I had a consultation with Mr Ramsey yesterday, not surw if I'm a candidate for surgery yet (need more tests)but he has only done 25 surgeries. Has anyone had surgery with him? Any recommendations or otherwise? If im going to get this done want to ensure its the right person
Has anyone had surgery with Kelvin Ramsey?: I had a... - LSN
Has anyone had surgery with Kelvin Ramsey?
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AMH2
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I met Mr Ramsey and his team a few weeks ago at the Marsden Sutton for testing. Sadly they have to reject 60% of those they test and I was also unsuitable for the microsurgery so can't comment on that. However, I can tell you that they took very good care of me during the testing process. I have lymphoedema in my right leg and was expecting the injection of dye between my toes to be uncomfortable or downright painful but as they numbed the area first it was fine. Good luck, I hope you are part of the 40% who are suitable for the procedure and the Marsden team are among the best in the world.
Thanks pony girl, I'm
Sorry you were not a candidate, not sure if I will be either, fingers crossed. I have it in my left leg
Hi pony girl, ( like the username ). You said u had a lymphocitigraphy? But this stuff is very painful. I am suffering from LE in my left leg and left knee and heard of a new lymphatic MRI which would replace this painful procedure. Any difference btw Those 2?
Like your name too! Sorry I don't know about MRI so can't advise.
Hi ponygirl, you said that you found out u were not candidate for the microsurgery, may I ask u how much it cost u if they cannot locate a suitable vein? Sorry Iam curious
Hi it's not really about finding a suitable vein but whether your superficial lymph channels are good enough to attach to a vein. Cost of consult and scan c. £500
It costs about 10-15000 pounds privately or thereabouts...
thanks, it is not much compared to others experts. Do you know if it is possible to have it done publicly. It seems that all the lymphedema clinic are private?
I haven't seen a surgeon yet but I have a consultation booked. I really identify with you as I have been trying to research about differerent microsurgeons on the web, but there aren't many patient testimonials and results of surgeries except for the big names like Campisi. Good luck.
I'm wary as I have had bad experiences in the past, not with anyone from the Marsden though they have been fantastic, it one of the reasons I am in the position I am now as a result of a prior surgeon's mess up. The guy in Japan seems to be the best in the world but Japan isn't exactly convenient and I have no idea what it would cost
Hi Amh2, I am in the same situation as u. I am also the result of a surgeon 's mess up! The Cost varies but it is between 8000 and 12000 euros. 
Frustrating isn't it, did I hear you mention you're Irish? Thats where I had my original surgery which has landed me with lymphedema
Sorry, did not see your message completely before as i am so desperate to get the op. I am half irish half french. Really? Well you know it does not surprise me at all because Ireland medical care is a big joke! I still go to france to get medical advice cause Ireland is completely ignorant. I can tell you some incredible stories about the way they treat people here.
Sorry about your leg.
I am trying to get connected on facebook to go viral about all this matter and get some more research done before it is too late for us. Would do you like to give me your email adress and we can connect on facebook?
Have you approached VHI and requested that they pay? they paid for my op in the UK. I'm not on facebook I'm afraid. Perhaps you could get in done in France, they have a much better public health system
Hi Amh2, I checked in france already and apart from Dr becker who performs lymph node transplant, there is nobody pretending to heal you! Yeah I started the treatment abroad process with VHI but they want me to see my consultant in Ireland Mary Paula Colgan but she is in complete denial. She filled out the form but does not want to see me again. Vhi says I need to visit her again before vhi can submit the claim. That is what is happening in Ireland!
My advise is fight, you will get there eventually like I have. If you are not getting satisfactory service from Mary Colgan (who I have not heard of), go to another consultant or back to your GP for another referral. Is she disputing the fact you have lymphodema or just saying there is nothing else she can do for you?
If the treatment is not available in Ireland, VHI should pay for treatment abroad and this is in your policy. If all else fails get a solicitor to write a letter to VHI, this should only cost about 100-200 Euro.
Might be an easier sell to come to the UK for treatment rather than Italy, plus follow up appointments will be easier for you from Ireland. This is who I had mine with olp.surgery
She does not even want to see me cause she says it is incurable when she deeply knows I am a secondary case.
