Nearly Five Years Post Surgery

Hi there,

I'm sure most of you want to know what has happened since my LVA surgery. I had surgery in November of 2010. My lymphedema was in my left leg and I was pretty hampered by the largeness of my leg. Prof Campisi told me I had secondary lymphedema which was most likely brought on my multiple abdominal surgeries and the removal of one lymph node.

I had the surgery and followed prof's directions to the tee. Early morning pumping and evening pumping, up to three hours and day of pumping and swimming every day for the first 6 months and I wore two compression stockings for the first six months. The latter part being a major pain in the ass!

I would say that I was a very compliant patient though prof would tell you differently. That is a whole other can of worms that I don't need to open up!

Today my leg is 100 % better as far as mobility is concerned. I do everything I want to do (I'm very active) although I don't take unnecessary risks. Not long ago I wanted to do some paragliding but though better of it because I didn't want to land weird on my leg and maybe break it!

My leg is not 100% with regards to size. For me the size difference is very noticeable though most people say it is not.  I still wear stockings (though only one and not two) on my one leg. I still use a flexitouch pump though I can certainly go without using it. I get a regular lymphatic massage. I don't eat, wheat, salt or dairy and definitely don't eat foods with additives. All of these things combined make a difference in the size of my leg.

I find that the biggest help with lymphedema is finding a brand of stocking that fits me the best. I'm a small boned person of average height. The flat knit stocking works the best with regards to longevity but I have not found a company that makes 'off the rack' flat knit stockings. Well I found one but their smallest size is still too big for me. This means that I either go custom (yikes so expensive) or Sigvarus, which wear out pretty fast.

I had a second surgery in 2013. It was a liposuction surgery. My leg at first improved with the liposuction surgery but then it went back to the way it was before. I think this particular surgery has different results for different people. I do have to say that my leg does have shape now where as before it looked like a fire log. :) I believe it now a surgery that can be combined with the first LVA surgery. I think this is up to prof and his son, Dr. Corrado Campisi and it depends on where you are traveling from.

In the USA we do have LVA but it is a different kind of surgery and one that is less invasive. I do not know if it is better or the same results, however at least there is an option for people who can't travel to Genoa, Italy.

I hope this answers questions. Feel free to email me for further questions. I'm happy to do what I can for people suffering from this disease.

shawnunderwood@hotmail.com

Update

Dear All,

We hope that this blog is still being used and read as intended: to help patients with lymphedema worldwide to get the best treatment for their condition.

Please note that further information can be found at Professor Corradino Campisi's website: www.lymphaticsurgery.org (in English by clicking the british flag at the top right)

Maybe we'll see you in Italy some time!

M & S

Lymphedema Post-Op Instructions—Compression—Swimming—Compression

Professor Campisi is very explicit about his post-op instructions.

"You must swim everyday. You must use the pump twice a day and more if possible. One hour in the morning and two hours in the evening. Try to use the pump at the lunch also. Do this for six months."

Surgery for lymphedema is a very precise and delicate surgery. Professor makes it very clear in broken English that surgery can be done only once.

"What if there are complications?" I ask.

"There will be no complications if you follow my directions." He says in an insistent and forceful voice. I've noticed Italians get excited about a lot of things but even I admit that not following his rules would be disastrous. After-all, I live in the United States and he's — well, he's in Genoa, Italy. Somehow I don't think Skype would be effective for an office visit. So, I'm following his rules.

I wake up early (for me) and pump for an hour while checking my email. I'm then off to swim for an hour at the local athletic club but not before I visit the nearby Starbucks for a cuppa. Coffee does wonders for my swim stroke, although I must admit the coffee doesn't hold a candle to Italian coffee. I don't care if I don't get to sit down in the coffee shops in Italy, it's worth standing up with the locals for a good cup of coffee.

At the athletic club, I swim back and forth and use the kick board and my hand paddlers. I'm only missing a floaty toy. And for God's sake I have to remember to step in the shower before jumping in the pool or one of the 'sitters' will get after me. It's been know to happen. Apparently the people who sit in the chairs watching the swimmers have nothing better to do than make sure the swimmers follow the rules. Sheesh.

