Trying to find help for Lymphedema

Cajun68

I believe I have Secondary Lymphedema resulting from a breast reduction I had 2/17 . I have not been able to find a doctor to properly diagnose me or treat my condition. I'm desperate to find someone to help me, as I do not want to live the rest of my life with this condition. I want to believe there is someone out there, a doctor who is interested in looking at my case much deeper and help me find answers as well as a miracle remedy that will allow me to get back to a life I once had. The heading of my letter is so that we can skip past this common cause of Lymphedema. My breast, prior to surgery were a size JJ. I was actively working a full time job as well as exercising. With my large breast my physical ability to take my very active life style to the next level was becoming difficult. So after years of saying NO NO NO, I said YES to a breast reduction. I was so excited to get this done and be able to run and exercise like never before. However this didn't happen; instead, 14 days post-surgery I developed redness, small blister under my right breast. My PS prescribed antibiotics, and steroids, and more antibiotics and more antibiotics. We ran test, I sought second opinions because the right breast was swollen and not reducing in size, there was and still is pain. Second opinion doctors would tell me that nothing is wrong, give it time, or that my PS needs to fix this. My PS was at a loss, never seen this before and didn't know how to treat me, he had no answers. I asked for test after test after test, I researched on the internet and I have been in physical therapy for over 14 months now. I'm swelling has increased and it's moved to my abdomen. They say Lymphedema; I say HOW? How could this have happened? I'm depressed, I'm out of a job, and I'm mentally exhausted. So I'm reaching far and I'm hoping that there is someone out there. Maybe you, just maybe there is one person, doctor, specialist, who is still in this practice for the challenge of the most difficult diagnosis, to experience the reward of the outcome, the remedy, but most of all the happiness that they were able to put back in someone's life, my life.

Sincerely graciously,

Moderators

Dear Cajun68,

We are very sorry for what you are going through. Your post surgical course sounds very frustrating and painful. Here is a link to information on our main site about Lymphedema. If in fact you are dealing with lymphedema a physical therapist who is also certified to treat lymphedema would be a good option for you for further management.We hope you will hear from others. As a reminder this community is geared towards the needs of those with breast cancer and so while you may be dealing with lymphedema it does not sound as though it is associated with cancer related treatment and therefore the experiences of our members will be different than your own. The Mods

Binney4

Cajun, I'm so sorry--what a maddening journey you've been on, and all by yourself too! ANY trauma to the chest can result in lymphedema, and that of course includes any surgery. Breast/chest lymphedema can result from any chest surgery, from auto accidents where someone hits the steering wheel or dashboard--and it happens to football players because of the constant impact to their chests. That your PS has never seen it is very likely not because it's never happened to any of his patients before, but because with other women it appeared long enough after the surgery that no one went back to him with it. Or if they did, he didn't recognize it.

Unfortunately your experience of not being able to get good help is all too common with lymphedema. Good for you for continuing to pursue the answers you need!

You mention that you've been in physical therapy for 14 months. Is this with a qualified lymphedema therapist? And if so, what has she done to address the swelling? Have she done a course of Manual Lymph Drainage (and taught you to do it yourself)? Have you been fitted for a compression bra or cami? Has she given you exercises to encourage lymph flow, and are you able to do them regularly?

Sadly, there is no quick cure for lymphedema, but there are ways to reduce the swelling and keep it that way, and to resume control of your life. Hang in there! There's hope ahead!

Here's more information about chest/breast lymphedema (it's also called truncal lymphedema):

http://www.stepup-speakout.org/breast_chest_trunck...

At that stepup-speakout site you'll also find information about finding a well-qualified lymphedema therapist near you, and a page of Essential Information for Healthcare Providers (written by a doctor who developed lymphedema herself!) that you can copy and take to your PCP, PS, or other doctors on your team.

Gentle hugs,
Binney

gb2115

If you think you have lymphedema you will need to find a certified lymphedema therapist--either a PT or OT. They are the best to assess since they see it every day.

I don't know anything about lymphedema from breast reduction--those of us on here with lymphedema have it from lymph nodes being removed during our cancer surgery. But still a certified therapist is probably your best chance at help.

hugz4u

Cajun. As Binney said you can get lymphedema from any kind of trauma to your body. The reason is when lymph nodes which are in your breast and elsewhere throughout your body get disturbed or damaged it impairs their ability to function properly. Because they can't do their job efficiently anymore you get build up of stagnant lymph fluid that's cant be carried out of the body as when good lymph nodes do this job. This causes swelling, pain and fibrosis. Nasty yup

Doctors only spend under a hour learning about lymph system in sch so most are clueless even though it's the second biggest circuitory system in us.

The only way around all this is to get educated and advocate for ourselves which you are doing. Bravo!

Yes docs are in the dark ages still with Lymphedema but some are learning. Some Vascular and dermatologist specialise in it.

Don't give up or give in as this is a life long condition but you can make it doable. If you just leave it then it usually gets worse down the road.