Lipoedema Surgery with Dr Ghods in Berlin

From Jacqueline Smith, Lipoedema Patient Advocate

 

 

The day I first got a glimpse of my new arms, two days post-op, I felt like I'd just won the lottery. In pain, but bursting with joy!

After nearly 35 years of not being able to see underneath my arms, my armpits, and to touch around them, lift them. Trust me, it was a moment of wonder for me. One that brought tears, immense happiness, and a secure relief that it was over. My new arms—my buried arms for 35 years—were finally uncovered. This amazing surgeon, Dr. Ghods, performed magic and unlocked me from this prison. That's exactly how I felt, and I still do.

I actually flew to Berlin quite calmly, despite the major surgery ahead. All the information was loaded up in my head. If it were not for the help of other lipoedema ladies on the Facebook page, I am a member of, I wouldn't be here on this journey to Berlin. Truly, my thanks in particular go to Katy, my hero, a lady who'd had surgery with Dr. Ghods a year before me; she was my crutch, a source of information, and a friend throughout. Without her, I would never have dared to do it. The fact that all of us with lipoedema stand together is fantastic. We encourage each other; two more ladies have gone to have surgery in Berlin since seeing my new arms!

I stayed focused on the journey, flights, times, and what was to be done once we arrived. It kept my mind busy and away from the 'what ifs'. Occasionally, I'd have a quiet moment. Especially the morning before I was admitted to the hospital, because then it all became real. "What if this all goes wrong?"

I chose Dr. Ghods, because he works in a hospital setting that has an intensive care unit and a high dependency unit. Dr. Ghods is at the top of his profession. A professor in hand surgery too. He takes larger volumes, because he's confident  to do so.

As well as liposuction I was having a brachioplasty (skin removed and lift). I asked for it this way. Why? Quite simply I could not afford two separate operations. So the fat was removed, then the skin. I already had lax skin due to the weight of the forming folds and so had he removed just the fat, then I'd definitely need the skin removed later on. This was all discussed in a video consultation prior to my going to Berlin.

 

 

On the day of the surgery, everyone was lovely.  The nurses who didn't speak English used an app to translate and everyone was very efficient. I met Dr. Ghods and Dr. Amir and I was drawn on and prepared for surgery.

I was the first one in surgery that day. I am quite a spiritual person, so I was able to keep myself calm. Centred.  

I sailed through the surgery and so contrary to medical opinion, my BMI was not a problem.

Prior to surgery, at eight weeks or so, I was asked to wear compression for 23 hours a day to help soften the lipoedema to help with surgery. I've got to be honest; I found that difficult to do. So I used my Deep Oscillation Personal from PhysioPod daily instead, and I wore compression on and off. I was told after surgery that I'd had little blood loss. I put that down to using deep oscillation. Mr. Vasu Karri in the UK (a consultant plastic surgeon) recommends Deep Oscillation for pre-Lipoedema liposuction in all Stage 3 and selected Stage 2 Lipoedema sufferers because he finds that deep oscillation therapy softens the fibrosis with less bleeding, fewer complications, and a quicker recovery so I knew what I was doing was the right thing.

 

 

I remember waking and my arms feeling hot in the recovery room. I could move my arms, but they felt so sore and I knew then that I was in for a long recovery. But I had every faith in the work of Dr. Ghods and his team. The next 6 days in the hospital were about getting up, moving, resting, drinking, ice packs (my arms felt on fire), pain management, and wound management.

 

Bioflect bolero arm compression

 

Once home, I bought myself a Bioflect Arm compression, Bolero type. It was manageable to put on, and it offered me just the right amount of compression. My wounds were slowly closing. An infection in the left armpit was treated with antibiotics. I also had some cording occurring under my right armpit, preventing closure, which my MLD therapist attended to. She placed a small piece of clingfilm over the tiny part of the open wound and used a small 1.5cm pinhead oscillator over the raised, tight scar to soften and loosen.

