Secondary Lymphoedema right leg just had my LVA operation

[multimarcus]

Hello everyone,

I wanted to share with you my experience, hoping this might be of some help to all those who suffer from secondary Lymphoedema.

5 years ago I discovered I had melanoma on my right sheen. After undergoing the Sentinel Lymph node biopsy and the subsequent regional clearance (during which 19 lymphatic stations were removed), I developed Lymphoedema, about 4 and half years ago.

At present I am being followed by the Lymphoedema team at the Royal Marsden in London and I am wearing a custom fit compression 3 Jobst during the day, and two garments at night (one old 1st compression Medi) coupled with an old flatknit compression 3 from Jobst.

Two years ago I saw Mr Ramsey at the Royal Marsden in Sutton, but unfortunately I was not a suitable candidate to receive LVA there.

After searching around and contacting other patients, I met with Prof Paolo Gennaro, who operates in Italy, between Rome and Siena, through Dr Michelini at the Hospital of Cavalieri di Malta in Rome.

Paolo Gennaro, who is not only a great professional but also a very kind person, accepted to put me on the list, in order to be operated in Siena. He worked with Dr Koshima in Japan, who first pioneered the LVA technique.

Being Italian by birth, I was entitled to receive the operation under the Italian Health System (ASL). In this respect I suggest that those living in the EU zone look into how to receive the same operation under the EU agreement which grants health assistance abroad (this page comes in Italian you can use Google translate to read it into English salute.gov.it/portale/temi/... else you can check this page for planned medical assistance in Europe) europa.eu/youreurope/citize...

You might need to fill a good series of forms (it's the old EU after all) and in some cases you might need to go speak to representatives in person (which takes time and effort) but it can be done!

After quite a long wait, one and half year, I finally had my LVA with Prof Gennaro.

Staying at the Policlinico Le Scotte in lovely Siena was vey nice.

I entered the hospital on Sunday, and left on Tuesday early morning, in Italy you are often required to spend at least one night at the hospital.

The operation took a few hours, I had the indocyanine test in the morning and was pleasantly suprised to see Prof Gennaro find good suitable lymphatic vessels to select for anamostosis. The operation only required local anesthetic and was no big deal. The doctor was very pleased with the immediate results, I received three anostomis in total, we will see how this goes and potentially plan for additional ones in one year of time.

My leg already feels much better, I can see details of my foot which I had almost forgotten about; from the knee down the tissue feels much softer.

I won't be wearing any garment for two weeks and then will try to get into a compression 2 and receive a bandaging session, which Prof Gennaro strongly suggests I get after an initial month of total rest.

I will be posting more updates in the next future hoping that sharing this information might contribute to helping others to make decisions about their health and find help.

Best

MM

[Jennymary]

Good luck, hope it all works out good for you x

[Paulus22]

Sounds encouraging, good luck.

[MarianneC]

IVe had the operation too, in Oxford about 3 years ago, and it's certainly been worthwhile. Hope you continue to see improvements as time passes.

[LegsEleven]

Thank you for leaving such a comprehensive and helpful posting.

I am sure many of us that use this site will be watching and hoping for more updates in the future.

I hope you feel an improvement - and see a reduction in swelling as your recovery progresses.

Good luck and best wishes.

[multimarcus]

Hello everyone, thank you so much for the very nice comments. It is pretty interesting (and exciting indeed) to notice how fast the leg is reacting to the operation. At present it is still about small things; I am not wearing a compression garment and I am resting with the leg elevated most of the times, while still standing for a few minutes every hour, as advised by the doctor.

The leg gets a bit swollen from the knee up, but the swelling decreases after resting for a little while; it is pretty amazing to notice that the body is reacting so quickly. I look forward to seeing how it will improve in the next future.

Good to see that there is hope.

[pollyslymph]

That's wonderful news MM.....I was going to go with Campisi in Genoa but too expensive without insurance....I'm going to stay with a friend in italy and she suggested i get residence there to get the op so I May move to Italy to do this as NHS is not doing it in UK now. South Wales however has trials going....The posts are so helpful - keep us posted.

