Update on my surgery in Belgium

[Law_Student]

Thank you to everyone who has sent me their good wishes. I have now returned from 3 weeks in Belgium when I had advanced treatment for secondary lymphoedema in my leg. This included super-microsurgery. I am delighted with the outcome. I am very grateful to Dr Guido Giacalone and his team of specialists at the Erica Hospital in Geel, Belgium. If anyone would like to know about my experience in detail please do contact me by email: [e-mail]. Merry Christmas and Happy to New Year!

[Hidden]

oh how awesome for you

[naominorthenellis]

congratulations - sounds like a great result; what a note to end the year on! NNE

[MarianneC]

Thats great news for you. I recently had Supermicrosurgery at Nuffield Oxford for my leg and groin Lymphoedema but still recovering. Just wondering why you needed to go to Belgium for this treatment when it is available here. Did you also get liposuction?

[Cherry35 in reply to MarianneC]

Dear Marianne I have been in touch with Oxford Lympoedema Practice as well, could you please advise how did it go and are you happy with the result so far?

Thank you

[MarianneC in reply to Cherry35]

Hello Cherry. I got my operation on 12 November so it's only been a few weeks. It went well although the surgery was long, 9 hours, but they did 10 separate lymph anastomoses which was good. It's too early to see results as I'm still recovering from the operation, but I have high hopes. I go back in February for a follow up. Both Alex Ramsay and Dominic Furniss were very professional and friendly to deal with. It's so good knowing that there is something available now to help. I paid for the treatment privately and have been trying to get the NHS in Scotland to pay for it, so far without success.

[Cherry35 in reply to MarianneC]

Thanks for your reply Marianne, I hope you will start to see the results very soon.Good luck with trying to get some money from NHS, at least if they would pay part of the cost would be good.

[dorih77 in reply to MarianneC]

Hello Marianne! I have lymphedema at my left leg and it is very swollen. Please tell me how you feel at one year after surgery? which was the cost of surgery? swelling of your foot decreased after surgery? Thank you!

[MarianneC in reply to dorih77]

Hi there,

I had the operation on both legs and had 5 seperate incisions with two anastomoses in each one, so making 10 in total. It has made a difference to the size of my legs particularly the one which was biggest. The difference between the size of my legs has reduced by 40% approximately. I used to get a lot of cellulitis and although I still get it occasionally, the recovery is much quicker. I am pleased with my results and think it was worth getting. The cost of this operation is now £15,000 and I paid for it myself.

Hope this helps,

Marianne

[dorih77 in reply to MarianneC]

Thank you for the reply!

[kate1983 in reply to MarianneC]

dear MarianneC,

its beed I wile since you had your operation, I would like to ask how are you legs now after 2 years, my partner suffer for lymphedema and we considering micro surgery in oxford, its very expensive but it is our hope to back to normal life, did you received any refund from nhs? it would be nice to hear from someone who was in our situation, appreciate any info from you

[MarianneC in reply to kate1983]

Hi there Kate, yes its been a few years since my operation. My legs are still about the same size and haven got any bigger which is good. I definitely get much less attacks of cellulitis than I used to and recently went a few months without one which was a massive improvement. I still think it was worth doing although it was very expensive. I didnt get any funding frim the NHS.

I m actually going to Oxford with a friend soon to see if she is suitable for the op.

You would need to go for an initial consultation and the green dye injection to see if you are suitable as not eveyone is. This part would cost you about £600/700. However even if you are not suitable its still very useful as you get to see a map of your Lymphoedema and exactly where the problems lie. This can be really helpful in knowing which areas to focus on for massage etc.

Good luck if yoy decide to go ahead. I certainly havent regretted it but everyone is different.

Regards,

Marianne

[Law_Student]

I had 3 weeks post-operative decongestive therapy as well as super-microsurgery. I did not have liposuction. I am in the process of writing a full account of my experience, including photographs of my legs before and after treatment. I hope to complete this within the next few weeks. This will explain why I decided to be treated by Dr Giacalone. If you email [e-mail] I will send you a copy.

[MarianneC in reply to Law_Student]

Thanks for the reply. I will be very interested to read your account of how it all went. It's great that we now have some hope for this condition. I will e mail you.

[brzlw2 in reply to Law_Student]

Hiya I would be really interested in receiving a copy of your account please. My email is [e-mail]. thank you!

[angler in reply to Law_Student]

hi I would love a copy please as I am going to try to get funding for this.

[Jay-tay in reply to Law_Student]

Hi,

I have primary lymphodema in both legs below the knee, iam a considering micro surgery at Oxford.

I'm interested in your story, could you send me a copy.

