I am now halfway through the important 12 month period for the stem cell therapy to have worked.
My legs have never felt so good since the fateful operation in 2011 that gave me Lymphodema and I am so grateful to Dr Shim and his team for trying their best for me. I am back in 10 and 12 English clothes sizes and I can wear normal width shoes and sandals again.
I’ve learned how to bandage any swelling to reduce it back down, I have lost over 10kg, I have modified my diet to pure foods, I am walking around 50 miles a week and elevating when resting. I wear compression garments 24/7 and I have been home to England for some important family celebrations. I can still feel nodules of lipodemic fat returning in my thighs and there is lymph fluid still present in my calves, but to a much lesser degree.
With a few days to spare in London, I tried to book a private appointment with Professor Mortimer, a retired gentleman with a huge reputation of fully understanding Lymphodema, Lipodema and all that goes with these conditions. I was hoping to have a lymphoscintigram, to highlight where I still had issues and indeed, if there were any visible ‘repairs’ in my calves, the original area of injury.
I left it too late! The earliest appointment available was May 23rd and our return flight was booked for May 17th. It was not meant to be….I had, however, booked a Vodder Technique manual lymphatic drainage session at this private clinic with Birgit, who was most knowledgeable and able to ensure I was comfortable for my 12 hour return flight back to Ulsan.
Whilst home, I needed a maintenance CT scan for an existing hereditary health problem and I spoke with the 2 vascular surgeons at length about the events leading to my current health position. I expressed anxiety about not being able to get a lymphoscintigram and they both assured me that it wasn’t the best thing to use, anyway, as it only provided a 2D view.
They filled me with renewed hope when they told me this particular NHS hospital was about to employ a fully trained surgeon to carry out lymph node transplants and that they were buying a specialist MRI scanner that took 3D pictures of the lymphatic system.
It’s heartening to know that Lymphodema/Lipodema treatments are finally being upgraded to more than bandages and massages and that the NHS are now funding Tumescent Liposuction and Lymph Node transplants. As time goes on, maybe they will be able to provide a cure/repair, but as far as I can tell at the moment, both of these procedures remove and alleviate the worst of the symptoms, with on going maintenance using compression and MLD.
This week, in London, there is a conference taking place on stem cell regeneration therapies and how much progress has been made in this field. It is, of course, currently plagued by lack of funding from the large pharmaceutical companies as there is no great profit in providing research into non – medicinal procedures for them.
Arnold Caplan, one of the key speakers, had said in one session that,2014 could be the breakout year for stem cells. If he is right, there could be a surge in market activity for the top Stem Cell developers moving from development to commercialisation.
One session will be discussing the massive potential of regenerative medicine. Another speaker, Dr West, believes that cell therapies will inevitably become the big sellers with the ageing populations in the US and Europe, 80% of who suffer from age related chronic illnesses, and with generic competition for cell based therapies unlikely, surely the big drug companies will start to show interest in grabbing some big profits very soon….
So, where does that leave my stem cells? Have they worked in some areas? It’s hard to tell without a look inside me. Personally, I feel that the success is around 80%- but like the situation with lymph node transplants – it could just be the compression and MLD and modified lifestyles that is maintaining progress and holding it steady.
Lymph node transplants can take around 5 years to be fully effective and to grow new nodes and connections. Further transplants may be necessary to ensure there is sufficient capacity present to cope with the amount of lymphatic flow.
Stem cells can take 4-12 months. Personally, I feel that I am near – and yet so far! Would a ‘top up’ operation work? Would it take me to 100%? At the very least, I would have tidy knees, legs that looked like legs again and feel that I had done everything possible within my power to make this therapy work. The cost is another $4,000 and 3 nights in hospital. The insurance company won’t pay. They wouldn’t pay for a lymphoscintigram either. They felt it was out of scope of the treatment! I have asked them to reconsider the top up procedure, as I have read fellow patients who have been treated in Europe have had 2 or 3 procedures to get to a position where all the work is done.
I have mentioned a top up before on this blog and people have warned me that it could be money wasted. Yes, it could. But if you have read the journey so far and heard of the progress I have made so far and become more trusting of the worlds view of the power of stem cells ( its the ones that are cultured that may cause cancer, not the adipose fat sourced regenerative ones) am I being a little shortsighted in not trying to get the job finished? Its a mental dilemma!
I am taking supplements still, with my home made bamboo leaf tea providing good quantities of silica for reducing inflammation and improving circulation as well as reducing body heat (the dratted menopause!) improving sleeplessness and quality of hair ( thinning!) and now a teaspoon of turmeric added to my morning coffee for reducing inflammation. Both are an acquired taste, but in the name of science, I will try them for 3 months, hopefully, though, the power of the mind will help make them effective during the hot humid summer!
In my last post, I mentioned the hot flush problems that were keeping me awake and I was considering starting to take HRT again, in case it was hormonal imbalances and inflammation affecting the return of the fat. I took it for 5 days. My weight went UP for no reason. I stopped taking it. I have recently been awake at strange hours due to jet lag. This has now gone and I’m sleeping well and the hot sweats both day and night are subsiding and manageable. Co-incidence? I don’t know- but I’m not complaining!
My next appointment with Dr Shim is planned for mid June. Plenty of time for me to think about whether to pay to top up, or to shut up…if I lived far away, I would be saying ‘no’ to travelling over here to have it done. But I’m here, in the country, on the doorstep.. but I’ve only met one totally repaired patient. The rest are like me- waiting, watching, and unwilling to risk a second operation at this price……….what would you do if you were me?!