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August 3, 2013 at 5:08 am #21496
Hello everyone, I’m new to this site; in fact, I just found it tonight searching the web. Very good information so far. On July 17, I had my complete lymph node dissection. The dissection was performed on the right leg/groin laproscopically and the drain is on the front of the leg about 4 inches down from the groin. The results came back clean so I guess that means I’m currently Stage III NED.
I have a question about people’s experience with the drain. I have a Blake drain (probably doesn’t make a difference) and wondering how different people’s drain got to the “30 cc in 24 hours” mark. I’m draining 300+ cc every 24 hours pretty steadily for over two weeks and wondering if it just stops draining or very gradually slows down. The drain has been in longer than the surgeon anticipated and the next appointment is scheduled for two weeks from now. Anybody want to share their experience with when/how their draining stopped?
Thanks in advance.
DavidAugust 3, 2013 at 9:44 am #62051ThandsterParticipant
Ohhh how I remember the drains. The surgeon told me I’d have the drains for 2 weeks, but as soon as he left, his nurse said at least 3-4 weeks. I had lots of drain problems and ended up having the surgical drains for 6 weeks and a week after removal another one put in to deal with a seroma. Don’t get concerned because you’re still draining that much after 2 weeks and you’re probably better off to be mentally prepared to have it for at least 4 weeks. If it comes out sooner, great;)
Good luck and hopefully it stops soon.August 3, 2013 at 5:39 pm #62052
Thanks, thandster. I wondered how quickly it would stop draining because I noticed yesterday a quick drop in the amount of fluid collected. I wonder if the placement of the drain (there are three prongs on my Blake drain) determines how quickly it stops draining. My theory is that as my body heals, it plugs a port of the drain which reduces the amount that flows by a third, etc. I’m not sure if that’s accurate but was wondering if that was other people’s experience.August 4, 2013 at 1:56 am #62053AnnieoParticipant Hi David,
Sorry you are going through this stage of the journey. I had my groin dissection, left leg, on the 31st of January last. I don’t remember the specific measurements of the fluid collection. I do remember that, initially, collection was very slow and it suddenly changed to very large amounts. My surgeon was slow to divulge any information to me. At one point I had alot of excruciating pain that had my heart rate shoot up and brought me to tears – that is the part I will NEVER forget… Anyway, re. the drains, mine came out early (in my opinion), after 10 days. They had dislodged and were leaking a lot. They were taken out the following day, with little warning. There was no discomfort at all when they were being taken out.
I went home very anxious that the drains were suddenly gone. I wondered where all that excess fluid was going to go. I am a very visual person and to be honest I thought the fluid would continue to pour out the holes. To my great relief, that wasn’t the case! I guess the fluid found it’s own way of moving around, once the drains were removed. It wasn’t a problem. But definitely, I know, the drains were taken out earlier than one would expect. I also guessed that because the drains were leaking so much that I was at risk of infection which was good enough reason to remove them early.
I’m sure it will all work out for you. I guess everyone is different. I wish you the very best of luck with your recovery. It’s nice to hear of someone who has gone through the same as me. I felt so alone during my treatment. I was in too much denial to even think to ask questions of my surgeon, not to mention search through forums! Well done you for being so proactive.
AnneAugust 4, 2013 at 3:37 am #62054
Hi Anne, thanks for your response and your experience. I know we’re all different when it comes to healing from this type of surgery. I have been in contact with my surgeon and her team and there’s another concern that we just noticed today. The drains have marks on them that should remain below the skin (kind of a marker) and mine is now outside the skin. The sutures don’t seem to be doing their job, but I’m not sure how the drain has started working loose. I’ve been very careful. Promise. Anyway, I’m supposed to call and make an appointment (earlier than my next scheduled one) to have someone look at it to see what we should do. The output has definitely dropped and there are no real indications of unexpected swelling. We’ll have to see.
DavidAugust 4, 2013 at 1:44 pm #62055LinnyParticipant
If you did a search in this forum using the terms “groin drain” you will find other posts that may help you. Do the search from the forum index page. I think if you did it from this page, the results will only return what’s in this particular forum.
Have you lined up a lymphedema therapist for yourself? I hope that your surgeon let you know that you are now at risk for this condition. You may or may not experience permanent swelling as a result of this surgery but it’s good to take preventive measures.The lymphedema specialist is the best person to show you all this.August 4, 2013 at 7:32 pm #62056
Hi Linny, thanks for your reply. I had searched per your suggestion “groin drains” “30” “30 cc”, etc, but never found what I was looking for. I was curious to see how people’s output progressed from their initial output to the point where the drain was removed. Below is my output since the first full day at home. I have an appointment with a lymphedema therapist in a couple of weeks (thanks for asking) and my swelling has been pretty good. I treat the swelling with some ice and leg elevation.
