trial.

There are 3 surgeries devised for LE however these are not curative. When successful they reduce some symptoms depending on the person, type of surgery and location on the body (as LE can be anywhere not only arms). The outcomes of the surgeries vary and they are specialist, not widely available across the US, nor covered by most US insurance companies.

The surgeries are SAPL, LVA, snd VLNT which stand for

Suction Assisted Protein Lipectomy

Lymphaticovenous Anastomosis

Vascularised Lymph Node Transfer

If you have secondary LE you may want to research LVA which has had some good outcomes research however I personally know people who’ve had it, very mixed results. Dr Granzow in LA is a highly regarded LVA surgeon by many lymphies,, but before any experimental surgery it’s imperative to do loads of research.

In the meantime, if you can access regular MLD from a Certified Lymphedema Therapist/CLT that would be the best way to manage your symptoms, along with Simple Lymphatic Drainage/SLD you can do yourself. Some upper extremity lymphies find Reflexology Lymphatic Drainage/RLD very helpful to manage symptoms. RLD trained therapists are not widely available in the US, depends on your location.

We all hope a curative or effective drug to manage symptoms is discovered very soon. If Ubenimex does prove effective in the current trials it will be a few years before widely available but at least it’s something to hope for. Take care

[Rebec in reply to CCT67]

I'm sorry but I find it hard to understand how a medicine is able to replace the functions of our removed lymph nodes!

[CCT67 in reply to Rebec]

It does not replac the functions or removed nodes, it counteracts the oedema and cellular changes that take place in the skin (which results in disfigured limbs).

[lymphite]

I had LVA on my left arm 11 months after my cancer surgery and 8 months after radiation to my left chest and underarm. My Lymphedema want from 8% larger than my other arm using daily massage and all day compression sleeve to 3% larger doing nothing and using the arm normally with no restrictions.

I live in Los Angeles and have left arm lymphedema from breast surgery with sentinel lymph node dissection and radiation. My lymphedema became apparent at about 6 months after surgery. I was desperate to find a way get my arm to look normal and researched extensively. I really educated myself about what lymphedema is and how it progresses. I also tried to learn about control of it which was very frustrating because there is so much variety in each individual person’s disease.

When I saw the surgeries in my research I was very excited and I began hoping to be able to stabilize or reduce my arm to normal. I found there are quite a few places in the US that offer the various surgeries. Seattle, MD Anderson in Houston, Boston, New York, New Jersey, Orlando, University of Chicago, USC Keck in Los Angeles, University of Iowa, and Dr. Granzow in Los Angeles. I called Dr. Granzow’s office because I live in Los Angeles and was told he doesn't see Medicare patients. I told them that I had Aetna with my job that was my primary insurance and the still wouldn’t give me an appointment for consultation so I called Dr. Chen in Iowa and Dr. Chang in Chicago as Well as MD Anderson. Dr. Chen and Dr. Chang have staff that answer the phone and can give information on how to be an out of state patient.

Around this time I had the serendipitous opportunity to go to Chicago for work so I arranged a consultation with Dr. Chang. He made it so clear to me that good management tries to balance the amount of fluid that gets into the tissues with the amount that is carried out and that surgery only aids in the removal process by sending some out in the small veins (LVA) or adding more lymph nodes to replace the ones that were lost (VLNT). He said everyone is different but the great majority see some benefit and a large number see very good results. He said the surgery doesn’t cure the lymphedema it just is one tool to help with management. It was an ahah moment for me. I decided to have the LVA and that even if it only helped a small amount it would be worth it. For that matter if it didn’t help at all I would still be glad I tried and the likelyhood of it causing and harm was minuscule.

If you want to learn about the surgical options there is a lot on youtube. Also Oxford Lymphedema Practice has a wonderful website with very good explanations of the surgeries and the factors that affect outcome. They have several patient stories. I believe Orlando Lymphedema has a good website too.

I decided that if I was a candidate for LVA I would have it even if I had to pay for it myself. Fortunately my insurance agreed to cover it. Dr Chang said they usually don’t have trouble getting authorization. I went to Dr. Chang at the University of Chicago because of the videos I saw from him on youtube and his long years of experience. He was one of their first to offer it in the US after it was developed in Japan.