AMH2 You are the best! Thank you very much for your amazing advice, that is exactly what i needed after this past dramatic and heartbreaking week that i had to go through. I will surelly look into Oxford. Maybe easier indeed. I just need to get VHI final answer first. They seem to want to help so far.
I will certainly contact a solicitor if it gets bad and follow all your advice. God bless you!
Well that's helpful of her! We all know it is incurable but that doesn't mean she shouldn't try to help you manage and control it. The team in Oxford and great.
It's really stressful fighting to get the treatment you need, try and stay positive and don't take no for an answer
You are great. It is a pity you are not on Facebook. You sound like a great friend to have. Would u consider working for a lymphedema organisation? Once I get this operation, I would love to go fighting for others. Have u tried dr Giacalone in Belgium? He seems to have a reasonable price.
Feel free to message me if you need to. I have never considered working for an org, its a full time job managing this bloody condition! I didnt look at Belgium as there are good doctors here in the UK
True n true. Let's see what happens after the 1st of January.
I am on the same situation there. Trying to find some good references.
Hi whisker 5, How are u? did you get the operation or are you still waiting for some news?
Kelvin did some surgery for me although not the lymphatico-venous anastomoses that I presume you are having. I am pleased with my surgery but it was quite simple compared to the LVA. I am sure he is extremely good and he works closely with Prof Mortimer who is very experienced in lymphoedema. I had LVAs done in Oxford with Alex Ramsay and Dominic Furniss (colleagues of Kelvin) and I have been very pleased with my experience in Oxford. All these plastic surgeons are highly trained and will be used to dealing with intricate surgery such as the LVA so I don't think you need to worry. Best of Luck!
Hi there,
I had the LVA Supermicrosurgery operation last year and was impressed by the professionalism and care of Mr Ramsay and Mr Furniss. It was a long operation at 9 hours but I watched the procedures being performed on the TV screen which was difficult to do but very interesting. I had a total of 10 anastomoses carried out. At my first follow up visit the difference in size between both legs had reduced by 40% which was a great result. My left leg was much bigger than the right. I had to cancel a recent follow up visit but will be going again in August. I am expecting the reduction to be even greater. In my view it has been successful so far for me although improvements can occur for up to 4 years after the op. I am hoping to eventually be fee of cellulitis and not require to take antibiotics. It was expensive though at a total of £13k which I had to pay myself but hopefully well worth it. Hope this helps. Marianne
Sounds like your op has been a success, gives me hope. What made you choose the team in oxford over the Marsden? Are you garment free?
Do you mean Alex RamsDEN? (He's the one in Oxford who works with Dominic Furniss I think...
Oops sorry Marianne. I've now read his post further down- he already replied and settled the confusion.
Point of info for readers
I am Alex RAMSDEN and also enter posts here under the name Microsurgeon. I am a plastic and reconstructive microsurgeon in Oxford at the Nuffield Orthopaedic Centre and the Nuffield Manor Hospital . I work with Dominic Furniss. I regularly perform LVA for lymphoedema and have operated on 50 patients (Dec 2014). My other area of interest is microsurgical reconstruction for complex bone infection (osteomyelitis).
Kelvin RAMSAY is a plastic surgeon who works in the Royal Marsden and also performs LVA. Whilst we collaborate at a national level we are not part of the same surgical team.
I hope that helps clear any confusion.
Had the scan today, I'm not a candidate. Devastated
Hi, I'm very sorry to hear that. You need to try and stay positive. There are other treatments out there that you could maybe check out e.g. Specialist Liposuction. This is being practised in several places now. Have you had MLD treatment?
I have secondary Lymphoedema after treatment for breast cancer and have been trying to research the risks and benefits of microsurgery. I am really sorry to hear that you have been told that this is not suitable for you but I wonder if you would be able to share the explanation for this decision.
I have had the scan done and have been told that my Lymphoedema is very severe but that I would a candidate for surgery. I am worried that given the stage of my Lymphoedema that I might go through the surgery and be no better but worse still would be if it caused more problems.
