Any help with some good advice : I'm in the process of... - LSN

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Any help with some good advice

sharon1234
sharon1234
21 Replies

I'm in the process of being referred to St George's in London which is a long long way away from me which is the best consultant to see and I hear there is a hospital in Derby what has lymphedema specialist does anybody know anything about that I will be grateful with it any advice given I'm going to get a second opinion because I think my lymphedema is worsened by really bad varicose veins and I think that it hadn't more fluid than anything because as soon as I stand up my leg just gets bigger and bigger and bigger and exercise just makes it worse

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Lynora

St George’s consultant would be Kristiana Gordon (taking over from Prof Mortimer). There is Vaughan Keeley at The Royal Derby - nice bloke. Seen him at several conferences over the years.

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sharon1234
sharon1234
in reply to Lynora

Thank you 👌😁

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Sheilamoose
Sheilamoose
in reply to Lynora

The Professor is still going strong lols. Don't think he wants to retire... Kristiana Gordon is lovely, so is the surgeon Christine (sorry, forgotten surname & can't get at my plastic file atm to retrieve it).

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sharon1234

Do you know anything about the clinic in Derby I will be grateful if you can give me the heads up on anything because I'm going to to go there are like I've previously said. I should have had my varicose veins done in my late teens but I never got the weight lost then poorly after then yes past and I suffered with cervical cancer which I think my lymphedema is more worsened by the varicose veins which will be horrendous now because they should have been done about 25 years ago. But as soon as I stand up my lymphedema leg get so big and exercise makes it worse than that drastically but if you can understand soon as I stand up I'll be on my legs I like just gets bigger and bigger and bigger and I'm sure it's not lymphoedema what's doing that is the varicose veins can you give me any help and your suggestions and your thoughts you could always WhatsApp me on 07769683802 kind regards Sharon

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veriterc

If you qualify for hospital transport then the NHS ambulance service will take you from home to London - at no charge. If your Lymphoedema is bad you probably will qualify - I do. Or did. My Lymphoedema has almost completely cleared up thanks to advice and treatment plan from a Hungarian using MLD. The Prof. had said that my problem was nothing to do with cancer (although I had been clear until I had breast cancer treatment with lymph nodes removed), but hadn't suggested any treatment that worked, so you might do well going to the hospital recommended by Lynora. If you decide to try MLD (Manual Lymphatic Drainage) I tell more on aftercancers.com/lymphoedema

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Lynora
Lynora
in reply to veriterc

I enquired about ambulance transfer for a friend last year, from the West Country to St George’s. Politely but firmly denied ‘due to local budget’ and advised to contact a private ambulance service.

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sharon1234
sharon1234
in reply to Lynora

I think I'm going to discuss it with my lymphedema nurse at the hospice Jane Jones and then think I'm going to enquire about going to Derby purely because it's not far from my daughter's and I can stay at hers London is about 600 miles away maybe more to be honest I don't have a clue. Thank you all kindly for your help and I do appreciate it

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veriterc
veriterc
in reply to Lynora

What about asking your MP to help? Or do it quickly and get your MEP onside. As far as I know the NHS is supposed to provide transport, although buegets will make them decline if they can.

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Sheilamoose

Good idea! I did qualify until my GP retired 10 yrs ago & his 'straight oit of training' replacement cast a veto on my free hospital transport (expletives...) That is even though I can only hobble along for about 20m at a time before stopping to rest! (Back problem as well, 2 slipped discs - "They will heal themselves!" Bah, the moon is made of green cheese etc)

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veriterc

Sheilamoose

Can I suggest you try again? I was refused, even though I could only hobble; excuse was I could catch a bus. I explained that a) I couldn't haul myself up onto a bus and b) there are no buses in my part of the country. Jobsworth was adamant - NO. So I phoned again, and pretended I was making a new application, and got approval within 20 mins. There is a catch question - "will you need a wheelchair?" Even though the ambulance comes straight to the door and often at hospital the dept. I go to is right by door, I ALWAYS say yes. That ticks the boxes and the drivers lend me their arm so I can hobble the 10 yards! Lovely people!

