New Member w/ Massive Localized Lymphedema and questions...

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New Member w/ Massive Localized Lymphedema and questions...

Postby solmssen » Wed Feb 17, 2010 6:01 am

Hello all - thanks to the admins for this valuable resource. I hope I can trouble this lymphedema hive mind with a question or two.

Briefly - I am 43, and morbidly obese. I was over 500lbs as of a year ago but have lost about 100lbs through diet and exercise and am 400 or so now. I have what Google tells me is called a "Massive Localized Lymphedema" on my left thigh. It more than doubles the girth of my thigh and weighs at least 30lbs, like having a big bag of wet sand strapped to the inside of my leg.

It became really noticeable about 2 years ago, and I've tried conventional approaches to lymphedema - compression bandages, massage for drainage, etc. with temporary and minor relief at best. My internist referred me to Dr. Charles Chandler of UCLA Hospital to consider surgical removal of the lobule, and he and his colleague Dr. Charles Tseng (a plastic surgeon by specialty) both feel that surgery is warranted and likely to have good results. The physical therapist I work with, Mary Rosenberg, has expressed reservations regarding the amount of anatomy beyond the skin and fat I would be losing, and whether I would be setting myself up for a worse recurrence given the loss of lymph drainage from the lower leg into the body.

I was hoping to tap into your experience in these matters, as neither Dr. Chandler or Dr. Tseng have done this specific thing before. They are undoubtedly competent and certainly confident, but my confidence would be dramatically improved if I had a chance to talk to someone who had actually performed or been through such a surgery before anyone attempts it on me. The people here at UCLA in the Bariatrics and General Surgery depts can't seem to offer me that.

I'd love to hear any comments you might have, and whether any of you have had similar surgeries and what the outcomes have been. If you have any wisdom here, I would be genuinely grateful for anything you might be able to offer - even if it's just the name of someone here in Los Angeles or elsewhere with more direct experience of the surgical resolution of MLL.

Best regards and many thanks for reading this far,

---- Andrew
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Re: New Member w/ Massive Localized Lymphedema and questions...

Postby patoco » Wed Feb 17, 2010 9:57 am

Hi Andrew

Super welcome to our family here :!: :!:

MLL is one of the fastest growing manifestations of lymphedema that we see over all. The question of surgerical removal is almost always based up the individual circumstance of the patient too.

There are good reports of therapists who re actually able to reduce and/or almost get rid of the MLL totally. This does however, take substantial time and effort. being a person who is not a fan of using surgical reduction for lymphedema, my personal preference would be a solid effort with a good LE therapist.

We have a complete rundown on the studies on our page:

Massive Localized Lymphedema

http://www.lymphedemapeople.com/wiki/do ... lymphedema

From these studies, you can see that even with surgical removal, these areas often return. Also, from my own personal experience of having three of the Charles/Thompson's Procedures in the very early 70's, I can tell you that you will also experience nerve damage and if it does return, there may be a generalized change of the tissues with a great deal of hardness setting in. You may experience an increase in having significant inflammation of the area. Other complications that have been reported included continuous draining over several weeks and there is the very real possibility of skin death in the surrounding areas. I had this as well and have to have three significant skin grafts as a result.

So there are some big minuses about having it removed.

Generally, Andrew, I feel these surgeries should be reserved for patients for whom the MLL presents a very real danger of continous infections, if it begins to effect more of the leg (makes the over LE worse, or if there is any question as to whether or not it is a malignancy versus MLL. If the spot becomes so large that it overhangs large sections of the thigh, it could also present hygiene problems which could lead to infection and or skin problems such as rashes, irritations and leakage.

Tough decision my friend and not on to take lightly.

In conclusion, I would say try the MLD first - for all its worth.

Keep the surgery as a second choice if truely needed.

My best to you

Pat
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Re: New Member w/ Massive Localized Lymphedema and questions...

Postby solmssen » Thu Feb 18, 2010 5:14 am

Pat, I'm very grateful for your detailed reply and the benefit of your experience.

The many articles you've collected on your MLL reference page - is there a fulltext or PDF source that's not $35 a pop? Am I just missing something?

You mention infection and size as criteria for evaluating the necessity of surgery. Here's an image that may give some context on the latter.
Image
It really is the whole length of my thigh now,and when seated it hangs almost to the floor. When standing it hangs to about midway down my calf. As far as infection, that hasn't been an issue yet, but I've recently had a superficial thrombosis that was really painful, and every small scrape and nick can leak for days.

