ICG Imaging – The New Way To Diagnose Lymphoedema

It’s no secret that I have suffer lymphoedema in my right arm after having breast cancer 5 years ago. I find it very frustrating as current treatment methods have had limited success in returning my lymph fluid levels back down into ‘normal’ range, not to mention the difficulty in buying clothes with sleeves that actually fit my swollen arm.

There are many treatment options to manage the lymphoedema, such as manual lymphatic drainage massage (MLD), compression bandaging, wearing garments or intermittent pneumatic compression (IPC machine), and I have tried all of these to various levels of success (read more on “Living with Lymphoedema after Cancer” here). But I still remain with a swollen arm and extracellular fluid levels that are above the ‘normal’ range. Hence the frustration. Even when applying all that has been medically researched, we were at a loss as to why my levels had plateaued and nothing we did would budge it. So when my physio team told me about this new diagnostic method for mapping the lymphatic pathways in my arm and a chance to find out what’s actually going on in there, I decided this information could be the key to turning things around. There was a catch however, they don’t do this imaging procedure in Queensland (yet).

Enter Macquarie University’s Lymphoedema Clinic and the Australian Lymphoedema Education Research and Treatment (ALERT) team. This team doesn’t just lead the way in Australia for education and research into the causes of lymphoedema, they also give diagnostic assessments of your lymphatic system, provide the right strategies for effective management and even provide surgical treatment for those at risk of living with lymphoedema. I decided it was time to travel to Sydney for the day to enlist their help and have a diagnostic assessment of my arm and find out what will actually work in my situation to further reduce my fluid levels.

So, what is this new way of mapping your lymphatic system?

At the diagnostic clinic, an expert team of doctors and therapists assess you using Indocyanine Green (ICG) imaging. ICG Fluorescence Lymphography is a technique used to map the lymphatic vessels in your limb. The green dye is injected into the affect part of the body and a special infrared camera is used to map the vessel pathways and how well they are working. This imaging has been around since the 1960s and is used often in diagnosing conditions such as macular degeneration, however its use in mapping lymphatic systems is relatively new (hence why it is not in all parts of Australia yet). In short, what it basically does is give you a road map for what is actually going on in your arm/leg/trunk so you know the best way to treat and manage it.

Why have this treatment done?

The ICG imaging helps you to determine:
* If there is any damage or dysfunction to your lymphatic system and where the damage is.
* Where your lymphatic system is draining to and how best to use MLD techniques for ongoing management of your lymphoedema.

Yay! Answers!

What is the ICG imaging process?

You undertake 3 appointment. The first one is information gathering where they measure your arm and lymphatic fluid levels. The second appointment is with a special who explains the procedure in depth and allows you to ask any questions you may have. The third appointment is where the ICG imaging itself happens. The ICG examination takes approximately 1.5 hours and includes the following steps:

* You receive 4 small injections of the ICG dye to the affected area. In my case, it was 2 on the top of the hand and two in the underside of the wrist.
* You are then observed for a few moments to make sure there is now reaction (reaction possibility is extremely low and this is just good medical sense).
* The therapist will then perform MLD to determine your individual drainage patterns. This is the bulk of your time and takes around an hour. What they are looking for is where the vessels are working well (these look like veins or lines on the imaging – like the down pipes on your house that drain the rain away from your roof gutters, underground and out to the street gutters), and where they might be damaged (these look like puddles on the imaging – like if those drain pipes are damaged and then puddle on the surface in search of other ways to drain down into the pipes that are working well).
* In this time, they are drawing all over your arm with red and green Sharpie pens and photographing the results for your report.

The whole process is painless and I found it extremely fascinating to watch.

After your appointment

Within 1-2 weeks of your appointment, you receive a detailed report of your examination, with findings and recommendations for ongoing management. It includes a chart showing a map of exactly how your lymphatic system is working that you can take back to you physio and medical team. They also send a copy of the report to your referring doctor and anyone on your medical team that you nominate. These recommendations can range from basic massaging techniques, to purchasing your own IPC machine, to surgical options such as liposuction, microsurgery or lymph node transfer. But it completely depends on the individual and what they find. They may not suggest these surgical treatments.

My results

My report came back and, as expected, gave a recommendation on how to proceed with MLD according to what pathways were working and were not working. For me, there was only one other option they discussed, and that was the option of liposuction on my arm should the MLD techniques not have any success or my arm gets worse. At the time of writing this article, I hadn’t had the opportunity to discuss these recommendations with my medical team to see which would be the best way to proceed. I will come back and update this post when I have greater interpretation of the report.

How do I go about getting this procedure done?

Talk to you physio/medical team and see if this mapping would be of benefit to you. Then you will need a referral from you doctor before contacting the clinic for an appointment**. Please be aware that the first available appointment time they can find you may be in a few months’ time.

How do I get in touch with the clinic?

Here are the clinic contact details for you**:

MQ Health Lymphoedema Clinic
Macquarie University Clinic
Suite 301, level 3,
2 Technology Place
Macquarie University, NSW, 2109
T: (02) 9812 2950
F: (02) 9475 0328
E: lymphoedema@mqhealth.org.au
W: https://www.mqhealth.org.au/hospital-clinics/lymphoedema-clinic

I can’t speak highly enough of the team at the clinic. Every single one of them were professional, friendly, helpful, put you at ease and made you feel very relaxed.

Costs

IPC imaging itself is not covered by Medicare and a high fee does apply. Contact the clinic for further details. From my experience, allow about $1000 for the day to cover the procedure and all the appointments (not including flights to Sydney or Uber/train fees from the airport to the university). I did get a very small portion of the consultation fees back via private health and Medicare, but not the ICG procedure itself. They ladies at the front desk will help you with this rebate via the HICAPS machine.

Getting to/from the university

You can Uber or taxi. An Uber from the airport took me about 30 mins and cost about $83 (with tolls). It is very direct. You can also take the train as there is a station right at the university. I did this on the way back to the airport. It cost me about $21 and I had to change trains at Central. Give yourself a good hour if you take this option. The bonus was it took me over the Sydney Harbour Bridge, so I got a smidge of sight-seeing in.

When booking your flights home, make sure you allow A LOT of time after the procedure to get to the airport as you will most likely be travelling back in peak hour traffic. I was on the 7:30pm flight home to Brisbane and as I didn’t get out of the clinic until 4:45pm. I made it to the airport in time, but I was thankful I didn’t have an earlier flight like I had originally planned. Wouldn’t have made it otherwise.

Peak hour in Sydney is HUGE. It is a little more reliable to catch the train in peak hour. However, make sure you check for track work before you decide on the train. The T1 Orange train line from the university to Central is undergoing track work from Sunday 30th September 2018 for about 7 months. There will be buses in their place, so could take longer than normal and you will be back in the peak hour traffic on the road.

* Please remember….. Any medical story portrayed on this blog site is a reflection on my medical experiences only. Each medical experience is uniquely different. My words do not reflect the thoughts and feelings of other patients or cancer survivors. They are in no way to be taken as medical advice. Should you have any concerns, please seek professional help as I am not a medical practitioner.

** Contact details and referral procedure were correct at the time of publishing this post. Please be aware that processes may have changed since publication date. Double check with the clinic or your GP to see what you need to do or if the process has changed.