LE and Pain in feet and ankles

[alfie19]

I have primary and secondary LE in bith feet and ankles from an injury and having a foot operation in 1973.

I find it extremely painful to walk as the pressure builds up and standing gets unbearable i have to rest with legs elevated several times a day and sometimes for several days but as you know we have to get up to go to the loo, wash, eat etc. I get so fed up with my life and cry alot when the pain get too unbearable i can not sleep what do others do in this situation?

[Lynora]

Is one foot affected? What sort of surgery did you have and have you needed revision surgery? Are you able to wear compression? Are you under the care of a lymphoedema clinic?

[Saffron20]

I have exactly the same problem as you and it really gets me down too. Every day is a struggle to walk and the pain can be excruciating. I have high blood pressure too and the drugs I take just make the pain worse. I do challenge myself every day to keep going but I find it very difficult to do housework and have learned to do the ironing sitting down. I do try and make the most of the good days. My husband also has Parkinson’s so we both struggle some days. Hang on in there and try and stay a little positive

[2198224]

Alfie 19, have you looked into the possibility of getting a pneumatic sequential pump for lymphedema? Those who have them who have commented here seem to think they are great, as they do the job of manual lymph drainage. I'm looking into it, but not getting calls back from the suppliers. I don't know why, but continue to be a squeaky wheel. Best to you in getting some swelling down, and may your holidays be happy! ~Mary Kay

[CCT67 in reply to 2198224]

Hi

I have a compression pump that I use twice daily and couldn’t be without. It’s very important to be aware that not all compression pumps are equal - it’s important to look for one with the most chambers and one that is made specifically to treat Lymphoedema. A reputable pump with clinical effectivess is not cheap but worth the expense. Lymphapress is very reputable internationally. I have a Flexitouch Plus (Tactile Medical) which is not sold in the UK and requires a US doctor prescription to acquire one but I felt it worthwhile jumping through lots of hoops to get one (I’m in the U.K.). If you’re in the US a pump may be covered by insurance.

If you have an experienced Lymphie therapist or specialist Lymphie nurse it’s advisable ito get their input as they are often familiar with the pump options on the market and which one might be more suitable for you. While pumps generally mimic MLD they are not the same as human hands doing lymph drainage ie hands can focus on congested areas in the limb which a pump can’t do. If you’re trying to find a Lymphie therapist in the U.K. the best place to find a qualified therapist is MLDUK.org.uk.

Take care

[2198224 in reply to CCT67]

Thank you CCT67. New info! Tactile Medical's rep got all my info but hasn't replied in months!. I will meet with both a Wound Physician's Assistant and a Urostomy nurse in Missoula MT on 12/26. There are no Lymphedema MD's or clinics anywhere in Butte MT or whole of Montana or whole of USA that I've found so far in a year of g00gling since 11/17 cystectomy complication of Lymphedema. Does anyone who reads this know of a Lymphedema MD in mid or western US? I know there are some micro MD's transplanting lymphnodes in Europe. But I'm not leaving home if can help it. Anyway, your good knowledge/info will be passed along. Appreciate that. Good for you, and Happy Christmas/Holidays.

[CCT67 in reply to 2198224]

This is a UK site so you may not get many responses abuut US resources. Check out the National Lymphedema Network/NLN web support Group at Inspre.com where you’ll find loads of US lymphies.

As for a knowledgable MD, a very prominent LE specialist (located in Palo Alto, CA) is Dr Stan Rockson at Stanford University. Loads of stuff will pop up of you google him, including a number of web lectures. He founded the Lymphatic Education & Research Network over 20 years ago (based in NYC) which has chapters worldwide. LE&RN can who can advise you on Lymphie knowledgable doctors/resources near you. There is also a Certified Lymphedema Therapist search feature on the website. You would be in good hands if you were to find a CLT-LANA as therapists have much more training about lymph drainage, self-treatment, and suitable compression than any doctor.

If you’re interested in one of the experimental surgeries such as Lymph Node Transfer that you mentioned, a reputable Lymphie surgeon is Dr Granzow in LA. There is also a surgeon at U of Iowa, I believe Dr Chen or Chan who many Lymphies have gone to for surgical intervention. There are other surgeons in the US but Dr Granzow is probably the most reputable. LE&RN can advise you on others performing the 3 main Lymphatic related surgeries.

As for the Tactile rep not getting back to you, that’s unfortunate and contrary to my experience with Tactile which has been excellent. I’m sorry to hear the Montana rep hasn’t been. If you find a Lymphie therapist near you via the LE&RN website you may be able to make progress getting a suitable pump.

Happy Chrismas 😊

Catherine

[flow1 in reply to CCT67]

the lymphoedema training academy also has a list of mld therapists which are evidence based lymph.org.uk/directory-of-t...

[CCT67 in reply to flow1]

Hi, yes I’m aware of LTA and I see a FG therapist when my regular Földi therapist is away. As the above post was by an American I didn’t mention the LTA list as there are very few in the US. It will probably be quite a while before FG becomes well known and ICG mapping readily available and covered by US ihealth insurers. And here in the UK it’s so very difficult to get NHS funding for FG mapping which is unfortunately quite cost prohibitive for most people to self pay...