Back in Blighty

Tags

Compression garment, Dr Shim, Korea, Lipedema, Liposuction, Lymphaticovenular anastomosis, Lymphedema, Lymphodema, Oxford Lymphodema Clinic, Regenerative medicine, Seoul, south korea, SQD, stem cell therapy, Yonsei S Hospital

 

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.

SQD helped Gayles leg reduce in size

Roseanne and Dr Shim

Dr Shim and supporters in Dallas

Advertisements

Happy Lunar New Year!

Tags

adipose tissue, Compression garment, Dr Shim, lymph node transfer, Lymphaticovenular anastomosis, Lymphedema, Lymphodema, Regenerative medicine, south korea, stem cell therapy, Ulsan, Yonsei S Hospital

Happy Lunar New Year to you!

Not much goes on here at this celebration that westerners get to see. It’s more about families getting together and visiting the ancestors to share food with them.

Children get to dress up in traditional clothing, too.

Here’s a burial mound with some fruit left for the occupant to ‘enjoy’ and our dog was a source of curiosity to small people, as usual. We also were given some tasty rice cakes to try.

 

It’s now 3 months since Evelyn’s remarkable transformation commenced.

She reports feeling well and the pains are subsiding in her legs, which is great news. She is now ready for some more manageable compression garments and is busy sourcing these.

However, the top of her thighs are a little swollen, and she is looking for something that will address these before they become a problem.

After liposuction, support garments are a lifeline to maintaining the good work that has reduced a limb back to normal size. No-one wants to pay and then lose the advantage. Here’s an article stating why these garments are so necessary.

http://www.ncbi.nlm.nih.gov/m/pubmed/26122375/?i=6&from=compression+garments+and+lymphedema

The whole purpose of my operation here in South Korea was to find a cure that meant I no longer needed to wear compression…. Its miserable on a hot day and not being able to wear a pretty pair of sandals and show off some nice nail varnish may sound quite shallow when there are so many nasty illnesses out there.. but sometimes the small things matter the most.

I feel a considerable improvement after my first top up and really wish that I could have a second, which would make 3 treatments in all, but time is running out fast before I finally leave the shores of South Korea. Who knows? That final top up may have completed the missing connections needed to prevent lymph fluid escaping into my calf.

I thought I would check out some options in the UK that may be available to me and came across 2 possibles. The first one is 30 miles from my home town:-

http://www.karrilymphoedemaclinic.co.uk/

http://www.karrilymphoedemaclinic.co.uk/vascularised-lymph-node-transfer

and this one;-

http://olp.surgery/consultation.php

http://www.dailymail.co.uk/health/article-2305937/Lymphoedema-Tiny-bypass-relieves-misery-swollen-limbs.html

This above is a 3 year old newspaper article about the success for a patient.

Remember, I am looking for a full repair of this condition, that is, the freedom from wearing compression garments. Now Dr Shim has got me to the point of as little stray lymph fluid as possible, and as I can’t fit in a third top up, what else could make this happen?

I hope to further investigate these options to see what guarantees they can give me. I have my doubts as to whether they can help take me to that final place, as Dr Shim and his stem cell therapy has done such a good job so far, plus this statement is made in the article from 3 years ago.

“This technique won’t cure very bad Lymphoedema, but we can reduce the complications, make the limb feel softer, and reduce the swelling.”

Stem cell treatments continue to collect bad press in the USA, due to the inconsistent regulation. Paul Knoepfler’s informative blog puts his finger on the issues..

http://www.ipscell.com/2016/01/fda-warning-points-to-tougher-regulation-of-fat-stem-cells-clinics/

Dr Shim is concerned about those doctors who are tainting the positive effects of stem cells with their poor and untrained practices. He is visiting 2 worldwide conferences this year to try to see what is going wrong and to talk to doctors who can be trusted and are qualified.

His advice to you before going ahead with any surgery for Lymphedema, check if your chosen surgeon is ( these are his personal opinions) a successful lymphedema surgeon and can show you evidence that they:-

1. Can do microlymphatic surgery for the reconstructive lymph operation
2. Should know the hemodynamics and can do vascular surgery…. vascular pressure is much higher than lymphatic pressure
3. Understand that vascular anomaly or venous hypertension should be corrected before lymphatic surgery.

These conditions means your doctor should be well trained specialist in plastic surgery and vascular surgery.

He is not interested in damaging his reputation by meeting those that don’t fit this criteria.

