Week 17: Review with Professor

I caught up with Professor Schmeller during the Lipoedema UK conference and he had a good look over my thighs and the flat flanks I've been obsessing about!

I was very happy that he came to me to invite me to have a review and I felt he was very kind in making time for me.  

Professor Schmeller spent ages turning me round and round to have a good look at my legs and he advised me that he felt I was still healing and should see/feel further changes by around six months and so he suggested we have another photo session and review then.  He stressed that he would make time for me if I wanted to come to Lübeck, but otherwise he recommended photos and phone calls/emails at the six month point.  

Professor Schmeller advised that I should use some lotion to massage my legs twice a day, massaging  in the lotion with a flat hand in a circular motion around on the top of my thighs.  He used his hands to show me what he meant and it felt a firmer pressure than MLD.  It did feel a little intimate having him massaging my leg!  He recommended I did this twice a day on my thighs and knees.  He felt that I still had healing taking place down around my knees too, which surprised me but I do feel some sensations there when I do vigorous exercise so I guess it makes sense.

I asked if I should increase my MLD and he said as the MLD is quite pricey, he thought twice daily self massage would be as good as having more frequent MLD as I would not be having it anywhere near as often!

He was very happy with how I looked and how I am healing.  I was very happy that around weeks 14-15 I felt I had stopped experiencing the pain I had been feeling in my left back thigh and I was now only feeling it occasionally on the car seat and not other times.  I feel like maybe it was impatience with healing or maybe it was the consequence of some bruising (as I am still bruising if I bump into things)?  

I gave my legs a really good workout during the conference as I was running around helping out so I was upright and physically running from place to place with things for people for over 8 hours a day, rarely sitting down.  My legs did ache and by day 3 my ankles were a bit swollen in my class 2 Wonder Model tights, but it was all bearable and I didn't get any pain :)

Weeks 11-16 (Month 3) Update

I didn't make weekly blog posts after week 11 as it seemed that I wasn't changing visually and I didn't have weekly changes to report... all that said however, I did still feel like I was healing and I was wondering how to express how I felt.

I cut my MLD down from several sessions a month to one session monthly from the middle of month 3, so I was not planning on having MLD between the middle of month 3 and the middle of month 4.  I felt I no longer had any significant visible external signs of healing (other than my incisions which are still fading) so thought I could save some money by reducing it.  

I felt a mix of emotions during these weeks; lots of relief my surgery journey was over, but also quite down that I was still getting some pressure pain in my left outer thigh.  Mostly it is caused by the seat of my car which has a prominent hard seam under my thigh, and which seems to cause discomfort if I sit right on that seam.  

I emailed Professor Schmeller to try and explain this, and how I was feeling that the back of my outer thighs is not 100% identical.  Much hilarity ensued in trying to photograph a spot on both sides of my bum and explain it by email!  Of course in nature we are not 100% identical on both sides so it is most natural not to be entirely identical.  I'm really not sure why I became so obsessive about scrutinising my flanks when seen from a twisted angle from above (the only way in which you see this variation!).  I had never been obsessed with my body so it was a very strange feeling to keep looking at it and going on about it to my husband and the Professor.  My change in body image has mostly felt subtle and natural and I have struggled to articulate quite why I have been so obsessed in comparing a small area on both flanks - struggling to tell myself, not just others!

I think I was partly so obsessed about this area as it had changed a lot and since puberty my hips had been very rounded.  I had never looked like this and had never really seen that area up close on another woman.  To suddenly have a flatter flank on each side was so strange to me that I kept staring at it and was worried for ages that the Professor had removed too much fat!

The pain in that area came and went during the whole of this month.  That made me quite sad that I might find it still happened after I healed more.  Professor Schmeller said pain should always be less after surgery, never more, and wanted to understand it and my flat patches in quite some detail.  I felt very supported by his attention, but still felt a little mixed emotionally during these weeks.  

Lymphoscintigram: results

As I said the images were interesting, here are my actual results.  Firstly, my initial scan showing the radioactive dye in my feet, just after I was given the injections.  

initial scan

 After I had walked around for two hours they did a second scan and the radioactive dye could then be seen up in my lymph nodes in the groin - I initially imagined it would show the pathways between the two but I think it is really hard to work out!

scan taken 2 hours later

My lymphoscintigram was reviewed at St George's and then discussed with me when I saw Dr Gordon there.  The results were a little surprising as the pace with which the radioactive dye moved through my legs was slower than normal.  They carry out a number of calculations on the scan results and they calculate that normal progress rate to be 8%.  My legs were both fairly equally slow, at just over 4% each.  I had walked constantly for the two hours between the scans but I still had a lot of radioactive dye left in my feet.  

