Being a lizard might be easier…….

Tags

, , , , , , , , , , , , ,

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 28th October….

IMG_1629[1]

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.

IMG_1643[1]

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.

IMG_1668[1]

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.

IMG_1678[1]

“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!

IMG_1712[1]

“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!

IMG_1796[1]

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….

IMG_1573[1]

Something to tell you….

Tags

, , , , , , , , , ,

Well, Summer here has been and gone, thankfully taking the unpleasant heat and humidity with it.

What’s left is a gentle daytime low 20’s, bright blue skies and calm Autumn evenings.

I left you for a while to write some more children’s books about our dog’s adventures in South Korea and these are for sale in e – format on Amazon.

If you want to try one for free, Book no 3 will be free to download on Sunday 11th October for 48 hours. Keep trying from Saturday 10th – my time zone may be different to yours! All you need to do is go to your normal Amazon sign in and search for:- Tails in Korea Book 3. You can download it onto a pc, tablet or phone, you just need the free kindle app to do so. Enjoy!

Ok- (free!) sales pitch over, I need to tell you what’s been happening. Dr Shim has had a couple of English speaking lymphedema patients contact him after seeing this blog. They are from completely different parts of the world- it’s amazing how the internet removes those international boundaries!

So, please expect to read another couple of lymphedema/stem cell stories soon. I will provide links for you to find them once they are written.

We have all been corresponding frequently and answering questions and supporting each other. I would have loved to have visited the first patient and meet her, but it was a big public holiday here and there wasn’t a plane or train ticket for sale anywhere!

It’s a different story with the second lady, as I have decided to travel up and have a stem cell top up at the same time as she is there. Its almost 2 years since my first operation and this will be a very small procedure in comparison.

Dr Shim’s process has been refined somewhat and he tells me he now uses a different Huricell stem cell extractor. He is also using a hydrogel to hold the stem cells in place near where they are needed. This will help stop them swimming off to give me a much needed ( much less priority) facelift or leaving me altogether!

Here’s a newly released article about the effectiveness of this gel.

A basic translation is as follows:-

Professor Kim wooseop at Chung-Ang University Hospital, told the worldwide journal ‘Nature’ that Korean researchers have found an effective way for bone differentiation in treatments using stem cells.

Along with Central University Hospital, (Director gimseongdeok) through the teaching and joint research using hydrogel (Hydrogel) ‘ we found a more efficient bone differentiation process of stem cells over 6 days He said.

Central University study results apply to a range of conditions showing that it is possible for stem cells to differentiate into various cells.

Currently, some of the cells during the transplant process of stem cell differentiation process of the cells die and the precise , delicate controls applied have clinical limitations.

However, If this hydrogel is used, ( a biomaterial) it can form a space to hold the cells in place and increase the survival of some transplanted stem cells, also induce the differentiation of stem cells but how the effect of such in vivo was not known until now.

The team results were gained with experiments using porous biomaterial hydrogels (Void-Forming Hydrogel) ‘cell injection material, in order to develop a material that can form a small space which can be injected with a syringe in this study, in vitro as well as bio. They also found that it is possible to induce bone formation in the stem cell.

In addition, the researchers found through this study that the elasticity of the biomaterial for bone differentiation of stem cells 60kPa (kilopascals) stem cells when bone is the most efficient induction of differentiation.

Chung-Ang University Hospital, Professor of Plastic Surgery Kim Wooseop “expects this will improve the timing of clinical applications in future treatment with stem cells. This gel can more effectively induce the goals of stem cell differentiation due to the findings,” he said.

The findings are “space-forming-hydrogel of the elastic stem cells in the bone mechanism on the differentiation”, published on September 18, Nature journal. (Nature)

( I have everything crossed it does the job…)

This research also sounds promising for the future..

When I visit the hospital, my top up will be as follows:-

I will have some fat from my arms removed: it will be processed to gather the stem cells and these will be grafted into my calf the following morning. I will then be discharged in the afternoon.