I'm incredibly frustrated with the whole bandaging process, which is painful, renders me largely immobile and unable to work and which is almost completely ineffective - the weight of the lobule simply pushes all the wraps and foam down my leg within a few hours as they loosen up and then I'm back where I started. There doesn't seem to be a way for me to maintain the compression for any length of time so I can build on what was done - it always 2 steps forward, 2 steps back - and the thrombosis I mention above was caused by a poorly cushioned bandage in a matter of an hour or two.

I just don't know what to do. My insurance company won't pay for more lymphedema therapy (which they classify as physical therapy and limit to 60 consecutive days per year), and they will pay for surgery it seems. The lump is keeping me from doing real exercise and advancing my weight loss program, and I can feel myself sliding into this "poor me" abyss of apathy, depression and inaction. I'm deeply skeptical of the surgeon's real ability to fix the problem, but everything else has already proved so ineffective. I'm at a loss. I feel like I'm proceeding down the surgery front almost by default, but I just don't know what else to do...

Thanks for listening to this nonsense, Pat - I really appreciate it.
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Re: New Member w/ Massive Localized Lymphedema and questions...

Postby patoco » Thu Feb 18, 2010 9:15 am

Hey Andrew

Listen now, don't think of your sharing as nonsense. That's what we're here for, bro. If we all carry a little of each others burdens, then the load becomes lighter. :wink:

Just be encouraged and don't let those emotions overtake you. I'm learning to look at them much like a rain storm. They blow in one day, drenching and soaking you and then they are gone.

After my health finally just collapsed in 2006, I went through some real serious struggles. I was really devastated and felt like suddenly my life had become so useless and meaningless. Trust me, with LE, no matter how long we've had it, you go through some intense emotional ups and downs.

I appreciate you posting the picture and it really helps me in sharing any suggestions. This is probably the largest MLL I've seen.

After sharing what you did in your new post and the problems it is causing you in bandaging (that must really be a nightmare), weight loss, mobility, blood clot risks etc., I'm thinking surgery may be the best option for you. Generally, that decision is based on it's over all effect on your LE and health in general and I think it is severe enough that you need to get rid of it.

Do you live near a teaching hospital (medical school)? If you can get to one,see if they'll take a look. Generally the surgeons there are better qualified too. you concern over the surgeon's skill is about the only negative I can see at this point.

See what info you can dig up on the doc - things like any complaints, malpractice problems - anything like that from which you can at least gain some insight to their skills.

I've asked one therapist I know, Tom - who has done wonders for LE patients and ones with MLL to see what he thinks. Hopefully, he'll be jumping in soon.

Oh, BTW...just about every study that is out wants $$ for the full PDF file. Sometimes, I can get one from somewhere, but it is getting harder and harder to do.

Good to hear from you again - hang in there :!: :!: :!:

My very best to you.

Pat
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Re: New Member w/ Massive Localized Lymphedema and questions...

Postby Atlantamary » Thu Feb 18, 2010 4:46 pm

Hi,

Just thought I'd chime in and give you another perspective. I too had a MLL on a leg-- that I believe was actually larger than the one you have. It hindered me from doing just about everything because of its size and location (right behind a knee). I also had severe lymphedema in both legs. About a year ago I started a 5 week course of in patient treatment at a rehab center where my legs were wrapped twice a day (and I mostly stayed in bed). Once they started wrapping my MLL, it deflated in just 5-6 days==leaving a massive amount of heavy skin behind. They used conventional short compression bandages but added a medium stretch bandage to hold the tumor in place before they put on the short stretch bandages. After my stint in rehab, I started going to out patient therapy once a day. My therapist continuing using my "magic" medium stretch bandage on the tumor as well as Compress II and other gizmos to try and reduce the amount of loose skin I had. Now, the tumor has mostly reaborbed into my body.

Now, everyone's legs are different and what worked on me might not work on you. But, my advice is to first explore other treatment options (and perhaps a different therapist) before electing to have surgery on your leg.
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Re: New Member w/ Massive Localized Lymphedema and questions...

Postby patoco » Fri Feb 19, 2010 9:49 am

Hey Mary

Super welcome to our family here and a special Thank You for your input.

I was so hoping someone who had actually experienced this would share. It was encouraging too, to hear of your success in resolving the MLL without surgery. I've seen some incredible results on others, but just had never seen one this large.

Andrew, do you think your insurance company would approve this type of medical service as inpatient? See if your doctor would be willing to do all the appeals or whatever else it requires.

Thanks again, Mary :wink:

Pat
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Re: New Member w/ Massive Localized Lymphedema and questions...

Postby Atlantamary » Fri Feb 19, 2010 12:05 pm

Thanks Pat!!

I keep meaning to post my story on the website..I'm going to do it now
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Re: New Member w/ Massive Localized Lymphedema and questions...

Postby grace » Sat Feb 27, 2010 4:54 am

Andrew, I feel for you, I'm about your size now, after losing 22 pounds.

