Friday, 25 October 2013

The Surgeon's Appointment - part 2

Hello, and here's the rest of the appointment... After the Professor said he felt I only had lipo-lymphedema in the bottom part of my legs he went on to explain why. He said that as I had lost alot of weight, which some was off my legs, that I shouldn't of been able to do that. He also said that because I didn't feel in agony during having MLD then I was less likely to have lipo-lymphedema. He said most people who have it are in agony most of the day.

At this point I was very upset. My weight has always been an issue and being able to label myself with lipo-lymphedema was some sort of comfort; that it wasn't my fault. In my mind at that time it was as if he was saying that having all this fat on my legs was my own fault, the one thing I felt had been lifted when I was given the lipo-lymphedema diagnosis by Professor Mortimer.

He went on to say that he did believe that I had lipo-lymphedema on my calves, but just a minor case. He said that on a scale I was almost off the chart at the 'good' end (if that makes sense) and most ladies he sees are much worse.

He then went on to say that he would operate on my calves and above the knees but he was concerned about the skin quality. He explained that he can take away all the fat, but the skin may not retract back. He said I had to be prepared for that and suggested that I find a good surgeon who could remove any excess skin prior to having any surgery with him. He also said a thigh lift would be what I needed to make my thighs look better.

The Professor then showed me a book of his work. Hundreds & hundreds of pictures of before and after shots. All with amazing results. I asked him where all his 'failure' photos were, but he winked and said he 'didn't keep those ones'. And there was me thinking he had no sense of humour!

He then went on to explain that the surgery was done under local anesthetic. A small hollow needle would pump fluid into my legs, and then another needle would gently vibrate and suck out the fat. The operation would take a number of hours (depending on how it goes) and I may be asked to stand up at some point so he can see that the legs are in proportion. He then went on to say after the operation I would stay over night in the clinic, then leave the next day. He said I would feel no pain in the operation but I would afterwards. This is the most painful operation he performs.

He went on to cover the costs of the operation E4550, E295 for compression garments, E170 over night in the hospital or E250 for two people. When returning home I would need to have 4 weeks of MLD, twice a week.

I agreed to the operation even though he hadn't agreed to do it all. We booked a date there and then and paid E75 for the consultation.

After the appointment we went back to our hotel. I had such mixed emotions. I was happy that he'd agreed to do the operation, but I never envisioned that he wouldn't! I imagined it to be an 'in & out' situation, more or less just to confirm things. I cried and cried. My poor husband having to listen to me rant and rave, and me feeling a complete failure because I believed he was saying that I was fat and it was my fault.

It took several days for me to be calm again and really think it all through. My husband is a Chemist and he explained that experts have 'opinions' and not all experts agree on things. The fact that Prof Schmeller didn't agree with Prof Mortimer doesn't mean he is right or wrong. I had to chew over that for a while for it to sink in.

So when we returned home, having to wait another 10 months for the operation.....

Friday, 18 October 2013

Sorry....had to put this in!!

What to expect at the Surgeon's Appointment

Hello everyone! Well the surgery is fast approaching & I'm trying to get everything at work all in order before I fly off to Germany.

I thought this post should be about the actual surgeon's appointment as it was one of the most stressful parts so far & I didn't know what to expect.

Firstly I had to wait over 16 months to see the Surgeon. Professor Schmeller at The Hanse Klinik was recommended to me by Professor Mortimer at my diagnosis appointment at Parkside Hospital in Wimbledon.

Once I'd been given that referral I had 99% made up my mind that I was going to have the surgery. I've been suffering with this horrible, ugly disorder for nearly all my life and I was determined that nothing was going to stop me from having better legs. If you are a fellow sufferer you will understand that the physical pain is much less than the mental torture I have every day. It was also at this point I decided that given I had been diagnosed with an actual medical problem, then my legs were nothing to be ashamed of and if anyone else had a problem with the way they look, then they really need to get over it or deal with it themselves! These are brave words, but I started to wear knee length skirts & dresses, something I hadn't done in perhaps 30 years! The first day wearing such a short dress really caused me some anxiety, but I held my head high and fronted it out. I'm so glad I did that now; it has freed me not only from wearing maxi length dress & skirts but also mentally. Sure I still get looks from young kids and old ladies (why are they so rude!?)but I feel more confident in myself. For the most part, anyone who looks at me can see I have a problem, I'm a size 14 at the top, size 16/18 at the bottom & no-one normal has legs like these!

Anyway, I digress...When I first rang for the appointment it was Sept 2011. I was told that the clinic was so busy that they weren't even taking appointments until Mar 2012. Talk about a let down! I then rang in March 2012 and was given an appointment for January 2013. I couldn't believe I had to wait so long! Fortunately my boyfriend had proposed so I had something to occupy my time.

