I'm having my lymphedema leg amputated?

I'm 15 year old male & had lymphedema in my left leg for over 3 years. ive been to every doctor there is.No one is able to treat it or get it under control so they are deciding to amputate it do you think its a good idea ive heard its bad.?I'm havint the surgery the 3 of next month I'm very nervous

the doctors comfirmed that my case is not irrverseable

GREETINGS< Oh my God! You do not want to have your leg amputated. My name is Tina and I'm the owner of Lymphland International Support Group and Website. I'm also an Ask-the-Expert panelist for lymphedema and rare diseases, forums coordinator and writer for ELymphNotes online lymphedema magazine, I'm a cancer survivor, patient advocate, and disability advocate.

First off, what kinds of doctors have you been to, what tests have you had to rule out other problems and illnesses, and what therapies have you tried?

The gold standard treatment is Complete/complex decongestive therapy, which consists of medical massage therapy called manual lymph drainage, compression garments, skin care, and exercises to promote lymph flow. 3 years is not very long. I have had it 10 years plus, I have patients that are 500+ pounds mostly fluid and much of that is in a leg or both legs. It is treatable. Only a doctor who is not educated would suggest such an operation.

First understand that lymphedema is not "just a leg" . When the lymph system malfunctions for any reason whether you were born with less lymph nodes, had damage to your nodes or cancer surgery to remove nodes, it's about 70% of the system that is malfunctioning before lymphedema shows up so it's the WHOLE system that is compromised. If you have your leg removed, you may wind up with lymphedema of the penis or scrotum which is a whole lot worse. I have a member who cannot wear clothing below the waist due to it, he lives in India where there is alot less treatment there than here.

You need to talk to your parents as soon as possible and cancel that surgery and get a decient doctor and get into therapy.

The first thing you all need to do is learn more about lymphedema to start with, start by reading on my site:

http://www.lymphland.com and getting into a support group whether it be you or your parents, my group is:

http://health.groups.yahoo.com/group/lym...

If your leg was severely infected with zero circulation and the skin totally black then it might be a different outcome where they would remove dead parts and still not the leg. Removing your leg is a very drastic surgery that will highly impact your entire life. You are too young to have the impact of a bad decision affect the rest of your life.

My support group also has a chatroom feature if your parents would like to talk to anyone from my group. I'm the owner and I have 5 great managers, any who would be willing to help you find a doctor and therapist and talk to you about lymphedema.

I agree totally with Tina. Your parents need to contact Mrs Prof. Dr. med Etelka F枚ldi at http://www.foeldiklinik.de/ind... or Telefon: +49 (0)7652 - 124 - 0 Dr. Foldi is one of the leading experts worldwide on LE and I have been to her first hand she is well worth the call to save your leg. Report It

can't make that decision for you, but you make the right one, it's irreversible.. god be with you when you do decide..

WHY do you have lymphedema?
did you have radiation?
I think that is a terrible idea... I "HAD" lymphedema....there are many many different programs and theories and help for lymphedema....
if you send me more info as to why you have it then I can make some better suggestions....
where do you live?
what type of doctor made this decision?
who do you live with?
I truly think you should HOLD OFF>>>>>>
they recommended that for me 7 years ago....
I did not do it and AM SO GLAD I DIDN"T.....that would have been a terrible mistake....
just terrible.
hows your pain?
Please email me:
Killerstrands@gmail.com

hi i am sue,i have had Lymphedema since i was 15years old,i am 41 now, there are ways to treat it,massage wraps etc
Amputation should not be an option,since it is the Lymphatic veins etc that are involved the LE could just move elsewhere,i don't think you want to go thru life cutting limbs off.
LE is not curable but it is treatable
there is a group i am part of for people with lymphedema called lymphland@yahoo.com please contact them for more information
sue

Hi unless you have an infection such as celuitis and you have gangrene from the celuitis there is no reason to have your leg amputated I was diagnosed in 2001 with Lymphedema aka
LE and I have been hospitalized 9 times on antibiotics for celuitis from my LE I am a moderator of lymphland a
LE support group and I believe another moderator already has invited you to join our group we are currently 264 members strong and we have lots of answers to offer one of our main goals is to help get the truth out about
LE as there is allot of ignorance of LE evan amongst doctors and nurses unless this is life threatening please seek another opinion no need to chop your leg off just because of some swelling

I am a 42 year old female that has had lymphedema in my leg for almost 10 years now, there are so many other options than amputation, actually that shouldnt even be a thought in your head at this time...there are treatments available to you all over ,..such as compression and message and so on., your doctor should be aware of this ..if not go somewhere else and get another opinion, you have not been everywhere yet ,,contact the National Lymphedema Network and join our group at Lymphland ..DONT HAVE YOUR LEG AMPUTATED!!! I also have a number you can call for more info on a therapist in your area, it is the NAVALT (North American Vodder Association of Lymphatic Therapy). Good luck to you.

please, get some other help, I also have lymphedema, to have ones leg amputated is irreversible.. your life will never be the same.. Find a doctor who knows more about lymphedema than this.. there are many who do wonderful things. surgery only complicates things. Please search for another answer.. Dr Bruno Chikly is one of the innovaters in treatment, I believe he is located in arizona. Please reconsider this.

Man, dude you really don't wanna do that, the lymphedema is gonna spread higher in other parts, you should see this guy from India in the support group, he has le in the male parts, if yours goes there you will really regret having it amputated, there's other options, check them out, www.lymphland.com

I truely question the medical reason(s) that your doctor(s) would feel that the best advice that they could give you is to remove your leg . My advice is to seek a second neutral doctor to review your case and seek other opitions before going forth with the leg removal.Without knowing everything about your medical needs it is hard to answer if it is the right idea or not.
If the problem is just needing to get control of your Lymphedema then there is help out there for that. One thing that you might not have thought of is that Lymphedema can progress and spread thru-out the body. Even if you do decide that removal of your left leg is the right thing to do, Lymphedema might not stop there. Lymphedema could very well spread thru-out the body. If I knew what part of the world you live in then maybe I could help you seek out a doctor or therapist that can help you with your Lymphedema.
I personally know how it is to have Lymphedema and deal with doctor that did not know what was going on. I went thru a few that had no idea what my problem was-other doctors went by the old outdate medical journals.
I started off with just having Lymphedema in my left leg and for a couple years that was it. Now I have Lymphedema in both of my legs. Knee down on both...lucky me huh? So I know it can spread and progress so I take steps to help slow the pace and maybe if I am lucky it will not progress any further. I really wish I knew more about your medical history so I could offer you more or better advice but right now I can't.

I really would seek the advice of a different doctor to see if the removal of your leg is the best choice....Best of luck to you....