Okay, let me start by saying I could seriously hang out all day at Dr Beckers office. I had my follow up appointment today and arrived to a waiting room full of about 7 people. It’s a pretty interesting situation to find myself in … a room full of people with the same problem as me?! I felt like I was the only one in the world with this problem!… Everyone was sitting there, looking directly at each other, and you can totally feel the energy in the air that we are all DYING to talk to each other– but not wanting to seem rude or intrusive.
After a little while, I finally got chatting to someone, a lady who had Lymphedema for 14 years (post-cancer) and had only just been operated on last year. Comparing stories is always so therapeutic- you feel less isolated and realise that this problem is bigger than we actually realise. So many people suffer from Lymphedema but we hide it well and don’t seem to talk much about it. Hence the lack of information available to us? We shared our stories, which were similar in many ways but also different (she has Secondary LE and I have a Primary LE)… but we both agreed that the surgery has make a dramatic difference to our legs.
I met another guy, a bit younger than me, a professional sports man, who had a very similar anatomy to me in terms of his Lymphedema. Like me, he has less lymph nodes working in his left groin and one day his leg just started swelling and voila, Lymphedema arrived. His leg looked the same as mine (before my operation) and he was having his first consult with Dr Becker. We chatted for a while after his appointment and I had to hold myself back from being a crazy advocate for surgery and screaming, “JUST DO IT! DONT WAIT! AHHHH!”
The one thing we all had in common was that we didn’t realise surgery was an option. We had to fight, we had to search our little hearts out to find answers- which lead us all to Dr Beckers door.
Now to the news of my appointment with Dr Becker…
She was extremely impressed with my results already, only four days post operation. She was shocked actually. She was like, “what’s going on here?! Something crazy has happened!”… and I was like, yep- a miracle. She told me that so far, it was looking very promising and she told me that I will probably be back to normal. Yeah, I know what you are all thinking. Because I am the same. SHOCKED. Disbelieving.
Even if I don’t make a full “recovery” and still have a small degree of lymphedema in the future… this is music to my ears. From the day I was diagnosed I was told there was nothing I could do. I just had to live with it. Like EVERYONE who is diagnosed with Lymphedema. It is just not possible that our doctors continue to tell Lymphedema patients this prognosis. It is just not bloody possible. Because as we all know too well– people go untreated/ misdiagnosed for many years, their conditions worsen and then when they finally discover surgery as an option, their chance at having a full recovery is a lot less than if they had been treated sooner in life.
When perhaps, early intervention and treatment could have “cured” them or given a much better result from surgery. Not everyone gets rid of Lymphedema through surgery (its rare!), but the earlier the intervention, the better that chance of a miracle.