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November 2013.

My name is Valerie, I’m 52. I currently live in South Korea, with my wonderful husband and our two Cairn Terriers.

This blog aims to reflect my thoughts and opinions on receiving a different new treatment for a couple of medical conditions that are making my daily living much tougher. I hope this journey and collection of facts and thoughts will be helpful to other sufferers about this new treatment, but I am not a medical person, so they may be simplistic rather than medically correct or complete.

I am just an average human being, looking for a cure. If you are too, then – Welcome! I would be happy to share the journey of this experience with you, please feel free to ask if there’s anything you want to know about what happens over the new few months.

I hope you find at least some of it useful as we all hope we will see the ‘holy grail’- which is a 100%  cure for Lymphodema and Lipodema, whilst we are still young enough to benefit from it.

So – one week from today, I will receive a new treatment in South Korea for Lymphodema and Lipodema.

I’m lucky – I didn’t get cancer and I wasn’t born with these conditions, those that suffer from these conditions for these reasons are true fighters. I got mine after some leg surgery that went wrong in 2011.

I’m assuming that if you are reading this, you have one or both of these conditions or you are close to someone who has. In that case, you will know that once the medical world diagnoses these conditions for you, they mostly tell you there is no cure, go away, put your feet up often, exercise often, then wrap yourself in some compression garments until the day you die and don’t bother us, again, please. ( Sorry for the cynicism and generalisation- I know there are some Lymphedema support angels out there, as well)

You will know that currently, the medical world in most continents seem to just give nurses and doctors just basic knowledge about the lymphatic system, so it takes ages to get a diagnosis, or ages to even find someone who knows what these conditions are. They just see a fat person, or an ex cancer sufferer who ‘should just be glad to be alive’. Most medical insurers seem to be uninterested and won’t fund any treatment, or make people jump through so many hoops.

If you are like me- you will be scouring the internet each day, looking for news of new treatments, reading fellow sufferer’s stories on facebook pages,

https://www.facebook.com/groups/153857528014353/

https://www.facebook.com/groups/311551365593965/

relying heavily on support organisations

http://www.lymphnet.org

http://lymphland.weebly.com

and wondering if there’s a clinical trial nearby that you can join….

http://www.nhs.uk/Conditions/Lymphoedema/Pages/clinical-trial.aspx

….as well as making comments and suggestions to help support each other through a miserable failure of the human body, and a tardy failure of the medical world either through genetics, disease or a trauma and the prejudice aimed at ‘fat people’.

You may have seen that some health organisations are slowly waking up to the fact these conditions got left behind in the research world and now they are allocating funding to gain more understanding and seek possible cures.

http://www.sgul.ac.uk/research/researchers/g-k/franklyn-howe/research

http://www.lymphedemapeople.com/wiki/doku.php?id=lipedema

So, what’s new out there for us in the here and now? Life is so short and it feels like mine is passing me by, waiting for someone to say- Here it is! The cure! You can have it now!

Well, there seems to be 3 main areas of new ideas and treatments, which I found (there could be more!) :-

There’s lymph node transplants…..pioneered by a Dr Corinne Becker.

Lymph-node transfer involves removing lymph nodes from elsewhere in the body (the groin or the neck) and transferring them to the axilla. These lymph nodes are transferred with the blood vessels that nourish them, and these blood vessels are attached to blood vessels in the axilla. After the procedure, the transferred lymph nodes start to drain lymph from the affected arm. Lymph node transfer is a more complex procedure than LVA. It involves a four-to-five hour operation and a three-to-five day hospital stay. Recovery is fairly rapid, and patients can expect to be back to normal in three to four weeks. With this procedure and with LVA, the reduction in swelling is gradual; it takes place over a period of about one year after the surgery. (Source: http://www.seattlecca.org/diseases/surgery-for-lymphedema.cfm )

