Just got back from Oxford clinic having had my lymphatic system checked. ICG works by injecting fluorescent dye into both arms and tracking the movement of the fluid round the lymphatic system using an infrared light. It was really interesting to see on screen my good side looking like a brightly lit road map at night. Absolutely shocking to see the damaged side. Nice lights and channels in my hand and forearm and above my elbow and then - nothing but blackness in my upper arm. Lots of speckling and pooling where the lymph has seeped into the tissue in a couple of places. This is what causes the swelling.
I'm lucky. I have options. My LD is very recent, and currently between 9%-11%. The lymphatic movement in the damaged side is still very strong, although ultimately it hasn't got anywhere to go. This makes me an ideal candidate for supermicrosurgery. I will have to self-fund as this isn't available on the NHS and I don't have insurance. Lots to think about.
Thanks for your post.
I hope everything goes well and I look forward to hearing how you get on.
I checked my insurance and it will cover MLD so I am currently looking for a local massage specialist. NHS services for this condition really are very poor.
Warning - long post!
Hi all. Since my LD diagnosis 6 weeks ago, I've been doing a lot of research online into the condition and must say I've been pretty disappointed with what I've learned. I'm classed as having mild LD and have only been offered the most basic help eg DVD and compression sleeve.There is no specialist at my hospital.
In another thread I've posted that I appear to have reduced it from 15% to 9% by using the sleeve and performing SLD. However, my next appointment won't be for another 3 months (although I don't have a date yet). I'm simply not prepared to take it on trust that it will continue to improve.
At the very least I'd like to know how badly damaged my lymphatic system is, so on Tuesday I'm going to Oxford where I'll hopefully undergo something called ICG lymphography. This test is not available on the NHS and so I'm going privately.
After that, there may be the possibility of pioneering bypass surgery, but this is also not available on the NHS. I'm keeping an open mind about that.
If you want to find out more, just type Oxford ICG lymphography into a search engine and you should be able to find a link.
I should stress that I have no links to the clinic and am only going there because there's very little choice out there.
Fingers crossed something positive will come out of my visit but in any event I'll let you know how I get on. xx