He is in regular contact with Dr. Brorson from the Lymphedema field and keeps in touch with an expert stem cell researcher in Harvard medical school and the former president of IFATS in the stem cell field.

http://lymphaticnetwork.org/ask-experts/e/hakan-brorson

http://www.ifats.org/stem-cells-journal/

http://onlinelibrary.wiley.com/doi/10.1634/stemcells.2008-0031/full

I found this following useful article on identifying latent lymphoedema, that is, spotting early signs of early Lymphedema before it manifests itself. This means you can take a little better care of yourself to prevent making it worse.

http://www.sciencedaily.com/releases/2015/12/151218161426.htm

I hope you find some of this information useful and I will try to write one more time with Dr Shim and Evelyn’s updates before I leave South Korea ( unless North Korea see me off first!)

Well, here we are…

Tags

adipose tissue, Compression garment, cure, Dr Shim, Korea, Lipedema, lipodema, Lipoedema, Liposuction, Lymphedema, Regenerative medicine, Seoul, south korea, stem cell therapy, stem cells, Yonsei S Hospital

It’s almost a month since the last post, you must be wondering how Evelyn is doing.

She is good! She still has some sore areas on her thigh and foot where an infection entered the iv points, but they are slowly improving.

Her leg is also adjusting to its reduced size and she still has some pain on walking that was there before the operation. It was a possibility that this was caused by her gait and corrective walking to deal with the extra weight of the leg.

Let’s hope that it improves for her soon!

My additional stem cell work has caused my legs to feel so much more comfortable. I have stopped wrapping with bandages at night now.

When I am wearing compression, it’s as if there is absolutely nothing wrong with my legs. I even caught myself crossing them and had to undo them! Normally, I would feel the lymph flow being interrupted and there was nothing like this.

I used to dread meals out or a night of socialising, as after 2 hours or so, I had to move, as I was so uncomfortable. I would have to walk, or just jiggle my legs under the table and fidget until it was time to go.

Now I seem to be able to last a lot longer before that horrible, heavy feeling starts.

When I choose to sleep at night with no compression, however, I lay on my side with my knees together and they hurt. I sometimes wake and feel that I done some damage, taken a backward step. The point where they meet is the point where they were originally damaged by the surgeon.

When I stand up and walk, it feels as if the area of Lymph sodden flesh is a much smaller area, but it’s kind of more ball shaped, than seeping down inside my leg. Does that make sense? It’s a little hard to describe, so maybe I should say it feels like a smaller area, with greater pressure than before. But nothing is dropping down into my foot…

I have no proof, of course, without a lymphoscintigram or equivalent test and it could be psychological, I agree. But- overall, things feel much, much better.

In my opinion, I think with this kind of perceived progress, at this point in time, I would need another top up to ‘finish the job’ but I cannot be sure…..I am not a medical person, I just know what I can feel..

So,  here’s some great news for those who are waiting for the medical world to make some real progress on finding a cure for lipoedema and lymphoedema…. a huge start to allowing the current experts move things along for us!

Finally- I hope you all enjoy the seasonal holidays and may your God keep you safe and well.

Catch you in 2016!

Evelyn’s Update

Tags

adipose tissue, Dr James Chang, Dr Joseph Dayan, Dr Marga Massey, Dr Shim, Lipedema, lipodema, Lipoedema, Liposuction, lymph node transfer, Lymphaticovenular anastomosis, Lymphodema, Regenerative medicine, south korea, stem cell therapy, Yonsei hospital, Yonsei S Hospital

If you are following this blog, you will know that Evelyn, the American patient, is currently here in South Korea, having her lymphosuction and stem cell operation. Here are her latest words:-

Nov. 10, 2015 – D Day

Six am, nurse came in with her trolley for an IV in each arm. Took a shower first and wet the whole bathroom. Saline bag drip by 6:30 am. Two bathroom breaks – those two cups of juice must have been laxatives….

Dr. Shim came in and mentioned that his congregation of a hundred people are praying for me. I have to check his website. What a kind and caring doctor.

Apparently Val told him about my back issues and the effect the hard bed was having. He said everything will be alright, except he was concerned about my transplanted kidney. Mrs. Shim, a very nice lady, also came to wish us luck, as she’s assisting at the operating table.

At 7:30 am I was asked to walk to the OR with two nurses. It was on another floor. The OR is not that big but it was well equipped. A male nurse ushered me to the operating table and started to shave the right part down there . A total of five nurses hovered over me and one asked about urine output during the operation. So I said I didn’t understand how I could urinate laying strapped.  They had to call Dr. Shim. It was catheterization!

I was injected the anaesthesia and off I went to dreamland……

…..I woke up in my nice softer bed, but in no time the pain came. It was mostly in the upper thigh near the groin area. I couldn’t move an inch without softly crying in pain. I had a painkiller tube hanging by the saline bag. I kept pumping but there was no relief until the nurse injected another painkiller unto the iv.  Three more bags (pints) of blood was also transfused because Dr. Shim said my haemoglobin was a low 8.  This has always been an issue with me.  He proudly announced that 8,500 cc has been drained from my leg.  More will ooze out from 7 to 10 days.  He was very happy with the outcome and I just kept nodding in gratitude, but felt lost in a haze of chemical weariness.

