new member with bad diagnosis

[Teddi]

I am a 62 year old woman. I was always very active until about ten years ago when I was diagnosed with endometrial cancer. I had surgery and they got it all and I've had no recurrence. But about three years ago I developed lymphedema of the legs. I have been wrapping the legs ever since and that part of it seems to be under control - but you never know. Since that time I gained an enormous amount ofweight even though I am not a big eater. I went on Atkins for a year in 2005 and had lost about 100 pounds. i noticed that I had developed a growth on my left inner thigh about the size of a softball. And it kept increasing in size. My doctor made an appt for me at the Univ of Iowa Hosp and Clinics. But shortly before I was to go, I became very ill and was rushed to the hospital with total renal failure, impaired liver function and septicemia. I was in hosp for 4 weeks and then in a nursing home for another. During that time I gained back all the weight I had lost and more. I was told it was lymphatic fluid moving into my hips, thighs and buttocks and there was no way to get rid of it. When I came home I was making great progress in walking and getting my muscles working again but the lump had become so large that it began to seriously impede any movement on my part. To make a long story short, I have been to the doctor and the lump is actually caused by the lymphedema and is part of it and is not surgically feasible - it is very very uncomfortable and my disappointment was profound ... until I got a call from the doctor today at which time he told me that not only would the lump eventually break down and infect, but that the lymphedema itself would probably kill me within a year. I am profoundly distressed as you can imagine but I believe that the internet is a great source of information and even support - so I went looking for a group and here I am.

[patoco]

Hi Teddie

Wanted to say a super welcome to our family and how glad I am that you joined.

I was born with hereditary lymphedema, but it remained stables for decades and involved only the legs.

Then in 1995 and 200 came diagnosis of two seperate types of lymphoma.

In 2002, the lymphedema moved into my arms and in this past year, my abdomen, chest and even back. It is the most horrible situation I've ever dealt with...far worse then the lymphoma itself.

My lungs fill with fluids and breathing is a monumental chore.

It was really strange because I always figured it would be the lymphoma that would eventually get me. Never in my wildest dreams did I ever thinnk the lymphedema would be this way or that it would pose a more serious danger to my life then the lymphoma.

Teddie, I can really really identify with how you must feel and what you are going through. It has been a devestating experience for me as well.

I've never had weight issues before and have been pretty much the same weight all my adult life. Now I have this belly that looks like I've had one too many jelly donuts. That too has been difficult.

Please, have your doctor contact Dr. Paula Stewart about your situation.:

Healthsouth Lakeshore Rehabilitation Hospital
Lakeshore Drive
Birmingham, AL

205-868-2098

205-868-2290

paula.stewart@healthsouth.com

Don't quit, hun....Dr. Stewart just may well be able to advise yor doc on how you can be helped.

She can advise both your doc and your lymphedema therapist. If you don't have a therapist, look on the left index under "Therapists" When you click on it, it will open up and there will be a section

"Schools of Therapy." Click on it and you can go direct to the lymphedema schools of therapy and locate a therapist in your area.

Again, I am so very glad you joine and look very much forward to getting to know you. If i can be of any help, just let me know.

Big hug to Ya

Pat

Also, I do self arm massage and abdominal massage relentously and it has helped stablize the swelling.

[Teddi]

Thank you so much for your post - I was beginning to feel like I was all alone out here.

I appreciate your link to the doctor in Al but my doctor has not even made a follow up appointment - he's pretty much said, go on your diet, exercise as much as you can and try not to pick up a germ but it's going to kill you anyway so there is nothing more I can do. I was feeling pretty awful until I found this site and saw that most people were not being handed terminat diagnoses. So I thought, 'why me?' Why should I be any different.

I will see if I can find a therapist not too far away but I do live at the end of the earth in rural Iowa and it's hard to find anything here. But just knowing that others are fighting and not giving up, helps tremendously.

I look forward to getting to know you too.

[joanne johnson]

Hib Teddi,
Welcome! It's hard to imagine that any doctor who is worth a damn would give you such dire diagnosis without referring you for additional help. Don't give up Teddi,you are still a young woman and help may be available to you.

Pat has great information to give to you. Listen to him as he is very knowledgable. You are not alone. We are a lymph family who really care about every member. Hang in there Teddi and keep us posted. Good luck to you!

[Teddi]

Have anyof you ever tried alternative medicine - I was thinking specifically of acupuncture????

[Carol Butler]

I feel the same as you. I am so sick of not knowing what is the matter with my leg.
I had a car wreck 15 years ago and in the last 7 or 8 years, i have had extreme swelling. I was diagnosed with Rocky Mountain Spotted Fever about 3 years ago. Everything went beserk then. I am so sick of MRI's, ultrasounds, etc. that all say nothing is wrong.--your circulation is perfect--yet, my leg is about 3 times as large as it should be and very painful.
It weeps fluid when it is very swelled.
I actually think i have a bonechip in it, but the MRI's show a healing or incompletely healed fracture. I don't know how it could be healing from a 15 year old wound. The doctor's say that that is inmaterial as far as anything that is wrong with my swelling, however, my daughter-in-law, who is a equine vet, thinks it is material as she sees something on her digital x-ray machine that she callls a "sequester" (sp).She is familar with lympedhema as she specializes in lameness in horses.
She thinks the lympedema is a result of the spot on her x-ray.


