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Topic: Can a drain that has been clamped for 3 days cause lymphedema?

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Feb 28, 2017 03:06AM

Penelopeh56 wrote:

My story - I had my bilateral mastectomy February 2016.  Following the surgery the drain in the left of my chest had a small amount of fluid immediately following surgery and did not drain any more - while the right drain was flowing well.  By day 3 my left shoulder, chest and back was very swollen and stiff and my neck painful on the left side.  Because the drain was supposed to be draining an assumption was made that it was not necessary and a decision was made to remove the drain.  The doctor who came to remove it immediately noticed that it was clamped.  (Note - this drain was checked 2-3 times a day and no-one else noticed it was clamped). A large amount of fluid squirted out once the drain was open however the new drain kept clogging up and eventually on the fourth day was removed.

I was sent home on day 5 and woke the next morning to the sound of sloshing in my left armpit - as I walked around.  I had to wait another day then began the bi-weekly trips into the hospital for manual drainage for a few weeks after that. They were still draining up to 150mls when the draining stopped.   I kept reporting to the nurses that the left side of my chest and shoulder felt 'full and heavy' but the nurses assured me it was 'just me'.  I am overweight but know my body well and it felt to me (and still does) that I am carrying a vest full of water with me all the time - a feeling I have never experienced before. 

By May the fluid was gathering in my stomach causing distension, shortness of breath, fatigue and discomfort.  Cellulitis developed in my chest and I was hospitalized.  I was hospitalized a second time due to shortness of breath.  This time they diagnosed faecal impaction -  15 lax sachets later changed their minds and said there was no impaction after all and never had been - so they sent me home !!  At this point my oxygen levels would drop from 98 to 93 after a short walk (100 yards). Quite frankly I was a mess until I discovered Manual Lymphatic Drainage (MLD) in October 2016.

 Fast forward - a year later my left shoulder and stomach are still blown up - I am 12 kilograms heavier and just seem to be getting bigger and bigger.   I cannot sleep lying down as the fluid moves into my head - blows up my face, closes my eyes and causes my speech to become slurred. I am having to have MLD sessions 2-3 times a week to keep functioning semi-normally.  I applied for Accident Compenstion to help with MLD costs (up to $300 a week)  but was declined because the hospital (surgeon and breast-care nurses) believe that what I am experiencing has nothing to do with drain being clamped.   I personally cannot see how it does not have everything to do with the clamping - it started a year ago on the left side of my body with the clamping and has not gone away.  I wonder if anyone else has heard of such a thing.

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Feb 28, 2017 07:27AM Binney4 wrote:

Penelope, yikes! What a journey you've been on! I'm so sorry.

It would be difficult (probably impossible) to know if the clogged drain was responsible for all this mess, though it sure seems likely. Lymphedema was a possibility just because of your surgery, but the extreme problems you're having with it certainly are not the usual course of everts. No one can yet predict who will develop lymphedema, or when, but there are some factors that may contribute to the risk, like overweight and a predisposition to swelling. Some of us have lymph systems that are already working at capacity so the trauma of cancer treatment pushes it over the edge. Others have more than adequate lymph systems to begin with and are not at risk of lymphedema no matter what they do. You and I are clearly in that first category.

I'm wondering if the lymphedema therapist you're seeing is well trained and competently supervised? There are all levels of therapists out there, and certainly you need one who is both qualified and experienced, preferably with strong connections to others s/he can consult with. Have you been taught to do Manual Lymphatic Drainage yourself? Do you have help at home to do your back as well? Have you been taught how to clear your abdomen using Manual Lymph Drainage? Do you have a facial Manual Lymph Drainage routine you can use at home? Has the possibility of a Flexitouch pump been discussed? Much of lymphedema management is possible as self-care, but it's a steep learning curve and it's not intuitive, so we have to be taught. Knowing how to do it yourself could cut down considerably on the need for frequent (and expensive!) therapy sessions.

You don't mention compression, so I'm also wondering if you've found adequate chest and abdominal compression garments? There are lots of options for these, and they come in a variety of strengths, too, so your specific needs could be met. Besides daytime compression garments, there are also night garments available, not only for arms but for chest, abdomen, head and face, even genitals if that is involved.

Sorry for all the questions, but I'm anxious for you to have the best possible help in order to take charge of you life again!

Gentle hugs,

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Feb 28, 2017 12:12PM - edited Feb 28, 2017 12:13PM by hugz4u

Penelope. Binney raises great questions. Your on now on your way to conquering this beast if you try some of the suggestions above.

Deep breathing from the belly should help move the fluid out. The diaphragm when expanded excites our lymph system and keeps it happier.

I'll repost on another thread the tai chi super easy breather exercise that was in a study that proves it's helpful. Takes no time at all.

Welcome by the way

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Feb 28, 2017 12:16PM Moderators wrote:

First, welcome Penelopeh56. Our other members here have indeed raised great questions. We hope that you are able to get some relief, and are very sorry to hear about what you are experiencing.


To send a Private Message to the Mods: community.breastcancer.org/mem...
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Mar 1, 2017 01:32AM Penelopeh56 wrote:

Hi Binney - thank you so much for your informative response.  I am seeing two of the top Lymphedema specialists in Christchurch.  One works for St Georges Cancer Centre and the other has a clinic where he trains people from all over the country in MLD.  They have been incredibly supportive. I have learned a lot of self care from them both and use the techniques daily but my back is difficult and I do not have anyone at home that can help.  I have not heard of a Flexitouch pump but have since googled it - I wonder if they are available in NZ. I haven't been taught about how to work the abdomen yet but am doing a course with them next weekend to learn.  I am looking forward to that.  I use a body suit that is firm during the day for compression but don't use anything at night although it makes sense to do so - it might stop the fluid pooling on whichever side I am leaning in my sleep. And yes genitals and upper thighs are involved now - it is so horrible. I need to get more active - it is just that when my stomach is full of fluid it makes breathing difficult - it's like a vicious circle.  I start in aqua-aerobics soon - just trying to get the nerve to appear in public with this body !!!

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Mar 1, 2017 01:37AM Penelopeh56 wrote:

@ Hugz4u - yes I have been deep belly breathing from the beginning - I am very interested in the Tai Chi - any form of movement has to be good for me.  I bought a vibration machine but not sure if it helps or not - it almost feels as though it is spreading the fluid further !!!  Thanks for the welcome :-)

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Mar 1, 2017 10:45AM - edited Mar 1, 2017 10:46AM by hugz4u

Penelope. Can you try gentle walking to see what happens. It might move fluid out. Try not to dangle your arms down either although I can't remember if you have le in arms. Ugh I feel for you. Have you looked at jovipak products they have garments for every body part. Expensive but effective.

A good mini tramp is said to move fluid for some.

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