Another intermittent sleep while I leaked on the padding of the bed. Breakfast came but I had no appetite. Just forced myself to eat some porridge.  I slept for a very long time.

I could see, bandaged as it was, that the leg was so much thinner. It had large bumps here and there but found out that they were extra paddings in the punctured areas.  The realization was a thrill to feel that lymphedema can actually be treated by a most special surgeon.  Stem cell is the added feature which the medico-science world is presently in a scramble to perfect its methods.

 Nov. 11, 2015

This is my second day after the operation. I absolutely loathe food.  It may be my diverticulitis which hasn’t really been diagnosed as such.  I try to think of favorite dishes and I’m nauseated at the images.  Dr. Shim has been utterly understanding and ordered some other fare – coffee, orange juice, sandwich, soft bagel, cream cheese and jelly.  I ate half a bagel.  When my husband came, he ate the rest.

Two changes of bandaging a day keeps Mr Kim, the young man in charge of bandaging, in good practice.  There were five multi-colored pills given twice a day.  I asked what they were and could only understand, painkiller, vitamin…  Restless sleep, so stayed up with email and FB.

Nov. 12, 2015

Woke up late at about 8 am with the nurse nudging me to check vitals. She probably thought I completely passed out because she usually comes in at 6 am.  I ignored breakfast and ate my half-eaten bagel and leftover coffee.

Another bag of saline followed by a most painful intravenous mix of vitamins B and C. That was mean.

Routine two re-wrappings and constant vital check-ups. I had a low-grade fever.  A bit worrisome for me because my nephrologist has always cautioned me to call him or get admitted at the ER.  Two icepacks under each arm and the fever went away.

Dinner was the usual watery warm rice porridge. I munched on the lettuce leaves and I threw it all up.  Quick reflex with one of the larger covers of food containers on tray, or it would have been a gross incident for my nurse!

Nov. 13, 2015 (Friday the thirteenth, has always been lucky for me)

Got up early, freshened up, put on some powder and lipstick and was ready for the world.

Dr. Shim was very pleased with me today. I looked cheerier, no pain, no fever, and was walking better (with the walker of course).  The doctor was in his usual chatty mood and said, “If they do this treatment in America, they’ll be afraid because of your donated kidney.  You are a high-risk patient.”  No truer words were said.  I sensed this from all the doctors I saw.  Even my dentist was reluctant to give me an implant.  I told him to speak to my nephrologist.  The doctors who specialized in lymph node transfer drew the line.

Dr. Marga Massey of South Carolina admonished me “To contend with my lymphedema and not lose a more precious thing as a kidney.”. Why didn’t she say that in the first place, on the phone, instead of having us travel 12 hours to South Carolina and back? I gave her a novel of my health situation, talked to her patient relationship assistant for hours, had a long consultation with her when we got there, I was examined, x-rayed and had a lymphoscintography, and was photographed at every angle.  Dr. Marga was a charming physician and butter won’t melt in her mouth. At the end it was a let down after heightening my expectations.

Next was Dr. James Chang of the renowned M.D.Anderson Hospital in Houston, Texas. He was a distinguished looking Asian gentleman who was a little too formal and direct.  He also made me travel, after all my weary story on paper.  At least it was only a ten-minute interview and he discouraged me from the outset.  Too costly, multiple visits, too risky.

Lastly was the softly-spoken Dr. Joseph Dayan whose presentations mesmerized me, but he was in Los Angeles. Dr. Dayan was very young, tall and kind.  The minute I heard he was coming to Beth Israel in New York, excitement rose up again.  I had three very long visits with him.  Time passed at the waiting room.  I went through a thorough MRI that required a long travel and waiting in Manhattan.  Our final talk was his benevolent remark that because of my kidney transplantation, he was not in his comfort zone to do a vascularized lymph node transfer.  He said he wanted statistics to mount up and maybe he could do it the year after.  He promised to call and when that happens.  I don’t know where he is now.  I tried getting copies of my MRI from his office but Beth Israel said there was a fire that destroyed all of Dr. Dayan’s records.

Conspiracy? Funny how before all these visits I consulted a member of a team of vascular surgeons of the Long Island Jewish Hospital and asked why they do not do the lymph node procedure for lymphedema.  He bluntly said to me, “Because it doesn’t work.”

My nice cooperative husband brought me dessert-like bread, apples and two big bottles of orange juice (I did ask for two bottles, but not the giant ones). I said I felt like a burger so off he trudged to Burger King.  Korean shredded bulgogi style beef is not the evil hamburger I know in the States.  He ate my Korean hospital food and was happy.

Hello Ambien – if I don’t take you I won’t sleep because now I’m back to almost normal..

