After a whole week of witnessing the consequences of the tragic ferry capsizing, I realise how lucky I am.. I am here- alive and kicking and enjoying life. This country is so far ahead with its technology, and ship building capacity, but not in basic health and safety….the whole nation is in mourning, feeling guilty for enjoying food and sleeping well- for those lost children will never do those things again…May they rest in peace…
The last time I posted, I was feeling the benefits of the injections administered into the fatty and lymphodemic areas by Dr Shim.
My foot and toes have remained stable, with no feelings of swelling or discomfort. The fatty areas with lipodemic nodules forming have been subjected to a twice daily massage that is a little more vigorous than the MLD in the calves, ankles and feet. They appear to ‘pop’ and although still present, I feel that the massage is helping to slow down the build up.
Looking at the outcome of clinical trials on Liposuction for Lipoedema, these seem to indicate a non return of the fat… and an increased quality of life, the latter I totally agree with….but I’m not sure how long the effects of the surgery will last…so I’ve been looking at what else I could possibly do to preserve them for as long as possible.
Firstly, at night, I am wearing the cropped flat knit bespoke compression garments to prevent or limit further deposits.
I also bought a neoprene calf protector, at the grand price of £1.50 equivalent in Korean won. I am wearing this over the top of everything, as it is the place where I can still feel Lymphatic swelling.
I am wearing full length compression tights in the day time.
I am carrying out manual lymphatic drainage twice a day and applying a Korean make water based gel, which feels lovely on my skin and smells fresh.
However, a few days back, I had a swop round and stepped outside, wearing sandals and bare feet! Delicious, cool, sensation! A simple pleasure, so sorely missed…
I am aware that I stopped taking my English GP prescribed HRT gel towards the end of last summer- and as the Lipodema manifested in a matter of weeks, I had outgrown my clothes. I was trying to wean myself off it as there is a risk of cancer and a close medical friend suggested if I didn’t really need it, then not to use it. At this point, I was not aware of the Lipoedema.
So, I needed some advice on whether to start using it again, as the summer is coming and I’ve made such good progress that if there was a preventive solution at hand, I would be mortified if I hadn’t used it.
I approached a couple of Lymphedema and Lipodema specialists around the world, and Dr Karen Herbst in Arizona gave me the common sense answer I was looking for, within 10 minutes of me sending my email.
She pointed out that is definitely a link with Lipoedema to hormonal disturbances and that the choice was mine, as there is no clinical research on this at this point. I am more afraid of the encroaching return of the Lipoedema than I am of a maybe greater vulnerability to cancer, so I based my decision on what I had to do in the here and now.
I found a blog of a fellow sufferer, so it will be interesting to see how she fares, as our treatments were just a few weeks apart.
We are returning to the UK next week for our annual visit home and I tried to book a Lymphoscintigram and a manual lymphatic drainage (MLD) session with Professor Mortimer and his team in Wimbledon, London. Unfortunately, I had left it too late and could not get an appointment in our time slot in London, even when paying as a self funding patient. The private hospital is so busy, I was advised to give a couple of months notice. We are next home in March next year, so I will have to call around Christmas time. I think this would have been most useful to see where the remaining damaged Lymph vessels are, see where the vulnerable areas are and to have a record showing the current situation. If the stem cells were to work, then a final Lymphoscintigram would show this.
The Professor’s secretary relayed a message with the same HRT advice as Dr Herbst, which is so reassuring!
Luckily, I have found a private clinic in London that can do the MLD for me, so I have requested a Vodder technique session, which I understand is the most effective and this should help me on the return plane journey. I was dealt with efficiently and in a most personable manner, so I will report back on this technique in due course.
I have tried to be an organic vegetarian, but failed after two days- sorry, Robin! I know I don’t need carbohydrates and I am already short of iron, so when I felt ‘wrong’ after 2 days, I knew vegetarianism wasnt for me.
I am, however, looking at mineral supplements. A wide selection of foods should allow uptake of most minerals, but I had read somewhere that a clinical trial had shown that additional Selenium was effective in supporting stem cell activity. I tried to see if I could get some out here, but it is sold as a composite product with other good things that I am already taking, so I left it on the shelf. I’m so glad that I did!
Because on my next trawling session, I found this..
Selenium was part of a clinical trial due to its presence in the body as a defence mechanism known as a radical scavenger within glutathionperoxidase. This helps deal with inflammation within the body, so further investigations on its function make sense….BUT.. it really doesn’t do any country any good when there are research findings retractions. There’s a whole blog page on them, if you want to have a look..
