The Next Step of my journey… 14 months post surgery

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Just a quick update to let you know I am staying at Mt Wilga rehabilitation hospital in Sydney. The internet connection via Telstra is not good!!! Very slow and drops out!! I am here for a review of my leg at this stage and to have intensive treatment to see if the swelling in my knee settles. Very happy with lower leg which looks “normal”. Each day I have MLD, laser treatment and then re wrapped as in the picture. (Complex bandaging) Bandaging remains on 24/7 except to shower. I have a Gym program to help stimulate the lymphatics and would also be doing a pool session but this has been vetoed due to low blood pressure. Instead I am walking a lot in the area of the hospital. I am learning new MLD techniques and will be measured and assessed for a new compression stocking as the leg has changed.

I think that the hardest thing with this LNT is the unknown. Where are we up to? Where are we going? What do we do while all that happens? Sadly there seems to be no set protocol for post surgery, every doctor seems to be a little different. I am very glad to be able to stay here for this treatment. I am able to focus totally on healing and improving my Lymphedema.

When I have better internet I will write more about this stage of the journey. This is 14 months post surgery. I am to be here for three weeks, so happy that the staff are lovely, my room looks onto a garden and is very spacious and to my health fund for paying!!! I have much to be grateful for..

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32 thoughts on “The Next Step of my journey… 14 months post surgery

    • They have a fantastic program and it is nice to just focus on me and relax.. Will see how we are at end of third week… I imagine i am in one of those European clinics!!!!

  1. Dearest Helen,
    Enjoy the pampering, the R&R and the time to be able to focus just on YOU! How wonderful to have such a program available to you! I wish we other lymphies could be there being treated with you . . . oboy would the time fly by!!
    With much love, Leslie xoxo

    • Wow we would have a ball!!! All hobbling around together in our special shoes!!! There are other Lymphies here but no one I have a special connection with… No other LNT!!! Hope your healing is on track… Much love miss you too… Helen

  2. What a wonderful place. Hope your healing continues. Growing a lymph system is like sitting and watching a tree grow. You can’t see anything exceptional happening, but all of a sudden things are better!

  3. I thinks its wonderful that you are able to focus on treatment and be pampered at the same time🙂 Post pictures of your leg!!

  4. Sounds like a great to be able to focus on just you and your lymphoedema and learn lots too. I know everyday is a learning day for us so I imagine you must be finding out some fantastic new info and techniques. As for the view…wow! Enjoy some you-time xx

    • Yes it is the first time I have ever been able to just focus on working on my Lymphedema… Before I was always juggling family, work etc .. Yes refreshing my knowledge of self care as one does get a bit slack after a while!!! Will write a full post on this experience when my internet stops dropping out!! ❤️❤️

  5. Hello Helen,
    My name is Stella and I was born with congenit Lynphoedema on my Left leg. I’m brazilian and until now I had never heard about any procedures which could better my health and reduce the lymphoedema or heal it completely. I’d like to know if you could share the mail contact of your doctor or ask him if he knows of anyone who does that kind of procedure in Brazil or some country nearer than Australia. Thank you very much for sharing your experience and giving me hope. Sorry about any language mistakes.

    • Hi Stella… There are few Doctors in the States who do this surgery who are more experienced than my doctor especially as yours is congenital.. In New York there is Dr Dayan and Smith who are very careful in testing the lymphatics to ensure that there is a good place to take nodes from and where they need to be placed. They have a specialist MRI machine to do this and can map your lymphatics prior to surgery to decide what is best for you… In Australia we do not have this and they do not perform surgery on those with congenital lymphedema.. New York is much closer for you …. These are their contact details10 UNION SQUARE EAST, SUITE 2LNEW YORK, NY 10003212-844-6590… Also in Chicago is Dr Chang this is a link to contact him http://www.uchospitals.edu/physicians/david-chang.html
      Then we have Dr Rockson http://stanfordhospital.org/cardiovascularhealth/lymphaticvenous/team/ these would probably be the three most experienced Drs in the US… How ever These are only suggestions and the choice is up to you.. What ever your decision it is important that your lymphatics are mapped to ensure there are normal nodes elsewhere in your body.. Good luck.. Helen