Many thanks

Jamie

[Lizziejane]

Very well done to you,and sincerely hope the results will just keep on improving.....?!

Its so fantastic that this treatment has now become available in the UK,and I have been to see the Consultants at the Nuffield,Oxford,and now have an appointment to have Surgery in January !! I have secondary Lymphoedema in right arm as result of Breast Cancer Surgery in 1994,but didn't develop Lymphoedema until around 2004,and managed it reasonably well until bitten by mosquito in Italy in sept 2012 which made it much much worse...... I look forward to hearing more on your continuing recovery..!

[Lizziejane]

Hello Marianne, very pleased to hear your surgery went well&you were happy with the Surgeons,Alex Ramsay and Dominic Furniss. Having met both of them myself for the preliminary tests,I also found them to be very friendly and professional,and no questions were too small and all answered and explained fully. I very much hope the following months for you prove positive,and it just keeps improving!?! I am looking forward to having my surgery in january&will let everyone know how things went

Like you I also have to self fund,after trying to get some contribution from NHS in Cornwall and also private insurance,but nobody will touch it as saying its too new,experimental,and unproven as yet,which sadly doesn't help all the people out there with this condition....!

[MarianneC]

Yes they are saying exactly the same here, it's an experimental procedure and under trial. It's really annoying as not everyone can afford to pay for private treatment. I am going to appeal and then I will go to the Ombudsman. However waiting until I have more positive results before I do that. It's best to have as much evidence as possible.

[Lizziejane in reply to MarianneC]

Hello Marianne,this is just a little catchup to see how you're doing,hopefully fully recovered and perhaps seeing some little improvements? I know it's a long slow process&keeps on working over the years,but at least now it can only improve!!

I have only just had mine done,same as you at Oxford by Alex Ramsden&Dominic Furness whom I couldn't speak more highly of......obviously mine being an arm didn't take as long,5&half hours,with 3 connections,one split into two as big enough to do,so hopefully will do a good job!?! Unfortunately 2 of the nodes were on the small side,and were the only ones available,so it's everything crossed they will work. At least I have tried,so won't wonder if only..!! Now a positive outlook,that have given it a go,so only way is up from now.......!!

[MarianneC in reply to Lizziejane]

Hi Lizzyjane, I am doing well thanks. I feel as though my big leg size has reduced a bit, but more importantly I have not had any attacks of cellulitis since the op. This is despite the fact that I have not been taking antibiotics as I have become allergic to them. So far so good. If this continues I will be really pleased. I go back for a follow up visit in February. I'm very pleased to hear you have had your op too and I really hope you get an improvement but it might take a while to show. Did you get cellulitis attacks regularly? Good luck with your recovery and please let me know how you are doing. I will post an update after my follow up visit. Regards, Marianne

[Lizziejane in reply to MarianneC]

Thank you Marianne,and same to you with your recovery...I only had one episode of cellulitis,so I obviously got away lightly judging by comments by other sufferers...just hope that it won't happen again,especially as going back to Italy in June&that is where it happened before!! But we can't let it stop us doing the things we enjoy can we?! Regards Vicky. If you ever want to e.mail me you can on [e-mail]

[Lizziejane in reply to MarianneC]

Hi Marianne,I just wondered how you were getting on now,and how much more you have improved? Hopefully your leg has continued to reduce in size since your last update and you haven't had any complications?

My lower arm is less swollen&softer and certainly doesn't ache as much,so hopefully will continue to improve with time?

I haven't as yet been back to see Dominic or Alex,as I have had so much going on since the op,selling/buying homes,new Granddaughter arriving early,and helping husband recover from Heart Attack/Triple Bypass......so will try see them in July/Aug to see how they think things are going! Take Care and will be nice to hear from you sometime.x

[Law_Student]

Hi Marianne, I obtained some funding from the NHS but it was a time-consuming and frustrating experience. If you would like me to hep you with your appeal please email [e-mail]. What we probably need is a case to go to the High Court or European Court of Human Rights. This would set some legal precedents and eliminate some of the hoops we all have to jump through to get ANY treatment. When I complete my law studies in July 2014 I will volunteer to work with pro-bono lawyers to help all sufferers of lymphoedema get the best possible treatment for this distressing condition.

