Not-so-good surprises in DIEP surgery and recovery?
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I am also at this point (2 weeks and 3 days out) extremely happy with my DIEP.
Things they didn't tell me (someone else that had already had it done told me):
I would wake up with IV's in my feet instead of my arm(s), as with a bilateral they need to tuck your arms underneath you so they can work on you.
That I was going to get heparin shots in my leg every 8 hours for anti-clotting (I still look like I went through WW 3 because of the bruising).
Since I went to a teaching hospital, when I signed that it was okay for them to bring in students I did not know that they would bring in approximately 5 to 10 of them and not just one or 2. It was sort of intimidating.
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We live on a dirt road and I was quite unprepared for how my body felt when my husband drove me home on day 5. Sure, he drove very very slowly, but that was the longest mile ever.
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Anna, I can relate! Not a dirt road, but Michigan roads in springtime before construction season and after a cold winter are FULL of potholes and bumps. Ouch! Bring lots of pillows (or in my case a huge down coat!) for the ride home, maybe even one to sit on? Seriously you just want to be all padded in on the ride home.
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Blondie,
I didn't have IV's in my legs or feet but you did bring up something I had totally forgotten.
When I came out of anesthesia my arms were SORE. Beyond sore, they downright HURT! It was because of the position they had me in for hours of surgery. It was gone by the next day.
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Boy, do I remember that! When I asked about it they told me my arms had lain stretched above my head throughout the surgery.
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i had a double IV in my jugular and on in each hand
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17 days later my elbows are both still sore, I thought the non-mx side was because of the blood pressure cuff being too close to my elbow, but since both elbows are still sore, perhaps it was positioning - never thought of that! Hmmm....
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Speaking of IV's.....I had one in my arm, 2 in one hand one in the other and a few piggybacked on those as well.
Does anyone know why all the IVs??
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I only had on IV in my hand that I was aware of. They took BP on my leg put they took the cuff off everytime. I had a 5.5 hr drive home so stayed in NYC for 3 more days until I saw my PS post op and he removed the drains and checked me out. I had to get out of the car every 45 minutes to avoid getting a pulmonary embolism. 5.5 hour drive took 7 hours. Boy was I glad to get home. My surgeon said it was critical not to sit still for more than hour when I got home so I made myself get up and walk around. Also he didn't want me on the tread mill for 8 weeks. Apparently a few women have fallen while on the treadmill and damaged the flaps as well has used their arms too much and developed lymphodema.
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Yes I can see where I would feel unsteady on a treadmill (day 18 post op).... my ps told me this week that a treadmill was okay but she said absolutely NO gym equipment that creates a cross-over motion of the abdominal area that could create a seroma now that my drains are out (think elliptical machine, stair-climber, Nordic track...anything where your arms are going the opposite direction of your legs). Just for the next couple of weeks.
Did anyone else find that they day or two after their drains came out they were extra tender and sore? I'm feeling better today, but I got my drains out Wed AM and I was so excited, but then yesterday I had such a rough day... today feels somewhat better so far.
PS gave me the approval to sleep on the mx side if it is comfortable, I have given up my wedge pillow now (day 17 post-op) and sleep on the non-mx side at first, then on my back a lot with knees on a body pillow (have never been a "back-sleeper") then sometimes late at night I try the mx side for an hour or so. I sleep about 6-7 hours a night (normal for me is 8-9), I wake up 4-5 times on a good night (normal is never!), and get up to pee and stretch at least two or three times in the night.
I wasn't sure what to expect in the way of sleeping, the first couple weeks were no problem when I was on all the Valium and Tramadol, but now that I'm weaned to Aleve I definitely wake up a lot more. But better and better each day. Anyone have any secrets to good sleep? Lots of pilllows is what I do. I'm starting to feel quite bad for DH, who has been on the couch since day 1. I tell him he can come back to bed, and he did one night, but I worried about him bumping my drains all night, and now I just wake up so much that I think he would wake me up, and I would wake him up... I don't know... what are others doing?
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I was in a recliner for a good 4 weeks. When I made my way to the bed I did have to use a wedge but it just took time to finally get well rested sleep.
I'm sorry I dont think there is a "secret" you been through major surgery and it just takes time
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I also stayed in the recliner for a month or so after my DIEP, but also my ps would not allow side sleeping for 6 weeks (just as a precaution to keep the newly connected blood vessels from kinking or otherwise being stressed). Since I'm a side sleeper, the recliner helped keep me from rolling over on my side.
I use melatonin for sleep - it's been a lifesaver for me. But it doesn't work for everyone, and it can give you weird dreams for the first week or so that you use it. But as Nora says, it just takes time for your body to get back to normal. Good luck!
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I was not allowed to sleep on my side for 4 weeks (or was it 6?). Protecting the transplanted blood supply.
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I cant remember how long it was for me. Like what Nat said I stayed in the recliner for as long as I did mainly so I wouldnt roll to my side in the middle of the night. I hate sleeping on my back
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I am now 5 months out from my DIEP. My breasts, abdomen and back of my arm where they took my nodes are all still numb. It doesn't hurt but it's just very annoying. I understand total feeling to this area will never be back to the entire area but does it get any better after 5 months or is this as good as it gets?
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You know it's funny but my cancer side(left) is more numb than my non cancer side which I also had removed and reconstructed with DIEP. I'm 4 months out and I have feeling in the skin on right side and even into the tissue on that side but the left side ( 7 nodes out) is numb halfway to my elbow on the back side and partway up to my shoulder on my back. It doesn't bother me at all and I hardly notice it. I do have full range of motion on both sides. I haven't had stage 2 yet so I don't know what may change if anything but I think I will need lidocaine on my right side for nipple reconstruction but not on my left.
