In the fall of 2016 I got desperate.
I had had the erysipelas infection in my legs 22 times since I had overcome cancer – and the infection kept on coming back. I could not seem to stop it in any way. Everytime I had finished my three week medication-period, the infection came back a few days later. And I had to start all over again on being ill and taking a ton of medication.
Every time the infection came back, my lymphedema worsened and especially my thighs seemed to get more and more broken down, with the lymphatic system not working in any way. So my boyfriend started to look into surgical opportunities for lymphedema patients in the hopes of putting an end this downward spiral.
We ended up doing a whole lot of research on what surgical options you have when you suffer from lymphedema – and also what effect the different surgeries could have on the amount of infections I got.
The level of information about this subject is really, really poor in Denmark. Even the specialists within the area of lymphedema do not know much about it. This was extremely frustrating for me because it meant I had to do all research from scratch, not getting any help from people who are actually medically educated. And I myself – and my boyfriend – had to evaluate the risks ourselves. After months and months of research and visits at foreign surgeon’s office, a specialist at Bispebjerg Hospital offered to help me the best he could and I do not know where I would have been today in relation to my lymphedema, if he hadn’t offered to help me figure everything out.
But that does not change the fact that you yourself – as a patient – have to do a lot of research and work hard to figure it all out when it comes to lymphedema and surgery. That is why I have written this specific article on Lymphoria.com; to help others find the information I myself worked so hard to find and understand.
I ended up not getting any kind of surgery. You can read my story about surgery in the last section of this article.
- What kind of surgeries can be done in relation to lymphedema?
- Surgeons (in Europe only)
- Relevant examinations of your lymphedema (before surgery)
- For the Danes: Operationsmuligheder i Danmark
- For the Danes: Offentlig finansiering af operationer i udlandet
- My story – and why I ended up not having surgery
What kind of surgeries can be done in relation to lymphedema?
First of all, the most important thing to know about surgeries and lymphedema is that this subject consists of hundreds and hundreds of informations, research articles and opinions. I can only try to give an understandable overview of the area. And since I am not a doctor myself, I have chosen not to write any personal opinions to the different surgical opportunities. I would always advise that you yourself seek help at a specialist’s office if you are looking into surgical options in relation to your own lymphedema.
What I discovered during my research was the following kind of surgeries:
- Supermicrosurgery (LVA)
According to Oxford Lymphoedema Practice in Oxford supermicrosurgery was pioneered by Professor Isao Koshima in Japan. It is called supermicrosurgery because the surgeons are working under a microscope, operating on the tiniest of vessels. The easiest description of the surgery would be to say that lymphatic channels are connected to veins. This means that the veins are suddenly given the job of transporting the lymph fluids – that the lymphatic system is not capable of transporting itself at time of the surgery – and the lymphatic fluids now have a way of better being transported through your body.Accordingly there are very good results doing these supermicrosurgeries and surgeons report of more than 80 % of the patients having thinner limbs after the surgery.As far as I understand there are different approaches to this kind of surgery. Some doctors – like the ones experimenting with it in Denmark – connect vessels to veins in for example your lower leg if they can see usable vessels in that area. Others do a small surgical cut in the groin area and connect lymph vessels to veins up there (if you have lymphedema in your legs).
In relation to the infections in my lymphedema limb, one of the practices that I was in contact with, wrote me that “Multiple Lymphaticovenular Anastomoses (LVA) reduces the volume of fluid in your leg which helps to reduce the environment where the bacteria that causes cellulitis and erysipelas infections likes to grow. The fluid will be moving so we would expect your instances of cellulitis and erysipelas to reduce. Studies confirm around a 80% to 90% reduction in cellulitis attacks.”
One of the surgeons performing the supermicrosurgery is Professor Campissi in Italy (find information about him below). When I consulted him, he informed me that he did not perform the usual supermicrosurgery which only uses the superficial lymphatic vessels to create new pathways for the lymphatic fluids, but that he also took healthy lymphatic vessels, both superficial and deep, in the area with lymphedema. This should apparently create more anastomoses that are more resistant to occlusion and therefore give better long-term results.
How the surgeries are performed – and the preparations for them – are very different from surgeon to surgeon. For example, I was told that the whole period at Prof. Campisi’ would take approximately 4 weeks; I would undergo 1-2 weeks of pre-operative procedures, have microsurgical operation with 5-7 admission and then 1-2 weeks of post-operative procedures before returning home. At other places you will just need to arrive at the hospital a day before the surgery to have the different tests done and then you will be operated on the following day.
In relation to price, this matter differs a lot as well. I was given a price of 40-45.000 € for the pre-operative intensive treatment, the surgery and the post-operative treatment plus 18-24.000 € for pre-operative exams, hospital stay, operation room, drug therapy etc. at Prof. Campisi’s. This price was for one leg only. As far as I understood other European cliniques only charge around 15.000 € for the entire procedure.