I will post Evelyn’s next update here when it is available, but in the meantime, here is her amazingly transformed leg….I have her full permission to share these immediate pre op and post op pictures…..what an incredible transformation….

Wishing you a swift recovery, Evelyn!

For those seeking a support network, or more information on Lymphoedema, click here..

The American patient

Tags

adipose tissue, Dr Shim, Gangnam District, Lymphedema, Regenerative medicine, south korea, stem cell therapy, Yonsei S Hospital

Monday has passed and my stitches are gone, too. My husband reports that my ankles are looking a little trimmer than before and on inspection, Dr Shim is very happy with the outcome of his work. So am I!

But the highlight of the weekend was meeting Evelyn and her charming husband. They are a lovely couple who have travelled over from New York to address Evelyn’s lymphatemous leg, which has been the result of surgery and a kidney transplant, in 2003.

We went for supper to a delicious Korean beef barbeque and chatted over the coming events and learned much more about each other, face to face instead of via email.

Evelyn told me that she was suffering from low back pain and struggled to walk with a leg that was far too large and heavy for the rest of her tiny frame. It’s easy to see that any lymphatic tissue reduction is going to alleviate that problem, as well as maybe allowing her the pleasure of wearing pretty dresses again and not having to search for shoes in odd sizes.

Evelyn has been keeping a mini diary, which she has allowed me to share with you, so here it is up to the point of the night before surgery:-

Nov. 5 – Arrived in Seoul from NY, at 4:25 p.m, with husband Bobby Alvir

Nov. 6 – Met Dr Young Ki Shim for a two/hour intro. The good doctor explained the procedure, while delving into my whole health history.  This was followed by pre-operative exams from vital stats, EKG, blood and urine tests.  I met one of Dr Shim’s patient’s, who had the procedure a year ago. The Korean lady had real normal looking legs now.  My husband and I were so impressed.

Nov. 7 – 9 Stayed at the Inn the City-Serviced Residences which was around 200 feet away from Yonsei S. Hospital. We took two sightseeing tours but it was an all-rain weekend.

Nov. 8 – Rained in.  Awaited Valerie’s arrival at 6:30pm then we all went to a Korean barbecue restaurant.

Nov. 9 – Spent a great time with Val, a little sightseeing, a little shopping and lunch.

Stunning colours at City Hall

King Sejeong, inventor of the hangeul alphabet

Admitted to Yonsei S at 3 pm.

Had a large tray of Korean food: tiny dishes of veggies, a piece of stewed fish, a big bowl of chicken and rice soup with a large chicken breast and ribboned egg, wild sticky rice, a soupy curry dish and salad.  Vitals were taken plus a skin allergen test.

Given a cup of sweet lemon-ginger mix then another one that tasted like Coke. The nurse shook her head when I asked ”- Coca cola?” Val thinks it’s a ginseng based sweet drink, full of healthy nutrients.

Evelyn and I stayed in text and email contact this morning and I can tell you that the operation has successfully been completed and Evelyn can update you in her own words in a couple of days!

Stitches to go!

Tags

adipose tissue, Compression garment, Dr Shim, Lipedema, lipodema, Lymphodema, south korea, stem cell therapy

It’s been 12 days since my stem cell top up, with adipose tissue removed from the tops of my arms for collection of 50 million stem cells for placement in my lymphatic calves.
My stitches need to come out, they are pulling tightly but the bruises are faded to a delicate shade of acid green.
I am travelling up to Seoul tonight for an appointment with Dr Shim on Monday, but tonight I will be meeting the third western lady to have the stem cell treatment, Evelyn.
I will check with her how much information I can put on here, but I am hoping we can share her progress, too.
So, my legs are looking really neat and my arms are nicely reduced. I am wearing compression level 2 tights and wrapping my arms at night in good quality bandages. They are very comfortable and reassuring to wear.
I have got back to walking 10-12km a day and at night, if I’ve been sitting too long, I have to move to the floor and do some leg exercises, with a tiny pilates ball resting in the small of my back to protect my spine. By lifting and lowering my legs, I get the added bonus of tightening up my stomach muscles too.
I will report back after my Monday appointment with Dr Shim and a special evening meeting my email buddy in the flesh.

Being a lizard might be easier…….

Tags

adipose tissue, bandage rolling devices, Compression garment, cure, Dr Shim, gangnam, Lymphedema, Lymphodema, Saline Assisted Lymphosuction, Shim, south korea, stem cell treatment, stem cells, Yonsei St Hospital

I am back home, resting after a very exciting few days in Seoul, having my stem cell ‘top up’.

Not everything went to plan of course… I was hoping to meet with Evelyn, the lady who is coming over from the USA to have her op, but her insurance approval was delayed and our paths failed to cross at that point.

We are, however, in daily contact and she is heading over this way very, very soon.

