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Lymphoedema - advice needed

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Re: Lymphoedema - advice needed

Just popped by to say good luck and hope things get sorted out and less stressful. I had back surgery, not as serious as yours. It was repairing a prolapsed disc but I had no swelling. Not sure if this info helps or not.
Thinking of you Lynnxx
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Re: Lymphoedema - advice needed

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Re: Lymphoedema - advice needed

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Re: Lymphoedema - advice needed

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Re: Lymphoedema - advice needed

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marjay12
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Re: Lymphoedema - advice needed

Well the day got worse as I was busy trying to sort my transport out. I managed to get a number into the actual people who organise the transport. This silly lady told me that I was not entitled to it as I was working and therefore mobile and if I didn't like it I could contact the PCT as they were the ones who were holding all of the money!!. I was so cross that I went "surfing the net" during working hours and came across the DoH website and eventually found their transport criteria. I then phoned the PCT with the upshot that I may put in a formal complaint - discrimination against disable people, as the 1st woman didn't even bother to find out any of my details. In fact I am registered disable in receipt of DLA (high rate mobility) and STILL WORKING!! If the govn give me my benefit, then who was this woman to question me??? The PCT are phoning me tomorrow as they know a mistake has been made and I think I will get the transport and probably be coerced onto the patient transport group to stop this sort of thing happening to others - as if I need this at this time! If not then the secretary at the National Hosp will def get a phone call.
My daughter is coming home from uni tonight so things should get easier - at least we won't be travelling back and forth to much now - we were there on Mon as she had to go to the breast clinic with a large lump and in the middle of her exams as well. Pleased to say, all was well thank goodness as I really couldn't cope with that on top of everything. I just feel for her but the Uni said they would give discretion due to extenuating circumstances for her exams. She finished today so other daughter is going to pick her up for me which is just as well as it has been a bad day and I am all tramadol'ed out!!
Am about to buy the lilac lymphoedema bracelet for the non taking of bloods etc - does anyone have the link for the site? I know that it was on the other old forum but that has now gone so need a bit of help.
Sorry to go on but really need to get it off my chest so to speak and this forum is certainly the place. I know that it is full of lovely helpful ladies who have probably had some of these problems and will have "been there and got the T shirt" so can I ask for their advice, Thanking you in advance,
Maggie xxx

marjay12
Member

Re: Lymphoedema - advice needed

Dear All,
Just a quick update as really stressed today as it all appears to be going wrong. Have had all of the family on the phone giving me grief interspersed with talking to stupid transport people - sorry to any out there but my ones take the biscuit. I am trying to get transport for my pre op but it is really hard, plus when I am admitted for my surgery, they have already told me that they can't get me there at the time required and that it will be an hour later and that the hospital can just put my surgery on hold until I arrive - yea right!!! Anyway now have a new number to try tomorrow so heres hoping.
I know I am being stupid, but when discussing my pre op with the lady that organises it, apparently I only need to see the aneasthetist if I am on blood thinning pills. When I informed her off my breast cancer history, reconstruction and lymphoedema, that is not serious enough to warrent a visit to see one. I went on to explain that I can only lay on my front for up to 5 hours and then I would probably encounter some problems. this didn't worry her as I still wasn't on the right tablets!! my surgery is approx 5 - 6 hours so I may well have a problem. I can see me telling all in the theatre prior to my surgery and holding up the list until someone listens and thats before I tell them all about the restrictions regarding my lymphoedema of my leg as well - I can see I am in for some fun and games:( I know I will pester the nurses to ensure that everyone and I mean EVERYONE knows about my lymphoedema and the necessary restrictions to prevent it becoming a problem
I have decided to buy some sports bras for immediately post op as I doubt if I am able to get my compression bras on but I am going to have my hubbie do my mld post surgery especially as I will have been on my front for a good long while - I am not trusting any of the nurses and until I feel ok to argue, he can do something to help me!!!
Well do hope all of you are ok, thanks for all of the advice, will be following the instructions like mad.
Hope you are all ok, especially N as she fights that cellullitis and infection.
Take care,
Maggie xx

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Re: Lymphoedema - advice needed

Hi Marjay12. This all sounds a bit grim but I'm sure it will get sorted however do not expect anyone other than a lymphoedema specialist to know anything about this issue. I've recently been in hospital with kidney stones and rather wished I'd made a tape recording of the phrases " No you can't use that arm for blood pressure, blood tests or anything else I have lymphoedema." Make sure before you go in that everyone knows about the lymphoedema and that they have worked it into your care plan. Just as Norberte says you have to be very pro active about your own care.I hope all goes well. Regards Chinook
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Re: Lymphoedema - advice needed

Hi Marjay12. This all sounds a bit grim but I'm sure it will get sorted however do not expect anyone other than a lymphoedema specialist to know anything about this issue. I've recently been in hospital with kidney stones and rather wished I'd made a tape recording of the phrases " No you can't use that arm for blood pressure, blood tests or anything else I have lymphoedema." Make sure before you go in that everyone knows about the lymphoedema and that they have worked it into your care plan. Just as Norberte says you have to be very pro active about your own care.I hope all goes well. Regards Chinook
marjay12
Member

Lymphoedema - advice needed

Hi,
Can anyone help me please. I had a mx back in Oct '09 with immediate diep recon. I have now been diagnosed with lymphoedema in recon breast and because of my longstanding back problems, in my right leg as well.
I am about to go in and have major spinal surgery to correct a couple of congenital abnormalites and to bring my lumbar spine back into alignment. I have just got my date of the 11th June and am terrified about it. On a practical side, I wear a long line compression bra 24/7 and adorable compression stockings whist up and about. I will obviously have those white TED stockings so no problems there, but my compression bra comes down really quite low on my back so that I think I will be unable to wear it following my surgery. I am now thinking about what to wear post surgery. Would it be wise to have a post breast surgery front opening bra or a normal well fitting sports bra which does up at the back? Do you think the nurses will be wise to the need for my continual compression or will they probably say that I don't need the bra. Also does anyone have experience of spinal surgery with regard to the amount of swelling I can expect, as I think it may well travel up my back and make doing up any sort of bra difficult. Admittedly I do still have the bra expanders from when I had my recon so could take these in with me.
Sorry this is long winded but any advice would be great,
Regards,
Maggie xx