When I was first diagnosed with lymphedema I was told to INSIST on a Doppler test every year. As this test takes an hour should I be demanding this during the pandemic? I am not sure of why the test is needed. Each year so far I have had to ask for the test; my GP practice did not call me for the test. There are annual blood tests that I have previously had other conditions. They seem to have been suspended.
Doppler Test: When I was first diagnosed with lymphedema... - LSN
A Doppler ultrasound checks the flow of blood in arteries and veins. Some therapists recommend this test is done before prescribing compression. It may not be necessary to have it just now. You could ask your GP or practice nurse for their opinion?
I've been attending a NHS Lymphoedema Clinic for 3.5 years; Doppler test has never been mentioned. About 2 years ago I paid for a general assessment of my lymphoedema plus ICG scan; it included a test (possibly Doppler) to check my vascular system - it was the first time I heard of such a thing.
Hi. Were you glad you got the assessment and ICG done? Has it helped in treating your lymphedema? Would you recommend having it done? I’m in early stages of lymphedema but am young and want to make sure I manage it well so it’s no a problem when I get older.
Hi, I am glad to have had the assessment and ICG done.
I developed lymphoedema May 2017 shortly after my cervical cancer treatment. Dec 2018 I had an ICG scan + ?Doppler test with LymphVision; it seems that some some people have unusal lymph drainage pathways and LymphVision advises for a lymphatic drainage massage tailored for the individual, based on information gained from the ICG scan. From the scan of my lymphie leg only (one of my legs looks normal) LymphVision advised that I didn't have any unusual drainage pathways and I ended up with a plan for what is essentially a generic lymphatic drainage massage routine with the exception that LymphVision teach a particular way of using the hands to perform the massage (FG-MLD). It was very interesting to see the images in real time of how my lymph fluid was moving (or not) in my foot/leg and I did come away with a better understanding of my lymphoedema, some very good tips of how it might be best managed and feeling very motivated to follow those tips through - which I've done.
Dec 2019 I decided to get an assessment with The Oxford Lymphoedema Practice (OLP) who offer LVA surgery, venous lymph node transfer (VLNT) or liposuction. OLP did ICG scans on both my legs and the doctor considered that the scans indicated that my lymph system was malfunctioning in a way that wasn't typical for someone with secondary lymphoedema. From there I had a lymphscintigraphy and the report from that advised that I may have a pre-existing sub-clinical primary lymphoedema. OLP concluded that they considered I was neither suitable for LVA nor VLNT but that liposuction could be an option if my swelling were to significantly increase. The OLP reports and post consultation support were very good and helped to further increase my understanding of my particular condition.
I think the main benefit that came from my ICG scans was that they have enabled more proactive management of my swelling. Both scans showed I have don't have anything like normal lymph function below my knee; the OLP ICG report states that my lymphoedema is severe. It was very empowering to have that report because my NHS lymphoedema clinic were advising me that my lymphoedema was mild and were prescribing me with a light compression ready made stocking on the basis that my leg looks fairly normal; I don't think they were appreciating how uncomfortable I was and how hard I was working to keep my swelling under control. My report from OLP helped to support my case that I needed a custom made flat knit stocking; after 3 goes I've had a prescription since Sept 2019 for a stocking that has worked well for me. It's likely I would have got such a stocking at some point but probably not before my leg had got worse and more irreversible changes had occurred to my lymph vessels. It's taken a lot of time, effort and quite a bit of money to get to where I am but I'm pleased I perservered albeit I'm under no illusions that I need to continue to commit to managing my condition.
See links for further information (not sure where you are based, I'm in the UK so the links I give might not be totally relevant for you but may have information you find useful):
Hello I have never heard of a Doppler test. But I did have a scan of my legs about 4 years ago or maybes it was 5. The scan told the specialist how much water or lymph fluid was in my legs. To test blood flow etc, they tested my reflexes, which were good and they also tested for speed of blood flow by pressing on my toes and then releasing them, which resulted in being told I had good blood flow. They also took a blood sample and did a blood pressure test on my arm. Which apparently told them that my heart rate was slightly raised that day. I then told the specialist I had asthma and COPD and the medications for those conditions, is likely to have caused the raised blood pressure or heart rate.
Due to Covid measures etc closing everything down or stopping regular appointments etc, I have not been seen for 2 years now and the likelihood of it being another year is strong as we are in a 3rd lockdown. I think the worst condition of all at the moment is the fact that as someone working from home, I feel I am going mad. With a) the nature of my job as I am a teacher used to classrooms of adult learners and not microsoft teams online and b) the fridge, the biscuit tin, cake box and the crisp sack, are calling to me all the time. So, as everything takes longer to do online, as it is a fallacy that technology has speeded up work, I find I get less time for breaks away from the computer with my feet up and any breaks are not taken for a proper lunch break, as learners who do engage are the needy ones, hence lunch has become a series of snacks with an evening meal an hour after working online is done. So, my weight will escalate again and I can't get myself out of this rut, until the lockdown stops and some sort of normality returns.
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