I had the infrared scan which didn't show any superficial lymph channels which they could attach to a vein. My view of the LVA surgery from what I have read, is that it is very low risk with a very big potential upside. I had no doubts about going ahead if I was suitable. I guess you have to weigh it up for yourself and make sure it's the right decision for you
Hi Seashore girl , how are you, how is going on after your operation?
I am between the 40 % and luckily I have been approved by Dr campisi ( I heard the best) for the operation, waiting for the irish health board to get back to me with a positive answer.
Do you think the operation is worth it? how likely would you recommend going for it ?
Did you have some complications after the operations?
How is your life now? Do you still face some episodes of infections?
Hi Amh2, nice to meet u. What did they say to you?
Are u primary or secondary? Why can u not get the surgery?
Secondary. I am now having it with another surgeon
congrats! let me know how it goes. best of luck for the next one.
Marianne, really good to hear you have had the surgery and are pleased with it. I have been re reading posts to update my information as currently looking at the surgery options myself and came across the trail between lots of us and 'microsurgeon' brilliant that his helpful approach on LSN transferred into successful surgery for you.
Hi marianneC, thanks for the info. Are u primary or secondary case? Are u still wearing your garment?
Marianne, how soon after the surgery did you see results?
Hiya, when I had my follow-up appointment 6 months after the operation the difference between my legs had reduced by 40%. I was really pleased with that. However I certainly noticed changes after approx 3 months. It's best to take actual measurements as you can't really tell on a day to day basis.
Good luck!
I am c. 7 weeks in and not noticing any major changes so I was concerned but I am comforted by the fact that you didn't see improvement for 3 months. I clearly need to be more patient!
Yes it's a bit soon at 7 weeks. The changes happen very slowly such that it's difficult for you to notice. I was really surprised by the 40% reduction as I didn't realise it was anywhere near that!
Mr Ramsay posted on this site saying that he was offering these services. I looked into the training and experience of him and Dominic Furniss and was satisfied that they were sufficiently experienced. I still wear a stocking on my left leg but hoping maybe that can go in the future. If you have any more questions more than happy to answer.
Hi, It wasn't too long before I recovered. Obviously a bit tired for a few days afterward and I waited a week to get the stitches out. I wasn't really in pain though and it was just a case of being careful to let the small wounds heal up properly. I have secondary LD which I have had since 1998 since I had aggressive radiotherapy treatment for cervical cancer. It had gotten worse over the years hence the reason for considering the Supermicrosurgery treatment which wasn't previously available. M
Thank you Marianne, I hope it continues to improve for you. Fingers crossed I'm a candidate, sounds like it's certainly worth a shot!
Hi MarianneC, how are you, how is going on after your operation?
I am between the 40 % and luckily I have been approved by Dr campisi ( I heard the best) for the operation, waiting for the irish health board to get back to me with a positive answer.
Do you think the operation is worth it? how likely would you recommend going for it ?
Did you have some complications after the operations?
How is your life now? Do you still face some episodes of infections?
Hi there,
With regard to the operation I would certainly recommend it if they think you are suitable. I had a problem this year when I developed a very bad case of cellulitis after getting an MLD massage! Totally unrelated to the operation, but I ended up in hospital for 9 days. It was a very bad infection as the MLD must have provoked something in the groin. However I was very impressed with how quickly my legs recovered from the cellulitis. All of this happened in May and I was ill for about 3 months and still have the original infection in the groin area. However despite this when I went for a follow up visit in August my leg reduction was approx the same I.e. 40% difference. I was very surprised as I fully expected them to be bigger after all the infection I had.
Since then I believe my big leg has reduced in size again but don't know that for sure until I visit the clinic in Oxford again next year.
The groin area remains a problem but I didn't get any surgery there.
A big advantage of the legs having better lymph flow is that I don't have as much formation of the lymph blisters on the groin area which were previously really bad. This alone has made a massive difference to my life.
So I definitely think that for me it's been successful although it's not a cure all procedure, but may reduce the symptoms and keep cellulitis at bay.
Hope this helps.
Best of luck with your funding application.
Marianne
Forgot to say that I have had many episodes of cellulitis over the years and they had been increasing.
Good luck!