I was very nervous at the appointment. I'd waited such a long time. We flew into Hamburg and then got the train to Lubeck where the clinic is. When we arrived for the appointment I was told that the Professor was in surgery and that he was running late. Well, I had waited all this time, so hanging around wasn't really a problem. The clinic was modern and spotlessly clean! The receptionist was very friendly and gave us tea & coffees.

The Professor came in from his surgery in scrubs & took both of us to his room. It is large & modern with a massive library books about liposuction.

He asked me lots of questions including what did I think lipedema was & why did I think I had it?. When I didn't give him technically the right answer he was quite challenging. He asked what type of massage I was having, what did it feel like, where had I heard about lipedema, how did I manage to find him? Perhaps if I had been less anxious & nervous about the appointment I wouldn't have felt like some of the questions were some sort of trap (I will come back to this). I then had to have a physical examination which I fully expected. I was asked to undress to my underwear. I was weighed and measured. He squeezed my arms and legs quite hard in various places, which obviously hurt. I don't like to make a fuss so didn't say 'owww!' immediately but maybe I should have.

I was then told to stand in front of a wall which had black paper on and I was photographed front and back, with close ups. This was the bit I hadn't been expecting and to be honest if my husband hadn't been there I would have found that a bit weird, suspicious even. I understand why now he does that. He needs to have a clinical photographic record.

After getting dressed and expecting him to say 'yes, no problem' he went on to say how he dis-agreed with some of the diagnosis by Professor Mortimer and that he didn't believe I had lipedema in the tops of my legs but another condition called lipohyperdystrophy, which is where the fat un-naturally masses to one area but he did agree that I had lipo-lymphedema on the bottom parts of legs. At this point I burst into tears because I felt like he was saying the fat on the tops of my legs were my fault (which he wasn't). With that in mind he said that he would remove the fat from my calves and above my knees, but not from my thighs or bottom.

Professor Schmeller is a very direct clinical surgeon & scientist. He calls it as he sees it. That's not to say that he's not a nice or kind man, just brutally honest & direct. He said he gets women crying in his office all the time and had tissues to hand.

And this is where I will finish for now....lots more to add but this is becoming a very long post!

Monday, 14 October 2013

Alert! Scary Leg Photos!

Well the time I guess has come to show you the first pics of my's as scary for me as it may be for you to see them.

You see, I have a 'love/hate' relationship with them. They take me where I want to go, then get me moving, running, jumping, swimming etc but they are butt ugly!

I've lost quite alot of weight so the skin has stretch now has less to fill it. That's the up and downs of weight loss. I'll come back to that at a later time. But be prepared to see my pins

So, the surgeon is going to remove all that nasty evil fat from above my knees, and all the way down to my ankles (yes, I do actually have ankles under all that fat). He tells me he can take IT ALL away! I may have some loose skin on my calves, and this may have to be addressed later but as you can see from above the knee, I'm going to have to have the top skin tightened anyway. But the new and improved legs will be able to fit into boots, for the first time in my life!

I've kept this post fairly light. It's hard to put a pic of your ugly legs on the net and not feel anxious about it. But all in the name of progress......

Have a great day

Friday, 11 October 2013

Hello, my name is Lara and I have lipo-lymphedema. I'm 45, married with no children.

I've obviously had this all my life as anyone with lipoedema will know that it's a genetic condition. I come from a family of pear shaped women and we all thought this was just our family shape but it wasn't until I put on alot of weight very quickly and fat accumilated on my calves, shins & ankles that I really started to worry about what was wrong with my legs.

I'll make no bones about it, I was always a big child and I turned into a big adult. It never seemed fair that I didn't seem to eat anymore than anyone else but I got bigger & bigger. Exercise at that time wasn't my friend so I just guessed I put on weight because I was lazy.

One day it all got too much and I plucked up the courage to go to the Doctors and I said 'why are my legs like this? I know I'm fat but other fat people don't have legs like this'. Various Doctors were called in and prodded my legs but no-one knew. I was sent to the lymphedema clinic at Guys & St Thomas's Hospital in London, where the Consultant said he didn't think I had lymphedema but there was some research being done at St George's Hospital in Tooting on a condition called Lipoedema, a genetic fat disorder. He then went on to say he didn't believe in it and that I should lose some weight. As he must've been about 25+ stone I did think 'pot', 'kettle' & 'black'.

So nothing more happened until I seriously (again) started to lose weight with the help of a hypno-therapist. She thought if I could get some help with my funny legs then I would be happier in myself and perhaps not revert to poor eating habits. Years had passed since my joke appointment at Guys & St Thomas and with the help of the internet I found a brilliant man called Professor Peter Mortimer.

In a couple of quick emails to his secretary I had managed to secure an appointment. At that appointment he quickly diagnosed lipo-lymphedema. He was absolutely lovely. He also told me about the Hanse Klinik in Germany where I am getting my surgery done. If Professor Mortimer recommends it, it's got to be good!

Ok, so that's where I'll leave it today. I just wanted to give some background. I'm happy to answer any questions on my medical background, weight etc.