Here she is, describing the process on utube.:-

http://www.youtube.com/watch?v=Dv2Rwp_4Urw&list=PL4F8D94400D78EC80&index=1

A fellow blogger has described her personal journey of this, I’m sure she won’t mind me sharing her link:-

http://lymphnodetransplant.wordpress.com/2013/06/11/artificial-lymph-nodes/

Then there’s a great idea for those who are at the point of cancer surgery… Lymphaticovenular anastomosis (LVA) which I understand was developed by a Dr. Isao Koshima in Tokyo, one of the pioneers of modern microsurgery. It involves making several small skin incisions in the affected arm. Just under the skin, the lymphatic channels can be found. The surgeon joins several of these channels to nearby veins so lymph can empty into the venous system, without having to go through the axilla. LVA is performed under an operating microscope and requires a high level of skill. It takes about four hours. Because the incisions are not deep, there is very little post-operative pain and the patient can go home the same day. (Source:- http://www.seattlecca.org/diseases/surgery-for-lymphedema.cfm )

This is a blog about this particular method:-

http://microbreastreconsf.blogspot.kr/2012_10_01_archive.html

And then there is the one I’m going for, which is classed as stem cell therapy and has a three pronged approach:-

  1. Liposuction, to debulk the limb and provide the stem cells (from my own body, therefore little risk of infection or rejection)
  2. Lymphosuction- to clear the damaged lymph channels away and create an area of repair required in the body which will stimulate the stem cells into action
  3. Stem cells intravenously re-introduced.

Then, I have a 10-11 days stay in hospital, to maintain the reduction with tightly wrapped bandages, further draining, pneumatic compression and physical therapy each day and then compression garments upon discharge, as I do now.

The idea is that those precious transplanted stem cells that were asleep in my body awaken with the challenge of repairing a damaged area in my body and go rebuilding new lymphatics. Simplistic, but easy to understand.

Here’s a link to my choice of weapon in the fight to secure this Holy Grail….evidence of successfully cured cases, despite the language barrier…..

https://www.facebook.com/youngki.shim?fref=pb&hc_location=friends_tab

You may be wondering why I favoured the last one. Easy !

1)      I live in South Korea, its only available here right now, or similar in Cuba.

2)      The surgeon, Dr Shim, is guaranteeing  a 100% CURE by the end of a twelve month period, which means:-

3)      NO MORE FLUID RETENTION

4)      NO MORE HOT, TIGHT COMPRESSION GARMENTS

5)      NO MORE PEOPLE STARING AT MY FUNNY SHAPED LEGS!

6)      SHOES THAT WILL FIT

7)      TROUSERS THAT FIT

8)      BETWEEN A 30-100% REDUCTION IN LIMB DIAMETER

9)      NORMAL LOOKING LEGS!

Despite trawling the web, I didn’t find out about the treatment by myself, Dr Shim posted some impressive pictures of results on Lymphodema Facebook group pages. Rather unconventional, but effective- I was very impressed with what I initially saw, even though the size reduction can be due to compression and de congestive therapy.

So, last weekend, my wonderful husband took me to Dr Shim’s hospital in Seoul and a sonograph clearly identified the areas of spongy flesh drowning in Lymph fluid and fatty Lipodemic tissue.  The latter is a predisposition of tissue before it in turn becomes saturated with overflowing lymph fluid.

I stood on the step in the consulting room and had pictures of my legs taken in all their ugly glory against the bright blue background- ready to compare the results after treatment.

He also confirmed a severed Saphenous nerve, which has been giving me pain, pins and needles and stabbing sensation on the ‘inside’ of my shin, numbness on the outside ( like your lip after a trip to the dentist for a big filling) and extreme tenderness of any outside pressure on my shins down into my feet, making shoes so painful to wear.

There is only a 50% success rate of sorting the nerve damage, so to prevent any ambiguity in the results of the stem cell therapy, I have opted to have this looked into at a future date.

What would you do? Right place, right time, it has to be done, yes?

I’m sure you would jump at the chance, too.

I just want to thank my husband, who is the one working and living out here, away from all our friends and family, to earn us the money to pay our mortgage off more quickly – I giving thanks to his selfless love, on going support and devotion, as he was willing to empty that saving fund…but our insurance company have agreed to pay at the 11th hour.

Wish me luck, my eggs are all in one basket… I’m putting my faith in this surgeon to honour his claim of a 100% cure and delivery of success….the next time you hear from me, will be my diary, each day of a 14 day stay in hospital and what happens in that time.

Press ‘follow’ for a vicarious journey, I will need your support and well wishes along the way!

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