Dr Shim has also designed an automatic leg bandaging device, which I’m looking forward to seeing. I will post a video of it in use, so you can see how effective it is.

I asked Dr Shim to give me some statistics and updates to share with you, so here they are:-

From 1/1/15, there has been 256 lymphodema patients, having lymphosuction and water assisted liposuction.

In addition, 15 have received stem cell therapy.

I will be the first top up patient.

The MERS outbreak caused a drop in patient numbers for around 3 months earlier in the year, but this is now over and numbers of patients are back on the rise.

I also asked if he had been in touch recently with the boy who had the really bad leg, but he hasn’t. I cannot update you on that case.

I asked about the lady who was fully cured. She is living without bandages and compression garments and is very happy. That’s what I want. That’s what all of us patients want.

I will try to contact her to see if she will come and visit me whilst there are 2 of us in hospital to talk to.

The date of my top up op? 28th October. Back soon to let you know how it went!

Hey- how’s it going?

Tags

, , ,

Greetings from South Korea!

Thank you to those of you who have dropped me a line to see how these legs are doing!

Well, I am still here and as it’s over 6 months since my last post, I thought it would be timely to update you. They are not cured, still, but hey, they are doing just fine!

I have put some of the lost weight back on and as a result, I can feel large lumpy areas of fat under the skin, where before it was just muscle. This is entirely my fault and now I am working to lose it again.

I have found that bandaging at night works to help keep the ankle in existence, I would be heartbroken  if I lost these re-claimed land marks through complacency.

And I still have visible knee caps when sitting.

I will get back into those shorts I wore last summer, though- I have to….and once the weather cools, it will be so much easier. I feel inflammation has a huge part to play, along with delicious iced coffees, which contain the dreaded corn syrup as a sweetener. Avoid this sticky sweet stuff at all costs- it encourages  that nasty white fat and sluggish waste proteins  to stay with you for far too long.

I haven’t been idle during the last and final year away from England-

  • I have been volunteering at a local private English speaking school, known as a hagwon. The children attend each day after normal school and they are learning through conversation and game playing with me. It’s such fun- but exhausting- they are so competitive and lively.
  • I continue to walk daily with the dogs, covering around 10 km. This keeps the lymph moving and my legs tell me when I have been sitting for long enough, even when they are elevated.
  • I have learned to drink water when socialising. Alcohol hurts too much! Let me explain… the local firewater here is called soju. This summer, it has had flavours added, which of course, are totally artificial and make it taste like alcopops- much easier to swallow. It’s taken in a shot glass, downed in one and a bottle of it is as cheap as it comes…. around £.70 or a dollar. It looks quite innocent, doesn’t it?

soju

( Not my picture)

I tried just one shot glass and enjoyed it as a fruity drink, but that night, my legs were so uncomfortable! I don’t seem to be able to cope with any foods or drink that are not ‘clean.’

Even orange juice is too sweet now, and leaves me thirsty. Of course, this means I am always the designated driver home, but hey ho…!

  • I have been recording the adventures of our dogs and trying my hand at being an author! These two little dogs have kept me going out here and it’s nice to be able record their antics. Maybe you have a 6-8 year old who will enjoy the stories. The first book is here on Amazon kindle for free this weekend – take a look and see what they think!

amazon

You can access it via these 3 links, whichever is best for you

Amazon.com

Amazon.co.uk

Amazon.eu

  • I continue to search for information on stem cell treatment progress, which seems so painfully slow around the world.

This article is most positive- a new drug to fast track tissue regeneration

This one states that a way to change stem cells to blood vessels has been found

This one is NOT what you want to hear, but you probably kind of already knew…

And finally, this one filled me with hope for the future- as long is it is genuine… growing new lymph vessels.

There are set backs in the stem cell world as physicians and researchers fake their results and the various Food and Drug agencies clamp down on the definition of adipose stem cells.  Simply- If they are manipulated, its constitutes a medicine which must be trialled in a controlled manner – but where does that leave test tube babies?