"Did you take a shower? You just got out of the steamer. You sweat don't you?" Said a very cantankerous sitter.

"I'm on my way old dude, I'm a rule follower you know." My sarcastic voice totally goes right past him.

"Thank you." He says.

Shit, now I feel bad. Why can't I follow the rules like everyone else? Well, at least I'm following Professor Campisi's rules.  Only two more hours of compression pump for today and six thousand hours for the next six months, however in this case, following the doctors orders is paying off. My leg is slowly shrinking day by day.

At Least the Nurses Were Nice

Shawn
Here's the thing about surgery and being a patient or paying guest in Villa Montellegro. And I do mean 'guest' because the staff treat you as if you were staying in a 5 star hotel. After your procedure is finished, you say to yourself, well that wasn't so bad but of course you are on drugs at the time and they haven't worn off so really you don't remember the stay in the hospital or the surgery or anything. And if you do remember, well then I'm sorry.

But before I get into the whole hospital stay, I want to express my appreciation to Professor Campisi and Doctor's Campisi and Boccardo who are the finest surgeons I've ever met and their care is beyond reproach. They care about the 'whole person' not just the precise beauty of a stitch. 


After surgery I experienced some pain as I was waking up. (This in itself was a bit unusual for me because I've only had surgery in the United States and both times was completely numb when I woke up.)  But then the drugs kicked in and it was all good. In fact I only had pain killers for the reminder of the day of the surgery and then not again. I just wish there was some sort of quick fix for staying in bed for four days. But there isn't. Melissa seems to remember three days in bed. For me, it was four days because I had surgery early in the morning so I count that as day one.

So you are confined to your bed for four days and able to eat a full meal on the second day. Of course once you eat said meal, you will have to relieve yourself. A catheter works well for number one and the dreaded bed pan for the rest. It's not good but it has to be done, especially if you want to eat some more of the tasty hospital food. Not kidding. The hospital food was very good—if you didn't order all white food or two entrees like I did. Not that a giant ball of fresh mozzarella, mashed potatoes and cauliflower are a bad combination . . . 


Day four brings release from catheter, drain (not as dreadful as it sounds) and standing on your own two feet—unless you keel over as I did. Don't get up in the middle of the night without assistance! This will bring extra nurses, blood pressure cuff, and lots of monitoring all because you wanted to walk to the bathroom which at one time was doable. Have no fear, you only have one day to go and it's not like you are in a torture chamber for goodness sake! Except I felt like I was in solitary confinement. Luckily my husband stayed with me the entire time. He went well beyond the call of duty when he scoured the city for English magazines and newspapers because unlike Melissa, I had no Internet. 


You are free after breakfast on day five. No one has to check you out! Just stop by the reception desk and check out. Take a cab back to your hotel or the B&B above Professor Campisi's clinic and take a rest for the rest of the day. Doctor's orders.

The Hospital Stay: the uncut version.

Melissa.

I’m not sure how to describe the whole hospital stay. Thanks to the miracle of retrograde amnesia and a generally optimistic personality, I’m already over-writing the unpleasantness with “it wasn’t too bad.” At the time, it was probably everything you would expect for a hospital stay. Except, remember that this was my first surgery and I had no idea what to expect.

If I was reading this and intending to have this surgery soon, I would want know the details. I like to be prepared. I’m a born girl scout. I’m going to assume you are all the same. Before I get into details I just want to extend my thanks again to Professor Campisi and Drs. Boccardo and Corrado Campisi. I know I don’t have any experience with other surgeries but they seemed to go above and beyond the call of duty. They were always making enquiries about how I was doing and visiting. The nurses also were very kind and always a bell call away. In fact sometimes they came so quickly it seemed like they must have been hovering outside. Or they had roller-skates on. I forgot to look.