- Lymph node transplant
As the name of it states, this is the kind of surgery where you transplant lymph nodes from one area of your body to another; the lymphedema damaged area to be precise. That means that the surgeon would remove for example lymph nodes from your armpits and down into your pelvis area if you have lymphedema in your lower limbs like me.
- Liposuction of hard tissue
If you have a severe case of lymphedema swelling limbs, it might be relevant to look into liposuction. Many lymphedema patients have a liposuction where fat and hard tissue is removed, leaving the lymphedema limb much smaller. It should be said that liposuction does not cure the lymphedema, but only betters it.
- Stem cell surgery
As some of the first in the world – if not the first – the Danish University Hospital in Odense has treated lymphedema patients using a stem cell surgery. The surgery is quite simpel: A liposuction is performed on the patient and part of the fat tissue is centrifuged with an enzyme that dissolves the fat which leaves the stem cells. Around 4 millilitres of stem cells and fat is then injected into the patient’s armpit and from there the body takes over itself.So far the treatment is only done on trial basis (in Denmark). At this point 12 women has undergone the surgery in Denmark and so far the results are very positive and there are no side effects. The patients suffer much less from their lymphedema after going through this procedure.I do not know if this surgery is performed elsewhere in the world – and in Denmark it is still on trial basis which means that it cannot be offered to all lymphedema patients, but only an authority approved group of patients.
surgeons (in Europe only)
Since I myself live in Europe, I did not look into lymphedema surgeries performed outside the EU. As I understand by different webpages there are several surgeons doing similar surgeries in for example the US too. So if you live outside Europe, you should ask the national lymphedema association in your country if they can help you find information on this subject.
One of the most famous lymphedema surgeons in Europe is probably Professor Corradino Campisi. He is located in Genoa, Italy. You can read more about Prof. Campisi on his website.
There is also Oxford Lymphoedema practice with the surgeons Professor Furniss, Mr Ramsden and Mr Gore. This practice is located in Oxford, England. You can read more about them on their website.
I also researched my way onto the website of Prof. Dr. M. Hamdi and Dr. A Zeltzer. They are located in Brussels, Belgium. You can read more about them on their website.
From the Danish specialists within the area of lymphedema I heard about the surgeon Håkon Brorson, who is located in Sweden. He is recognized for his liposuctions of lymphedema patients. You can read more about him here.
There are of course many more hospitals and private practices where you can have surgery done as a lymphedema patient. These are only the ones I contacted and have heard of myself.
Relevant examinations of your lymphedema (before surgery)
I have written this section about relevant examinations of your lymphedema before surgery because I chose not to go through surgery as a result of me seeing the pictures from the scans mentioned below. Even though one of the doctors did not consider those scanning results to be problematic. But after discussing the case with the Danish specialists – who included the English specialists – within this area, I concluded that my lymphie legs were not suitable for surgery any longer. You can read more about my story in the bottom of this article.
Below you will find a short description of the relevant lymphedema examinations.
By doing a lymphoscintigraphy you will be able to get an idea of how your lymphatic system is working. The examination is as follows: You get a small amount of radioactive material (radiotracers) injected into the skin, for example in between your toes. The radioactive material then travels through your body, in my case from my toes and up into my upper body. This makes it possible for the special camera equipment to see how the material has travelled up through your body. The following pictures will show you how fast the radiotracers travel through your lymphatic system and your lymph nodes.
This test will give the doctors an idea of how your lymphatic system looks and works.
The PDE-examination (Photo Dynamic Eye) is a way of seeing if there are any intact lymph vessels in your lymphedema limb. In Denmark the PDE-examination is the thing that determines whether your are suitable for undergoing microsurgery – that is not the case in all other countries, though.
The PDE-examination gives the doctor an exact picture of your lymph vessels all the way up through your body. The examination thereby reveals if you have any lymph vessels left. This video on YouTube gives an idea of how the PDE-examination works.
In my case, the many infections have left my legs with no lymph vessels. Normally when you have this scan done, a lot of “spaghetties” will show in your legs, but in my case there were no spaghetties left. It is simply a “snow storm” in my legs (as a result of my lymph vessels leaking) when you see it using the PDE equipment.
For the Danes: Operationsmuligheder i Danmark
(This section is written in Danish, since it concerns surgical options within the Danish health care system. Since the Danish surgeons aren’t quite as far ahead as surgeons in other parts of Europe and therefore probably will not be as relevant as the foreign surgeons, I haven’t written this section in English.)