The other lady who had her operation in September is thrilled with her results and the three of us report into each other on a regular basis.

So – back to the 28^th October….

A chilly bright day at 9am in Gangnam and what a joy to see some familiar nurse and caretaker faces, welcoming me back into the ‘family’ hospital.

Everything felt so homely and I knew I was in the best hands. My room was the same one as last time, but with a nice new window to block out night noise and a pretty blind. Someone was missing though… Ajumma! Do you recall her trying to force her way into the bathroom when I was ‘busy’ so she could fill her bucket of water…. ?!

I still have this hilarious vision of her arm pushing the door as hard as she could to get in- and me standing there with certain parts of me exposed to all!

She had been given the sack for her feisty mop wielding activities and little decent cleaning. Sorry, Ajumma – but you had to go! The new lady is absolutely lovely and very friendly, like everyone else. She also does a much better job.

I had my pre- op photos taken and the measurements showed a general increase of around 2cm in my thigh and knee areas since my last measurements. I’ve put on about 5kg, half of what I lost. ( …and Christmas is coming…..)

Dr Shim noted 3 areas of fat deposits (I have Lipedema, too) over my knee, behind my right thigh and on my left calf. The latter is the area where I am alleging a surgeon cut through my healthy lymphatic system during a cosmetic surgery operation. The case will conclude on my return to the UK, so I’m not saying too much just now.

We had agreed that I would have a small amount of fat (1500-2000cc) extracted from my upper arms to use to create around 50 million stem cells, using the Korean Huricell machine. This is fully patented and approved for use under the Korean Food and Drugs agency. Half of these would then be injected into my calves and the remainder returned as an infusion, to whip around my system, in the theory that those injected would stay in situ, supported by a new hydrogel solution that was added to the ‘magic broth’.

But this kind and compassionate surgeon also said he would move the aforementioned lumps, too, so I had a neater finish and a true tidy up.

I then had a thorough ECG, blood and urine tests and an xray. This body was ready for action! A drip and intravenous line, with a pre- med injection in the buttocks for good stead and I was in my Korean hospital PJs….both excited and nervous.

The clock ticked around to 10:50am and I was escorted down to the theatre. The prep went on around me and my nerves rose a little high. That third area on my calf was ringing alarm bells, so when Dr Shim appeared all gowned up, I asked him to leave that one off the list of touch ups. He fully understood and there was no problem. I had got it into my head that it may be further damaged for some reason…I’m sure it would have been fine, but I relaxed as he realised it seemed important to me to leave it as it was.

The big theatre lights shone above me and I felt the soothing sleepiness creep up my arm as the anaesthetic entered my bloodstream….

And a mere 90 minutes later, I surfaced back in my room, with my wonderful husband and Dr Shim smiling and chatting together. All was well and the results were good. I was bandaged up, but felt so comfortable and drifted back in and out of sleep, with Steve holding my hand, laughing at my deep snores!

It wasn’t long before the drugs finally left my system and I got up and went to the bathroom. A cold drink of water sip by sip revived me and Dr Shim popped back in to check my recovery progress.

I have to say, Dr Shim is a very approachable and understanding person, with a deep passion to help those with Lymphedema and a true skill at reducing those swollen limbs to a normal size. If you don’t have Lymphedema, I can’t explain to you how the desire to look ‘normal’ over rides everything. No more stares from people, no more- ‘what did you do to your leg/arm’ questions, no more behind the back sniggers about fat legs.

Being average beats standing out in the crowd for me!

And if those stem cells do the repair, no thick, hot tights to be worn every single day would be my golden crown…. The holy grail….

A couple of hours later, those stem cells came back home me via this machine and I silently prayed they would work, for me and for all those with this miserable condition, who came to Dr Shim for help.

“Go, little stem cells- do your best!”

A good night’s sleep, and a tummy full of restaurant quality Korean food prepared and delivered by the nutritionist and I awoke at 5:30am, a little stiff, but fairly pain free. I looked down at my left hand and was horrified to see how big and puffy it was! My heart sank…. Had I given myself Lymphodema in my arms now? Maybe I really did have a weak lymphatic system after all…I anxiously loosened the bandages and visibly watched my hand deflate back down…… oh – the relief! It was just all the padding and bandaging, which were all changed at 9am.

There were of course, some rainbow bruises, but nothing spectacular revealed by my bandage change, but on the whole, I felt pretty good! Steve kindly took charge of my suitcase and he brought some packs of fruit for the lovely staff. I gave the nurse a big hug and thanked her for looking after me so well. I missed the other nurse at staff change, so I hope the message was passed to her, too.

Dr Shim told me he had been in conversation with a lady who had been to Germany to a very famous Lipedema surgeon who also carries out this process, ( but not for Lymphedema ) and she had felt she had totally wasted her time and money and had been given poor results. Only a minimal amount had been taken and she was expected to go back and have each half of a limb done in a number of sessions. Her lipedema fat returned within a very short time.