The media slate those physicians  and surgeons asking people to pay for their own clinical trials, but there are so few research programmes available worldwide. In the meantime, some exciting discoveries have been made and we need to take a little comfort from the fact that Lymphedema and Lipoedema have raised profiles and people are looking for solutions.

Dr Shim still continues to work miracles on those with lymph filled limbs, but there has not been any other person fully repaired with stem cells, apart from the one I met 18 months ago. She kindly made contact with me through her English speaking son –in –law, to say ‘don’t give up’ but for me, it’s a case of I need to save up.

If I could, I would try a second operation, but this time, with just a little liposuction to get to my stem cells and have them injected into my calves.

I do wonder if the size of the first operation which included liposuction meant that the stem cells went off to calm the effects of the op, rather than start building new tissue and pathways. Who knows… maybe there should have been a top up after 4 months or so…. And this is why clinical trials are needed so badly!

I thought you might like to see a photo of how things are – so here is a picture taken in May this year, back in England…I still look like I have large legs, but they will get slimmer again, they did after my New  Year diet started.

lymph blog

I guess constant monitoring  and care is the key to success- healthy food, consistent exercise, pure liquids, watching weight levels, night bandaging, daily compression tights, but sometimes it’s just nice to forget that I have a condition like this- and just have a normal day. But, none of us go to bed without having cleaned our teeth and washed our face at the very least, so it’s just a longer routine, like flossing and face cream!

I still think I did the right thing for me, for already being in South Korea and not trying to find a stem cell cure where so much medical innovation is taking place….I would have forever kicked myself and wondered if I’d missed the best opportunity.

Take care and stay well, all of you- don’t forget to try that little book of mine this weekend whilst it’s free!

Amazon

One year on- still searching.

Tags

, , , , , , , ,

Well, it is now one year since the start of this diary. This will be the last entry, as there is little more to tell you, I’m afraid.

I have given the stem cells one year to work some magic and in theory, they should have rebuilt some lymph vessels for me, if not all. I don’t know who is more disappointed, me or Dr Shim! He is a very compassionate man and has helped many people who are suffering venous leg ulcers and prevented amputations by applying his knowledge to their illnesses and injuries

My injury was just that- an injury- not a catastrophic failure of my lymphatic system. In theory, then- a small area to repair. It didn’t materialise, and maybe I should organise a top up with Dr Shim, but there are no further ‘repaired’ people to see, to report on, to feel convinced that the method is effective.

So- any regrets? No, not at all! I am happy with where I am today.

better to know

The water assisted liposuction/lymphosuction (WAL) has reduced the volume of my legs; the compression and my health regime are maintaining the reduction until something better comes along.

The weight increase has stabilised, but I’m still fighting hard to lose some of those extra summer pounds.

I have organised a compression foot sock from Juzo- its on its way soon. It will help those fat sausage toes and swollen ankle, I’m sure.

I am a member of some Lymphodema/Lipodema groups and those that have had the WAL in Germany state that the Lipodemic fat has not returned and they describe the cannula movement (they were awake and watched!) was like a violin being played, gentle and flowing. They had no drains and the operations were carried out in stages with a couple of weeks between each leg. They are told that the improvements in their limbs will peak around 12-18 months and that the diseased fat will not return.

Some of those Facebook buddies are going to Germany to interview the doctors to gather more information and interview previous patients.

Other methods are building in momentum around the world and in the UK. Lymph node transplants and vein anastomosis are all options- but nothing is providing a cure – yet. They are, however, becoming available on the NHS, if people can fulfil the funding criteria.

Its so frustrating that the world of medicine hasn’t got to grips with this debilitating condition, but in the 1920’s, the idea of specialising in an area of ill health took doctors away from treating the body as a whole and now they only see a part of it- not the big picture.

I still think stem cells are the way ahead for so many things… even Rafael Nadal, the tennis ace has had some to help his injured back…but as a pioneer, I am sad to report that they haven’t worked for me.