Da jeg opdagede, at der var mulighed for at blive opereret for lymfødem andre steder i Europa, og jeg stærkt overvejede at kaste mig ud dette, valgte jeg i første omgang at kontakte min betroede fysioterapeut på Herlev Hospital for at høre, om hun kendte noget til det. Hun fortalte mig, at der faktisk også er mulighed for at blive opereret i Danmark, men at det er forholdsvis nyt i Danmark sammenlignet med i nogle af de andre lande. Jeg blev ret overrasket over, at det overhovedet var muligt at blive opereret for lymfødem i Danmark! Jeg har været i hospitalssystemet så mange år med et utal af problemer med mit lymfødem, men jeg var aldrig før blevet oplyst om, at jeg måske kunne få en operation for enten helt at “helbrede” mit lymfødem eller i det mindste bare mindske generne fra det.
Min fysioterapeut mente, at det ville være en god idé at blive undersøgt af den afdeling, der foretager disse operationer, inden jeg tog af sted til Italien for at høre nærmere om operationsmulighederne dernede. Det viste sig, at det var på Herlev Hospital, at man foretager mikrokirurgi på lymfødempatienter, og min fysioterapeut havde derfor mulighed for at få mig henvist til de relevante forundersøgelser.
Som jeg har forstået det på Herlev, og efterfølgende Bispebjerg Hospital, er det afdelingen på Herlev Hospital, der generelt har ekspertisen inden for lymfødemoperationer her i Danmark. Jeg skal dog ikke kunne sige, om der også er andre danske hospitaler, der har erfaring på dette område.
På Plastikkirurgisk afdeling på Herlev Hospital udfører man – så vidt jeg ved – flere af de typer af lymfødemoperationer, som man udfører i udlandet:
- Lymfevenøse anastomoser
Operationen med lymfevenøse anastomoser er den samme som beskrevet ovenover på engelsk; dvs. der er tale om et indgreb, hvor man sammensyr lymfebaner og små blodkar, således at lymfevæsken kan få afløb gennem blodkarrene. På nuværende tidspunkt udføres operationen på forsøgsbasis på Herlev Hospital. Du kan læse mere om selve indgrebet her.
Ved fedtsugningen laver man nogle snit i huden, hvorigennem man fjerne en stor del af fedtet og væsken fra vævet i f.eks. den arm eller det ben, hvor der er lymfødem. Fedtsugning kan ikke “helbrede” lymfødemet, men kan reducere lymfødemet væsentligt. Det kan være relevant at få en fedtsugning, når man har sværere lymfødem eller mange tilfælde af infektioner i lymfødemet. Når man har gennemgået en lymfødemfedtsugning, skal man bære kompressionsstrømper døgnet rundt resten af livet for at undgå, at lymfødemet udvikler sig igen. Flere danske lymfødempatienter er desuden taget til Sverige for at blive fedtsuget af Håkon Brorson, som eftersigende skulle være specialist på området. Du kan læse mere om dette i DALYFOs blad her.
Kræftens Bekæmpelse har skrevet en rigtig god artikel om fedtsugning af lymfødem, som du kan læse her.
Ud over de ovennævnte operationsmuligheder opererer Odense Universitetshospital på forsøgsbasis lymfødempatienter med stamceller. Indgrebet består i en fedtsugning, hvor patientens eget fedt og egne stamceller sprøjtes ind i armhulen. Resultaterne af de foreløbige operationer er eftersigende indtil videre gode, og de opererede patienter oplever betydeligt færre gener af deres lymfødem. DALYFO har skrevet en artikel om emnet, som du kan læse her.
Du kan desuden læse Herlev Hospitals brochure om lymfevenøse anastomoser og fedtsugning her.
Såfremt du er interesseret i at høre mere om operationer for lymfødem, herunder dine egne muligheder for at blive opereret, vil jeg anbefale dig at kontakte Herlev Hospital og forhøre dig om muligheder for at blive henvist til undersøgelser på deres plastikkirurgiske afdeling.
For the Danes: Offentlig finansiering af operationer i udlandet
(This section is written in Danish, since it concerns the subject of Danes getting surgeries abroad publicly financed.)
Da jeg rejste til Italien for at høre om mulighederne for at blive opereret dér, havde jeg egentlig tænkt, at jeg “bare” ville låne pengene til en eventuel operation. Jeg havde på nettet læst, at det formentlig ville komme til at koste omkring 150.000 kr., og jeg tænkte, at det ærlig talt ville være hver en øre værd, hvis operationerne kunne hjælpe mig, så jeg ikke konstant blev syg. Men da jeg fik tilbuddet om operation i Italien, fulgte der en væsentlig højere tilbudspris med. Det ville sammenlagt komme til at koste mig omkring 1 mio. kr. at få udført det mikrokirurgiske indgreb i begge ben. Et beløb så højt tog bogstaveligt talt pusten fra mig. Så hvis jeg skulle gøre mig nogen forhåbninger om at gå videre med operationsplanerne, ville jeg være nødt til at få operationen offentligt finansieret.
Reglerne på dette område er ret komplicerede. Men konklusionen i forhold til lymfødemoperationer er umiddelbart, at det er svært at få offentlig støtte til indgrebet.