Dr Shim’s method is to do the whole lot, in one go. Results seem to be much more permanent.

He said the lady had tried another surgeon in Europe and had a second attempt, which at this point seems to have worked for her.

He also showed me his new toy! A really clever device that automatically rolls bandages, It’s so simple and so clever. I had a little play myself and loved it. If you are a person using 10+ bandages a day, this is a must, so much time is saved!

“So simple, so useful!”

Day 1

Today is day one and I am struggling to wrap my own arms up with bandages. I thought legs were difficult enough! But I’m getting better at it. The bandages are needed for the next 10 days or so to compress the skin back down and give me a neater finish where the fat was removed for the stem cell supply and to keep the stitch areas clean. I have 2 stitches per arm and 2 on my right leg. They can come out in about 10 days. I have medication for 3 days and then over the counter pharmacy medication can take over if I need it. Ah well- its Halloween and I have my bandage costume ready- here comes the Mummy!

My dog and I have walked for a couple of hours, around 8.5 km. We usually manage 10-12km, but moderation is required…

I have to say, my legs feel totally fabulous! I have my normal compression tights on, but everything feels lovely… they are very comfortable. My arms are a little sore and prickly, but even being pulled along by an enthusiastic squirrel chasing dog hasn’t caused me any problems.

I will avoid carrying heavy bags and be most careful not to add to the lymphatic load for the next 90 days or so…. I don’t want to undo any potential new cell growth or repair. No big hills, no big staircases, no running, no hot baths, no overtight clothes- moderation in everything.

There’s something to be said about being a lizard- how come they manage to regrow a whole tail or a limb?!

More in a couple of days….

30 week follow up consultation – positive things.

Tags

Compression garment, Dr Shim, Gangnam District, Lipedema, lipodema, Lipoedema, Liposuction, Lymphodema, Regenerative medicine, south korea, stem cell therapy, Yonsei S Hospital

You may recall my last post pointed out that I didn’t feel as if the stem cells had worked. Inside, if I removed my compression, I thought I could feel the lymph fluid slide down to my foot. The fluid is evident in my foot, for sure. But I couldn’t confirm if the sensation was fluid, or the nerve damage returning. Fibrotic tissue forming after surgery can increase the sensation, too.

The insurance company will not cover a second operation, not even to take away the last areas of lipodemic tissue, stating that the operation is “unorthodox” They won’t cover a Lymphoscintigram for us to check progress, as it is “not necessary”

I set off for my June follow up appointment with Dr Shim, to hear his thoughts on this and discuss further.

He took the measurements as per usual and you can really see the reduction in volume. I had put a little weight back on after my trip home to England, but it will come off again over the new couple of weeks. I was still very pleased with his work, but there are pads of lipodemic fat returning from the areas where it was not completely removed, and they are growing larger. In fact, on the back of my right thigh, when I sit down, I can feel the pad of fat and it is tender.

We marked the areas where the lumps were and Dr Shim injected them with instructions to massage them each day. The injections would help break down the fat  molecules, to make them small enough to be removed via the bloodstream. Sure enough, they have melted away. Massaging at first was painful, but as the areas got smaller, the discomfort reduced. 10 days after the injections, I still have a few bruises, but those growing lumps have mainly gone.

The routine sonogram revealed that my right calf (still larger than my left) was devoid of fluid. The left calf also showed no fluid. But it is still pooling in my left foot, but not as much as before. There was some present after my train journey, sitting still and not elevating is not good for lymphodemic limbs.

I’m not sure why the problem has gravitated into my foot, and I couldn’t really find any information in Foldi’s book of Lymphology and some of the support groups for Lymphodema and Lipodema were nonplussed.

Dr Shim pointed out that enthusiastic bandaging or compression may be stopping the fluid escaping back up. Capri length and open toe garments can do this, too. The end of my new Jobst open toe compression garments sits tightly across this area and is uncomfortable at night, when blood pressures fall as we lay prone.

He was excited to see that there was no fluid in the calf areas, but I am aware that compression and MLD can result in this, unless they are stopped, then the fluid builds up again.

Even those who have had lymph node transplants report that they have good results, but compression is still needed, as there is no known cure for Lymphodema.

On a really hot day, I thought I would take a little gamble….and walk in my finest Korean shorts and sandals along the river, sheltering my legs with factor 50 and see what happened.. A maximum of 2 hours walking, but with no compression.

It was so cool and comfortable! My compression tights have become a comfort blanket of sorts, for some reason, my legs feel wobbly (and look wobbly! And ghostly pale!) as if I can’t walk without my tights. I can’t explain this. But the refreshing breeze which my legs don’t feel under tights and trousers was so nice! We picked up the pace and I strode out, comfortable and no pain, no gravitational pull from fluids.. maybe because they are already in my foot? I don’t know. I hadn’t compressed the lipodemic thighs, either, which is a bad thing, as the fat cells are free to come out to play and expand!