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Sheilamoose

Will try again but ‘unshiftable barrier’ is my GP! I get higher rate PIP for mobility (up to 20m before having to stop, due to pain) but GP says less than that from front door to transport! Same with hospital clinics, all accessible in 20m repeated bursts!

Refuse to see him & see another doc. Asked other doc but got “not my registered patient” reply. Can’t change to other doc as ‘registered GP’ either as practice is full - only taking on new births. Don’t want to move to another practice cos got brand new building with lift & chemist attached; chemist has taken over the ‘out-of-hours’ duties for whole town - open from 0700-2200 7 days a week except Bank Holidays!

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veriterc

I think you should ask for help. Your GP should be helping, not hindering you. What about asking Patients' Association for help? It is easy to join (and I think it is free) and they are very helpful

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Sheilamoose

Tnx will get in touch. Don't want to stir up a hornets nest though. He wanted me to go to Norwich, Addenbrookes, or Chelmsford for treatment.

Hospital said there was noone in this area qualified to do liposuction (who knows anything about lymphoedema too) & said Dr at Chelmsford was 'a dabbler'. So they referred me out of area to St Georges, with the support of my orthopaedic surgeon. St George's are doing funding application too (in case GP mucks it up).

Feel I'm stuck between the devil & the deep blue sea atm ☹

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veriterc

Good luck! It seems crazy that we have to go out of area, with all that costs, and play politics!

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Sheilamoose

Dead right. I’m not quite sure how funding procedures work; if funding approved in London area, presumably they then claim back cost from my area?

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syrup01
syrup01
in reply to Sheilamoose

The “dabbler” at Chelmsford is an amazing consultant - Matthew Griffiths. He will do liposuction, as I’ve had it, and he has performed LVA and lymph node transplant, as I’ve had them. Brilliant team. He has travelled around the world seeing best practice in lymphoedema, as believe it or not we are years behind other countries.

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Sheilamoose

Hi Sharon

Got lymph in my right arm but looks like thousands more varicose veins have suddenly appeared in my legs since my blood pressure went 'through the roof'. I've got venular insufficiency in my legs as well & have to wear compression knee-highs or my feet & ankles swell up so badly I can't get any shoes/trainers on.

Got 1 amazing clinic specialist here. She said there are loads of surgeons springing up doing Lyposuction but unless they also specialise in lymphoedema they could make things worse! (Shudder...) St George's is 4hrs away for me but there is a specialist clinic in Edinburgh & it's either Oxford/Exeter/Bristol - sorry, can't remember which. If it's a 9am appt I travel the day before & stay in a B&B on the outskirts but on underground line.

Can only recommend you do your research first before seeking a referral. Been told (if funding given) will be in there for around 12 days for intensive tight bandaging after surgery. It is NOT 'day surgery!'

Try LSN - they might have a list of surgeons who know what they are doing & which hospital they are at. Can't afford private or would probably have more choice of surgeons.

Hope this helps a bit

Ann

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sharon1234

Thank you Ann xx

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Aprille

If you've been offered the chance to be seen at St George's I would grab it !

I don't have as far as you to travel, a round trip of about 4 hours on a good day but it's worth every mile.There is a hotel on campus which charges £50 a night so you could maybe think about booking in there before your return journey the following day.

I travel " assisted " and the train staff have always been wonderfully helpful and make my journeys as comfortable as possible.

If you get an appt at St G's I'm thinking maybe then you could ask to be transferred to Derby.

I've been offered hospital transport by St George's by the way so I know it exists, but to date I've managed to attend all my appointments on public transport.

God Luck with it all.

Wendy

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Andy13

St George's is probably the best however I am left wonder whether you have been prescribed the right compression bandages. My leg used to starts swelling as soon as I got out of bed, that was especially painful when I had cellulitis. These days I have prescribed compression and I never, I mean never, get out of bed before putting them on. If you haven't got a up to date compression prescription I would certainly get that sorted before traveling to London.

Good luck.

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sharon1234
sharon1234
in reply to Andy13

Thank you Andy I do try to get them on before I get out of bed but I'm up and down to the toilet all night which doesn't help but yeah I've got regular made-to-measure compression stockings made regular about every 2 months I have to double up as well so I wear to class 3 on top of each other thank you for your kind words and support

Sharon

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