1st Appointment

[angie10]

I had my first appt with the lymphoedema nurse. Quite informative. She is referring me to my local hospital for the 'green dye test' to get a definite diagnosis on whether I have lymphoedema or not. She is also ordering more blood test cos she thinks that there could be another underlining problem. There's a lot of if's/but's and maybe's going on here but hey!!!!!!!!!!!! She has measured me for compression tights as well. I asked her about the keyhole surgery that is done at a clinic in Oxford that use micro-sugery to bypass the blocked lymph vessels and was told that they couldn't refer me. (I made enquiries but the surgery is soooooooo expensive) But there is an NHS hospital in Wales that does it. The only problem with that is that you have to be a resident to be considered for this. NOT FAIR. Aren't we all part of the British NHS????????????????? Got to see her again in about 3-4wks. So basically, still not had a firm diagnosis as yet. That's my story so far. Sorry its lengthly and thanks for reading. x

[roysome]

Can you give me the details of the clinic in Oxford please?

Address, procedure, cost.

With thanks,

Roy.

[angie10 in reply to roysome]

Hi Roysome. It's Oxford Lymphoedema Practice. If you google them you will get all the details. Give them a ring. They were really helpful and will send you all the details you need. As for the cost, I would need to win the lottery to be able to afford it haha.

[roysome in reply to angie10]

Thanks will follow up.

I only have one leg effected so it might not be too pricey.

Royl

[angie10 in reply to roysome]

Hope you're right. But from what they said it seems to be one price regardless. But wishing you luck

[CCT67 in reply to roysome]

Hi Roy

I was assssed for the LVA surgery by surgeon Professor Furniss at Oxford LE Clinic last year.

The assessment, including the ICG Lymphography scan (which determines if you are a candidate for the surgery), cost £650.

If you are a surgery candidate then you would have to spend £16,000.

Sadly it is not NHS covered in England.

It's also relevant to know that if you have Primary LE then it is highly unlikely you will be deemed a candidate for the op by the surgeons at the clinic.

However LVA, also known as Supermicrosurgery has had good outcomes for Secondary LE especially if the surgery is done soon after symptoms emerge.

It's worth going to have the ICG scan as it's very revealing - it gives much more info about the pathology of the LE limbs than Lymphoscintigraphy does

Good luck!

[roysome in reply to CCT67]

Thank you very much indeed for that useful information.

I will seriously consider a scan for the reasons you mention and the price is ok.

£16, 000 for the surgery seems very steep. I should imagine this varies depending upon the scan results.

I have secondary lymphoedema in my left leg as a result of trauma. The swelling is moderate but causes me to walk badly and fear falling over due to the imbalance weight-wise.

Gradually it worsens so I feel that I will have to do more about it than wear a compression stocking. This is all my local clinic could offer.

Going private is an option. I winter in Asia. I will investigate the local options and prices first.

Thanks again,

Roy.

[CCT67 in reply to roysome]

You will likely be a good candidate as you have secondary LE.

Sorry to say, the cost of the op has nothing to do with the scan results. The cost was 16k last year and it may have gone up as I was assessed for the op Feb 2016. The scan tells them is you have the lymphatic vessels required to make the surgery viable, but it's not linked to the cost structure. A chat with Jenny at the clinic would clarify the current surgery cost, as well as the assessment and scan cost.

The assessment and scan are compulsory to determine if your leg would be operable with LVA surgery. After the surgery you would still have to wear compression garments as its not a funk cure for LE but it does reduce symptoms and functioning of the Lymphatics/blood circulation.

Perhaps some private insurers would cover the cost.

Good luck

[angie10 in reply to CCT67]

Hi CCT67. I was told by my Lymphoedma nurse that this surgury is covered by the NHS but only in WALES. (and you have to be a resident) I think that is so unfair as aren't we all under the Bristish NHS???????????

[CCT67]

In theory we are all covered by the same NHS however the area CCGs/clinical commissioning groups determine much of what is available in their areas - they govern the budgets. It's not fair, you're right about that.

In saying that, the LVA surgery is not an option if you have primary lymphoedema however it is with secondary.

It sounds like you have yet to have a Lymphosctintigram to ascertain if you have Lymphoedema. This scan looks at the speed of uptake of lymphatic fluid in the limbs being scanned. It's a very useful scan and takes a few hours from start to finish. As you said the nurse isn't sure you have LE so having the Lymphoscintigram is essential to know for certain!

[angie10 in reply to CCT67]

Yes to all of the above but I hate the uncertainty. Wonder how long it will take for the appointment to come through?

[CCT67 in reply to angie10]

Not sure what part of the country you are in as that might account for how swiftly you're offered an appointentment. I'm in Surrey and the appointment was about 4 weeks after the Vascular Consultant referred me. The Gamma scanner that is used for the Lymphoscintigram is in the Nuclear Medicine Department of hospitals. Not all hospitals have Nuclear Medicine (smaller ones don't) so it would require a drive to a larger one - so where you live may make a difference. Also something that impacts on how quickly you get an appointment is how long it takes for that nurse to actually complete the referral...I think that is often the reason for delays... Hopefully not in your case though x

[angie10 in reply to CCT67]

I live in Bristol and luckily we have one at my local hospital. It's really near to where I live. Fingers crossed for a swift appointment

[DeadfootMo]

Angie, you are so right we are all part of the same NHS, so I can understand your anger about not getting the treatment.

[DeadfootMo]

Can someone define first or secondary Lymphoedemia?

I have been diagnosed with Vienous Lymphoedema but this is after 5 - 6 years of having swollen feet that GP's put down to being overweight, despite this condition starting in its early stages whilst undertaking a lot of travelling for work and holidays.