  6. Olá, Helen. Sou brasileira, como meu inglês é horrível, resolvi escrever em português mesmo. Assim, para uma melhor compreensão, basta utilizar algum aplicativo para traduzir.
    Bem, vamos começar. Sou portadora de linfedema há mais de 20 anos. Eu nasci com uma deficiência no sistema circulatório chamado Síndrome de Cockett, uma compressão da veia ilíaca sobre a veia cava, o que fazia meu tornozelo inchar. Mas, até meus 20 anos, era tudo controlado. Porém, tive uma infecção gravíssima, a chamada erisipela, depois de uma temporada na praia. O fato é que não foi dada a devida atenção a essa infecção, e minha perna esquerda nunca mais foi a mesma. O inchaço aumentou, e uma nova doença foi diagnosticada: linfedema. Fiquei arrasada, por saber que não tinha cura. Fiz alguns tratamentos como drenagem linfática, bandagem. Mas nenhum resultado satisfatório. O volume diminuia, mas ao ter alta, voltava a inchar novamente, para meu desespero.
    O tempo passou, após várias outras infecções, minha perna ficou totalmente deformada, o triplo do tamanho da outra, a dificuldade de mobilidade cada vez maior. Acabei conhecendo um cirurgião plástico, aqui em São Paulo, que conheceu os procedimentos realizados nos Estados Unidos, sobretudo, pela Dra. Corine. Enfim, por trabalhar no Instituto do Câncer aqui, acabou se deparando com vários casos de linfedema pós mastectomia, o que o levou a buscar algum tipo de tratamento para essa doença. Eu fui a segunda paciente dele que recebeu esse tipo de tratamento, o transplante de linfonodos.
    Meu transplante foi realizado há 4 meses. Foram extraídos linfonodos da região do pescoço e transplantados para a região da coxa. Uma cirurgia de mais de 9h, fiquei uns 7 dias sem colocar o pé no chão. Fiz tudo o que me foi recomendado. Até agora nada mudou, ou pior ainda, as regiões dos cortes estão super sensíveis, minha coxa teve um aumento do volume, tenho dificuldades ao dormir do lado esquerdo, porque arde demais.
    Diferentemente de você, não tive instruções sobre drenagem, ou qualquer outro tipo de exercício. Meu médico apenas recomendou o uso de meia elástica, confeccionada sob medida. Tenho tido pouco retorno por parte dele. Não o vejo muito entusiasmado com as possibilidades de cura. Tenho o questionado sobre a lipoaspiração, e ficamos de ver mais pra frente. Na última consulta ele me pediu mais 2 meses, antes de termos qualquer conclusão. O problema, que você conhece bem, é a ansiedade. Esperar não é nada fácil diante de uma enorme possibilidade de cura.
    De tudo que já li, inclusive aqui no seu blog, infelizmente, essa ainda é a única esperança que temos. E me parece que para alguns pode dar um resultado positivo, e para outros pode não dar certo.
    Resolvi dar meu depoimento, ao ler que uma brasileira, Stella May escreveu aqui que desconhece qualquer profissional brasileiro que faça o transplante. Vou conversar com meu médico para que ele me autorize a divulgar seus contatos aqui. Mas posso mandar por e-mail, se assim a Stella quiser.
    Mas, queria aproveitar a oportunidade para lhe perguntar sobre os seus resultados, depois de quanto tempo começou a sentir melhoras, quando fez a lipoaspiração. Enfim, preciso me animar, mas está bem difícil sem ver qualquer melhora.
    Parabéns pelo blog e obrigada pela oportunidade.
    abraços a todos
    Dida Egen

    • Hello, Helen. I am Brazilian, and my english is horrible, I decided to write it in Portuguese. Thus, for better understanding, just use some application to translate.
      Well, let’s begin. Am carrier lymphedema for over 20 years. I was born with a deficiency in the circulatory system called Cockett syndrome, a compression of the iliac vein on the vena cava, which made my ankle swell. But until my 20s, it was all controlled. However, I had a very serious infection, called erysipelas, after a season on the beach. The fact is that it was not given due attention to this infection, and my left leg was never the same. The swelling increased, and a new disease was diagnosed: lymphedema. I was devastated to learn that had no cure. Did some treatments like lymphatic drainage, bandaging. But no satisfactory result. The volume diminished, but by having high, returning to swell again, to my dismay.
      Time passed, after several other infections, my leg was completely deformed, triple the size of the other, the difficulty of increasing mobility. I met a plastic surgeon, here in São Paulo, who knew the procedures performed in the United States, especially by Dr.. Corine. Anyway, to work at the Cancer Institute here, eventually encountering several cases of post mastectomy lymphedema, which led him to seek some kind of treatment for this disease. I was the second patient of his who received such treatment, transplantation of lymph nodes.
      My transplant was performed 4 months. Lymph nodes in the neck region were extracted and transplanted to the thigh. Surgery more than 9am, I stayed for seven days without putting your foot down. I did everything that was recommended to me. So far nothing has changed, or worse yet, the regions of the cuts are super sensitive, my thigh had increased in volume, have difficulties to sleep on the left side, because it burns too.
      Unlike you, I had no instructions on drainage, or any other type of exercise. My doctor only recommended the use of elastic stockings, made to measure. I have had little feedback from him. Do not see very enthusiastic about the possibilities of healing. I have asked about liposuction, and we were to see further ahead. At the last visit he asked me 2 more months before we have any conclusion. The problem, you know well, is anxiety. Waiting is not easy on a huge possibility of cure.
      From everything I’ve read, including here in your blog, unfortunately, this is still the only hope we have. And it seems to me that some may give a positive result, and for others may not work.
      I decided to take my statement, to read that a Brazilian, Stella May wrote here that knows any Brazilian professional to do the transplant. I’ll talk to my doctor so he allow me to disclose their contacts here. But I can send by email, if you want to Stella.
      But, I wanted to take the opportunity to ask him about his results, after how long she began to feel improvements where made liposuction. Anyway, I need to cheer me up, but it is very difficult without seeing any improvement.
      Congratulations on the blog and thank you for the opportunity.
      hugs to all
      Dida Egen
      This is a translation from above if anyone would like to respond…

      • I hope Dida that by reading the comments etc and the connections here that you will be able to find what you need… There are videos you can watch created by various drs too… I ahve printed the English translation so people can read that to.. It does take up to two years to see i provement from this surgery … You must continue to wear compression …do MLD etc till the lymph nodes can work better… Liposuction is quite different and you need to wear compression 24/7 so swelling does not return… It is i portant to find a dr with experience as this is major surgery.. Post surgical care is also important as it is not just about the surgery… I hope this blog can give you help and support

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