Why can the medical doctors not think anything about this. I have to constantly stay on antibiotic or steroids in order to keep my life half decent.
Please any suggestions from anyone would be greatly appreciated. Thanks,

Carol

[patoco]

Hey Carol

I'm with you, I have had soooooooooooo many tests, stabs, slices and dices, scans that I'm really burned out with them..

Sadly, Carol, most doctors seem to be trained to think only inside the box. The same doc who said that to me also made a point to say doctors don't like to think about conditions like lymphedema because it knocks them of their horse and bruises their ego.

Whatever the case it sure doesn't help us any. The way your doctor sounds, I would fire him.

I'm fascinated with what you said about that sequestor - I'll be doing some research on it to see where and how it might apply to some of us.

I do wish you could be on something other then steroids though, as that is well known to cause further edema.

Carol, you may want to focus on MLD for the ab and truncal areas. What you said concerns me as I and so many others have severe LE of the abdomen because the damage to the lymphatics just keeps progressing. Also, it can moved into the thoracic cavity, so be sure to advise your doctor if you start having breathing problems of any kind.

I've had as much as 2/3 of my total lung volume filled with fluid before. It is horrible - probably the most difficult complication of lymphedema I've had to deal with......seems even worse then cellulitis.

I am glad you are one preventative antibiotics - I am as well.

How are the weeping spots being treated?

Look forward to hearing back from you!

My very best to you as well

Pat

[Atlantamary]

Hi!

This is my first post to the board. I feel compelled to chime in here because I believe I have (had) the same type of lump behind my knee that you have. I've had lymphedema in both legs for about 7 years. At that time, both of my legs were fairly large, and I was developing a large lump behind my left knee. I went to my doctor who didn't have a clue what I had. He refered my to Emory University where a doctor immediately diagnoised me with lymphedema and the lump behind my knee as a "pseudo tumor". (Basically a pocket of skin filled with lymph fluid). Unfortunately things went downhill from there. I asked the doctor what I should do to treat it and he said....lose weight and that I could have a "simple" plastic surgery procedure to remove the tumor. No mention of going to an out-patient lymphedema clinic, no mention of compression wrapping, garments, etc. Bottom line, I didn't get help when I should have--partly my fault for having my head in the sand-- and partly the fault of the medical community for giving me bad (or incomplete info).

By the time I finally got help (this February), my legs were huge and the tumor behind my left knee was the size of a basketball. Thru dumb luck I ended up at the Floyd Medical Center's rehab facility in Rome, GA where they happened to have 4 trained lymphedema theraptists on staff (all had worked in their out patient treatment center at one time or another). They probably saved my life. I stayed in Rome for 5 weeks and had my legs wrapped twice a day. By the time I left the rehab facility, I had lost 134 pounds in my legs and the tumor in my left leg had completely deflated. (It mostly deflated after just a few days of compression wrapping) Now, I had a bunch of extra skin hanging down from where the tumor had been been and it still weighed a ton. Since then, I've been going to wonderful outpatient lymphedema treatment at the Gwinnett Medicine and Rehab center (suburb of Atlanta, GA.) I've lost an additional 50 pounds in my legs and the deflated tumor has mostly reabsorbed into my body. Now, I could probably have a plastic surgery procedure to get rid of what little remains, but I'll wait about a year before making that decision.

I'm writing this long note to you to say that there is hope, but you have to fight to get the right kind of help. I had doctors tell me that I was too far gone for anything to be done about my legs, that I was about to lose both legs, and that maybe I could get into some kind of experimental treatment at a university where they could take my legs down to bone and start fresh. None of this wonderful medical advice was correct (thank God).

Keep fighting!!

[patoco]

Hi Mary

Glad to see another person from the Atlanta area posting

Frankly, I am not surprised at what happened at Emory. The only time there was a doctor that really knew LE was many years ago and he had to retire due to cancer. he was actually an infectious disease doctor and I originally went to him for that. he was simply a great compassionate doctor and I still miss him many years after he retired.

As for doctor's prognostications.... I heard that one too. Even as recently as 2006 when I was in Gwiinnett for almost two months, when I went into the hospital they were counting the time in days.....hmmmmm....sorry to disappoint you doc

LOL....and could I give some stories about Emory Eastside......just don't go there.

Gwinnett has become my home away from home....I was teasing them that they should name at least one floor of the new tower after me since I probably paid for it

Very thankful that you finally got some help too. It must have been prettty amazing to loose that muh weight from your treatment. It's a good demonstrartion of the value of proper LE treatment and management.

BTW, if you need a good infection doctor, do check out Elliott Raizes - Gwinnett Infectious Diseases...this doc and all his partners studied under the other doctor at Emory.

Keep up the good fight and hope everything goes super for you!

Pat (now in Monroe)