Dear Marianne and all
I am Alex Ramsden. I work in Oxford with Dominic Furniss at the Nuffield Orthopaedic Centre and the Oxford Lymphoedema Practice.
oxfordlymphoedemapractice.c...
I have left a few posts on this website and regularly operate and see lymphoedema patients.
I am not Kelvin Ramsay who works in the Royal Marsden in London performing surgery there. We are both Plastic Surgeons.
Sorry for any confusion and hope that clears things.
Marianne, I'm glad things are going well and look forward to seeing you in August.
Regards
Alex
Hello, I had a referral to Oxford from my GP just a few months ago for Lymphoedema then received a letter from you to say unfortunately you were not taking on NHS patients at the present time. Looking forward to the day when this gets resolved for everyone.
Would you know if Dr Gennaro in Italy does the same technique as yourself?
hello , I am having same problem docter referred me may , and got a letter from st oswalds they are not taking no new patients yet that was in june, still waitin from Andrew Newcastle upon tyne
Oops sorry for the name confusion !!! Old age is a terrible thing
I am italian and have lymphoedema in my left leg. I would like to let you know that in Italy Dr. Gennaro performs LVA with supermiscrosurgery. He has been trained by prof. Koshima in Japan. I've been told this procedure differs from the one applied by prof. Campisi as there are less risks of worsening the condition.
I myself have been through this surgery three months ago. So far I cannot say i have experienced significant improvements but I know it takes time (a year)
For those who are interested, this is the link to Dr. Gennaro website.
Thanks for your message Robi65. Did you have lymphodema for long before you had the surgery? Were you expecting better results?
Hi Roby65, thanks for sharing yur experience. Very kind of u. I am doing some research as well as all of us here, trying to get as much info as I can. Iam secondary LE. How is your life now? Do u see any progress since your last post? Do u still wear yur garment?
I have had lymphoedema since 2006 but for the first five years it wasn't really affecting my everyday life as the swelling appeared mostly during summertime. My condition worsened in 2011, after a cellulitis episode.
As for the results of the surgery, it's really to soon to say...I've been told that improvements come very slowly, even after years...but there are times when I feel a little discouraged ..I don't xpect complete healing, of course..all I wish for is to improve my QOL...
Hi Robi65, sorry but i am pretty new on this website, comtemplating getting surgery. English is not my native language and i dont really understand what you all mean by " cellulitis episode" or 5 or 6 instances of cellutis. what do you mean by that?
I have some cellutis on my arm and leg but it is not massive.
English is not my native language too so I apologize if I did not make myself clear. By cellulitis I meant episode of infection...
For the time being I am trying to keep my LE under control, as I have been told to do by the surgeon, at least unti next l follow up visit which will be in November. I wear my garment everyday, wrap my leg every night and keep the limb lifted whenever I can. Doing this routine I have noticed slight improvements but I am wondering wether I would have achieved them even without the surgery..anyway it's too early to come to a conclusion as the doctor said it would have taken 6-12 months to see first results...
Ok I understand. I never had infection on my arm or leg which make me think I might be primary cause the swelling is not massive but located a bit everywhere. Thanks for this clarification robi65
Actually you get infections either with primary or secondary lymphoedema. I presume you haven't had the condition for a long time and you probably your LE is at mild stage (I hope it remains this way!)
Cellulitis may occur because of infections due to tiny injuries (a mosquito bite, a small scratch); personally I have experienced them twice, just because I have been walking too much without wearing the compression garment. The leg has swollen up and a red stripe has appeared on the internal side of the leg. I had to take antibiotics for a couple of weeks and since then the condition has worsened.
Now I never forget to wear the stocking and try to avoid all the activities that may cause a massive swelling.
Hi, I have had surgery (LVA) with Mr. Ramsey in January 2013. The operation went well without any incidents and since the surgery my arm has definitely improved. It is a slow improvement, but definitely an improvement. Unfortunately in March this year I had cellulitis caused by another operation I had to have on my reconstructed breast so this set me back again a bit. But now my arm has started to improve again and the swelling is going down. So far it is not a cure but even if my arm doesn't improve any further I am happy with the results. But the arm could keep improving so I just have to be patient. Mr Ramsey is lovely and looks after you extremely well, I trust in his abilities and skills completely.