I was unsure at first because the surgeries were out there but the opinion on them was mixed. And no one was shouting from the rooftops either good or bad after having one. I finally came to the conclusion that the reason was two fold. First there was a similar surgery before that was not done using microscopic vessels and the common perception was already formed so people didn’t look at the difference in outcomes with the new techniques as compared to the older surgeries. Second there really so few being done because of the specialized training needed that there weren’t enough surgeries done to change perception. That was last spring and I can see now there is more information online from actual patients. I feel an obligation to offer more about it to help others because my outcome was so good but I don’t want to give people false hope because each person’s disease state is unique.

Before my surgery seeing a certified tharapist for MLD and doing self massage had brought it down slightly but the improvement had leveled off and it would start to grow again if I was up without compression for even an hour. Good luck with your search.

Nikki

[Rebec in reply to lymphite]

So, how does your arm look now, after the surgery? I'm not inclined to think about having such a surgery because it's a too delicate procedure. I might think again if I went to Japan!

[lymphite in reply to Rebec]

Sorry, I didn’t realize this question was from you. See my post below

[debles1 in reply to lymphite]

thanks for the info

[carrie_2018 in reply to lymphite]

Can you let me know your insurance company in us who covered the lva surgery please? I’ve had this done in oxford out of pocket as insurance refused on the grounds that it’s not covered in the USA and I’m fighting them on it and finding it hard to find any company to direct them to that does cover this. Thank you in advance BTW my surgery was a success as far as I’m concerned .

[lymphite in reply to carrie_2018]

HI Carrie. I was using my employers insurance provided by Aetna/blue shield. When employers buy insurance for their employees they can pick different levels of coverage from the same company so I don't know if having Aetna would always guarantee coverage. dr. Chang's office is very familiar with the process of getting approval and I believe some surgeons might be better at it than others.

Since then I have been in communication with a woman who said the surgeon that does LVA and LNT at USC, Dr. Patel, told here that since she wanted to retire she should retire first and medicare covers the surgeries.

[carrie_2018 in reply to lymphite]

Thank you so much, my insurance is also through work and my cover is fairly good, it covers treatments abroad that are not done here ) Ireland , but they have come back saying blue shield in the us does not cover this and quoted a document published in January from blue shield saying it’s experimental and not proven . I have a case with ombudsman for reimbursement but need proof of any other insurers that have definitely covered the surgery.

[Snaomi]

Hi Debles 1. I live in California. I have has lymphedema since 2004. My legs. The left being much larger than the right. I am on Medicare and have another true secondary insurance. I went to Dr. Granzow for the SAPL surgery. Medicare does NOT pay bit I had decided I would pay out of pocket. Dr. Granzow is awesome. He is very good at what he does and very compassionate. It has been a year on the 23rd of this month and my leg is great. I am planning to do the right leg soon. I am very happy with the outcome but also very diligent in the care of my leg and wearing the support gose. The support hoses are so much easier to wear when your leg is smaller. Hope this helps you some. Take care and God bless.

[debles1 in reply to Snaomi]

thanks for the info

[lymphite]

Debles1

It has been 7 months and my arm looks normal. I am 5’9” with long thin arms and 67 years old. I can wear all my clothes again, I can work in the garden lifting digging and trimming without any problem, I flew a 3 hour flight without compression. Nothing has caused even the slightest swelling. The incisions are all very hard to find except one.

One thing that got me was the research that showed lymphedema is triggered by damage to the lymph system. The body responds by lining the vessels with T cells which are attack cells. They have the effect of slowing the muscles in the lymph vessels so they don’t contract as rapidly. This causes the lymph to back up and puts pressure on the walls of the vessels which causes more inflamation, scaring and finally stopping of all pumping in that area which spreads the inflamation and so on. When the fluid in the lymph vessels doesn’t move more can’t get in so it is left in the tissues where it is caustic to the calls so the body ties to protect the area by laying down fibrosis and fat.

They can test to see if you are a candidate by checking the function of your lymph vessels with and ICG study. If you have no functioning vessels to connect to the veins, there is Lymoh node transfer. And if your arm is already large from fibrosis the suction assisted protien lipectomy can return it to normal size and then garments keep it there. It then will bend and fit into clothes.