 

The actual scans themselves show the dye in my feet and the route it took through my lymphatics up to my lymph nodes in the groin, and were used in calculating the uptake rates.  When she explained it to me Dr Gordon seemed surprised that the results were suggestive that I had lypmphoedema, not just lipoedema.  She couldn't see any signs of fluid swelling in my feet and lower legs, so she recommended that I could still go ahead with liposuction, but that I should definitely not give up wearing compression afterwards, and that I should wear it at night too for longer than Professor Schmeller recommended, to reduce my risk of developing lymphoedema.    

Dr Gordon said that it would be possible to have such poor lymphatic circulation that she wouldn't recommend taking the risk of harm from surgery.  She was reassuring that I wasn't in that position and she said she couldn't tell me if I was born with this level of impaired lymphatic function, or if my lipoedema had damaged my lymphatics so taken me down to this level from the normal one.  She couldn't tell me how long I might stay at around 4% or how much exactly these results had increased my risk of lymphoedema being caused by the liposuction as she said there is not yet enough research.  She did say that as I was now known to be at a higher risk it was important to ensure I had an experienced and skilled person performing the liposuction, so I emailed Professor Schmeller to check that he was going to be the actual person performing my liposuction as these results made me quite stressed and nervous.  

I have all the images above as I obtained them from St George's, to send to Professor Schmeller as he consulted a German colleague to prepare for my surgery.  St George's will sell them to you on a CD for £10 if your Dr requests it (you pay the finance department, get a reference number to quote to the scanning department and can then collect a CD in person, or have it posted out to you).  

Lymphoscintigram: having the scan

A lymphoscintigram involves a radioactive material being injected into your limb so that a scan can be done to show how quickly the radioactive dye moves up through your legs, and what your lymphatic pathways look like.  This will help distinguish lymphodema from lipodema and give an indication of how healthy your lymphatics are.  

I had my lymphoscintigram done at St George's hospital, as part of the reviews of my lipodema prior to having surgery.  It seems that different centres do the process a little differently (such as how long you are left between the scans) so your experience may vary a little.   

I was able to eat and drink as normal on the day, and was very quickly taken into the scanning room on arrival, where the technician explained the process to me and got me to take my socks off and pull up my trousers.  I was then asked to climb onto a flat table/bed and given an injection in each foot.  

You need to wear socks to the appointment as they want you to leave the cotton wool on to protect your skin from infections (they taped cotton wool over the injection site like they do when you have a blood test). No compression tights that day :) as they want you to have natural circulation of lymph. 

My experience was that the injections are quick and really aren't painful. I felt them going in my foot but no discomfort in my legs and no lasting effects. I had taken paracetamol and ibuprofen as my boss had recommended it but I think it isn't necessary. I was pleasantly surprised how easy it was. They also don't go in exactly the same spot in each foot. How odd is that? 

Then I had to lie on a high bed for a full leg scan which I think took around 10 mins and involved a machine moving above my legs, going from my feet up towards my body. Then I was sent out to walk around for say 2 hours before returning for the final scan.  I just walked around the local shops! 

The second scan took less than 20 minutes and the experience was the same as the first one, except I had some more radiation in a container on my leg outside my clothes as a comparison source. 

I was practising steady breathing to stay still and chatting to the lady doing the scans so the actual scanning time passed quickly and it was interesting seeing the radiation "sparkling" on the monitor screen during the second scan.  

I expected the injections to be right between the toes but you can see from the cotton wool how low it was on me!  I think they went for where my blood vessels were.  

Compression - the dating game

I am still wearing compression after my surgery, and intend to keep wearing it, because my lymphatics are sluggish and I want to look after my lipoedema as best as I can for my future health.  As so many of us are wearing compression I thought I would branch out into reviews of the different compression I'm trying. 

I'm currently in the dating game where I haven't given my heart to any one make or model, as I keep hunting for tights that are a bit softer or a bit smarter or have some comfy open toes, or are in funky colours etc etc.  

I decided that in no other area of our lives would we wear the same thing all the time so it seems to me that the NHS approach of two pairs of compression to last six months is not only a real nuisance for daily washing and drying, but is also unrealistic for my lifestyle - how would the same tights look good in a work meeting, dress down casual and be breathable and extra supportive for exercise classes?  