In Foldi’s textbook of Lymphology, the authors state that they checked the selenium levels in 15 patients and found them to be normal, so they couldn’t understand why it would be considered beneficial, unless there was a large deficiency. But an overdose is toxic, so it would be irresponsible to promote selenium. ( Foldi, M Foldi, E: Textbook of Lymphology, 2006: p228)
In fact, they suggest that other minerals in the body are equally important, but if medications were to be used, then consider vitamin C and an ointment with no side effects, Unguentum Lymphaticum, may help. When used with Manual Lymphatic Drainage, it encourages keratinocytes (Keratinocytes are the most common type of skin cells. They make keratin, a protein that provides strength to skin, hair, and nails.) and Langerhans cells in the skin, ( these are located in the epidermis and the dermis, and send out large numbers of immune cells such as T cells and B cells – to capture foreign invaders such as bacteria and viruses, and fight off injuries like cuts and scrapes. They constantly monitor the environment of the skin for unsafe situations) as well as Macrophages ( Macrophages release agents that stimulate cells in the immune system. Macrophages are constantly on alert and in battle-ready position. When you think macrophage, think Pac-Man; they gobble up the body’s invaders.) and granulocytes, ( Granulocytes help the body fight bacterial infections. The number of granulocytes in the body goes up when there is a serious infection. People with lower numbers of granulocytes are more likely to get bad infections more often.) to gather in the lymph nodes.
Japanese researchers have also used an injection containing autologous lymphocytes, ( A person’s white blood cells. Lymphocytes have a number of roles in the immune system, including the production of antibodies and other substances that fight infection and disease.) which increases tissue proteolysis. ( This is the breakdown of proteins into smaller cells, which can then be transported away by the bloodstream, rather than stagnating within the tissues of the body, as is the case with Lymphoedema patients.)
So- could this be the hidden ingredient in the effective injections Dr Shim gives to me?!
It’s not all bad in the world of stem cells- where the medical hype tries to scare people with the implication that if the processes aren’t tested in blind clinical trials with a placebo, too, then cancers and /or death could follow. As this article points out- its also more about money and big profits for the pharma… how can a drugs company make a profit if a patient’s own stem cells are replaced back in their own body?
The paragraph headed ‘funding the non fundable’ says it as it is…!
So, now I’ve blinded you with the science, its back to reality.
These legs…. these legs are pretty good! I actually am beginning to quite like them again, despite the fact that as I’ve lost weight, my skin is beginning to sag quite alarmingly- not a pretty sight! Its thin, stretched and beyond help, I think, so I’m very concerned that this will contribute to any return of fat cells and the lack of tautness will not help lymphatic structures hold the levels of pressures required to work correctly, thus keeping them vulnerable.
So, I then found some general information on silica within bamboo and its ability to support collagen cells and the elasticity of skin…well- I’m very close to some bamboo- a whole forest full! I need to know more about this, so I’m on the case… I’ll let you know what I find out!
I am incredibly thankful to Dr Shim and his team for doing such a good job on the tumescent liposuction and the aftercare has been excellent. He has been most considerate of all my concerns and fears and been very patient with me and answered all my queries.
But, what about those stem cells? Can I tell you that they have started to work? Well, I wouldn’t, until I have it confirmed by a lymphoscintigram, but at this moment in time, the left leg, which is the one that I feel was damaged during some surgery in 2011, is much, much better. I am still aware of a tightness and fizziness if I leave compression garments off for too long, or do too much. Today, it has been raining very heavily, so I haven’t been able walk much as I normally would and I my calf is telling me it knows this.
And the right leg, which although I don’t think was injured, but suffered from the effects of a hugely overloaded lymphatic fluid overspill, feels remarkably well!
in those early weeks after that fateful operation, seromas had quickly formed in both my knees and I was leaking fluid through wounds so fast, dressings were being changed every 2 hours. I had been advised to do lots of walking, so I did- and this must have increased the lymphatic load even more. In fact, one day I stretched up to reach something out of a cupboard and the newly sealed stitches in my right knee burst with the pressure. It was like my waters had broken, if I’d been about to have a baby. The floor was soaked around me, there was so much fluid. This wound then took over 6 months to heal..
In Foldis book of Lymphology, the current state of my Lymphodema would be classed as being in the latent stage – that is Stage 0.
This is described as the ‘time period between the reduction of lymphatic transport capacity as a result of surgery or trauma and the onset of Lymphodema.’ Basically, everything that has been done since the operation has resulted in me being free of symptoms of Lymphodema, BUT- if I’m not careful, or become complacent, it could come back at any time..
Finally, in the Lipodema/Lymphodema world a couple of surgeons from New York who have been successful with lymph node transfers have met the very Dr Foldi who wrote my current bedside reading book- here’s the link to that blog– take a look!
Now, I really need to continue look after myself and not take anything for granted at all…. but those legs do feel good! Back again in June- stay well!