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.