lymphedma started in torso after complications from breast r

[cubbiegirl]

I am so glad to hear I am not crazy.... I had a tummy tuck and breast reduction couple years ago and had major complications from the surgery. Ended up having many, many surgerial debridments and spent months in the hospital. After almost a year of recovering, I then develpoed lymphedema, they say its from all the scar tissue and the complications I had. I am solid scar tissue in the breast and abdom and am bigger now then before I had the surgery. This is new where I live I guess because doctors kept saying lymph doesn't effect the torso only the arms and legs and I was just gaining weight. I can't tell you how many doctors I have been to and they all say we can't help you. I saw a doctor in Chicago i did have the test done with the scan to see where the blockage was (and just let me tell you that was very painful) but they could not detect because the medicine could not get past all the scar tissue.

I read through several post and I see some that talk about excerise. I would love to, however I can't. I used to be very active and small things like pulling weeds in my yard or cutting the grass even cleaning the house anything I do that causes pressure on my stomach or things that you have to bend over for causes my stomach to swell and the pressure pushes on my diphram and I can not breathe. Whenever my stomach is really swollen I can't breathe. It has woken me up in the middle of the night I will wake up gasping for air.

The pain that goes from the left side of my chest up to the neck and into the shoulder an neck gets really tough, I would never know if I was having a heart attack or if its just the lymph backing up.

After dealing with it the past couple years in the torso I am now beginning to have more and more in the arms and legs. The other day I could not even see my knees.

How do you get the doctors to believe you when they don't know enough about it? I can't wear compression garments because of the pressure and not being able to breathe. Luckly I found a physcial therapist who know about this but I can only see her 1 time a week and for an hour. Thats not enough!

What do you do when its a weekend or nighttime and you have a bad flair up? can't go to the emergency room they look at you like your stupid and say its anexity. That happen once I was out of town and the pressure in my chest was so increadible it felt like a heart attack. Doctors said oh your fine, test came back normal it must be anexity. They make you think, well am I no one seems to know what I am talking about they says no documentaion to support torso lymphedema. What do you do when there is no one to turn to, no one to help, how do you relieve the pressure? Do you guys get sometimes an overwelming feeling of being tired??

My legs now swell and get so tight feels like the could just bust open. Any help, imput, suggestions or doctors to see would be great!!

This is a great site, things make sence now at least.

[patoco]

Hey Cubbie

Super welcome to our family

Believe it or not I have actually heard of getting LE from breast reduction. There also is more and more info in the medical record about scar tissue and how it can disrupt the lymph system....even some incisions can do damage.

My concern for you is that you really need to get to a certified lymphedema therapist. They may be able to help with some kind of therapy. I'm also concerned about the possibility that the fluid may start filling your pleural cavities as well. I'm not surprised that you can wear compression garments either. Wow....when I tried that, it really backfired on me...closed down the ole breathing real fast.

In everything I have been through with LE, I think this ab LE with the massive pleural effusions is the most miserable experience I've had. I never realized how a simple thing like breathing (or not being able to) could have such a devastating effort of your life. I got to the point where I couldn't even put on my shoes, much less sox.

One thing you might do is to search through the medical literature, make copies of articles done only by doctors and take that to them. A number of our members have had good successs at doing that. At least if they don't listen to us (the patients) they generally will be willing to read something written by a so-called "peer." That kind of arrogance sucks, but that seems to be the way it is so often. Trust me, there is a ton of info about LE effecting the torso.

Let me know where you live too and we may be able to locate one of our LE doctors close enough for you to go to.

Do write back, I'll be checking in everyday waiting.

Pat

[cubbiegirl]

Thanks Pat,

just went to the doctor yesterday because I have been having incrediable stabbing and burning pains in my lower left ab, almost in the growing area. Doc did an ultrasound and said they found several enlarged nodes and said it should go away in couple weeks. Has this ever happen to you? If so what did you do with it? Its been so bad I almost went to ER but I have been down that road before and get no where.


And what do you do in regards to the nausa? Do you have the tightness in your chest going into the neck? If so what helps? HOw are we surpose to still have a life. Seems everything effects this.

I did see the doctor from Chicago who is working with dr Becker from Paris. Becker specializes in lymph replacement and the thorasic. They tried to run the dye through in the operating room but they had troubles with the machine and could not the dye through my arm. so that didn't work.

In reading your story Dr. becker may do you some real good, only problem is with the thorasic you would have to go to Paris for the surgery. They are the only onces I was told in the world who does this type of surgery.

I really apppreciate the help. It get so frustratingbecause no one understands.

Thanks again very much.

[patoco]

Good Morning Cubbie

I will definitely have to find out more about Dr. Becker. So far, what we have done is basically go the "band-aid" approach to my situation since we have to idea how to resolve it.

For the nausea, I finally had to break down and take nausea medicine. It does help quite a bit too.

Part of my problem also may well be involved with my gall bladder. Last year, they discovered a calificied tumor resting against the gall bladder. In fact, so close that it also caused partial calcification of the gall bladder. With the massive ascites in the abdomen, the doctors are terrified of operating.

Unfortunately, that doesn't do too much good and it can get really rough.

So far, I haven't had the tightness go into the throat or neck. My nodes have also been fairly quiet and only a couple times have had that enlargement and stabbing pains. I sure understand what you mean about ER rooms too. There have been times - last this week even when I came so close to going but didn't because I just couldn't stand the thought of dealing with those ER doctors.

The question about having a life is a good question. Because of all this, my quality of life has really plummeted and after being able to work all my life, I was even pushed into medical retirement.

But, you go on as best you can, keep truckin' and keep hoping that perhaps they will finally be able to figure out something that will actually help the condition instead of just treat the symptoms.

Pat