I forgot about my insides and we wondered around the tents being erected for the whale festival taking place next week.

That evening, I decided to go to bed without any compression garments on. Again, my body temperature was normal ( no hot flushes to wake me!)  and allowed me to sleep undisturbed. When I awoke next morning and checked my feet out, I was amazed to see that the fluid in my foot had virtually gone.

I have tried this a couple of times since, with the same success, but always for only 24 hours or so in every 3-4 days. If any new connections have formed, I don’t want to undo the progress.

Here, you can see what I mean…look! no tights!

 

First thing in the morning.

After 2 hours walking

In the evening

24 Hrs later, veins evident

I will continue with this for now and report back on any changes, good or bad. Happy days!

So- did I find the holy grail for Lymphodema here?

Tags

Lipedema, lipodema, Liposuction, Lymphedema, Lymphodema, south korea, stem cells, Yonsei hospita

Have I been cured of Lymphodema?

Nope…no.no.no….nada…..anneyo. If you are looking for a cure don’t rush over here yet, folks, wait a little longer, because although it’s not worked for me, there’s more to the exciting stem cell story…

After attempting to wear capri pant length compression garments for one day, whilst we had visitors, I was in agony. Too much sitting and not enough walking meant my legs swelled, I couldn’t settle and I had to resort to bandaging and trying different ideas to get the fluid back out of my foot and ankle.

Anyway- I tried to make it look pretty..!

 

My parcel of Level 3 compression garments from a supply company in the USA were held up in customs…originally thought to be lost, but once I got someone to help me through the language barrier, things became clearer. Apparently I should get them soon.

But – clearly, the stem cells haven’t worked in one session. I’m sitting here typing and I need to elevate my leg- gravity is pushing that fluid down, down, down…

How disappointing! How frustrating! So near and yet so far….yet- in theory, they should have taken…..

These links show clinical trials in adipose stem cells beginning to happen for other degenerative diseases.

And this one, showing that heart cells are being regrown as a reality…although they are not the same as my simple adipose stem cells, the possibilities of repairs are here.

This link shows that utilising a medium to hold them in place would be a step progression, rather than them being too quick to leave the area that needs fixing…I personally wonder if this is the missing element to success…

So, people looking for a cure for Lymphodema, please be patient… it’s coming, I’m sure… its just not here yet.

In terms of what the other changes have been with regard to conventional Liposuction treatments- here’s a picture of my legs at April 2013…the lymph fluid in my calves makes them look larger than my thighs. Then, menopausal hormones, and very hot weather set off the Lipodema..

Here’s the shape change that happened in a matter of weeks… the thighs and backside and upper arms have ballooned…classic Lipodemic shape!

And finally, the latest photo I have of myself.

You can’t deny the Liposuction has worked so well for me! However, you can see the area over my left knee, which needs a tidy up. The Lipodemic fat is also returning back up at the top and inside of the thighs and the ankles. This is because not all was removed in one go, as Dr Shim had reached the safe limit- any more and my health could have been at risk. I have compression tights on and still cannot manage without them. The insurance company won’t pay for the final operation, despite me explaining how a series of operations are usually carried out in Europe.

I have my next appointment with Dr Shim on Saturday and I will chat things through with him. But, just right now, I’m sitting tight and taking my time before making any major decisions… and maybe – just maybe- I will have to consider this..

But sometimes things can look different with a few tweaks – and time… never give up…the sun hasn’t gone down on me yet!

 

Mid follow up appointment update

Tags

Compression garment, Dr Shim, Korea, Lipedema, lipodema, Liposuction, lymph node transfer, Lymphaticovenular anastomosis, Regenerative medicine, south korea, stem cell therapy

The best laid plans of mice and men…. I should have been on a plane to Borneo last Saturday, but one of my faithful little dogs is suffering badly from the effects of the Beijing dust cloud, which has been unavoidable on our long walks. She has been to the vets and is on medication, but is banned from walking far for the next week or so.

We have been so lucky in that the hotel and Korean Air have allowed us to move our dates back a week without penalty. Lucky in that, the second dog went down with it a few days ago- but they should both be ok and well again for us to have our break!

You’re probably thinking it’s a bad idea for a person with Lymphedema to go to a high humidity country where there are biting insects- and you are probably right, but I have a love of wildlife and can’t wait to see the Orang Utans in their natural habitat. I have packed all that is necessary to protect my legs- I assure you!

So, that messes up my next follow up consultation with Dr Shim, so my next update on this will be just after April 5^th, the new date.