Maybe there is something new in here…

But the lack of significant progress when big money is thrown at research is very frustrating- why? Why is there such little progress?

There has also been some discussion on the effectiveness of this as a pain relief… a little controversial, but if it is prescribed, then its perfectly legal.

So at this point, I leave you all to continue on your journeys through the hurdles life throws your way- just promise me you will keep on getting up and carrying on- because the alternative will be here soon enough. May your God go with you.

Thank you to all those who have taken the time to follow progress,  or to send messages of support and encouragement. If you’ve just come across the blog, I hope it has been of use to you.  I wish you all good luck in your quest to find something that works for you- never give up and most importantly – stay strong, safe and well, in body and mind.

life

 

 

 

 

45 weeks – One step forwards, two steps back

I guess you wondered why I was so quiet… well, its been a lovely, busy summer!

We have had some holidays away and visitors here, so time has slipped away fast. It’s still warm out here ( full length compression is too still hot!) and the summer has had consequences…

Firstly, the heat seems to cause more inflammation and I have had a badly swollen left foot and toes. I need to ask Dr Shim to see if he can help locate a manufacturer to make me some toe caps and an ankle sock, as this is the only place I now have any lymph fluid.

Secondly, long plane trips away exacerbate the above, but I would not have missed those trips for the world. Snorkelling on the Great Barrier Reef ( a bucket list ambition)  helped soothe those swollen areas and the salt was good for the skin! I wish my GP could prescribe another trip for me!

Thirdly, iced coffee drinks, ice creams and less walking due to the heat of the day and entertaining visitors have taken their toll on the thighs.

I can see they have increased in girth and I have put around 7lbs on. This fluctuates as I try to lose it before it becomes permanent. However, it has been sufficiently noticeable for me to cancel my next appointment with Dr Shim.

No point in wasting money and time to record a backward step of my own making! It is a valuable lesson to learn, in that Lipodema is not easy to shift. In the days since our visitors have gone, I have fasted for up to 3 days to clear the fat away, to no avail. I am also back on my low carbohydrate non inflammatory diet- hopefully I will get the weight back off soon.

There has also been a lot of additional pain, in that the reduced walking and additional sitting has caused very restless legs at night, with more hot sweats and sleep has been elusive. Maybe I should have got up and gone for a walk in the cool nights, but that would have disturbed the person who needs his sleep more than me!

I am back to walking up and down the stairs instead of taking the lifts, and our 10-11km dog walk a day is back in place. Thankfully, although the days are bright and sunny, they are a little cooler and the dogs can cope as well as me.

So, enough of me, how about Dr Shim’s continuing work? I asked him how many Lymphoedema patients he had treated this year and if there were any more ‘cured patients’ apart from the solitary lady I have met.

He kindly updated me with the following statements:-

1) Between 2010 and 2013, he has treated 23 patients. There has been many more this year, but he couldn’t recall exactly how many.

2) Of those 23, there has been a limb reduction of 30-110% depending on the severity of the patients condition.

3) Stem cell therapy combined with Lymphosuction for the first time in the world and getting successful results.

4) The stem cell therapy has the effects of neoangiogenesis and neolymphangiogenesis in lymphedema and lower leg necrosis.

5) A safe procedure, it is possible to repeat stem cell therapy every 2-5 years if required, but so far a 100% success rate since 2010.

He also sent me some pictures of dramatic changes in the shape of his patients legs, they must be so pleased! A 110% reduction for some is no exaggeration and those with terrible ulcers ( lower leg necrosis) show healed, closed up shiny pink new skin.

Wonderful!

But statement 5 is the clincher. This is a very expensive treatment, with the patient paying to be part of an experiment ( there have still been no formal clinical trials and no forthcoming papers recording results and outcomes ) Who can afford to keep paying out on a ”maybe next time ‘ basis? The 100% success rate can only refer to the Lymphosuction, as my Lymphoedema is still not cured/fully repaired.

