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It’s hard to believe how much time has passed since my last post and my return to the UK.

I came home in April and made a visit to the Oxford Lymphoedema clinic, to find out more about Lymphaticovenular anastomosis. (LVA) This is a microsurgical procedure where blood vessels are attached to lymph vessels in the expectation that they will be capable of removing the lymph fluid sufficiently to effect an improvement in the flow, as opposed to a full repair.

The method is generally used on breast cancer sufferers where lymph nodes have been removed and the patient’s limb is either at risk of developing Lymphoedema, or it has already commenced. It has more successful results where the limb is freshly ‘damaged’ or there is little lymphatic fluid escaping, for obvious reasons. Vessels are stronger, no lymphatic ‘sludge’ has begun to form and smaller quantities of lymph fluid escaping means less strain on borrowed blood vessels.

I was warned of very low success rates for my situation, with vessels damaged over 5 years ago and a fair amount of ‘sludge’ ( fibrotic tissue) in my toes. Even when the vessels were sewn together and the sludge started to move, it could easily block the delicate new pathways and back everything up again.

The extremely talented and understanding surgeons warned me that there could be no change as a consequence of any operation, but if they didn’t try, I had no chance anyway. I was aware that time was running out to try and get any slow down or improvement in the condition I was in. They quoted  an average of 25-45% levels of improvement.

This felt like the last chance to try, as I knew after detailed conversations with Dr Shim, that Lymph node transfers were just not going to help either. He also warned me that the LVA procedure was likely to fail after a few weeks and to not be too disappointed if it did.

My legs were in the best condition they could be, as small as Dr Shim could get them and with nightly wrapping in bandages and compression tights worn in the day, the lymph volume was well under control. To me, the chances of making some improvement were there, so it was agreed, it was worth the try.

The procedure was carried out on June 22nd 2016, and for the 5 hours, I was awake and watching what each surgeon was doing- fascinating! We had some interesting and amusing conversations and the nurses were all lovely. The hardest part was to keep still all that time as they worked.

They each made 3 cuts in my skin on both calves in the areas identified by an ICG. This is radioactive dye injected into my feet which shows where the lymph vessels may be capable of supporting a repair. Within each of those 6 cuts were 3 further cuts, where the surgeons had used a powerful microscope to locate blood vessels and lymph vessels in close location and size to each other and capable of being sewn together.

There were over 70 stitches in the outside cuts when they finally wrapped up.

My amazing and patient  husband drove me home the following day and I sat with my legs up on the car dashboard, admiring bones and contours on my feet that I hadn’t seen for 5 years. Wonderful! I had been advised to take it easy for a couple of days and then resume some gentle walking, so on day 2, I took my dogs for a very short walk.

On my return,  I stood in the kitchen and chatted to my husband, before I felt a ‘twang’ and a warm gush inside my calf. I was horrified.

I watched as my contoured foot slowly filled up and a red bruise formed under my skin. I’d managed to trash the best of those painstaking repairs within 48 hours and I went into mourning for the lost improvements.

After that, I took it much more steadily, wary of causing more damage, but things settled down after that disastrous event.

I continued to follow the advice of the surgeons and as my 12 week follow up appointment looms, I would say that I have indeed gained a 25% improvement, with a slower time for my foot to fill up if let unwrapped and a feeling of greater pressure in my calves, as if the fluid is being held there, in a smaller area, rather than being able to fall back down with gravity.

They have given me a couple of years back. I used to be able to wear footless compression tights, but those days have gone. I can, however, wear slimmer size shoes and boots again.

In the meantime, how have things been for Dr Shim? His fame and reputation grows…

As I left the country, he had two further patients from the USA, one lady, Roseanne, had managed to get to South Korea with the help of Lonestar, who donated money via GoFundMe. Her results have been hindered by the problems with some drugs that Dr Shim needed her to inject daily, but she couldn’t get them in the USA.

Evelyn, the lady from New York, continues to improve steadily and we correspond regularly.

Dr Shim’s next USA patient was Gayle, a lady who was the recipient of his new invention, SQD and she reports this as a lifesaving procedure. Remember earlier I mentioned the lymphatic sludge? Apparently, this helps remove this. More about this another time, though.

Dr Shim has attended Lymphoedema conferences in Australia with Dr Karen Herbst and he is currently in Dallas, Texas, spreading the word at the National Lymphoedema Network conference and gaining a solid reputation as a surgeon who genuinely cares about the condition he works to resolve and the people who suffer with it. Both Roseanne and Gayle are there, too, supporting him.

Maybe he will make his way over to the UK in the next couple of years if there is a similar conference organised. Currently, there just appears to be a national Lipedema conference, a whole different ball game, but inextricably linked in extreme cases.

I will find out a little more about Dr Shim’s new SQD technique and Gayle’s opinions of this procedure as she makes progress and report back here to you in the next few weeks.

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