OLP -LVA

[Ola22]

Hi Lymph broad church,

I have just had a consultation and scan at Oxford and now considering LVA microsurgery. Has anyone had success from this procedure? I don’t have private insurance so will need to fund this.

many thanks,

Ola!

[SRML]

Hi Ola,

I had LVA surgery at Oxford about 2yrs ago. At the time of consultation I was told that it may improve my swelling by 50% at best, and it may not help at all. Everyone is different and I’m sure they will have given you a very honest opinion. There is always a risk that it won’t help but I badly needed to do everything that I could to maximise the quality of my life. I am 60 and was very fit and active and found this diagnosis truly devastating after having treatment for cancer. I think I decided that even if it didn’t work I would not regret having tried. Also, the chances of success after surgery diminish as time goes by and there was a chance of missing my opportunity.

I know that the surgery has helped. Particularly my foot and I can do some shoes up to the next notch so that is a measurable improvement. My surgeon is pleased and my volumes have hovered around 20% since surgery. I have noticed recently that I can squat fully which I wasn’t able to do at one time so I feel things have continued to improve. We tend to get obsessed with measurements but there are also more subtle improvements such as being able to tolerate standing for longer and feeling more comfortable. My skin is really good and I have not had cellulitis. I would say that I can do pretty much anything that I want to do. I still have to do all the usual stuff with compression and self-care but I do feel that the surgery gives me that extra bit of help and I’m very hopeful that it will keep my condition stable.

I know the surgery is expensive but I would not hesitate if I was young and had many years of this condition ahead of me. Bit of a ramble! Hope it’s helpful and best of luck.

[Ola22 in reply to SRML]

Hi SRML,

Thanks for this. Like you I am fit and active and would like it to remain that way for quite some time. I am just about to turn 55 and diagnosed with unilateral lower limb lymphedema. As you mention I don’t want to look back in years to come and wonder what if!

Pleased to hear you have had a positive experience overall.

Thanks again.

Ola

[Mushy1]

I had LVA surgery at the OLP just over 2 years ago and my situation and attitude was almost identical to SMRL, albeit I had a different cancer treatment that caused my lymphoedema.

As SMRL says, there are no guarantees of success but if you are able to self fund it and want to do everything possible to prevent a deterioration then LVA is definitely worth it. It’s worth remembering the OLP’s criteria of success are based on 3 factors, those being, a reduction in limb size, a reduction in the bouts of cellulitis and the maintenance or improvement of your quality of life.

You can read my full story on the Lymphoedema United website where I have included some images of my ICG scan. You need to become a member of Lymphoedema United before you can read this but it’s free to sign up and you can also read about Professor Furniss who carried out my surgery.

lymphoedemaunited.com/meet-...

[Ola22 in reply to Mushy1]

many thanks for this.

[Ola22 in reply to Ola22]

I read your story- thanks for signposting to it. Its really informative and like you highlight I also saw that ominous starburst of obstruction during the IGC! It’s a bit more exciting to witness than having a lymphoscintogram of which I’ve had 2! I was amazed to see the live flow of my lymphatic system in my leg and reassured as the Consultant demonstrated it doesn’t flow back as even under pressure as there are valves all the way, yet it can chaotically branch off like a spaghetti junction as it encounters a ‘crash’ on the M25 (:-0

I too have trialled the Lyphapress but felt it didn’t actually target precisely where I needed it. It’s only been 2 years since my diagnosis and it certainly is a journey of testing out different things. Will keep soldiering on! Thank you!

[CCT67]

OLP is highly reputable and you’ll be in expert hands with Prof Furness et al. LVA outcomes is a mixed picture. Many have had successful outcome with reduced or more manageable symptoms (LVA is not a cure). Some have felt it’s been life changing. However, many have had no change in their symptoms in the months and years post op (on paper they were a highly suitable LVA candidates) which was devastating for them. It’s the latter who seldom talk about LVA failure as it’s too emotionally painful and they just want to forget about it. Go into LVA surgery with a positive attitude, but also be realistic. Best of luck if you do go ahead with LVA

[Ola22 in reply to CCT67]

Thank you and noted!

[Perido]

I had an assessment at the OLP in 2019. I was advised that of those considered suitable for LVA about 80% would get some improvement, to a greater or lesser degree. I was prepared to chance it because the odds are good, the procedure is low risk and I would have regretted not trying. I was very disappointed to learn I wasn't suitable for LVA. All the best with your decision making.

[Ola22 in reply to Perido]

thanks for this which sounds hopeful. Sorry to hear this wasn’t an option for you.

[SamLymphie in reply to Perido]

Hi there, is there a fee for consultation?

[Perido in reply to SamLymphie]

Yes, there is a fee for the assessment which includes ICG lymphography. I started by calling the OLP to ask questions and there was no charge for that. There is a human operated live chat facility on the website. olp/surgery

[Ola22 in reply to SamLymphie]

Hi,

Yes I paid 100£ to speak virtually to one of the consultants, then followed a trip to Oxford to meet with him and have the scan- this cost £550

[SamLymphie in reply to Ola22]

Thanks Ola. At this cost I'd rather go back home to France and pay for it as I believe it would be cheaper!