 

DEEP OSCILLATION application examples through gloved hands

 

 

How wonderful it is to feel deep oscillation applied through gloved hands! The gloves vibrate with a very tiny vibration, like a tingle or feather, so soothing on the inflamed skin. I also used my home Deep Oscillation Personal Device on my hands once I was home. My hands were so swollen, black and blue, and hurt due to the swelling. Within just a few days, my hands were reduced, and the nice black colour was fading. Deep oscillation helps with scarring, inflammation, and nerve tingling. I cannot afford regular MLD with a therapist, so I am thankful I bought the Deep Oscillation unit years ago and am able to use it at home. 

I wish Deep Oscillation were more readily available on the NHS. It'd actually be great if all GPs and hospitals offered deep oscillation and MLD to lipoedema ladies; it is so important for those of us ladies who are in the later stages of this disease. Or if they have had surgery and are needing aftercare but don't have the funds for private post-treatment. It is surely better to prevent lipoedema from progressing than to let it develop, which just creates further ailments and co-morbidities further down the line and will cost the NHS more in the long run.

 

My arms are now completely pain free. Having this surgery has been life changing. Dr. Ghods, performed magic and unlocked me from this prison. That's exactly how I felt, and I still do.  He's changed my life.

 

I've lived with Lipoedema for such a long time; so it has become part of my life. My daily routines are just to get by. Suddenly seeing it gone is such a strange feeling. Initially, it's a feeling of elation, but further down the journey, it takes some getting used to. New sensations, such as sensitivity, are still high as healing progresses. And mentally and physically remembering that the fat has gone. I don't check my arms as constantly now, but at first I did, just to see if they weren't growing back! Dr. Ghods dietician, thought it would be gone for good in my arms, as I've now gone through the menopause. However, diet will still play an important part in controlling the inflammation in my body, as I still have lipoedema in other areas.

Looking back, I'd say the operation has been a huge success! Carrying those huge arms around with me for 35 years that have not stopped growing, no matter what I did, has been horrendous and has impacted my life on a massive scale. To the point where I gave up hope—any hope—of ever being rid of it. And therefore, any hope of living any kind of normality, I'd say it far outweighs a minor complication such as a treatable infection. 

You know, I didn't even know what I had been missing until I began to notice what I could do with my new arms. I remember one day standing undressed in my bathroom just after my shower. And I felt a cool breeze at the back of my arm, under my armpit. I wondered what that was and realised the wind had just blown a breeze. I'd never felt that before under my arm, as I've never had bare armpits. They were encased in lipoedema. I couldn't feel anything before. I remember crying. I realised what I'd missed all these years. Something as simple as the sensation of a cool breeze

 

I still have Lipoedema in my upper legs, hips, buttocks, and boobs. And that part of me reminds me that every day, it's still there, waiting. Waiting to be removed or waiting to bring my body to a halt.

7.8 litres of lipoedema were removed, along with 18cm of skin. There is less of me now, but I have more love to give now that I'm happier.

I'm just so scared of my life being snatched away before I've lived it. This operation has done wonders for my self-esteem and quality of life. I no longer feel hopeless or trapped.

Living a life cocooned inside a body that's trapping you is like waiting for "life to begin". I know that sentiment will resonate with other lipoedema ladies. And it is for this very reason that I feel passionate that the younger generation of lipoedema ladies, at puberty, when it begins to develop, learn about this disease, get diagnosed, understand their bodies are compromised, but are taught ways to cope. They shouldn't be made to feel that it is in any way their fault and that there are options out there and support (see PhysioPod additional information below).

Our future and their future depend on the outcomes of the next NICE review on liposuction scheduled for 2025 and where the science takes the knowledge in helping this disease be better managed. Currently, for many suffering with this disease, even conservative management does not follow NICE recommendations; compression garments aren't always prescribed, and many GPs still don't recognise lipoedema as a condition, despite it being on the NHS website and there being a free online course for GPs and primary care health professionals to improve the diagnosis, treatment and management of patients presenting with lipoedema.

And finally, although I've got a long way to go, I can now see that it is possible to get rid of this suffocating disease, which gives me hope for the future. I just need the money to privately fund more surgeries or for NICE to change their guidance on non cosmetic liposuction to recommend this much-needed procedure on the NHS.

Until next time, Jax 

x

 

 

For more information on Lipoedema, please view our Lipoedema page

For more writing from Jacqueline Smith please see her guest blog page on PhysioPod

 

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