sleeviejeebies

Sorry, I have no experience of LVA (other than knowing that it is shockingly expensive). I was wondering whether you could get in touch with your lymphoedema clinic (if you have one) to sort out a better compression solution (in terms of garments) while you research other options. I went through the same experience as you and stopped wearing compression for some time because of my hand. I now really regret this as my arm is much worse and harder to control, and this really gets me down (I'd like to spare others the same experience!). At least things would be under control while you research other options. The integral sleeve + mitten I sent a picture of before works best for me and I wish I'd discovered it much sooner. I hope this helps a bit: I know it's a miserable experience...

Buddywhite in reply to sleeviejeebies

Thanks for that, you are right I need to stick with some compression else arm will get worse. I have a few items I have the juzo all in one I find it very scratchy though not v comfortable. And it covers my fingers . Yuk . It would be a dream to have some procedure to clear it up…. I am meeting another therapist next week I have heard she has a good range of garments which are comfortable

Reply (0)Report

sleeviejeebies in reply to Buddywhite

Good luck. I hope it goes well (it's so difficult to find a solution that works and is comfortable, isn't it...)

Reply (0)Report

Buddywhite in reply to sleeviejeebies

I saw your sleeve in a previous post it looks narrow so your arm must be fairly slim good for you

Reply (0)Report

sleeviejeebies in reply to Buddywhite

It is, until you compare it with my other arm (I have very skinny arms!) There's about a 15% difference on a good day...

Reply (0)Report

Wfdstar in reply to sleeviejeebies

Hi, I had LVA on my left leg in 2020. My lymphoedema was a result of lymph node removal after melanoma in 2007. At this time my swelling was minimal but increased after illness in 2013 increasing year on year to a 22% difference. I decided to go ahead with LVA knowing that results would not be perfect but would hopefully prevent any further progression. I was given an 80% chance of a 50% reduction in size. The procedure was a success and I now have about 12% difference. I still wear my compression garmet throughout the day but can go without on special occasions (I don’t want to push my luck!). 2 years on I’m glad I went through with LVA. It’s not perfect but hopefully won’t get no worse.

Reply (0)Report

CCT67

Looks like you posted the very same question 5 days ago. This is not a site where loads of people have had LVA. This is a UK site so if you’re in the US it would be better to canvass US Lymphie groups for LVA outcomes eg National Lymphedema Network on Inspire platform. Lymph surgery is more common in the US as many insurance companies are starting to cover it. If you are in the UK then going for a suitability assessment screening at Oxford Lymphoedema Practice would be prudent as they’ll undertake ICG Lymphography scan etc to determine your limb’s suitability.

Remember that even if your arm is deemed suitable with an optimistic projection it does not mean you are guaranteed to have a good outcome. There are no guarantees when it comes to any surgery. The outcome picture for Secondary arm/hand LE is a mixed picture. Those I know who’ve had a bad LVA outcome don’t talk about it on social media platforms as it’s too painful/depressing - they avoid talking about it at all costs as it’s the last thing they want to dwell on. Those I know who’ve had successful LVA outcomes want to sing their elation from the rooftops.

sleeviejeebies in reply to CCT67

What are the bad outcomes? Is it that some people feel that they have spent a lot of money and not benefited or are there more sinister outcomes, such as worsening lymphoedema/disfigurement?

Reply (0)Report

CCT67 in reply to sleeviejeebies

In clinical terms, poor outcomes means the aims of surgery are not achieved. In real terms, it means Lymphie patients who’ve had LVA experience no positive change post op. Therefore, in the months and years post op there is no favourable change to their LVA limb, they have no reduction of swelling, heaviness etc. Poor outcomes do occur in patients with Primary and Secondary Lymphoedema. Bear in mind 90% of Primary patients are by suitable for LVA. However, Secondary patients do have good LVA outcomes record, based on research to date where LVA was undertaken very early in the disease. Research outcomes are best for Secondary post cancer arm LVA undertaken very soon after lymph symptoms start: LVA is seen to significantly reduce swelling, heaviness, and cellulitis

There isn’t research re LVA causing sinister problems post op. I haven’t heard anecdotal accounts of worsening swellings etc from those who’ve had LVA with poor outcomes. Those I know with poor outcomes have been heartbroken to experience no positive changes to their limb in the months and years, especially after spending 18k for LVA.