For at få en udenlandsk operation betalt af det offentlige kræver det, at der foreligger en reel henvisning fra det danske sygehusvæsen. Den henvisning forudsætter, ifølge sundhedslovens kapitel 5, at
- patienten forinden har været undersøgt eller behandlet på en sygehusafdeling her i landet, der inden for det pågældende sygdomsområde besidder den højeste indenlandske specialkundskab,
- og patienten af denne afdeling er indstillet til en nødvendig behandling på en nærmere angivet specialafdeling m.v. i udlandet, når denne behandling ikke kan ydes på et dansk sygehus,
- og at der ikke er tale om forskningsmæssig, eksperimentel eller alternativ behandling,
- samt at Sundhedsstyrelsen forud for behandlingen har godkendt henvisningen.
I efteråret 2016, hvor jeg så nærmere på alt dette, var den højst specialiserede afdeling inden for mikrokirurgi afdelingen på Herlev Hospital som omtalt i sektionen ovenfor. Reglerne for offentlig finansiering af operation i udlandet indebærer, at overlægen på den relevante afdeling på Herlev Hospital i forbindelse med deres undersøgelse af mig skulle have henvist mig til behandlingen i udlandet, fordi den behandling ikke kunne gives på et dansk hospital.
Problemet er bare, at der allerede udføres mikrokirurgi og de andre former for operationer i Danmark – og af den årsag nægtede kirurgen på Herlev Hospital at henvise mig, fordi behandlingen dermed ikke kunne opfylde alle de nødvendige krav i sundhedsloven.
Det vil dog muligvis kunne lade sig at gøre i visse tilfælde at argumentere for, at der ikke er tale om det samme indgreb som det, man ønsker at få foretaget i udlandet. Dette forsøgte jeg mig selv med, men valgte ikke at gå videre med sagen, fordi jeg af andre årsager besluttede ikke at få foretaget operationen.
Jeg skal ikke kunne sige, om det i andre tilfælde vil være muligt at kunne få den relevante henvisning. Men i mit tilfælde kunne det desværre som udgangspunkt ikke lade sig at gøre. Dette indebar, at jeg selv ville skulle betale for operationen i Italien.
Du kan læse mere om emnet på Sundhedsstyrelsens hjemmeside her.
My story – and why I ended up not Having surgery
When me and my boyfriend started looking into the possibility of me getting surgery to improve or even cure my lymphedema, we had not in any way expected it to evolve the way it did. And we certainly did not anticipate it becoming an emotional rollercoaster which it unfortunately did. It was a process that stretched over a period of approximately 6 months and it took hours and hours of researching, evaluating, discussing with doctors, traveling and examinations.
The whole process was much more complicated than I could ever start to explain in detail. But I am going to tell the story as an overall picture of the whole period in an attempt to give others an idea of all the considerations there can be when you first start considering surgically bettering your lymphedema. And even though my story was a troubled one, I have read of other lymphedema patients who did not have such a struggle with it and who ended out being very happy about the surgical results. Each person is different and so is each lymphedema patient and his or hers options and choices.
In the early fall of 2016 I had had the infection in my legs 22 times. Me and my boyfriend were getting desperate. The infection kept coming back and it not only damaged my lymphedema more for each time it appeared, it also resulted in a great deal of physical and mental stress. My body seemed to be falling more and more apart for each passing day. I could not do my job and had to call in sick. And if I did not call in sick but showed up for work as a result of my stubbornness, I would fall to the floor the second I got home again. This could not continue.
As mentioned before the Danish doctors were not able to help. They either told me to accept the situation and swallow the dusins and dusins of pills or they admitted not knowing one single thing about helping in a case like mine. So my boyfriend and I decided to figure something out ourselves.
My boyfriend researched for hours and hours during the weeks that followed. We ended up concluding that Professor Campisi in Italy would be the guy to visit. We had read so many amazing things about him and his surgical results on lymphedema patients. But from what we understood from the articles online, it could be difficult to get a consultation with him because he has so many patients. With that in mind I sat down and wrote him an email. An email that seemed more important than anything else in the world, because it would determine whether I would get a foot in the door at Campisi’s or not.
To Mr. Corradino Campisi
I am a 27 year-old Danish girl with a severe case of lymphedema (and “side effects” of it) and I read a scientific article online on microsurgery for lymphedema, written by you Mr. Campisi.
I really do not know if you are able to help me in my specific case, but I thought that I might as well give it a try since the consequences of me having lymphedema is so serious that I have nothing to lose by asking for your help.
I have as shortly as possible described the relevant episodes below and I hope you have got the time to read it.
In April 2011 I was diagnosed with cervix cancer. Because of unfortunate mistakes in the Danish health system the cancer was discovered a bit late, so the cancer had spread to a larger area, including the lymph vessels. The doctors therefore removed my uterus, some of the cervix area and – to be on the safe side – all of my nodes in the pelvis in May 2011.
