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orang utan

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 5th, 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.

photo

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” (2nd edition, 2006) Ok, so this book is now 8 years old, but everything in here remains quite relevant.

004

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…

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!

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