Hi PaddyZ, How are things with you? we did not hear of you for a long time now. is everything ok?
Hi everyone,
I went to see Dr Campisi in Genova, Italy, after finding out I wasn't a suitable candidate to be operated at the Royal Marsden (everyone has been impeccably professional ad extremely kind as it is in the style of the RM).
After doing some research I went to see Dr Michelini in Rome and through him I have been put in touch with Dr Gennaro. The doctor very kindly explained the nature of the operation he performs and how this differs from that of Campisi and others; he accepted to put me on a waiting list, which is a bit long.
Being Italian by birth entitles me to receive the operation for free and since it doesn't come with major caveats or side effects nor risks I decided to go for it and see how this goes.
There should be ways for UK based patients to be entitled to receive treatments in European countries at the costs that are normally applied for the local citizens of those same countries.
I will be sending updates soon, but as Robi65 already expressed and how Dr Gennaro clearly states it, the operation is devoted to prevent the lymphedema from worsening, at least in my case. It is not a cure that works 100%, though some patients were lucky enough to see their condition improve to the point of not having to wear the compression garments. Those were not the majority of the patients who received the operation, but still they probably represent a reason to hope for a better future for many of us.
I was told that it might tae up to six months or even a year until one starts seeing any improvement after the operation, as this can be a very slow process.
Regarding liposuction, I am under the impression that this might risk damage the good lympnodes or lymph vessels that are already in the affected limb; it should only be used in cases where lymphedema is particularly aggressive.
Good luck everyone!
Hi multimarcus, I have had a similar experience in that I was not a candidate in RM however Prof Furniss and Mr Ramsden in Oxford operated on me last Tuesday. Too early yet to see results but I am very hopeful that 11 anastomoses will at least stop the condition worsening. The surgeons believe I have a good chance of improvement. I was lucky, my private medical insurance covered the cost. I think the message is don't take no for and answer, get a 2 nd opinion. Good luck with your surgery!
Hi AMH2, how are you, how is going on after your operation?
I am between the 40 % and luckily I have been approved by Dr campisi ( I heard the best) for the operation, waiting for the irish health board to get back to me with a positive answer.
Do you think the operation is worth it?
Did you have some complications after the operations?
How is your life now?
Hi Bluedolffin, congrats on the good news. It is only 7 weeks since my surgery so too early to really see results but I dont regret having the op. It is really minor surgery compared to my prior surgeries. I have 3 small scars on my leg, which healed after a couple of weeks. I had no complications and as I had it under local anaesthetic , I walked off the operating table and went straight home.
THANKS A MIL AMH2. Make me confident about going ahead with it.
Good luck.
Keep in touch
Good luck, I hope it's s success for you
Hi guys, I plan to go viral on Facebook to tell about how much the way we are taking care of is a disgrace. Trying to get the support we need cause it is not good enough. Is anybody that would like to get connected on Facebook to fight this together? The only thing i need is your email adress to get connected. the more email adress i get the better. We can all be connected on Facebook and tell them all the truth about what is really going on !
My plan is to do something similar to the ice bucket challenge. This condition needs to be finally recognized as serious. If Specialists don't want to help us, we need to be as loud as we can. This is truly unacceptable to be treated that way! I am going to make a video of me explaining it all in short word why nobody wants to truly help us and let us get worse!
hi Bluediffion I have just joined this site and have been reading all the comments I have lymphodema due to radiotherapy for cancer I had non hodkins lymphoma mine is in my leg. I had a stem cell transplant on the 3rd September 2015 its to early for me to have any op's yet but I want to look into my options for my lymphodema as I can honestly say it causes me more stress that the cancer and the stem cell transplant. I see its a year ago since you posted this comment I would be interested in any updates you have about yourself your campaign my e mail is chris_yeomans@hotmail.com I do hope you are all sorted now and on road to recovery
Hello Blue Dolfin. Not a regular here, but also have secondary lymphoedema in the legs.
Have you actually established a group to campaign for more resources etc.?
Would be very interested to have progress report!
Many thanks.
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