It turned out that the cancer had not spread to the nodes. Though, I was told that because the cancer had been “out in the system” I had to go through chemotherapy and radiation for 6 weeks, which I did shortly after the operation.
In November and December 2011 I was admitted twice for an infection around the operated area. In Danish the doctors call it “Erysipelas”. I was admitted with this infection again in January and April 2012.
I was told during two of these four hospitalizations that the infection had evolved to blood poisoning.
After being hospitalized those four times I continued my law school studies. But a few months later, in June, I suddenly experienced a swelling around my right ankle. I contacted my local doctor who thought it to be a sprain and I therefore did not do anything further about it.
But the swelling got worse around the right ankle and suddenly the swelling went up through my entire right leg. The swelling then began in my left leg as well and the doctors found it to be lymphedema.
In August-November I went through several treatments with an inflatable suit at a physiotherapist. This bettered my measurements around the legs a bit.
From the fall of 2012 I have worn class 3 compressions stockings and a pair of compressions shorts every day, which most of the time is capable of keeping my legs from swelling even more.
I have accepted this condition and I have gotten to live with it, even much better that the doctors said I would be able to. Of course it results in many challenges daily, but I have found ways to manage. But the main problem for me (and my family who is very affected by it) is the continuing erysipelas infections.
In the period from October 2013 – September 2016 I have had further 18 cases of erysipelas infections, which all were in my legs. So all in all from the fall of 2011 I have had the infection 22 times.
Every time I get the infection the lymphedema is worsened and I have to work hard the following months to get the measurements around my legs a bit down again.
These infections make it very hard in daily life. When I get the infection, I get a very, very high fever and I am not capable of anything for at least a few days. In the beginning I got admitted to the hospital every time, but now I have learned to read the symptoms of the infection very early on and have learned when exactly to take medicine to keep the infection from evolving to the stage it did the first couple of times. I therefore do not go to the hospital any longer, but lie sick at home instead.
But the infections are still incredibly hard on my body for easily two-three weeks after having the infection. And they are hard on the mind as well. I really want to work and have a good life with the physical means at my disposals, but these continuing infections are making it very difficult.
The doctors in Denmark just say that I have to live with it. And they do not offer any kind of treatment or help in cases like this. I also have to take care of everything myself every time I get the infection, even making sure I can get the medicine needed for treating the infections.
I have been told by the doctors that these infections happen because of my lymphedema. I therefore try my best to take care of my body, especially my legs. I have found out that a lot of exercise makes the legs work better, especially swimming and astanga yoga seem to work well for my legs. I also eat healthy, relax when I come home from work, sleep 8 hours every night and do my best not to get stressed.
But no matter what I do it seems I cannot keep the infections away. I asked for a pressure chamber-treatment in 2015 which did not do anything either, and I have also been on preventive penicillin treatment in a year (from August 2015 to August 2016) to prevent the infections, also without results.
Having tried all I could in the Danish health system and by myself, I hereby try contacting you.
I have read that you have experienced good results operating on lymphedema patients. Of course I would be extremely happy if my lymphedema itself could be cured and I did not have to manage every day from the perspective of my legs being a problem, but my focus is actually the infections. I have only just turned 27 this month and it is very hard to imagine continuing going through the rest of my life with such a severe side effect of my cancer treatment as the infection.
I have just started working in March, but I fear that I will not be able to work in the long run if this continues.
So my question is: Do you think the microsurgery for lymphedema could help me in relation to the continuing problems with erysipelas infections? And if yes, is it in any possible to have my case further assessed by you?
Thank you for taking your time to read this.
I pressed send. There was only one thing to do now: cross my fingers – and wait.
When I checked my email the next morning, my heart almost jumped up in my throat. There was already an reply from Prof. Campisi. Back then this felt like a life changing moment; and I am to this day still increadibly grateful that the doctor responded the way he did. This is a part of the email I received:
Dear Ms.Thank you for your email. Please be reassured that I receive patients from all over the world to assess and treat for lymphatic disorders. I’m at your disposal to help you.
We are able to obtain excellent results with these microsurgical techniques that address the cause of the swelling, a blockage to lymphatic flow, instead of merely treating the symptoms. By re-routing the lymphatic flow, we reduce the amount of liquid entering the affected limb and thereby are able to reduce the swelling much more effectively. This surgery is applicable for advanced cases of lymphedema whencombined with an appropriate pre- and post-surgical treatment protocol. By re-routing the lymphatic flow, we reduce the lymph stasis, which is implicated in high risk of infection by blocking the lymphatic response in the affected limb.Please send me some photos of your legs that show the swelling and copies of any relevant medical records.
I was ecstatic.
