You may recall my last post pointed out that I didn’t feel as if the stem cells had worked. Inside, if I removed my compression, I thought I could feel the lymph fluid slide down to my foot. The fluid is evident in my foot, for sure. But I couldn’t confirm if the sensation was fluid, or the nerve damage returning. Fibrotic tissue forming after surgery can increase the sensation, too.
The insurance company will not cover a second operation, not even to take away the last areas of lipodemic tissue, stating that the operation is “unorthodox” They won’t cover a Lymphoscintigram for us to check progress, as it is “not necessary”
I set off for my June follow up appointment with Dr Shim, to hear his thoughts on this and discuss further.
He took the measurements as per usual and you can really see the reduction in volume. I had put a little weight back on after my trip home to England, but it will come off again over the new couple of weeks. I was still very pleased with his work, but there are pads of lipodemic fat returning from the areas where it was not completely removed, and they are growing larger. In fact, on the back of my right thigh, when I sit down, I can feel the pad of fat and it is tender.
We marked the areas where the lumps were and Dr Shim injected them with instructions to massage them each day. The injections would help break down the fat molecules, to make them small enough to be removed via the bloodstream. Sure enough, they have melted away. Massaging at first was painful, but as the areas got smaller, the discomfort reduced. 10 days after the injections, I still have a few bruises, but those growing lumps have mainly gone.
The routine sonogram revealed that my right calf (still larger than my left) was devoid of fluid. The left calf also showed no fluid. But it is still pooling in my left foot, but not as much as before. There was some present after my train journey, sitting still and not elevating is not good for lymphodemic limbs.
I’m not sure why the problem has gravitated into my foot, and I couldn’t really find any information in Foldi’s book of Lymphology and some of the support groups for Lymphodema and Lipodema were nonplussed.
Dr Shim pointed out that enthusiastic bandaging or compression may be stopping the fluid escaping back up. Capri length and open toe garments can do this, too. The end of my new Jobst open toe compression garments sits tightly across this area and is uncomfortable at night, when blood pressures fall as we lay prone.
He was excited to see that there was no fluid in the calf areas, but I am aware that compression and MLD can result in this, unless they are stopped, then the fluid builds up again.
Even those who have had lymph node transplants report that they have good results, but compression is still needed, as there is no known cure for Lymphodema.
On a really hot day, I thought I would take a little gamble….and walk in my finest Korean shorts and sandals along the river, sheltering my legs with factor 50 and see what happened.. A maximum of 2 hours walking, but with no compression.
It was so cool and comfortable! My compression tights have become a comfort blanket of sorts, for some reason, my legs feel wobbly (and look wobbly! And ghostly pale!) as if I can’t walk without my tights. I can’t explain this. But the refreshing breeze which my legs don’t feel under tights and trousers was so nice! We picked up the pace and I strode out, comfortable and no pain, no gravitational pull from fluids.. maybe because they are already in my foot? I don’t know. I hadn’t compressed the lipodemic thighs, either, which is a bad thing, as the fat cells are free to come out to play and expand!
I forgot about my insides and we wondered around the tents being erected for the whale festival taking place next week.
That evening, I decided to go to bed without any compression garments on. Again, my body temperature was normal ( no hot flushes to wake me!) and allowed me to sleep undisturbed. When I awoke next morning and checked my feet out, I was amazed to see that the fluid in my foot had virtually gone.
I have tried this a couple of times since, with the same success, but always for only 24 hours or so in every 3-4 days. If any new connections have formed, I don’t want to undo the progress.
Here, you can see what I mean…look! no tights!
I will continue with this for now and report back on any changes, good or bad. Happy days!