There is always hope.. Maureen’s story

Image from Wyatt rehabilitation

Maureen has been following this blog for a while, but sadly missed our gathering in New York, but has been able to connect with the other ladies since. Although we knew she had surgery for her Lymphedema we did not know her full story till recently. I was moved by the depth if despair that Maureen reached, living each day with Lymphedema and it’s complications. That she reached a level where she felt that amputating the leg would be better than continuing, shows how severely LE can impact on people’s lives, both mental and physical. Maureen was fortunate to have an oncologist who did everything he could to find treatment for her Lymphedema, we need more doctors like that, who do not think their job finishes when the cancer is gone!!

Maureen’s story took me back about ten years to when a friend rang me, she asked if I would speak to her brother. Her brother had surgery to have a melanoma removed and now had Lymphedema, was experiencing severe swelling and infections. He told me that he would rather have the leg amputated as it was impacting his quality of life, he felt an artificial leg would be a better option. We spoke about types of treatment, about exercises and massage that may help. Very soon I realised that no one had given him these options. He did not know about complex bandaging to bring the swelling down, then fitting for compression garments. He had not been told about Manual Lymph Drainage or the benefits of swimming and walking to move the lymph. No one had educated him in how to care for his leg now he had Lymphedema. This story had a happy ending in that he found a Lymphedema therapist, did a few weeks of Complex bandaging, was fitted for a garment and started to take a prophylactic antibiotic to guard against infections. His life turned around, as a surfer he was able to get back in the water, which was a great exercise. Living with Lymphedema is a 24/7 care situation but it can be done.

Sadly another story I read recently was of a young girl, in her 20’s who did have her leg amputated. This really disturbed me as I could not believe a doctor would agree to such treatment. There was not a lot of detail but she had Lymphedema for the past five years after cancer treatment. There was a picture of her leg, and although not the worst I have seen, it was 65lbs but not distorted in shape and the skin looked smooth. I could not help but wonder if she had been offered other treatment, had it not worked, was it available or was it unaffordable? I cannot imagine what leads someone to such a decision, or a doctor that would not look for other options such as Lymphatic Liposuction, bandaging, compression etc. It breaks my heart that LE can bring such misery to someone’s life yet it is such a secret side effect of cancer treatment that many have never heard of it. In contrast Maureen’s story is one of  success initiated  by a doctor who believed there had to be a better way.

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Maureen’s story in her own words..
“My story… I had stage 3 Melanoma and the surgery was June 18, 1992. They removed all lymph nodes in the right groin area because I had cancer in pretty much all of them. I was told I would have “slight” swelling!! I was fine with that because I didn’t know any better. I was told I would probably need to wear compression stockings, again not knowing anything about Lymphedema. It wasn’t until my honeymoon the next year that I noticed that the heat in Mexico bothered my leg but I did wear the stocking faithfully. It started to swell a little not too bad. Once I hit my 5 year remission I asked the oncologist if I could have a baby and he said yes so I got pregnant in March of 96 and in May I got bit by a spider on my leg and that’s when things got really bad! My fever spiked to 105 within 30 minutes and the pain was unbearable(I’m sure you all know). I was rushed to the ER with 106 fever, I told the dr cut the leg off I’m not losing my baby!! It was a long 2 weeks in the hospital but Thank God my baby was fine(he is 17 yrs old) after that infection I started to use the pump and that’s when I started getting infections and more swelling in abdomen. I hated using it! It was a joke in my family to when I was “checking in” at the hospital every month because I had so many infections. After so many years of the leg getting out of control and becoming hard to handle I told the doctor its time to have it taken off. I was done!!! It was deformed and heavy. It cause lower back pain and my hips hurt so badly. I could hardly walk. Then November 2011 my oncologist heard about Dr. Becker and Dr. Vasile doing a conference on LNT so he went because he needed to tell them about me. I saw him the next week for my 6 month check up and he was beyond excited for me to meet them in NYC. I went home called Dr. Vasile’s office and was on the phone with her for an hour! She said she wanted me to meet with her the next day in CT and start the process. I did all the tests that week and the next week I met Dr. Becker. She looked at my leg(as she sat on the floor) and felt it and stood up and said to me ” I can get it normal again” I cried!!! My husband and I went home that day feeling hopeful! I started therapy the following month here on Long Island where I live. My dad died 2 days into my therapy putting me in a depression because he was so excited that I was finally going to get my life back!! I wanted to cancel the surgery and my sister and brother told me no way would my dad want that!! So I moved forward with it. My first surgery was March 13 2012, I met with the drs the day before and they were thrilled how well the leg responded to therapy. The next morning I went into surgery. My poor husband was told it should take about 5 hrs well it was over 9 hrs!! A lot of scar tissue in the right groin area. She transferred a node from the left groin to the right and then cut away a lot of tissue from the thigh and calf. In my case I saw results right away because of how much tissue was removed. After a week I started therapy again and lost so many inches!! I was beyond thrilled!! My second surgery was July 2012 and they took the node from under my arm and placed behind my knee. They also removed a lot of hard tissue from the calf and ankle. Also more lipo on entire leg. So again I saw results right away. My leg looked normal!! I could not believe it!! The 3rd surgery was November 2012 where they removed over 10lbs of hard tissue from my abdomen!! That was all from years of the pump!! Dr. Becker hates the pump!
So now its 2 years later and I feel amazing! My life is back to somewhat normal lol and knock wood no infections!!
Sorry this is so long but that’s my story!!!”……By Maureen
Thank you so much Maureen for sharing this with us, it shows that no matter how bad the situation there is always a better way. I am so grateful to be living in a time when surgery is available to treat Lymphedema and give people a better quality of life than they might have had in the past. Never give up hope, there is a light at the end of every tunnel. Thank you …..
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14 thoughts on “There is always hope.. Maureen’s story