He also wrote that I should fly down for a consultation in Genoa to have me examined as soon as possible.
But first thing first, I had to translate all the hundreds and hundreds of medical records from the past 5 years to from Danish to English. This was done within a few weeks and I sent them off to Italy.
While working on getting all my records translated, I really wanted to discuss this whole surgery thing with someone within the Danish health care system. I had only been in a foreign hospital once, in Belgium, an that was not a success in any way (I actually litterally staged an escape from the hospital as a result of them worsening my symptoms). I hoped to find someone who knew something about this subject with whom I could count on for help. Unfortunately, I did not know anyone.
My only chance of being able to discuss this with someone would be if my former physiotherapist at the hospital knew someting about lymphedema surgery. There was only a small chance of this being the case, but I gave it a try. I called her and told her about me going to Italy to be examined to find out if I was suitable for surgery.
Even though my physiotherapist had not treated me and my lymphedema for more than 4 years, she still remembered me. And even though she did not know much of the subject herself, she would do all in her power to help me. She did know one thing, though: On the hospital that treated me for cancer back in 2011, they had recently started up microsurgery on lymphedema patients. It was still on the more experimental level, but they were actually doing something similar to the Italian professor. My former physiotherapist promised to schedule me an examination at the Danish hospital so I would have a chance to discuss the matter with them. With that being said, she completely understood me wanting to go to Italy for the surgery, since the Danish doctors were not that experienced.
I was in a bit of a shock. Why had I never been told that they were actually working on something like this? It is extremely symphomatic of the Danish health care system that I had been dealing with for years: You will need to kick the door in yourself and find out what you need to help yourself. Unfortunately.
Even though I was determined not to get the surgery in Denmark, I would still like to have an examination at the Danish hospital and hear what they had to say. And I got in. I was offered a PDE-scan of my legs and an examination with the Danish surgeon. I informed Prof. Campisi about this and promised to send him the results of the scans so he would be able to use it for my potential surgery in italy. I would then fly to Italy after having been through the Danish examination.
The weeks went by and it was time for my consultation at the Danish hospital. To say the least, it turned out to be a heartbreaking experience.
In short terms the Danish surgeon did a PDE-scan of my legs and quickly concluded that there were no lymph vessels left. It was pure “snowstorm” in my legs, as she said. Snowstorm means that the lymph vessels are all leaking, like a si; the lymph fluids were syringing out of my lymph vessels that practically weren’t vessels any longer because of all the holes in them. Normally this scan will show a lot of “spaghettis” in your legs; the lymph vessels, running from your toes and all the way up your body. But in my case there where not one single spaghetti in sight, besides from in my feet. The theory was that the many infections had ruined my lymph vessels.
I was looking at the picture on the screen while the surgeon did the scan. It was so heartbreaking to watch. My legs were… Broken. Tears were running down my cheeks and I could not stop. The tears just kept on coming. Everything suddenly seemed so hopeless. This was made even worse by the not very nice surgeon who made it clear to me in a rude manner that there was nothing to do in my case; I was doomed, so to speak.
I left the hospital that day feeling lost.
My boyfriend encouraged me not to give up, though. The Danish doctors are very unexperienced within this field and we decided to write to Prof. Campisi to get his opinion on the results from the scan.
To Prof. Campisi
As earlier mentioned my consultation at the Danish hospital was pushed forward to the 3rd November.
The Danish surgeon did a (very quick) scan of my legs and the conclusion was clear to her. I have translated the medical record from that consultation and put the text in below.
Even though I had an appointment at the Danish hospital, I did expect to go to Italy either way and have you do an examination and scan of my legs (and eventually the surgery), because the Danish doctors are no way near having the experience and knowledge that you do at this point. But after the clear conclusions on the examination at the Danish hospital I would like to have your opinion on whether it still makes sense to come to Genoa for a consultation. (Which I of course hope it does)
Main conclusion of the Danish examination: They only found lymph vessels in my feet. Above the feet area they said that it was only “snow storms”, as in leakage everywhere and no vessels.
I must admit I got very, very sad at the consultation because they made it sound like my legs are completely “broken”. But I the same time I felt that they did not quite know how to use the new scanner, that they had borrowed for a couple of days – and they also admitted to only being on a experimental level in Denmark in relation to treatment and surgery for lymphedema. I would therefore still like to come to Genoa to have you look at my legs to figure out if you think anything could be done. Especially because their conclusion leaves me with no bettering in sight in relation to the recurrent infections, which is very frustrating. But after the conclusions of the Danish surgeon I of course am aware that the chances of you being able to do anything are small.
You will find the medical record from this consulation just below. I look forward to hearing from you. And thank you.
”Has had a lot of infections – 23 in total – which started in 2011. When infection starts she quickly gets treated with both pancillin 2 mill IE * 4 and flucloxacillin 1 g * 4, for 3 weeks.