[MarianneC in reply to Law_Student]

Hi law student, that's brilliant you managed to get some funding and I can guess how frustrated you were? I'm feeling there is no point in appealing at the moment until I get some more evidence that it has worked for me. I was thinking of waiting until after my follow up visit in Feb when I can hopefully report some improvements. However I believe you can't introduce new evidence at appeal stage so it may need to be a new application. What do you recommend? I will also e mail you but this post may help others too. I would be happy to go to the High Court but obviously the costs may be prohibitive which is a worry. It's very good of you to try and help fellow sufferers. Regards, Marianne

[HarutXP]

Hi.. Greetings from Armenia.. please help me, my mother suffers from lyphoedema in both legs. she needs microsurgery. I prefer Belgium as i have some relatives there.. please tell me how I can

get in touch with certain doctor in Belgium,

[Law_Student]

Hi, The best way to contact Dr Guido Giacalone at St Dimpna Hospital, Belgium is by email: [e-mail]. It is best to send him some details about your mother's medical history and photos of your mother's legs. He will then wish to have arrange a phone call with her to give her some initial advice and decide in what way he may be able to help her. Good luck, Marion

[HarutXP in reply to Law_Student]

First of all Thank You. do You think that if her both legs need operation, the price of it will be twice higher?

[Law_Student]

I'm sorry I don't know. All I can tell you is that Dr Giacalone will do whatever he can to help your mother.

[HarutXP in reply to Law_Student]

Dear, I email him my letter but there is no answer. I am waiting for his answer already two days.. please can you email me what kind of documents have you gained for the operation tell me particularly how we can do it with the insurance

[dorih77 in reply to HarutXP]

Hello! I have lymphedema at my left leg and it is very swollen. Tell me please if you have been to a doctor in Europe for advice. I heard that Dr. Giacalone is very skilled.

[12rose]

Hi dear, I am glad you done your surgery and are happy. Can I ask you how the surgery worked? would it cure 100% and how much does it cost? I contact Prof in Italy and he said, he can treat my leg and cost 50000 Euro. is difficult for single mum and unemployed to pay this amount of money, I was owndering if your experiance can help me.

thank you

[dorih77 in reply to 12rose]

Hello! I have lymphedema at my left leg and it is very swollen. Tell me please if you have been to a doctor in Europe for advice. I heard that Dr. Giacalone is very skilled.

[BlackBat]

Hi,

I am potentially interested in this surgery. Can anyone tell me who all the major players are in Europe?

I think I know about the UK ones from various posts on this forum, but what about others in Europe? Are the UK surgeon's all using Dr Koshima's technique?

There are Drs Giacolone and Opheide in Belgium. Is their technique also the same as Dr Koshima's?

Prof Campsi in Italy has been doing this sort of surgery longer than Dr Koshima (over 30 years), but he uses a slightly different method to Dr Koshma. Does anyone here understand the difference between Dr Koshima's and Prof Campsi's techniques? What are the pros and cons?

Are there people anywhere else in Europe that do this sort of surgery? There are specialists in Sweden but I think they just do the liposuction and in Germany (Prof Baumeister in Munich) but he does grafting which is different again.

[Berkley in reply to BlackBat]

My lymphodema was the result of having liposuction!

[whisker5]

Mat Griffiths at Broomfield hospital Essex and Jaume Masia at Barcelona I think...

[Berkley in reply to whisker5]

Have you heard of any successes as a result of surgery performed by these two surgeons please?

[whisker5 in reply to Berkley]

No, not yet- but I'm going to talk with Masia next week...

[whisker5]

Like Blackbat, I would also like to know the differences in Koshima's and Campisi's techniques and pros and cons if anyone can help. Also like to hear from anyone else who's had microsurgery or who's researched it.

[whisker5]

Me too!

[AMH2]

Hi, I have secondary lymph in my left leg following surgery (3) and radio for cancer. I am really interested in surgery as my condition has worsened over the past 6 months and spread to my foot. I am really interested in hearing your story and whether we have a similar condition. What made you go to Belgium?

[whisker5]

Hi there-so sorry but didn't end up speaking with him so I don't know...

[dorih77]

Hi. I have lymph in my left leg too. Do you want to surgery on your left leg? I heard dr Guido Giacalone from Belgium is very skilled.

[kate1983]

hi there, its been very long time since your operation, but i hope is not to late for m to ask if there is chance to send me details of your story on email [e-mail].

my partner is suffer for lymphedema in right leg , we contacted already clinic in oxford for microsurgery but also for liposuction somewhere in sweden and its very hard to decide what will be best, I believe with your help might be easier for us to choose

[2012Amordemae]

Hi, I'm happy for you and I'm glad you are happy with the results.

I suffer with primary Lymphoedema, I would like to be a candidate for surgery. Through NHS I failed the LVA, the Nurses couldn't located my lymphatic channels. I know they do the super-microsurgery in Oxford which sounds very expensive (£15.000).

I would like to contact the Hospital in Belgium, where you did your surgery. Also, I would like to know how often you had to travel to Belgium? How long the surgery took? How much it cost you; one leg/ both legs? Did you have or had a heath insurance?

Many thanks