So, details… after the surgery, you are on bed-rest for three days. I mean complete bed-rest. You have an IV initially and a catheter and I had two drains coming from the incision. So, no fantasies of sneaking up and using that ensuite. It was my first experience in adulthood of being completely incapacitated. I had to say I did not like it but then again I have been independent (My family call it stubborn or pig-headed. Whatever) since I was a pre-schooler. It was not the being washed or changed by nurses or being poked and prodded in places few people see. I expected that bit. It was the other little things, like the time I had to call a nurse just to turn off a light. Or ask my Dad to fetch me everything I might possibly need before he left for the night, so I could arrange them in arm’s reach, just in case.

All of that would have been just as difficult and uncomfortable at home but not speaking Italian did add yet another layer of difficulty. I learnt the words for sick, pain, help, thirsty, etc. But I could not communicate the level, location, or type of pain without hand gestures and facial grimaces and the nurses eventually sending for someone who spoke English. You can communicate a lot non-verbally but I was unable to say, “Yes, I have some pain but no, I don’t want painkillers. It’s bearable and this way I can tell when I’ve moved too far. Then I won’t make that movement again”. I’m just not that talented at charades. It was also a bit lonely not being able to chat away to people. Once we had said hi and talked about New Zealand (rugby seemed to come up a lot) and the weather, I ran out of Italian. I would have liked to have properly thanked the girl who cleaned my room each day and talked to her; she seemed nice. Again, we were limited to smiles. Thankfully they are universal.

But I have to say, the language difficulties did create some funny moments. The nurses and catering staff went out of their way to make me feel at home. Maybe it was just part of their jobs but they genuinely seemed to care whether I was feeling good or not and that I had everything that I wanted. Twice two male nurses sat down and translated the menus for me. This was hilariously entertaining, especially when we got to rabbit. Seeing a grown man act out a rabbit twitching its nose complete with rabbit ear-fingers was very funny. I did not have the heart to tell him I was a vegetarian. I also made numerous mistakes with food all by myself. Often I selected some very funny combinations of food for meals based on wild guesses about the menu or assumptions that the food would be the same as at home. For example, I imagined that the mozzarella would be baked or in a sauce or something. Not just a ball of fresh mozzarella. Oops. Still, it was nice added to the tossed salad.

What else to say? The five-day stay in the hospital was uncomfortable, undignified, and awfully boring at times. It tested my patience and having the internet connected on the second day seemed like the world had opened up again and made me realise how privileged and probably spoiled, if I’m honest, my life usually is. It was elective surgery after all and I’d been able to make that choice. I was being given the opportunity to get full function in my leg again, if everything went to plan, not something that is offered to every person with lymphedema. Probably less than five percent of people with lymphedema can elect to have the surgery, due to the cost, despite the fact that I think most could benefit from it. I’m not meaning to navel gaze, just comment on the fact that I am aware of how lucky I am. Something I used to give myself a stern talking to in the middle of the night. You know that time when you’re lonely, sore, and, if you weren’t too grown up to admit it, you just want your mummy? Hmm... I hope that’s not just me.

And then, suddenly, we reached Day 5. Drains and tubing were removed. I gained a new appreciation for that ensuite and the energy required to reach it. Even if I did require the assistance of two nurses at first. I was upright! I was walking! I was able to look out the window and see the parking lot! This was excitement; clearly my world had shrunk more than a little. We were discharged on the morning of Day 6 and headed back to the B&B to recuperate. Phase two of the treatment programme was over. 

Phase three was about to begin. This, actually, was where things got a little hard for me. I'll write about them briefly, in case it happens to you too. If you're delicate little flowers with stupidly fragile skin like myself, that is!

Surgery Saturday

Melissa.

Well, the big day had finally arrived. Unfortunately, as is my usual habit, I was up with the birds. Fortunately, Italian surgeons appear to also keep these hours, as Professor Campisi and the team made a brief visit to my room before 7.30am. I can’t remember what we talked about; I guess there isn’t much to say. ‘Good weather for surgery’ hardly seems appropriate. Anyway, it was a brief visit and then I was left with my thoughts. Then, it sunk in that being the second surgery of the day is not a good thing. I was ready to go now! I’m not very good with waiting. Patience is not on my list of virtues.