Still recurrent episodes of infections. Could she have become resistent?
Which parts of the body are involved: Both legs.
Has there been done [exairese/SN]: Yes, okabayashi
Number of nodes removed: Around 20
Pain: No, both is bothered by being weighed down.
Functioning limits: Example; can not bend fully in knees.
Was any treatment performed: Lymfotherapy the first year after surgery. Massage, drainage, pump treatment, compression stocking.
Is there or has there been any infections: At least 23 times.
Is the lymphedema bettered in the morning: Yes.
Is the lymphedema worsened at night: Yes
Does the patient exercise regularly: Yes, with good effect.
Is the patient unablable to work: Is working full-time as a lawyer.
What is the patient’s must severe complaint about the lymphedema: Probably the recurrent infections (and that the legs have gotten thicker and heavier and that the stockings can annoy)
Is the patient physically hindered because of the lymphedema: No, but she has to rest her legs several times a day.
Localisation of swelling: Both [femora and crura] in moderate degree. Feet are nice, no signs of [Stemmers]. Skin looks good everywhere. There is some water, but also some fat.
How does the [subcutane] tissue feel: Fat with [pitting].
Lymphedema stage: Is found to be an early stage 2.
A [UXUD88H PDE] scan with flow measurement af lymph vessel in both legs is performed.
[Interstitserne] injected with ]indocyanin]green, in all 0,8 ml.
Scanning shows: Normal lymph vessel on instep and ancle area [bilat.]. But after this no lymph vessel to see, only splash and lekage of contrast diffuse in tissue, both on [crura and femora].
Patient does not have suitable lymph vessel for [LVA] surgery and the process here is finished.”
After having been examined at the Danish hospital I wasn’t optimistic. But I hoped like crazy that Campisi would be able to find some kind of flaw in the Danish results or that he had another approach to the surgery which made the Danish scan result irrelevant.
Fortunately he did.
He replied that he suspected the Danish surgeons to do another kind of surgery; a supermicrosurgery that was more superficial and did not have the same successful long-term results in relation to volume reduction of lymphedema limbs.
I was not willing to give up on this project yet – no matter the opinion of the Danish surgeon (who seemed rather conservative). I was thrilled about Campisi’s response. It gave me an unbelievable amount of hope. Hope for getting better and being able to move forward with my life.
So I made an appointment at Prof. Campisi’s. I was going to see him in Genoa, Italy, on the 21st of December.
I had to wait almost 2 months from I made the consultation. I cannot begin to explain how excited I was. How much I truly believed in this being the way to go for me.
The 2 months went by slowly but suddenly it was time. My boyfriend and I was going to Genoa.
There was a bunch of drama on the way down; problems with the transfer flight from Paris, no other possible transportation that could get us there in time for the consultation and in general just a bit too many challenges. So we desperately contacted Campisi’s clinique to beg for having the consultation re-scheduled because we could not get there in time. Luckily, Campisi’s staff was extremely helpful and understanding which calmed me down after all the unforeseen events in the airport. Everything was re-scheduled and no harm done; I would only have to miss the introductory consultation with Campisi but that was not problematic.
Genoa is one of the most beautiful and romantic cities I have ever been to. After having arrived in the city and having to wait for the examinations that had been scheduled later that day, we went for a walk around the town. I cannot say if my impression of the city was somehow influenced by all the hope and dreams I had for me possibly being offered a life-changing surgery there. Either way, it was a wonderful time spent.
The first thing I was supposed to do in Genoa was to see Prof. Campisi, but since we did not get there in time we agreed with his clinique to skip this introductory appointment. I was instead instructed to go to a hospital in Genoa where they would do some test of my legs to see how my lymphatic system worked.
I was going to get a Lymphoscintigraphy. That meant having a small amount of radioactive material injected between my toes and then afterwards being scanned. The scanning pictures would should if the radioactive material was being transported up through my body or if it ended up in my legs, not going anywhere (the so-called “backflow of fluids”). I would have to pay 650 € for this scan and the doctor at the hospital did not discuss much of the test results with me but referred me to Prof. Campisi.
The following day I had my – long awaited – appointment with Prof. Campis. I had to pay a fee of 450 € for the consultation.
Prof. Campisi looked through my medical records while my boyfriend and I sat on the other side of his desk. Nervously awating his judgement.
Afterwards Prof. Campisi did an examination of me, ultrasound among other things, and took a general look at my legs.
His conclusion was clear: The test result for the foregoing day showed backflow of fluids, but it also showed that some of the radioactive fluid had been transported to my kidneys. And when doing the ultrasound on me he could hear/see/feel that there was some passage of fluids. This all meant that it would be possible to do an operation (lymphatic-venous microsurgery – multiple lymphatic-venous anastomoses in my inguinal-crural site) on me that would be able to possibly cure me from my lymphedema. Either way it would minimize the amount of infections I have in my legs. I was informed that if I did not do anything to fix my medical situation, it could turn into a life-threatening situation.
