There is hope and help

I have been reading all of the post here and can hear the hopeless and frustration. I too have Lymphedema. I started swelling in 2004. I've saw thirteen different doctors before I got a definite diagnoses. I had already started doing the massages and leg bandage ect... However, in past two years the swelling has gotten worse as well as pain in feet, legs and knees. Clothes and shoes are a very frustrating subject and I am no longer the out going person I used to be. I felt hopeless. But...... Good news is this past September I went to a seminar in San Franciso Ca. I had already been told I should see this Specialist in Stanford but it would take six months to get an appointment as there aren't many doctors that know anything about this disease. While at the seminar, met another specialist from down south and two of his patients. There is a procedure (SAPL) that is being done and is very successful. It is not a cure and you must follow aftercare advise but, it will give you normal limbs again. It also reduces the bouts with cellulitis and help with the pain in the feet and legs. I am planning to have this procedure before the end of the year. As I said, I met and spoke with two of the patients who are thrilled with the outcome. The downside is that insurance here in the US doesn't pay a dime. Some people have done a go fund me page to raise funds. I don't know why this information isn't more readily available but there is a lager push for awareness than ever before. This surgery is not new and has been around and successful for years. Anyways, I hope this information helps. I know I was thrilled to find out about the seminar and I was amazed at the information all of the doctors and patients and suppliers shared. It has given me hope again .

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  • Do keep us informed - I am really interested. Karol Sikora, in his book on how to get better treatment from NHS, advocates getting info from USA. I only wish our pompous NHS oncologists would follow his advice. aftercancers.com/2016/05/ka...

  • Interesting he advocates getting information from the USA. At the seminar I was at this past September we had multiple doctors speaking and most were from Europe. When I asked the question as to why it was so difficult to be treated or even diagnosed, I was told that the USA is considered a third world country where Lymphedema is concerned. Our doctors receive little to no training on the lymphatic system. Patients are being asked to educate doctors. I was fortunate to find a specialist that really does know what he is doing. My plans for sugary are sometime between October to December this year. Yes I'll keep you posted. Meantime checkout lymphedemasucks.org. For a patient who has already done the SAPL surgery.

  • I find this quite interesting as with all due respect to MacMillan and Breast Cancer Care, I got a lot of info from Breast cancer.org, and last year when diagnosed with Lymphodema I put that in the search button, and it came up with 700 articles on the subject,

  • I have been searching on my computers for years on the topic of lymphedema. Initially I found very little and then it seemed to explode with info. I wasn't sure what was good and what was bad until I heard about the seminar and went. Ithe has given meverything so much hope for the future. I will be attending every time they have one in my area as they are really starting to promote awareness and new things are in the works.

  • Good to hear you learned about SAPL - it's not brand new and it's undertaken on the side of the pond, too. It's important to be aware that although it will reduce limb size it will NOT eliminate the need to continuously wear compression garments. It is also important for anyone contemplating it that it should ideally be undertaken in tandem with VLNT for best outcomes.

    Neither surgergical approach will result in cure, therefore compression will always be required to keep the limb reduction after surgery.

    It's important for anyone considering surgery not to have false hope that the procedure will negate the need for lifelong careful management of Lymphoedema. That being said, having to manage smaller, less swollen limbs certainly does appeal.

  • You are right it is not a cure and constant vigilence wearing stocking is a must. But we wear them now as it is. I personally cannot wait to have a smaller leg and less bouts with cellulitis and pain.

  • SAPL??? VLNT???? Please could you explain the terms, as some people may not know what this is about.

  • Lynora , VLNT and LVA are microsurgical surgeries that can improve the patient's own physiologic drainage of the lymphatic fluid. These are used when patient has less damage or are in early stages.

    SAPL which stands for Suction Assisted Protein Lipectomy is when a patient is in latter stages and fluid has change to solid protein. They now can go in and suction out the solid waste and with compression garments they can reduce limb back to near normal and in some cases a little better than normal. It is not a cure. But if you follow after care and wear the garments the leg can stay small. There is a women who had this surgery and documented her experience. Check her out at Lymphedemasucks.org and also look into LymphedemaTreatmentAct.org.

    If you get a chance, I highly recommend you go to an annual seminar. That is where you will finally get so much information.

  • I too have heard of this procedure and saw results of a patient. The problem is getting the money for the procedure. I do have hope for this procedure, not I have to focus on how I would be able to pay for it. Good luck, I am happy for you.

  • Thank you. Yes it is expensive. Insurance considers it cosmetic and unnecessary. But there are many trying to fight it. Hopefully they will see it is no different than having breast reconstruction after cancer.

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