This time last year, the main damaged area was in my left upper calf and knee, with less volume in my right leg, same place and compression garments holding it in place there, in both legs.

After 45 weeks, and for the majority of time since the operation, a little fluid remains in my right leg ( it always was the lesser of the two, a kind of ‘overflow’ leg) and as previously mentioned, the fluid is now in my toes, ankles and top of my left foot.

On the Lymphoedema facebook pages, I have seen comments from others who have had water assisted Liposuction say that this has happened to them, too.

I am not a medical person, so I cannot say if this is a catastrophic failure of the already struggling lymph passages in the knee area giving up and gravity taking over, or if the stem cells are working on building new pathways and somehow needed the fluid out of the way. The other person didn’t have stem cell treatment, though, so I leave you to draw your own conclusions!

I am bandaging at night to get that foot and toe swelling down and give me a fresh start every morning and I can maybe last a couple of hours before I can feel a fizzing, swelling area in my calf, as if there is still a leak and the interstitial tissues are filling up as I move about, or stand up.

I worry about what will happen when I return to the UK and have to find a job… I’m limited to a couple of hours with a leg elevated before I am compelled to move about and shift the building stiffness and pain. Sitting with legs downwards is limited to an hour.

I suspect this is my lot.

But I’m not ungrateful! I still have a much better quality of life and I dread to think what things would be like if I hadn’t had this done. I don’t know what level of improvement, if any, the stem cells have made for me, as I didn’t have a lymphoscintigram to record my starting condition.

What I do know is that I am glad I had this procedure done and I’m glad I wasn’t the one paying for it… as to me- 100% success means no more fluid present and no compression garments needed.

My next post is likely to be my last, as this was a 12 month diary of progress, thoughts and feelings, so I hope to share the situation at the end of November with you.

Please don’t give up on stem cells, though- I still think they hold the key to repairs and regeneration of damaged bodies, its just that there is no money in ‘well’ people for big pharmaceutical companies…they make medicines to keep you alive but still sick….reliant on their product for survival!  If they were to give you something to cure you- the money stops coming in!

We just need time and other people’s money to get there..

Stay well and stay positive.. because what’s the alternative!? And for those with a cheeky sense of humour and have found out how alcohol has a very negative effect on your limbs- I hope this makes you laugh!

alcohol

Here’s some interesting links for you to check out…..enjoy!

1) The Lymph system

2)How Sonograms can distinguish between Lipodema and Lymphoedema

3) Cell therapy in Brazil

4) Stem cell treatment centres in 2014

5) Taking human cells back to pure stem cells

6) Lymph node transfers – a comparable treatment to this one.

30 week follow up consultation – positive things.

Tags

, , , , , , , , , , ,

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!

 

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

, , , , , , ,

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..!photo 2 (2)

 

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..

photo (88)

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

3009 - Copy

And finally, the latest photo I have of myself.

unnamed[1]

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..

295

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

photo (393)

 

Lipedema/lipoedema Awareness Day 11 – Profile: Dr. Josef Stutz

Dear all, you are probably already aware, but June is Lipodema awareness month.
I’m re -blogging this for all those who have asked me about Liposuction, for Lipedema and Lymphedema… but there is a whole month of useful facts and information.
Please take a closer look at Catherine’s blog….

Lipedema Simplified BLOG

There’s more to the story: there may be more WHYS to body SIZE!
(note: today was catch up from jet lag)

Dr Josef Stutz reviewing information on lymph-sparing liposuction for lipedema/ lipoedema with his wife, Jutta, illustrating pre/post op treatments of endermologie.

Comments and feedback most welcome! Remember to spread the word about lipedema. For more info http://www.lipedema-simplified.org

View original post

Week 26 – 6 months on

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.

stem cells flyer

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?!

Week 20, between appointments

Tags

, , , , , , , , , , ,

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…

036

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..

www.http://retractionwatch.com

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!

001