Diagnosis

[1vern0n]

I was diagnosed with lymphoedema last year by having a doppler test. I have now heard that a true diagnosis should be by injecting some dye in between your toes and a machine shows the lymph movement. Does anyone know anything about this?

[TeresaMay]

I was also diagnosed by Doppler. Although the size of my leg due to swelling must have been a clue. But I had no injury or prior operation.

[Mushy1]

ICG Lymphography, sometimes referred to as Fluoroscopy, is the best way to diagnose lymphoedema and assess how well your lymphatic system is functioning. Take a look at this link which tells you about the procedure and how it identifies lymphoedema.

I had this done before opting for LVA surgery.

olp.surgery/understanding-l...

[NanaSJ]

Usually diagnosis is from a specialist practitioner (nurse, physio, doctor) who can confirm if you have lymphoedema. Your GP should be able to refer you to a local service to you. The dye you refer to could be a lymphoscintigraphy (NHS provided sometimes) or ICG lymphography (fluoroscopy, this is usually only available privately), these tests can show what type of lymphoedema you have.

[chazy in reply to NanaSJ]

Mine in both lower legs ( idiopathic ) was diagnosed by a vascular surgeon in clinic, he did a few tests plus the usual of pinching the area of skin between the two middle ish toes, this indicates a negative or positive sign of lymphedema apparently. I also had a full ct scan of all lymph nodes ( some are always enlarged and sore ) in my body with dye and the results were that I have multiple swollen glands throughout but with no obvious cause, so again idiopathic. I obviously have a problem with my lymphatic system but what that is is anyone’s guess lol 😂 I have a few chronic disease’s conditions that are labelled idiopathic so I gues I am just one big mystery 😂😂

[1vern0n in reply to chazy]

And there I was thinking that I was the medical mystery! But on a serious note, it's frustrating isn't it?

[chazy in reply to 1vern0n]

Very frustrating lol 😂 I am so sick of that word “.idiopathic” I think it really is just a get out clause, in other words they can’t be bothered to do anymore 🤣😜 so sent away with the wraps etc and get on with it .

[chazy in reply to chazy]

Oh but the plus side is there is proof that this is not in my head lol 😂 you know how with so many conditions they just love to put it down to it’s nothing, all in your own mind 🤣🤣

[1vern0n in reply to chazy]

Sad but true

[CCT67]

Doppler investigation is not a lymphoedema diagnostic in that it cannot conclusively diagnosis Lymphoedema. Doppler investigates venus circulation.

Imaging for Lymphoedema diagnosis includes Lymphoscintigraphy and ICG Lymphography. Both of these involve injections between webbing of toes/fingers but the scans are very different in how they image. ICG is rarely funded by NHS whereas Lymphoscintigraphy is funded but requires consultant referral

[Microsurgeon]

I agree with CCT67. Doppler or ultrasound will show 'oedema' or extra fluid in the tissues but won't tell you why the fluid is there. (there are many causes of 'oedema'). Most people who present with swelling of one leg are normally investigated for a deep venous thrombosis (DVT). DVT is an important diagnosis as it is common, potentially life threatening and treatable. It is reliably diagnosed on doppler ultrasound and there are lots of clinics in the UK that do this investigation, it is cheap and easily available to most doctors. Hence why if you present to GP or A+E with unilateral leg swelling then most people will get a doppler to rule out DVT. However if DVT is ruled out then people will often then make the diagnosis of lymphoedema because DVT is exclude. The doppler didn't 'make the diagnosis' but ruled out the most common other diagnosis. To positively make the diagnosis of lymphoedema then ICG lymphography or a lymphoscintigraphy both assess the lymphatics specifically and are useful.

I wrote an article a few years ago for the LSN which might help explain in more detail.

lymphoedema.org/information...

Specific investigations can tell you more about your lymphoedema which may help with optimising the best treatment options and allow you to understand your disease more. Hope that helps

[1vern0n in reply to Microsurgeon]

A fascinating piece which I will re-read to help digest all your information. Thank you.

[Andy13]

Research published in 2019 demonstrated that there is more than 1 lymphatic pathway in the leg. Injections between the toes , which I've had, may show if 1 of the 4 pathways isn't working but will tell you little or nothing about the other 3. So before paying anyone to perform this rather painful test I strongly recommend you ask them to explain how the lymphatic pathways in the leg work and what treatments they typically recommend based on those findings of there being 4 pathways. Apologies for not having the link to the 2019 paper that found the other 3 pathways but I'll dig it out and send it ASAP.

Edit: additional info

images.app.goo.gl/ZvaCrcq3y...

pubs.rsna.org/doi/full/10.1...

[Microsurgeon in reply to Andy13]

Thanks Andy13. You have made some useful points and the paper you refer to is a thoughtful study. I'm sorry the injections you had were painful. If it was ICG then the injection is painful as the ICG is dissolved in water rather than saline. However local anaesthetic injection prior removes the pain of injection and doesn't affect the scan.

A few points to consider about the 4 pathways. Firstly whilst that is a radiological classification it may not or may not have clinical relevance. The reason I say this is that the lymphatics all drain through the pelvic lymph nodes. If you have had pelvic cancer treatment then generally all of those pathways have been disrupted by the treatment. It is very rare for only one of the pathways to have been disrupted only in this way (eg sentinel lymph node biopsy) . Also there will be some overlap between the different drainage areas of each system and so swelling in the foot might drain via any of the 4 pathways the paper mentions. Another similar approach is a lymphosome concept in which you look at areas of the body and how they are drained.

ncbi.nlm.nih.gov/pmc/articl...

I totally agree that imaging in lymphoedema is a complex issue and the medical profession still has a long way to go in understanding the function of the lymphatics in disease, the wide range of variation in each individuals lymphatic system. We still need better imaging to tailor both non surgical and surgical treatments to patients with lymphoedema.

Primary lymphoedema is a different kettle of fish altogether and imaging is poor at working out the specific reason to cause lymphatic dysfunction. However it will make the diagnosis (or rule it out) of lymphoedema which can be very useful in primary type disease as patients are often struggling to get to the reason for their symptoms.

I agree that the doctor / nurse requesting the imaging should have a good knowledge of what they are asking for, why the scan is needed, what information each scan might provide and also how that would change treatment.

[BedfordBoy in reply to Microsurgeon]

Very interesting. Thank you. I have had a few of these scans over the past few years and can never remember what they were called. One that did stand out was called nuclear pathway something. With the "nuclear" prefix I was a bit wary of going through with it and I seem to remember them telling me that I should keep 2 metres from any pregnant women and should avoid sleeping next to my wife for a day or two. Apparently the dye used was actually radio active! To be honest I didn't question the doctors enough and I really wish I knew more about it.Has anyone else had this test?

[walk]

Yes, I had that done, its a lymphoscintigram (excuse spelling). They inject dye in through your toes & do a scan. I had to pay privately and I too had no injury or operation, though the leg affected used to swell more than the other on flights etc.