That's what my stomach used to look like, except my skin had gotten dark and full of sores. I developed a bubble sort of blister--I used to say my body installed its own drain--and it would drip for days. :( It's actually still there but doesn't drip anymore. I'm hoping it'll go away at some point.
My doctor didn't help me with any of that at all, she just told me to lose weight, "other people do it, so can you." I wish I'd gone to a different doctor, instead of wasting a couple of years of my life trying to figure it out on my own.

I'd also developed gout, I think it was the main cause of inflammation in my case, so I'd changed my diet to eat a LOT less meat, no sausage, hot dogs, etc., and more fruits and vegetables. You're probably already doing that since you're dieting. I also took dandelion root capsules to reduce fluid retention (It doesn't deplete your potassium like prescription diuretics), but don't try that without consulting your doctors first, I was "winging it" on my own since my doc wasn't helping me and they may not approve of any diuretic.

My lymphedema is gone now, there's hope for you. The skin is still there (on me) but it's softened and normal-feeling. I just want you to know you can overcome this.
Thank goodness you have better and more knowledgeable doctors than I did. I wish you good luck in your continued weight loss.

I'm having good success using a Low Glycemic-Index diet, because I'm not as hungry as on other diets I've tried. I've learned that if you cut back your calories too much, your body will go into starvation mode (it thinks it's starving) and hold onto all fat reserves, stalling your weight loss. I wonder if that's what's happening with you.

I wonder how many calories you're eating, maybe it hasn't been enough. As a woman who is more than 100 pounds overweight, I'm supposed to eat at least 1500 a day so my metabolism doesn't slow down, and men get more than women. So you should be eating at least 1600-1700 calories, in the proper balance, to maintain weight loss. Some doctors don't understand that too few calories is as bad as too many. And getting enough fiber and protein with small amounts of low glycemic index carbohydrates (in 5 or 6 small meals per day) is the real key to weight loss. The idea is to keep the blood sugar even, no spikes that will provoke a high insulin response because thats what increases the appetite.

Well sorry I blabbed for so long. If you need help figuring out any weight loss stuff, feel free to PM me. I'll share what I know on Low GI, you don't have to pay for Nutrisystem if you can't afford it, you can do it for free on your own, using stuff from the grocery store. It's a real easy diet because you're not starving.

If it's safe to wait, you might try and hold off on surgery until you lose more weight, to see if you get better drainage before causing surgical scar tissue. (But of course listen to your doctors on that, I'm just another "patient" not an expert of any kind.)

Best wishes for quick healing.

Grace
Last edited by grace on Sat Feb 27, 2010 3:07 pm, edited 1 time in total.
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Re: New Member w/ Massive Localized Lymphedema and questions...

Postby patoco » Sat Feb 27, 2010 9:18 am

Hi Andrew

Before you think about going on ANY diet anyone recommends, it is absolutely imperative you run this by your doctor.
A special diet may be more harmful for you then good. If you are morbidly obese, then yes, it is very very important that you lose weight. This will definitley improve your lymphedema.

I disagree with Grace on getting rid of the MLL. You can begin to loose weight and at the same time work with a LE therapist to see if the MLL can be massaged away or go the surgical option.

Again, there simply is no scientific evidence to support the use of dandelion root for the treatment of LE. What studies that are out there indicate that it may be help as an anti-oxidant for atherosclerosis and may decrease the atherogenic index.

Here is a page on the MedLine Plus website with info:

http://www.nlm.nih.gov/medlineplus/drug ... elion.html

As you can see from this page, it's rated as somewhat mediocre in most of the claims pleople give it. The rating of C indicates unclear scientific evidence for this use.

Pat
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Re: New Member w/ Massive Localized Lymphedema and questions...

Postby grace » Sat Feb 27, 2010 1:49 pm

Well, as I said, I'm no doctor, always clear everything with your doctors first. In my case I had no help from my doctor. I didn't know how to get to a specialist on my own or what kind to see. I'd come here for help but didn't know what to ask, I guess. I didn't feel like one of you, since my lymphedema was weight-related, and felt as if those who are not obese might resent me for "causing" it. I didn't know what the "tumor" was called or how to ask for guidance; I figured I was the oddball-out, if that makes sense.

I was desperate and alone. The weight loss, by the way, is in the last 6 weeks, after the loss of most of the fluid. I realize that most people with "regular" lymphedema are probably not on diruetics, but I had fluid retention all over my body in addition to the lymphedema, as do most people my size. I had trouble breathing and moving around. it was not "only" localized, that was just the worst of it. I was miserable and didn't know what else to do. My doctor had given me diuretics before, but they hadn't worked as well *in my case.*

The diets my doctors have put me on through the years never worked, because they never addressed the hunger. I've been on fen/phen, then phentermine alone, and meridia, over the counter stuff, etc., and the low glycemic diet is the first time in all these years I haven't been starving the entire time. I think Atkins is what helped to cause the gout. I was simply not getting enough fruits and vegetables and way too much meat, in a desperate attempt to lose weight.