Thankfully Shannon, Shawn’s sister, came to keep me company. I’m not sure she realises exactly how grateful I was to her for keeping me amused with funny stories and book discussions. I’d like to think that I helped to keep her mind off Shawn’s surgery but I think I’d be stretching the truth a little there. Eleven am slid by. Eleven thirty. Uh-oh. What happened to the schedule? Just as I was about to panic; some for myself and some for Shawn, the smiling nurses came in with the pre-meds. Now, you all know that I’ve seen ER, so, of course, I was waiting for the meds to kick in and for me to suddenly become drunkenly funny. There’d be some witty one-liners exchanged and I’d leave the impression that New Zealanders were masters of comedy. This did not happen. Maybe there wasn’t enough time for the comedy side-effects to kick in? I entered the operating theatre about 25 minutes later. That was it, right? I’m actually really funny, there just wasn’t enough time.

I thought the operating theatre would be bigger. There would be lights everywhere and a viewing platform for spectators. But, like many things in Italy, it was compact and efficient. One of the scrub nurses was an hilariously funny man. He appeared to be in his sixties and spoke remarkably good English but in a thick accent. He was fascinated with my eyes; I guess blue/green eyes with gold flecks are unusual in Italy. Good thing he couldn’t see my hair. He spent about two minutes just staring intently into my eyes. We could have been half an hour with the hair. He asked what I did for a job. I told him Psychologist. Ah! He said “perhaps I could therapise him?” I said I didn’t have enough time. We laughed. See? I am funny. The lovely anaesthetist turned up at this stage and administered the anaesthetic. No mask, no demonstrating my prowess at counting backwards, just my eyes closing.

I wake up in my bed. A little shaking, a little nausea, a little pain. All managed wonderfully well by the nurses. Professor Campisi and the other surgeons are there at some point; the surgery went well but took longer than expected due to the large amount of inflammatory tissue in the thigh that the body had produced as a reaction to the sea urchin toxin. He removed all this before joining the lymph system to the veins. Not that I took all this information in after the surgery…I have a good memory but not that good! I remember the visit, I remember Dad being there and some beautiful roses, and then I slept and remember little apart from nurses changing the IV in the night. A lazy Saturday really, with all the sleeping I did!

Real hospitals are nothing like ER

Melissa.

We entered the Casa di Cura Villa Montallegro with some trepidation. Or at least I did. It transpired that I needed to have a chest x-ray first up. I missed out the previous trip for some reason. For a while it looked as if they were going to make Shawn have two but my guilty conscience got to me and I confessed. Sigh. Nice people really do get nowhere.

Anyway, after that we were taken upstairs to the third floor (surgical ward) and shown to our private rooms. I liked mine; the bed was the main focus (clearly that was where the most important person was going; so that made sense) and the room also contained pleasant blue furniture, an LCD tv, a view of the parking lot, and a private ensuite. I would hardly use the ensuite but it’s the thought that counts-right?

We then tried to venture downstairs to get some dinner. The nurses gave us a funny look as we passed but we took no notice. Everyone gives us funny looks here; there’s no point in trying to decipher them all. Turns out we should have paid attention. FYI the restaurant does not open till 7:30pm no matter how longingly you stare at the menu at 6.15pm. The nurses at Villa Montallegro are very polite and agreed that it was sensible of us to have visited the restaurant in advance. It wouldn’t do to get lost, you know.

After dinner, we met the anaesthetist and the third Italian surgeon, Dr Francesco Boccardo. Both of them were very welcoming and took the time to answer my questions. Dr Boccardo speaks very good English and is very handsome. I’m getting the feeling that this may be a pre-requisite for becoming a surgeon in Italy.

I’d like to block the next bit out. Unfortunately I have a good memory. Prior to this, I was mostly treating the event like staying in a hotel. I’ve never had surgery before so I’ve nothing to compare it to but ER and, sadly, real hospitals are nothing like ER. Let’s just say that the subsequent enema and shaving completely punctured that fantasy. I took to my bed not long after that and was pleased to find it comfortable and that I slept.

Next up… Surgery Saturday