LSN
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My turn at last, but how shall I be?

Hi Everyone!

I'm in my 30th year of having lymphoedema, and am almost 80. Having campaigned during the last 15 years or so on behalf of all UK sufferers, and now that the op is available through the NHS, I am thrilled that I myself will have the initial between-toes injection on Feb 7th, but if I'm found to be eligible for the tying-in of lymphatics with veins later on, I'm wondering how much and for how long I might be incapacitated afterwards. I live alone and have a much-loved cat for which I should have to make care arrangements, but one of my daughters lives nearby, with her family, and would want to help. If any readers would like to say how they managed immediately after this op., I would appreciate any suggestions and observations they make,so that I can make plans to cover myself and those around who might be involved with me.

Thank you.

Jude4

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I wish you well and hope you are found to be a good candidate to have LVA. I can’t offer advice as I have not had the procedure but I believe the OLP website does explain it. I am hoping to be referred for an ICG but my GP is not hopeful. I live in Cheshire and was not aware that NHS are offering this treatment. Can I ask where you live, as this may help my request. I have had primary LE for almost 50 years and after long last it is great that some new treatments are becoming accessible.

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Hi Mike,

Thanks for your EM and good wishes. I hope you, too, manage to get your treatment. I thought 30 years were far too many, but your 50 must really get you down! I guess you may have been a child when your primary LE began, and may have been difficult to understand, and to talk about to others.

This LVA has only just become available on the NHS, and at a very few hospitals. I live outside Norwich, and will have to go to Chelmsford for treatment, on 7th Feb. I run a small lunch group for women with LE, and one of these ladies, who happens to be on the local hospital medical staff, told me about this new development at our meeting a couple of months ago. I applied to my own doctor for support, and was referred almost immediately. He checked out my medical history with them, and the only box I didn't tick was my weight, some of which is of course in my leg! So I'm working hard to redress this aspect. As leader of the above group, I've campaigned for some years to get at least a permanent LE service here, and if I am able to have the LVA op., I feel it will afford just a little more knowledge and experience to those who perform it, which could be useful for future patients. I'm 80 in April, and am assured that one's age has nothing to do with the situation, so here's hoping!

With regard to your own situation, have you investigated the possibilities by applying direct to the LSN? I have found them extremely helpful over the years, right from their beginning, having joined, as it turned out, on their very first day.

So keep trying and hoping, and pushing for something to be done,and don't give up!

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Hi Jude. You won't be incapacitated after the dye test - it just takes a few hours. You will have this test to see if you are eligible for the LVA procedure, which, as you say will happen at a later date if all your internal plumbing looks OK. The surgeons will be able to outline the recuperation period recommended for the LVA, should it happen. Fingers crossed.

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Thanks, Lynora, for such a quick and reassuring reply. I'm going to Broomfield Hospital in Chelmsford, and they have asked me to allow 2 hours for the initial test. This is our nearest centre for Norfolk, where I live, and I feel we are so fortunate to have this test and, maybe, operation available now, even at this distance!

Jude4

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Are they offering the LVA procedure in Broomfield?

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I'm thinking they are, but will find out next week, I guess!

Thanks for your interest.

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They say allow 2 hours for the test as they inject the dye then leave it for 30 minutes (I was sent for a coffee) so that the dye can travel up the limb and then they scan. From the scan they can make a judgement on how healthy the lymphatics are and if you would be suitable for LVA or not.

Hopefully the scan and LVA will be available to everyone on the nhs soon as it should be (i’ve just spent a fortune on it!!!)

Hope all goes well!

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Hi Angelil,

Thanks for putting me so clearly in the picture. I'll try to remember to let you know how I get on!

Jude4

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OMG I live by Chelmsford. I thought it was just a private op!!! I understood that only wales were getting it on the NHS and that was if you had at least 2 cases of cellulitus a year.. Please please keep us updated on what you know. People would travel all over the country to get the op. I actually wonder if I am too mild to be considered (in the grand scheme of things), but would love to be on the list.

Good luck with the first stage with the dye. I hope you qualify. Loads of info and updates please...big hugs x

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Hi Lymphoqueen,

Thanks so much for your reply, and your good wishes. I had read in one of the Lymphline mags that treatment on the NHS is becoming more widely available,but didn't know about Chelmsford until that lady in my earlier email told me. She is a pathologist at our hospital, and happened to be sitting next to me at our group lunch-meeting, and I guess was prompted by our conversation to deliver this wonderful news!

I typed a letter ASAP to my GP, letting him know how I came by this info about Chelmsford, which you probably saw in that email. He is not one to hang about, and soon after reading my plea for attention, he rang me to say he had phoned Chelmsford, and that I ticked all their boxes except my weight, which, I'm pleased to say is reducing gradually, thanks to my old book by Rosemary Conley! Apparently, if one is over a certain weight, they are not allowed to operate on the patient.

Why don't you do likewise? I feel that a typed letter is more formal, and to the point. You could direct your GP's attention to this site, and the LSN Lymphline newspaper, and the fact that others are applying for the treatment. Good luck to you too!

Jude4

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Hello Jude, I feel honoured to have seen that you have been busy on behalf of lymphoedema/cellulitis sufferers, and you have so much respect for doing this. You are an angel for doing all this work for LSN, I am so very proud of you especially a lady in her 80's who has worked so very hard all these years.

I only have lower leg, ankles, feet lymphoedema and am in the middle of another attack of cellulitis. It has to be the worst since I have been having it, I normally have 3-4 bouts of it a year, this time, as said has made me feel really poorly (have other conditions too), but this beats the lot, and never knew until the other week that it gets worse as time goes on. Do not think I would be able to cope.

You are an inspiration and have worked extremely hard bless you, what a wonderful lady you are.

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You are an inspiration Jude, fingers crossed you will be eligible for LVA, and thanks for all you have been doing x

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Hi there!

I said I'd get back to all you kind people who wished me well at Chelmsford.

My leg was viewed on the machine, and showed that there is fat in it, and that the lymphatics would be difficult to access. BUT, said the very nice and understanding consultant, "We can offer you Liposuction".

So I have signed up for it, had the pre-med questions, etc, and shall have to wait a few months, I guess. It will involve a stay over night, and about 3 days of movement restriction once I'm home, and the leg will be bruised and battered somewhat, but I'm looking forward to getting something done, after all the years of trying!

I have suggested that Liposuction might be a possibility for Ulverin, whose mail I saw earlier today. And as for myself, I'll keep you all updated as developments occur!

Good luck to you all. Jude4

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so glad you got a positive response and hope you don't have too long to wait for the procedure xx

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Hi Jude

Was Matthew Griffiths the man you were referred to? I believe he is a breast surgeon with micro surgery experience and has been to Sweden to study the procedure. perhaps you could let me know as I would like to contact him. xx

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Yes, he was. apparently, according to the nurse who works with him, he and one other man, who practices in Scotland are the only 2 who offer the procedure at their level. However, we know that this treatment is available elsewhere, so I don't quite understand that. It does make you feel rather special, though! Mr Griffiths is very nice, and makes you feel confident in his work.

Must go to bed now, as have appointment at Specsavers in the morning! Night night,

Jude4

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Thank you for your reply. I hope I can get to see him. I would have travelled anywhere in the country, but to have him just down the road, makes me feel that fate might be on my side. xxx

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Thanks to you too. Have you asked your doctor yet to refer you? I do hope you are successful!

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I have written today..he asked me to do the groundwork and find out name and department..I must say I am surprised he is breast. I thought he would a vascular surgeon...I will keep you posted. Xx

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It sounds as though you have made a good start. Good luck!

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