I don't mean to encourage Andrew to do things on his own as I had to do. I'm only suggesting things he could discuss with his doctors. I don't mean to harm in any way, only to offer another viewpoint from someone who understands his situation first-hand. I don't know my top weight as my scale didn't go that high, but today I am 401. I suspect that before the fluid loss I was over 450, but I was unable to get weighed.
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Re: New Member w/ Massive Localized Lymphedema and questions...

Postby solmssen » Mon Mar 01, 2010 1:18 am

Thanks for all the input and support everyone - I really appreciate it.

I'm particularly interested in the inpatient rehab option that atlantamary described. I'm more than willing to commit time to something like this, but nobody around here seems to even be able to suggest a place to do it. Bandaging does seem to accomplish something, it's just so fleeting. If there was some way to keep it going, that would be great. Once the lump is deflated, like Mary said, it seems like I could use a more substantial garment that wouldn't be so affected by the geometry and gravity of the situation.

Does anyone here have experience with good inpatient centers for LE treatment? I'm in Los Angeles - but willing to travel. I have family in San Francisco and DC if there are

Grace - thanks for your story. I am very careful with diet - years of up and down has given me a fair amount of experience with what works and doesn't work in that regard. Lean meats, fresh fruit and veg, stay away from sugar and white flour, complex carbs sparingly. It's easy to say and oh so hard to do. I've found the book "The End of Overeating" by David Kessler very useful in that it gives a really clear description of the way modern processed foods use fat, salt and sugar to trigger and reinforce the addictive pathways in the brain.

Thanks again everybody...
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Re: New Member w/ Massive Localized Lymphedema and questions...

Postby patoco » Mon Mar 01, 2010 10:46 am

Hi Grace and Andrew

Grace, I do appreciate you sharing your experience and I hope I didn't sound rough. Very much appreciated you suggesting that Andrew check things out with his doc first. I admire your determination to find something that would help you and sadly all too often the doctors really aren't helpful or actually even know what to do. I've always kinda wondered if Atkins would or could contribute to gout too. It just seems to me that veggies and fruits are so critical to our body's health. I'm a real fruit o'holic myself. LOL...can't even begin to count just how much I eat.....good stuff :)

Whatever you do too, please don't ever think anyone here resents you having LE. We here fell that it doesn't matter how you "got" lymphedema - if you have it, you are one of the family - period :wink: and are welcomed with open arms.... and stop torturing yourself with those feelings about it being weight related. When those thoughts come around, just tell yourself those feelings are just plain nonsense and you won't listen to them :!: :!: :!:

Andrew, I do have experience with an inpatient LE center. I was in one in Birmingham Alabama in 2006. It is Healthsouth Lakeshore Rehabilitation Hospital and the doctor is Dr. Paula Stewart. The program there includes decongestive therapy, compression wrapping, lots of exercise and sometimes water therapy as well. LOL...the only bad part was the food - hospital food just doesn't do it - yuk! Dr, Stewart is also quite well known and respect for her knowledge and treatment of LE.

There is another inpatient center in Chattanooga, TN. The Siskin Rehab hospital http://www.siskinrehab.org/subpage.php?pageId=534 and the therapist there is John Jordi. This page gives a rundown on what to expect http://www.siskinrehab.org/subpage.php?pageId=534. He also comes highly recommended by his patients though some say he really works you butt off. Plus, I know both Dr. Stewart and John and they really are great people and enjoyable to be around.

For many people, the inpatient way seems to be the key and as usual the biggest challenge would probably be getting your insurance to pay for it. Your doctor would most likely have to file appeals on your behalf. My insurance rejected mine request at first, but between my doctors here in Atlanta and Dr. Stewart, they finally gave in.

I think you may have discovered a real truth in how our modern foods and the way they are processed actually makes us addicts Andrew. That's really a very important reason you need to quit blaming yourself Grace. I have had an interesting experience in this just recently.

I pretty much got away from all soft drinks. I think I may have had a cola per year, if that. Well, recently I moved in with my daugther and son-in-law. Shawn, my son-in-law is a real cola drinker....so I decided to have one at dinner once. I can't believe it, now I find that there are times when I actually have a craving for a cola. Wow....just having a cola started a craving?????? geezz.....what does that say for the rest of what we eat and what it must do to us.

Pat
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