  1. Unfortunately, I know EXACTLY what Maureen and this other girl were feeling. I didn’t include this in my story that you posted. In my early 20’s I was so incredibly depressed from living in and out of the hospital that I asked my doctor if he would amputate my right leg as all my infections always start in that limb. He told me I wasn’t a candidate because I would still require a “stump” which would be my upper thigh so that an artificial leg could be attached. The upper thigh is the exact area where the infections start. So, even if my leg was amputated I would never escape the infections. When I look back on it now I’m so incredibly thankful that amputation never occurred. However, when you’re in such despair and you feel there’s no way out, you will do ANYTHING and take drastic measures if you think it will help. I’m SOOOO happy that didn’t take place with Maureen but shed tears for the other girl as I know on every level possible what she has been thinking and experiencing. May God bless her!!!

    • Thank goodness that both you and Maureen had doctors that would not agree to such drastic surgery… This girl had the surgery last year in the US and i find it very difficult that a surgeon agreed to perform the surgery when other options are out there… So very sad

  2. Thank you Helen for putting my story on your amazing blog! I too find it sad that the poor girl didn’t have help like Kimber and I did. I’m thankful for my oncologist and I’m glad I didn’t go through with the amputation.

  3. So frustrating that anyone has to go through such despair when there are options. All we can do is keep talking to our professionals to educate them. Well done to Maureen and Kimber for keeping up their treatment.

  4. Dr Becker doesn’t like pumping. But which ones? There are many and the flexitouch A Good pump. I truly believe that the flexitouch is better than MLD.

    Sent from my iPhone

    • There are very mixed views on this … I guess everyone is an individual in how it works… For some people it pushes the fluid up into the abdomen and genital area which can cause more problems… In Australia it is not something you see but I note that in the USA they are used a lot …. I think that the jury will be out for ever on this subject!!!

  5. The story of the young girl is truly sad indeed. It is shocking that this happened only recently!
    When my mother told a doctor my diagnose he said to her that in these days it is manageble with conservative treatment and that they can prevent it from worsening. Previous stories show us that conservative treatment alone is not enough for some people and that doctors are not well educated on this topic. Good that there are doctors like Dr. Becker who know that patients need more….and not by amputating the leg?! We are not living in the Middle Ages jezus… Good to hear your positive story Maureen! Thanks for sharing it!

  6. Hi Maureen, I just read your story! Did you have a lymph node transfer and liposuction at the same time? If so, that is very interesting! How long was the recovery? I just had the transfer surgery and bypass, but feel I may have to have some of the thicker tissue removed later this year or next.

    • Hi Jeanie! Yes I did have liposuction the same time. I had very thick tissue as well and it helped so much. My recovery was about 2 months with the first surgery and about a month and a half the second surgery. My third surgery was the removal of over 9 lbs of thick hard tissue in the lower abdomen area. That was amazing after it was all gone!! But as far as recovery everyone is different. Take it easy and don’t over do it!! Any questions please feel free to ask!!

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