When I left the clinique that day, I was determined that I was going to go through with this. I considered it my only hope and I would simply have to loan the money for it.
As written above, I was told that the whole period at Prof. Campisi’ would take approximately 4 weeks; I would undergo 1-2 weeks of pre-operative procedures, have microsurgical operation with 5-7 admission and then 1-2 weeks of post-operative procedures before returning home. In relation to price, I was given a price of 40-45.000 € for the pre-operative intensive treatment, the surgery and the post-operative treatment plus 18-24.000 € for pre-operative exams, hospital stay, operation room, drug therapy etc. This price was for one leg only.
When I got back to Denmark a lot of challenges followed. I would have trouble raising that great amount of money. And a public payment of the costs of the surgery required me being officially referred to Prof. Campisi from the surgeon who had earlier examined me in Denmark.
A long struggle followed with the Danish health care system. Both in relation to getting in contact with someone who could/would help me, discussing the necessity of the surgery with tons of doctors, figurring out the payment aspect of it etc. etc. I also tried to contacting the Danish Lymphedema Association who unfortunately did not have any experience in relation to this kind of treatment.
I crawled my way in to the lymphedema specialist clinique in Denmark and finally got an appointment with a doctor who would help me. And he turned out to be absolutely amazing. He is without doubt the only doctor I have met who has actually truly engaged himself in helping me getting better and I have the uttermost trust in his expertise.
Several months went by looking into the test results for Italy, the specialist discussing my case with the surgeon who would have to officially refer me to Prof. Campisi and the specialist contacting trusted colleges in other countries. Meanwhile the infections kept coming back and I desperately hoped for finding a solution with the Danish doctors so I could have the surgery in Italy.
At some point the Danish specialist forwarded me a mail from a colleague in England. He had been in contact with them several times discussing my case. This is what the English doctor commented on my test results from Italy (note: She got the date of my cancer diagnosis wrong – 1989 is my birthyear and I was diagnosed with cancer in 2011):
I agree that there seems to be extensive bilateral re-routing on the lymph scan, together with significantly impaired drainage of dye to the inguinal lymph nodes .
Her lymphoedema is presumably longstanding, as her cancer diagnosis was in 1989. I suppose there is a small chance that LVA anastomosis surgery may help, but she would need to be investigated with indocyanine green (ICG) lymphography to assess whether she is suitable for the surgery. It is standard practice for surgeons to investigate their patients with the ICG test before suggesting the LVA surgery. I am confused that this report was not included in the patient’s letter from Italy; perhaps they have not done it? The ICG test would be able to detect whether she has any viable functioning lymphatic vessels that could be surgically attached to nearby veins to bypass obstruction to lymph flow.
In terms of the advice that you might wish to offer your patient: you may wish to suggest that the chances of LVA surgery being effective are low because of the duration of her lymphoedema (best results are obtained within 1-2 years of onset of swelling), and that the ICG test would be a way of deciding if she is a candidate (I would expect any surgeon offering the LVA surgery to be performing this test).
The ICG-test that the English specialist is referring to is the same test as the PDE-test (which I have described in the top of this article). The PDE-test that I had done in a Danish hospital showing that I had absolutely no lymph vessels left.
Despite the comments from the English colleges, the Danish specialist had no trouble continuing spending time with me discussing my options.
And this is actually where my story in relation to surgery is about to end. Cause after months and months of discussing, researching and fighting this battle I made a decision. I was not going to go any further in relation to the surgery in Italy.
It all comes down to trust. After all these months of discussing my medical situation, tests results etc. I chose to trust in the Danish specialist. Apart from other surgeons all over the world he has no financial interest in my case; he is part of a publicly paid health system. He only has a interest in helping me as a result of his doctor’s oath – and he took me in and helped me when nobody else wanted to. I chose to give up on the idea of surgery after having been through the different test results with him a million times. I agree with him – and his English colleges – that it seems illogical that this surgery would have good results since the PDE-test was clear; I have no lymph vessels that could be used to connect to my veins. At the same time, I felt that going through surgery would bear a risk of worsening my lymphedema in case it turned out that there were not the needed vessels/veins in my legs/groin.
I would now have to prove the doctors wrong. I would have to find my own way to get a strong, healthy body – and my own way to not constantly getting sick.
And I actually managed to do that. So it turns out, surgery might not be the best solution for everyone. Or it might. I will properly never know since I do not have any plans getting surgery. I will try doing this my own way. Hopefully that will work.
(NB: I have read so many articles about Prof. Campisi online and also about many patients who has experienced amazing results after going through his kind of surgery. I truly believe that he is one of the top specialists within this field. I just personally chose to go another way. But if I were to get surgery, he would undoubtely be the one I would turn to.)