I do understand that the NHS has limited resources so I understand that the NHS can't provide me with an unlimited amount of compression garments.  I'm lucky that I can afford to treat myself to some extra pairs, so I'm going on a journey over the next few months to try and find:

• everyday thigh support: I can't stand to have too little compression and support on my thighs, I want to support their healing/preserve my surgery results.  
• comfy tights that don't feel scratchy and itchy in wear.  
• tights I can get back into fairly easily after being in the swimming pool. 
• the perfect solution for exercise: this will be covering my foot and offering strong support around my thighs and knees whilst still having a breathable groin/not being too hot.  I may need to achieve this with layering or something in made to measure
• smart work tights: a neutral/natural and modern or inoffensive pair of tights that aren't in a shade that evokes 1980s American Tan or unnatural beige, nor gives me Nora Batty ankles!
• funky coloured tights.  Pre lipodema I had a drawer of patterned and coloured tights.  I did flirt briefly with wearing a pair of funky tights over my compression but it seems too much of a faff to adjust both and wear two pairs so I have not worn any fun ones for months :(
• open toed weekend tights: something for relaxing in which doesn't have open toes that vanish up my foot towards my ankle and be difficult to wear in all my shoes

As I've got a large wishlist, I might not be able to have a spread of pairs that meet these wishes all the time, but now I know what I'm aiming for!  I'm going to the Lipoedema UK conference at the end of the month so I'm hoping there will be a spread of suppliers there to feel the texture of their tights and get some ideas on what to try.  

Almost in love with a wonder model

I'm continuing my hunt for the holy grail - comfortable compression tights that offer support and look good.  I'm finding I still want some thigh support on my wobbly bits so I'm looking at tights which are around the 25-32 mmHg, which is class 2 or class 3 depending on which classification system is used.  

As Daylong and Pebble both had special offers on last week I splashed out on two new pairs, and this is my review of the Solidea Wonder Model CCL 2.  

   

How they looked just out of the packet 

Wonder model comes in a range of colours; I went for Natur which is their palest skin tone as I have naturally fair skin, no hint of a tan.  The colour looks more natural on than it does in these photos.   They come in open and closed toe; I went for closed toe as I find open toes rarely fit the shape of my shoes and tend to walk backwards up my feet during the day too :(  

  

View of the feet showing the different textured soles, which feel a bit more cushioned than normal compression, but can pop out and be visible at the heel or side of the shoe.  

As you can see, they are a nice fit, and don't crease uncomfortably behind the knee when I bend my leg.  

My first impression was how lovely and soft they are: I have tried the Sigvaris Diaphane and Haddenham Veini and both feel more scratchy and nylony - more like cheap tights.  These Wonder Model are very soft to the touch and feel soft on my legs.  I have now worn them for several days and can confirm they do not make me itch!

At the top of the thighs you can see they have a textured band.  It is a design feature as it is a patterned band which is on top of my thighs just below the groin and runs round each leg.  It is approx 2 inches wide in wear.  This is the worst thing about them for me; the band is less compressive so I find I bulge out in my inner thighs where the band is.  That doesn't feel reassuring to me when that area has been smoothed out by the liposuction so I don't want to encourage it to bulge out again and am concerned about my internal healing with this bulging effect.  

In wear I have found they feel quite supportive for day to day running around as they have bands that go up the outside of my hips so give me some bum support too and they look great in the office with my workwear.  Very smart and stylish enough for parties as well as work!

Overall, they are a keeper and are a pretty good choice.   I love the firmness of the class 2 tights and I love their soft texture and look but I find the band is not quite supportive enough for my liking as it allows that bulge.  I have decided to invest in some control thigh suppression underwear to see if that works with these tights to give me the right comfort.  I have had M&S recommended for this so I'll do another post on those and how they work in combination!

Photos - Post Surgery Week 10

 

Here I am 10 weeks after surgery.  You can see how much straighter I am between the legs, with a nice clear line down my inner thighs to my knees where the fat pads have been removed.  My waist is still smaller than my hips as I have a very small waist, but you can see that I no longer stick out as much at the thighs.  

The weather in the UK is unseasonably warm and quite humid, so I've been swollen for a few days.  My ankles by evening have been more obviously swollen on the right than the left but both have seemed a little puffy - the right leg tends to be slightly bigger from the ankle all the way up anyway, and it wasn't quite as fat as in my post surgery compression photo where both feet looked swollen to me.  

I've taken these photos after a night of sleep to try and get the least swelling in them.  I'm not sure if all the post surgery swelling is gone yet - I'll have to see what Professor Schmeller says about that as I think I still have some swelling left in my outer thighs in particular.  

If you are wondering how the incisions healed up, here is a random and fairly representative incision.   The scar is nice and flat, and not raised.  It is still a little bit dark, as you can see.  I have one with a nearby mole and when I go to put bio-oil on at night, I have to be very careful to rub the oil into the scar and not the mole as in slightly dim light it is hard to tell them apart.

   

Here is my worst incision.  This was the one which was slow to completely dry out.  It is very slightly raised and thicker.  It is over 5mm long and maybe 2mm at the widest point.