Reply (0)Report

sleeviejeebies in reply to CCT67

Thanks CCT67. It must be devastating to see no improvement after spending so much money and getting one's hopes up. Presumably this is why the procedure isn't available on the NHS (huge cost with variable outcomes).

Reply (0)Report

Buddywhite in reply to CCT67

Thank you for your reply, I am based in Ireland, so would be looking to the UK.

I have been a great patient for 15 years, while LE was in arm, but since it went to hand I am finding it most distressing and I am consumed with planning on how to improve my hand- no physios can seem to help me.

I now need to wear compression on hand and arm. This seems to make the hand worse as it congest the hand. If I dont wear compression, the hand seems better but then I am worried the arm will go up. I have tried not wearing compression and swimming/ dry brushing etc, but I have been used to wearing compression for 15 years so find it unnerving if I am not wearing compression

So this is why I am thinking maybe surgery could help me. I know it is a very very big decision and no guarantee of success- was hoping to talk to people who have been through the process

Appreciate any help I can get- LE is such a tough condition and only those who have can it understand it

Reply (0)Report

CCT67

Indeed only those with Lymphoedema are the only ones to know how it affects us physically and psychologically. Like you, I find the idea of not wearing compression counter intuitive. However sometimes ‘less is more’. I found that my hands and arms do much better in very lightweight compression. My swelling was worse in bespoke flat-knit garments even though it was theoretically the most appropriate for me. Have you tried Jobst Bella Lite? It’s a very light weight compression. Also , Haddenham Comfiwafe it’s brilliant for when relaxing at home and night wear. Perhaps you could wear Comfiwave at night and go without compression in favour of k-tape by day? Sometimes I go without day compression and only use k-tape, as I respond so well to tape. (I mix up my regime as my swellings are changeable with weather, barometric pressure, stress etc).

I’m not a lymph surgery candidate. I fully explored that in 2015 with various surgeon consults and multiple scans, including Lymphoscintigraphy and ICG LYmphography. It was well worth the expense (£650) to be assessed by OLP in Oxford re LVA snd VLNT surgery. Putting aside surgery, the tests they did gave me so much information about my lymphatics;I’d had various scans and tests before I went to OLP so I didn’t expect to learn much of anything new, but I was very wrong about that). I really do urge you to inquire with them about assessing your suitability - it requires one visit to their hospital clinic during which you’d have various tests/scans including ICG Lymphography. Professor Furness and Mr Ramsden will give you an honest assessment of suitability for LVA. They are extremely experienced and pioneers in lymphatic surgery in the UK.

The best investment I made many years ago was a Deep Oscillation device (PhysioPod portable model). DOT therapy has been used at the renowned specialist Lymphoedema hospitals, Foeldi Clinic in Germany and Wittlinger Clinic in Austria, for many decades. (It’s a German technology invented in 1970s). DOT is a brilliant way of doing SLD /MLD, as DOT addresses lymph drainage and importantly fibrosis/fibrosis prevention. It’s worth looking into especially if you don’t go down the surgery route. (PhysioPod portable device currently costs approximately £3000, a very worthwhile investment). Lastly, do you see a qualified lymph drainage practitioner for regular MLD treatment? If not, it would be worth exploring.

Those who’ve had LVA say it’s not particularly painful. It’s usually a day surgery with a few weeks recovery. Some people notice immediate improvement, others it takes weeks or months, and then some have no improvement. With all surgery there’s a risk it won’t achieve the desired effect. Good luck whatever you decide !

Buddywhite in reply to CCT67

Thanks so much! I totally agree less is more . I have Bella lite! But it is only a sleeve. What can I wear on my hand? I need something to cover fingers. Have tried loads currently using xo during glove it is horrible

Reply (0)Report

Buddywhite in reply to CCT67

I have an initial consultation. With Oxford , a zoom call in a week or so. Am a bit nervous. I am in ireland so it will be a logistical effort for me to go to Oxford but if they think might be worth while I will do it

Reply (0)Report

Buddywhite in reply to CCT67

Cct67 can I ask how long you had le when you went to Oxford. I have it 15 years but it is still very mild. My only problem is it went to hand last year. Not sure if it is too late for me as 15 years out. I do have a consultation in the next week or so via zoom, I will find out more then. But doing as much research as I can before.

Reply (0)Report