My Story

My Story

Hello, I am new to this site but realise now that I might need the support and help of fellow sufferers of Lymphoedema. When I was 30 years old in 1982 I had testicular cancer and following an orchidectomy I was told the histology showed I had a seminoma and after 3 weeks of radiotherapy on my abdomen my G.P. was told that there was trace of the disease and he could consider little chance of recurrence. Within six months I had a bad back and swelling in my legs, in particular the swelling in my right leg became severe and was nearly twice it's normal size. My G.P. was called out and he called for an ambulance, I was rushed to hospital and put on a Heparin pump. Following tests I was transferred to the Royal Marsden Hospital in Surrey where further investigation concluded that my primary tumour was in fact a teratoma not a seminoma. I had secondary tumours one was blocking the main vein from my legs in my lower back, this was obstructing the venous system from my right leg in particular. I had a four courses of intravenous chemotherapy over three months which shrank the tumours and saved my leg. When I was admitted to the Royal Marsden I was put on warfarin which I stayed for a year or so. I had swelling in my right leg and was told that I had lymphoedema and was fitted with compression stockings and attended a special clinic that help with lymphatic drainage. Several years later I had an injury to my right leg, I was put on antibiotics as I had developed cellulitis, this kept reoccurring and was put on antibiotics long term - over twelve months. Since then I have had one other recurrence of cellulitis which cleared eventually. I have managed most of my life with my lymphoedema wearing my compression stockings when necessary.

I am now 64 years old, on 9th March I had replacement knee surgery, within four days I was discharged from hospital even though the physiotherapist was concerned about the size of my knee. In another four days I developed cellulitis in my lower right leg, I was advised to go to A & E where I was put on antibiotics and told to have complete rest and keep my leg up. Eventually, after about 6 weeks or so the cellulitis cleared. This meant of course that the healing and movement of my knee was not as good as it should be but I was told to keep exercising and my knee would decrease in size and I'd have more movement. Two weeks ago I visited my G.P. he was very concerned at the size of my knee and sent me for an ultra sound test to check for clots in my leg. I was told I had several clots and I am now on Rivaroxaban for six weeks. After two weeks on this my knee is still swollen, Is it possible that the Lymphoedema would cause this swelling, I am also inclined to think that the clots found have probably been in my leg since 1983. I would be interested to know what you think. I drive for a living and with my knee so swollen I am unable to drive.

5 Replies

  • I can't advise you about the lymphoedema but I was thinking that in view of the problem with driving and it being your job, maybe a letter from your GP would allow you to get the car/lorry adapted to your needs. Forcing your leg to be in a certain position might increase the problem. Do try and find out about the driving facilities so that you can concentrate in the healing process. BTW, did you try doing to a swimming pool and doing there the exercises your specialist might recommend?

    You are a brave person. I'm sure you'll get over this problem too.

    Wishing you good luck.

  • Thanks Rebec, as I am semi-retired I work part-time for a local authority driving minibuses so as well as driving I am also responsible for disadvantaged adults on the bus. As I retire soon I do not think my employers would or could justify the expense. Thanks for the hint about swimming, I have been using an indoor pool for exercise.

  • Agreeing with Rebec.....excercise.....perhaps some gentle rebounding and detox.....I know myself that i would not have survived this far without changing my diet and detoxing when diagnosed with breast cancer. I have just recently got the lymphadema after 15years of alternative and integrative treatment for cancer. I am now looking into lymphvessel transfer now as it is mentioned a lot on this certainly are brave and sharing your story is good as the journey will open up new doors....and hopefully find the right solution to give you more comfort.

  • Paulus thank you for sharing your story. This is a great forum as you can get tips and hints, rant to your hearts content and always find lovely people who show great empathy as we are all in the same boat, struggling away to find the best support, deal with the issues, find a good practitioner and so on. Good luck with getting a good solution and managing to keep working.

  • Hear hear.

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