I was so frightened of letting this happen to my arm. It wasn’t that much larger but it didn’t go to normal either. I couldn’t see the muscles and veins. The skin was smooth and firm like on a child. I have old arms with fine wrinkles and flabbiness. The flab on the upper arm was very thick and I could feel it swing from the heaviness. I thought if there was another way out for the fluid there wouldn’t be a spread of the inflamation and damage. The incisions are a little over an inch long ai think and 1/4 inch deep. I have 5 sites.

I don’t think lack of expertise of American doctors would be a reason not to have surgery. They are trained recontstructive surgeons and are doing these for a while. Dr. Chang does about 170 per year I heard. He and Dr. Chen train other doctors and have written a book. Dr. Chang has been doing this more than 10 years.

Nikki

[debles1 in reply to lymphite]

thanks for the info

[Rebec in reply to lymphite]

Hi Nikki,

I think that this reply is meant for me too. I trust American doctors (all the members of my family who practise medicine live in ....the States!!) I was just thinking that Japanese surgeons will have more delicate fingers which will help but not that they are professionally better. At the same time, it makes sense that the surgeons will use instruments and not be holding the delicate lymph vessels by hand! The other worry is that this operation involves piercing some veins to attach the lymph vessels and that the connection might come "undone"! Maybe I worry too much. Have you met many women who have had this operation for a number of years?

I hope you'l continue to enjoy being lymphoedema free forever and be able to be an example for all of us who, from one reason or another, are still reluctant to have this operation.

BTW, was it under general anaesthetic?

xxxx

[lymphite in reply to Rebec]

I am being so available for information about the surgery because I felt there wasn’t enough personal experience reported when I was looking into it. I think it was on Breast Cancer. Org that I found a thread that had people who said they had it or were scheduled to have it and then just stopped posting. I understand now. I have very little interest in most of the issues because I really feel that I am cured at this point and I feel that it is unseemly to push my good fortune on people who are suffering so much.

Ultimately everyone has a different situation and has to decide for themselves. I did have general anesthesia. It seems as though all the doctors in the US use it but not in the U.K. or Japan.

[Rebec in reply to lymphite]

People prefer, in general, to have as few general anaesthesia as possible. I'm glad you are proof of a successful operation.

Vicky

[lymphite in reply to Rebec]

I am one of those people. At my 3 month follow up I suggested he might try awake as the anesthesia was the hardest part of the whole process and they are successful with local at Oxford.

[lymphite]

If this link works it is for a great story on lymph node transfer and LVA click.et.npr.org/?qs=5552ce...

[2198224 in reply to lymphite]

Thanks for posting this article. I had 28 nodes removed with bladder removal at MD Anderson in November. It took over a month before my left leg began swelling. Now both are swollen as well as the pubic area. Am seeing a certified lymphedema therapist and just received compression capri garment that I hope will help. Between all the time it takes to deal with the new ileostomy and MLD, I am having to cut back on other activities I enjoy. So I will definitely be looking into lymphnode transfer. I live in Butte, Montana, but will certainly go back to MD Anderson if they can do the surgery. I want to thank everyone on this site for the great information I've garnered from you -- so important to a newbie.

[LymphLivin]

Hi,

I currently reside in the United Kingdom but originally lived in Massachusetts. I under went surgery and radiotherapy for cervical cancer in July of 2017. The onset swelling from Lymphoedema began to show by the end of August and was officially diagnosed in January 2018. Unfortunately the lymphedema nurse was not as proactive in managing my condition so I began to research on my own.

Currently I am wearing grade 2 compression stockings and will be self paying for MLD. I’m hopeful for the Stanford clinical trials of Ubenimex, yet knowing that the condition is progressive will be looking into surgical options. My appointment will be at Oxford Lymphoedema Practice but depending on cost and insurance options may look to the States for surgery.

If you’re on the East Coast, look into

Beath Isreal Deaconess Medical Center offer bidmc.org/lymphedema

Best of luck to you and everyone living with Lymphoedema.

[butiinside]

I can not wear shirts/blouses at all now. Have to wear tops with butterfly sleeves or else stretch the sleeve with an iron. Helps if material is stretchy. Just have to learn to improvise. Any surgery is risky and you have to weigh up the pros and cons. I can not wear compression sleeves as they tend to cut off my circulation. I probably have wasted a lot of money on clothes that no longer fit. There is also the work element. My working life has been sporadic since this started. I have had to retrain in office work, but can not do an excessive amount of typing and no heavy lifting.