MLL Please what can I do??????????

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MLL Please what can I do??????????

Postby Cindy » Mon Feb 07, 2011 4:23 am

I have had trouble with massive localized lymph edema in both my thighs. They are both so large now I can not sleep on my side at all. I can not sit back on any chair. My right leg is the biggest. It has 2 large lumps on it one on top of another. My lower legs are well under control. I have not been to see my therapist since last Feb. 2010. I first in the hospital for infection in my right thigh. Then I went in again in July for my left thigh. I almost died that time I had a stay of 6 weeks and 3 months in a rest home. When I was with my therapist last she was trying many different ways to wrap my thighs but none worked. My husband helps me with all my wraps but he is sick himself and wrapping my thighs is to much for him. I read and saw the man on here who has this in one leg. Do you know if he had surgery on his leg and how it worked out for him. I do not want surgery. But I don't know what to do. I hurt every day. Sometimes very bad. I can not sleep without pain pills. I mean Tylenol sorry can't spell. :oops: I have lost 101 lbs since I was sick in July. But my docs are shocked to see my thighs have not melted away like everywhere else :lol: :lol: They make me so mad. No one will bother to study lymph and just say I am fat. Loose weight and it will all go away. But I can say my lungs are doing better. I was on 10 for oxygen now I use 6 I am so grateful Pat how are your lungs doing?.
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Re: MLL Please what can I do??????????

Postby patoco » Mon Feb 07, 2011 12:39 pm

Hi Ya Cindy :)

I share your frustration with those doctors. Geeezzz, when will they ever care enough to learn about LE and/or to think outside their narrow little box!

While surgery is the most often treatment for localized LE, many therapists, including our own Tom has successfully treated them with MLD/CDT. If at all possible get to your therapist and check on this. It's the only other thing that really is available and if it will work and your therapist is willing to try it it would be great.

All these docs have to do is to type in"localized lymphedema"and they would find literally scads of info on it.

101 pounds is some serious weight loss. To have lost that much weight and still have the massive localized LE should at least cause them to question.

I can imagine the pain from it. I seemed to have narrowly avoided this myself. I do have an larger area in my left leg (between knee and hip) that was actually triggered by those debulking surgeries I had.

If we need to provide some documentation, just let me know.

My lungs are still pretty much the same, except that I am able to go another day or so before draining. LOL...4 - 5 days doesn't sound like much, but to me it is great as I was having to do it every 2 - 3 days. That helps me also in terms on controlling my electrolytes etc.

my very best to ya! :!:

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Re: MLL Please what can I do??????????

Postby carljspeed » Wed Mar 30, 2011 6:25 pm

I also have rather large MLL's in both legs (larger in my left and smaller in my right). This is further complicated by having hidradenitis supprativa, which causes me to get clusters of boils, especially behind the knees where all the skin is constantly rubbeed up against skin due to the swelling.

If any of you watch A&E's tv show HEAVY, the first episode contestant Tom has lymphedema and had a rather large MLL on his leg. After he lost 100 lbs (he was above 600) they did surgery.

A friend knew the trainer and gave me the trainers phone number, and that trainer (David, great guy) put me on the phone with Tom. I talked with Tom about multiple things LE, he also stated that the surgery wasnt painful, but that it took a few months to recover, but hes got so much more mobility now. They even show a little bit of the surgery in the episode.

No one WANTS to get surgery, but MLL's are so bulky and so removed that at that point, wrapping it back into the body just doesnt seem like its going to feasibly happen. And if yours is like mine, it will get progressively worse and rob your mobility. Im 34 and walk with a cane, I'm about to have to go on SSI, cant wear anything other than sweats, and can barely walk, and I'm constantly in pain.

I'll try to talk to Tom soon and get him to post here more information about the surgery for MLL's.
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Re: MLL Please what can I do??????????

Postby KnockOut » Fri Apr 01, 2011 8:05 pm

I posted in the leg lymphedema forum my situation (check it out, I posted pics of my MLL also), I have an MLL on my thigh as well, and it's the only place I'm affected by LE. I would LOVE to be able to talk to Tom as well, so if you could please try to get him on here or even email me I would be forever grateful. I just want to hear firsthand from someone who has gone through the removal surgery successfully. I haven't been able to find anyone or even a surgeon who has firsthand experience with it.
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Re: MLL Please what can I do??????????

Postby emilshere » Fri Oct 07, 2011 3:56 am

I also have a large MLL on my left thigh and I am worried about my right thigh starting to swell also. I found a plastic surgeon who said he could remove it, but I am scared of the prognosis he said I am gaurunteed to have wound healing issues. This thing is causing me great mobility problems and if my right leg also swells I would be unable to walk for sure. I feel lke its a time bomb just waiting for my other leg to get the large MLL also and to become completely disabled.
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