7/19 530 cc, 7/20 445 cc, 7/21 435 cc, 7/22 540 cc, 7/23 420 cc, 7/24 395 cc, 7/25 505 cc, 7/26 330 cc, 7/27 360 cc, 7/28 400 cc, 7/29 385 cc, 7/30 280 cc, 7/31 375 cc, 8/01 395 cc, 8/02 285 cc, 8/03 165 cc
As you can see, in the last two days, I had >100 cc drops. Today’s output is higher than at this time yesterday, so I feel somewhat like a glacier (2 feet forward, one foot back) in my progress. I’m just wondering if others monitored their results similarly and saw similar drops. I’ve been in almost constant contact with my surgical team and they say “everyone’s different”. I’m just curious how different.August 4, 2013 at 9:11 pm #62057AnnieoParticipant
The marks on my drains came out too. I did tug the drains accidentally once or twice. The surgeon taped the tube up so there was no big loop threatening to catch on anything. When my marks did begin to show, the excruciating pain I was suffering thankfully vanished, meaning, the tube must have been resting on a nerve previously. The fluid started seeping out the holes when this happened (this is what I meant by my drains leaked)
I know it is easier said than done but, as I said in my earlier post, I became very anxious about the fluid. My second drain came out on a Friday morning and I was sent straight home. I was so scared that I would wake up on Saturday morning with my leg the size of a tree trunk! To my surprise and relief, it didn’t! I was so anxious about lymphedema (the fluid) having seen so many horrific pictures online, that I ended up back in hospital on the Saturday afternoon, in the cardiac intensive care unit with heart symptoms (I live in Ireland). I think, to this day, that my symptoms were all a result of anxiety, though I am due to see a cardiologist in a few weeks for a follow up. It took a long time for my anxiety to settle.
In hindsight (and I know it’s very hard for you not to be anxious at this time) I made things a lot worse by worrying so much. My leg never swelled to the size of a tree trunk. I do have lymphedema now. It’s not very visible but it is there and manageable with self massage and compression garments. You don’t need to worry about it just now. My advise to you,if you are very anxious about the fluid, is to get educated on lymphedema by a therapist as soon as you can, to ease your mind. Until then, you are probably worrying needlessly. I felt one hundred times better after speaking to a therapist when I got home. I was very unfortunate in that the hospital in which I was being treated had given me no information at all about the procedure or the follow up care. You need time to relax after your ordeal. My surgeon told me there was no need to worry about lymphedema, post surgery. I thought, at the time, that he was being rude and dismissive but he was right. You will probably feel a lot of new and unusual sensations in your leg for a long time after. I am six months after my surgery and I still get strange and uncomfortable symptoms all the time. I don’t like them because I don’t know what they are and probably because they remind me of my experience. (don’t worry, the symptoms I am talking about are no big deal, I just wish my leg felt normal again) . Your post has made me decide that I will post a question on this forum shortly re. post groin dissection and leg sensations. I never know if what I’m feeling is lymphedema or nerve pain. During the surgery the surgeon would have cut through a lot of nerves.
I know it’s easy for me to say to you now, but try not to obsess and get overly anxious about the drains and the fluid. That is what I did and it was an awful time. You are very vulnerable and scared at the moment I would imagine. I know I was. For me, it was mostly down to fear and lack of knowledge. If I can be of any further help, be sure to ask. Best wishes..
AnneAugust 4, 2013 at 11:03 pm #62058
Hi Anne, equal parts scared and frustrated. I’m so used to being active that I get anxious when I’m not. I don’t mind putting my feet up once in a while, but I don’t like to do it too much…especially in the middle of summer! The leg is doing ok, I have no dress code on those days I do go to work, and I’m feeling more and more normal the further from the surgery I get. I had truly hoped to see some sort of pattern in my recovery so I could make some plans with whatever is left of the summer, but that’s probably just as negative as getting too anxious.
I’m sorry to hear about all of your anxiety. It’s no fun anticipating every “worst case” scenario and trying to overcome them. As I’ve read some of the other posts, I’m relieved that I don’t have it as rough as some of the others who visit this site and my heart goes out to them. Hang in there and thanks for the correspondence.
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