In the meantime, I can report the following:-

Positives

Hot sweats- much reduced- phew! This is such a relief, as the temperature will soon start to rise over here- Spring is almost here.

The nerve pain in my left leg- Gone! No more! Dr Shim cut out the fibrotic tissue that was attached to the saphenous nerve and the tingles, shooting pains and I can kneel on that leg if I choose to, it’s just still like a thick layer of cotton wool as the nerve damage has killed the sensation in my shin.

Weight loss- slow and steady- and I am completely avoiding white refined flour goods and bought some buckwheat flour for my pancakes. The occasional sweet potato gives me some carbohydrates, as do bananas and my daily breakfast cereal, but apart from that, I am finding good results.

Levels of lymph fluid – feeling much reduced and exercise really helps. I am wearing full length compression garments in the day and knee highs overnight.

Negatives

I still get a swollen left foot and little podgy toes… not so good. My shoe feels tight and I have to elevate my leg if we go out for a meal- sitting with the leg down feels bad and so is standing in one place to iron.

I am now at week 15 post op and all effects of the actual operation have subsided- now I’m just waiting for positive changes that may indicate some new lymph connections are forming.

As I hear of much awaited improvements in the health of other lymph treatment pioneers, I wonder if I chose the right treatment. After all, lymph node transplants are being covered by insurance companies in the USA – there must be a reason for this. I wondered if those USA residents on one of the Facebook Lymphodema sites were considering having the procedure and asked the question, but I only had one answer, from lady with primary LE, so not a treatment for her..

Anyway- I thought it would help me get to grips with what there is available out there now, in addition to the long recognised and safe conservative treatments of lymphatic drainage, delivered by a trained and skilled therapist and correctly fitting compression garments.

I compiled this table, which is not exhaustive, but covers the options in terms of the main surgery solutions, as well as a couple of clinical trials. I hope you find it interesting!

Copy of FLNT.STC

I do wonder, though, if all this treatment available, it is only effective because of the previously mentioned traditional therapies used alongside them to maintain reduce volume and create a more comfortable quality of life.  If that is the case, the only winners are the surgeons, because the procedures will still not create a full repair or cure. If anyone out there who has had some of the surgeries and now feels they are ‘cured’ ie. No longer need to wear compression garments (my ultimate aim) please drop me a message and put my mind at rest!

I emailed Dr Dayan, a surgeon on this list, which included a request to put me in touch with a cured patient, as well as a stack of other questions about the treatment, but after 2 weeks, I have had no response. Maybe he’s just too busy or I’m in his spam box… luckily I found a lot of the answers on his utube video, which was most informative. On there, he states that his operation is not a cure, it’s just to make people more comfortable. So, maybe that’s my answer…..

I also found some old blog pages of people who had a form of the LNT as far back as 2009 and asked for an update on their condition. A gentleman who had the procedure in 2012 replied that he expects his repair to take around 5 years, as advised by his surgeon, Dr Campisi and so far he has much less pain and much more mobility. At one stage, before his operation, he couldn’t walk for 4 months..

Dr Campisi in Italy, states 87% of the 1800 who have had the procedure he does, report an improvement – but they not fully repaired…so, should we just be grateful for the levels of relief these surgeries bring….?

Dr Shim loaned me his huge tome called “Foldis Textbook of Lymphology” (2^nd edition, 2006) Ok, so this book is now 8 years old, but everything in here remains quite relevant.

The authors state that “the future holds promise for new approaches- including genes, VEGF-C proteins, matrix modifiers, stem cells, tissue engineering, transplantation, prosthetics”  They suggest that the aims of treatment are to increase reduced transport capacity and to reach a stage free of signs and symptoms and that this can be achieved with Complete Decongestive Therapy – CDT.

And it can- look at these photos ( …Hope I don’t get into trouble for reproducing them here!) It took 10 years to achieve this…

From this

To this, with just CDT

How amazing is that? Everything that is on this list of treatments could probably be achieved without an operation, by a skilled physiotherapist and compression garments and a compliant sufferer. (That is, willing to put up with everything and keep persevering with all elements of CDT for the rest of their lives)

However, skilled physiotherapists are like gold dust and not everyone has access to one. I even read on a Facebook post that one lady had been discharged from her local LE clinic- and was desperate for new compression tights, the current ones had holes in.

And – actually, what we all really want is a full restoration/repair of our damaged systems….

The book also states that all surgery has an element of risk and a potential for complications and the only winners will be the surgeons demanding large sums of money…… BUT- I know more practice at a medical procedure will result in greater success, and more money for clinical trials is needed in the stem cell world, so that there is finally some hope for those with primary Lymphodema… Those currently going through all of these are the pioneers…. If it doesn’t work entirely for us- maybe the next person will benefit from the lessons learned by the failure of the previous….  I really hope so…..

Catch up with you in April!