Hi:
If anyone has lymphedema in the face (especially primary) and would be willing to share , I would be very grateful. After eight months of physician after physician telling me they are baffled, I found one that is pointing to a lymphatic issue. Has PT drainage been helpful for people and what pain mediations to most people take? I'm still waiting for a consult with a specialist and it will be at least a few months.
Primary is unusual, but not impossible, in the head and neck, but might be caused by abnormal or malformed lymphatic vessels. Are you in the UK? Lymphscintigraphy could be used as a way of mapping the existing functioning vessels. A manual lymphatic drainage therapist would be able to advise on self care.
It’s rare to have Primary LE in the head but certainly not impossible - there aren’t many of us around. It’s often not recognised as LE by a non-Lymphie specialist medic. I have Multisegmental Primary LE that includes my head/face/neck which is a big problem area for me, very stubborn to drain but with persistence does.
Lynora mentioned lymphatic mapping ie ICG Lymphography and Lymphoscintigraphy scans which are brilliant but not widely accessible. I think you’re in the US? insurance is unlikely to cover ICG Lymphography but may cover Lymphoscintigraphy as is less specialist than ICG. Do explore and push for a scan so that you have a conclusive diagnostic.
Regardless of the specific location and type of lymphatic faults causing LE in the head, Manual Lymphatic Drainage by a CLT whose had training in treating head/neck LE should bring you relief. Throughout my body I don’t have fully formed lymph vessels, nodes, or valves. Regardless of that, I respond very well to traditional lymphatic drainage methods, namely Vodder and Foeldi methods. (Dr Emil Vodder was the founder of MLD a century ago). I’ve tried several methods over the years, including the newest one to come onto the scene in recent years; I personally didn’t find it as effective but our lymphatics all are different so I always recommend shopping around CLTs for the method and CLT you respond best you to.
Search the lymph therapist directory on Lymphatic Education & Research Network LE&RN website, and each of the recognised MLD methods have their own website therapist directory. Note that many CLTs don’t have additional training in head MLD so look for a LANA CLT as their training is advanced.
Learning SLD and other self management techniques daily is essential - a CLT can show you, and there are a lot of SLD tutorials on you tube. Lymphatic diaphragmatic breathing is also important to do daily. Lymphatic breathing is usually associated with limb and torso LE but it’s also helpful for head.
Re pain relief, daily lymphatic drainage is very effective pain reduction. I also find that cool therapy helps, especially in summer when hotter/swelling increases. Don’t reach for Ibuprofen - it is contraindicated for LE. Rather than reducing inflammation Ibuprofen increases it, according to the scientific evidence.
Hi I am finding reading these posts very interesting and informative however please could you explain what some of the abbreviations mean .
I am know that MLD. Is Manual Lymphatic Drainage but a lot of the post on here use abbreviations with regards to treatment etc that I am not understanding. This is a wonderful site that is helping us all so I am very grateful for your posts and other but I am mindful that I am probably not the only person needing clarification . It would help if someone would kindly write a list of the most used abbreviations and explain in more details to educate us all.
Kind Regards and best wishes to everyone
I have Lymphoedema in the face (primary). MLD definitely helps and it's quite easy to do this yourself on the face compared to other parts of the body (you should be able to Google this). Also, you should find that it gets better through the day due to gravity. I never have pain though - sorry to hear this. Lastly, take a look at the Lymphoedema Support Network on YouTube - they may have some good videos / helpers. Let me know if I can be of any more help
I have primary Lymphoedema and am finding the older I get the more places I am getting swelling. I started to get swelling on my face recently, mostly eyelids and under eyes but sometimes my brow area too. I blamed it on wearing facemasks all day. I leave it to gravity at the moment and am usually back to normal by lunch time.
MLD for sure. And you can do this yourself as well on face in the morning. Plus prop your head / bed up when you sleep so it is draining cowards a little bit and everything isn’t getting stuck. Obviously it should be a bit better towards evening if you’ve been up and about. Standing = everything going downwards. Hence let’s worse later. Hope this helps - I have primary in face too.
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