TRAUMA INDUCED LYMPHODEMA ?? A CAUTIONARY WORD OF WARNING . . HAVE YOU REALLY GOT IT ??

[WardijaWardija]

I have been posting on this site for the last 4 years or so, ever since I was diagnosed with Lymphodema.Some of you may remember my posts.

My Lymphodema was said to be, trauma induced from a severe fall where I broke my left shoulder and detached my humorous bone.

My Lymphodema was from shoulder, in my arm-pit, down to my elbow. It was huge.

Diagnosed initially by my GP and then by the NHS Lymphodema Clinic in my local area.

From the start, it was a nightmare - cancelled appointments/nurses not showing up to clinics/no continuity of staff. Never given information how to look after the skin etc etc. Mis-meauring of my arm. Had to go through 5 different types of sleeves and supports, before the final one, which as I live alone, I couldn't even get it on or off, due to my broken shoulder.

I totally gave up with it in the end.

But I felt something wasn't right . .

I'd read that my pending shoulder surgery, could likely increase the risk of further Lymphodema.

So I wanted to know the truth before I agreed to having surgery.

Long story short - I specifically requested my GP to refer me to St.George's Hospital in London, which is a Lymphodema clinic, a centre of excellence. My GP clearly didn't want to, but I persisted and eventually she did, and thank God I pushed her.

In summary, Last October, I was seen by the top professor of the unit. He asked me lots of questions, poked and prodded my arm and then said, and I quote "my dear lady, you don't have Lymphodema at all."

I just burst into tears . .

He explained that following my fall, I had damaged the fat cells in some complex way which had left me with Lipoma fatty tissue - not Lymphodema.

My lymph glands are not affected.

I could be "fixed"

His advice was to first try and lose any additional weight, to get the arm as good shape as possible, the get my shoulder joint replaced and arm fixed.

I had already been seen by an Orthopaedic surgeon and was on the waiting list, and either when this was done, or sometime shortly after, I could finally have NHS Liposuction to remove the gross fatty tissue.

I felt like I had won the lottery !!

I've had 5 years of pure hell - for no reason.

I'd been put on medication for depression and anxiety, feeling like I was deformed and ugly. I actually wished I could have my disgusting arm amputated, or just die.

That's how badly I felt about myself.

All, purely down to sheer incompetence, and yes, I am furious 🤬.

So, all you lovely people out there who I know are reall suffering, please, if you feel something is not right, especially those of you who were diagnosed with trauma induced Lymphodema, get a second, or third opinion. It's your right, so make yourself heard.

Bless you all 🙏🙏🙏

[roysome]

Complain to PALS.

[AnneBury]

So sorry to hear about your experience. The professor you saw is my hero. He is so experienced - I first saw him in the late 1980s, when he started specialising in Lymphoedema. He gave me an explanation for what had been going on with my foot/leg swelling which I had started when I was a child. Usually the problem seems to be people not getting a diagnosis- in your case Lymphoedema was the wrong diagnosis. It is a very misunderstood condition. I wish you well for the future x

[WardijaWardija in reply to AnneBury]

Thank you Anne. It is indeed a badly understood condition, but still . . I can kind of accept the GP's misdiagnosis, but the senior nurses at the "specialist" clinic, month in, month out. Nooo.

I have other health issues (Heart & Kidney Disease) so I have to pick my battles. I've decided to let this one go.

I don't have the energy and know it's unlikely to come to a satisfactory conclusion.

I already have the satisfaction of knowing that my initial instincts were right.

Thank you for your support and keep well 🙏