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Question... If I have DIEP or SGAP,l but no more nodes removed, is there still numbness in the arm, or is that just because of the node removal? ( I had 2 nodes removed in December with lumpectomy and am not numb at all)
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I am quite sure the numbness for me is the fact that I had 16 nodes removed. I would think with 2 it wouln't be like that but I am quite sure someone will correct me if I am wrong.
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I felt very dizzy first couple days after my DIEP...
I had a very flat tummy after DIEP. I was very pleased as I had twins earlier when I was 30 and it was nice to have a flat tummy. Now, after chemo, I am lumpy. PS says there is nothing to do about it. I will continue to exercise and see what happens.
I am pleased with the breast. There does happen to be feeling in it which I am grateful for...
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I am lumpy after chemo too. It doesn't help that I have hernia I am dealing with right now and I cant do anything about it for another month or so. Because of that I haven't been doing much of anything at all. Even taking my walks that I was doing irritate it.
I just finished chemo so I can have the surgery soon. I cant wait to get the repair done, heal and then start my pre-cancer hard work outs I was doing
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Hi Bella,
When I started this journey in Sept 2010 I was all set to have TRAM or DIEP. What changed my mind was the down time. My PS did expander and alloderm. I am very happy with the results of the expander and am set for exchange surgery the 29th. There are lots of choices out there. Research them all and good luck with your decision.
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Thanks very much Paula. My PS is actually a DIEP expert, as I met with him this past Friday, he was not completely happy with me changing to an implant-based recon, but he acknowledged that the decision is mine and this should be the conversation between the BS, PS, and the patient. I asked him whether I am a good candidate for the one-step with alloderm, he thought I may not be because my breast envelope is small. He said he is going to try and see whether it can be done in one-step, and if not he will do the TE. He did say that he very rarely use alloderm, though. He also pointed out that the benefit of doing a DIEP flap is that it is one surgery, while TE kind needs to have multiple surgery and doing the fillings.
In any event, I am happy with my decision and I think considering my history of pulmonary embolism, I should select a shorter surgery. I think having a shorter recovery is a great benefit for me too.
Best of the luck to you next week for your exchange surgery! I have no doubts that it will be a smooth and easy procedure! I also have no doubts that you will have a successful battle with the BC!
Bella
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Ok as to not scare people or make them think DIEP is not a great surgery. When I say "lumpy" I am in no way unhappy with my DIEP or think I look bad. Looking in a mirror at my abdomen I look perfect. It's only from the perspective of looking down to I notice the imperfections. It looks 99.9% better than before!
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To OG 56 - I was age 54 when I had my surgery. I did fine. I went to university of Chicago Med Center - Dr Jaskoviak is by BS and Dr Song is my PS. Both are fabulous.
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Thanks NSWTD, it is good to know!0
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Hi Bella,
I'm glad you've reached a decision and feel good about it. One thing your PS said struck me, though -- that DIEP only requires one surgery. That may be strictly true, in the very best outcomes. But from reading this board for a while, it's clear that most women who have DIEP surgery go on to have second and even third revision surgeries (often referred to as Stage 2 and Stage 2B surgeries). It is true that once the tissue has been transferred and a satisfactory shape achieved, no more surgeries are necessary, whereas with implants, replacement will be necessary after about ten years, so maybe that's what he was referring to.
Just wondering about one thing for you. It sounds as if your PS does mainly flap surgeries. Are you sure you want him to do your implants? There are some wonderful implant plastic surgeons in Boston. Have you had any second opinions (on the alloderm issue, for example)? Not to complicate matters for you, just wondering. Although I ultimately didn't have reconstruction, I considered all these issues myself, so have thought long and hard about them.
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Erica,
Thanks for your comments and questions. Indeed my PS mainly does flap surgeries. I wasn't sure whether he does implants as well, he did show me the pictures of his patient with the implant reconstruction. I had thought about getting a different PS but the main issue is that my BS and PS have to be from the same hospital. My BS is from BI(Beth Israel) and my PS is in the plastic surgery department of BI. Corrdinating their surgery schedule is already difficult enough, I don't want to find another PS from another hospital and they don't work well together.
In an ideal world, I want to have a perfect BS as well as a perfect PS. But for now I don't want the hussle, I have already kind of got delayed because I changed my care to a new hospital, now I don't want more delay. I believe my PS is capable of implants (judging from the pictures). I just want to have the BC being taken care of at the earliest possible time.
Thanks so much!
Best,
Bella
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Hi Bella,
I think you've got your priorities exactly right--I would do the same thing in your place. I hadn't realized that time was a big concern at this point. Moving forward without further delay sounds like a great plan!
As you know, I had my surgery at the BI and have heard really good things about Dr. Houlihan, as well as the plastic surgeons there (if I'd had recon, I would have used Dr. Tobias).
I hope everything goes well. Please let us know how you're doing.
Barbara
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nora_az - after my first unilateral mastectomy almost 2 years ago, it took almost a year before I got most of the feeling back, so hopefully a little more time. I just had reconstruction on that mastectomy side and prophylactic mastectomy on the other side with immediate reconstruction. I am back to the numb feeling and pain and I am sure hoping it doesn't take a year again for me to get most of the feeling back.
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Barbara,
Thanks so much for the support! I just learned my surgery date -- it is in mid April. Finally I can make arrangements for work, family and life
The doctor said it will take 3-4 weeks to recover. So I hope to get back to work one month after the surgery. The good thing is during the summer I can take it easy.
Best,
Bella
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