Relief quest

I'm new here. I have secondary lymphadema in my right leg due to having radiation for Hodgkin's disease 30 years ago! This all began 4 years ago with slight swelling but has increased the past 3 years. I have wrapped but the compression garments do not hold my leg to its wrapping size. I have had acupuncture, Ct scans and other tests to rule out any other condition. I had a lymphscinctography (spelling) which showed my lymph flow to be normal even though my leg is twice the size as my normal leg!

I have had a tremendous amount of stress in the past 20 years and can't help but think it has been a huge contributing factor. I am not overweight although my big leg makes me feel I am. I've come to terms with not wearing jeans or heels anymore and am revamping my wardrobe. It has been a challenge with work attire. Exercising and moving is a constant although my leg gets in the way and hinders my yoga practices and long hikes.

So far I really have not found anything that really helps or aggravates the condition. One day at a time and I am grateful for each day and the opportunity to find some relief. I will continue to post as I discover anything. I already eat healthy, exercise and have mostly lived an active natural life so I no longer worry about the wine or dessert!

17 Replies

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  • Where do you live Tlen? Do you attend a Lymphoedema clinic?

  • I was going to one when I was getting wrapped but my leg never stayed down once unwrapped and wearing garment. They fit me with a night garment which I wore a few nights and developed a leg infection. I feel being covered all the time is not healthy either. The MLD was ineffective at this clinic and was only 30 minutes. My insurance was charged an exorbitant amount. I found a clinic where a therapist does MLD and I am hoping my insurance will cover it. How long should an MLD session be and how often to see result? I have been doing self MLD at least once a day.

  • Where are you based?

  • North Jersey

  • Is there a service on the island, or do you need to go to the mainland?

  • Northern New Jersey in the USA

  • Ah ha! I did wonder!

    Have you been in touch with the National Lymphedema Network, in the US? They hold a list of clinicians throughout North America. Also, there is the Lymphedema Association of North America (LANA) which lists therapists. There is a US patient-led information website at lymphedemapeople.com

  • Have you checked with a vascular surgeon?

  • Yes. Have had Doppler etc. every test I have had shows everything to be perfectly normal!

  • Have you had manual lymph therapy and does it help, even if you don't show dysfunction in lymphscintiography?

    If you don't have anything wrong with your lymph flow, then maybe you should consult a surgeon to find out if liposuction would be a good option for reducing mass from your leg. I know how you feel, I also feel and look overweight due to my legs even though I'm really not, and have a hard time finding good clothes to wear.

  • Thank you I heard they do drainage at a clinic in germany. It seems Europe is more advanced in treating lymphadema

  • Have you tried MLD? (Manual Lymphatic Drainage)? I went to Europe for much of my cancer treatment. There MLD is used much more - and their survival rates are FAR better than ours! Also, your comment proves that post-cancer, treatment side effects can manifest themselves years later. US Govt. websites all say this, yet in UK once we pass the magic 5 year mark, the NHS wants to hide us away and deny that our treatment can throw up problems years later!

  • Agree. I am currently trying to get MLD covered by another therapist. She says I should be coming at least once a week until under control but I cannot affor at 160 a visit!

  • Hi Tien - welcome to this lovely group! You will get a lot of advice here - and hopefully you can share your tips too. It sounds like you have accepted the condition you have quite well - just wish you didn't have to! As a therapist, I would support the idea of having a good lymphoedema therapist by your side to help you problem solve things as you go along in life. Lymphoedema, as you know, is a strange condition - what works well for one, does not work well for another. Things that you can try include: elevate the end of your bed (or put a pillow or two under your mattress) to help drain that leg as you sleep; look at the type of fabric your garment is made of (flat-knit is preferred in moderate to severe lymphoedema - this is the type that has the seam up the back - and custom made if your leg is not a 'normal' shape, whatever normal is) - if bandages get your leg down, but the garment does not hold it, check the level of compression (class 2, 3, or 4 etc) - some people even need to layer the compression to give the leg a boost, but this must be balance with your circulation in the leg (arterial); replace your garments every 3-6 months (they lose their compression, and if not replaced, the leg will start to grow ...) and then there is MLD - you can do this for yourself, or have a therapist do it for you (or have a pump to mimic the action). You haven't mentioned cellulitis, and I hope you haven't had it - but if the lymph fluid is building up, the risk of infection (and severity) increases, and it does so much damage to the leg, so best avoid it. Hope to see you around more - and get some relief from this condition! Cheers, Clare :)

  • Thank you for the information. I had a custom flat knit garment custom made over a year ago which did not hold my leg and was costly. Currently wearing medivan which is more comfortable and i bought higher compression 30-40. The most recent MLD therapist I went to and has had quite a bit of training suggested higher compression 40-50 which I may need a script for. My legs are normally thin so maybe I just need higher compression? Yes I had an infection a few months ago(first one) they did not really say type but mentioned strep. I have been using my compression pump once a day since this has become a controversial device in lymphadema therapy. My gp suggested I use it more yesterday but between working etc. I really do not have time to do 3 hours a day! crazy. I agree what works for one person does not work for another. I pray I can figure out what my body needs. I am 52 now and have always been very active. It worries me to think how it could be at 70 but no sense in going there! I will post any updates that can help others.

    thanks,

    Tricia

  • Hi Tricia, sounds like you are doing well with battling on. Funny about the pumps - not so popular in Australia (that's where I'm from), but loved in the USA (that's where I'm at now). They can be great - just make sure you drain your trunk before you turn the pump on (unless the pump as a section that covers the trunk/abdominal area). With the compression, the different brands are often tolerated differently - just depends what your body likes best. Don't worry too much about the age - some people need less compression as they age (cos the skin and all the vessels change with age). That's where the good therapist is useful - it's a bit like having a good dentist. Once you're doing well, the dentist just does check-ups - but from time to time, you need intervention! One other point, I met a young lady here recently - she is trying to find a garment that keeps her leg measures down - she's in 40-50 and not holding - but she loses centimeters overnight when using her new 'sleeping garment' (these are popular in the US too - and expensive). I think she's wearing a Jovipak. So that's another type of thing you could try. But she's also still having trouble in the day with keeping the measures down. Gravity is probably half the battle! Don't forget - exercise in the pool is great - eliminates gravity, gets your whole body lymphatics pumping, and the compression effects of the water are good too. :)

  • Tien, If you contact LSN they may be able to find an MLD therapist who is cheaper. I pay £75 for an hour's session in Harley Street.

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