[multimarcus in reply to pollyslymph]

Hi pollyslymph good to hear about your plan. When you will be in Italy you may want to try and contact Gennaro through his website supra microsurgery.com I don't have his mobile number unfortunately.

Also, if you are in Rome and feel like trying, you could try and contact Doctor Michelini from the San Giovanni Battista ordinedimaltaitalia.org/aci.... The hospital's site does not have an Italian translation.

He is the one who put me in touch with Gennaro in the first place

You could call the CUP there (it's some sort of a national switchboard for hospitals and such) and try and get an appointment with the Doctor privately. Although you might need the European Health Card prior to all of this.

I hope you get to talk to Dr Gennaro while there.

Best of luck and fingers crossed.

MM

[pollyslymph in reply to multimarcus]

Hi MM,

Saw Gennaro in Siena...and we have started the ball rolling..... He thinks that my condition could also be due to venous complications......and may be lipoedema as opposed to lymph edema...... I am to consult my oncologist in uk upon my return and request further tests such ad ultrasound dopla that also determines the skin condition, and another MRI to see ify veins are the cause. With more info we will the do the lymph I into graph

[pollyslymph in reply to pollyslymph]

I meant yo say lymphicintigraphy before microsurgery which is what I hope for. He says these things take time as you know, biy at least I am further informed Noe and will get the bandaging which he I'd sure will help. Your story has helped mine so grazie mil.

..will keep posting.....good to see there is an awareness march in London in September

[multimarcus in reply to pollyslymph]

Good luck Pollyslymph, I am glad to hear you managed to meet with Dr Gennaro; good luck now in the UK. Keep us posted and thanks for letting me know abut the awareness march.

[lovesradio]

Good luck multimarcus I hope you find the surgery has really helped x

[multimarcus in reply to lovesradio]

Thank you! And thanks for all your help and advice!

[panzanella]

Hi, your story sounds very interesting and very similar to mine.

I am having a very difficult time with my lymphoedema.

I wonder if I could contact you over the phone, I am also italian.

This is my number 07889790383

I would appreciate it enormously

M.

[pollyslymph in reply to panzanella]

Hi Panzanella.....I was wondering if you heard from MM with contact phone numbers for Prof gennaro....if you could let me know...grazie

[multimarcus in reply to panzanella]

Hi Panzanella, I hope you are well.

Message me in pvt if there is something specific you'd like to discuss. I could try and call you in the next days

Wishing you all the best

MM

[pollyslymph]

Hi MM.....I am trying to contact the office of Prof Gennaro in Siena but not having much luck. I already sent in an email but no reply. I am in Italy at the moment and would dearly love to be able to get a consultation. Please if you have any other phone contacts for the department where I can speak to somebody please could you let me know. My email is - [e-mail] Graziemil

[multimarcus in reply to pollyslymph]

Hi Pollyslymph if you are in Siena you might want to try and call the Policlinico Le Scotte and talk to their booking service or CUP. However, before doing this, you might want to check with Dr Gennaro who might not be at the hospital as he works between Siena and Rome.

Try contact him through his website at supramicrosurgery.com, there you should find the best way to get a first appointment with him and his team.

There is no specific lymphoedema department there (lymphoedema is not recognised as a condition in Italy), despite there being surgeons specializing in LVA et similar treatments. This can make things quite complicated at times.

Hope you can get to talk to him very soon.

Good luck!

MM

[Kraut]

Incredible journey 🙏🏻

[Perido]

Hi multimarcus

Only just found your post here. If it's OK to ask I'm wondering how your leg is doing 5 years on? Where did Prof Gennaro do your anastomoses? I saw Mr Ramsey at the Oxford Lymphoedema Practice last December and he considered that I am not suitable for LVA there.

I've had secondary lymphoedema in one leg/foot since May 2017 following gynae cancer treatment in February 2017. The swelling is fairly well controlled with a class 2 flat knit stocking + toe caps albeit 2 or 3 of my toes are troublesome.