PAP vs. DIEP (my experience)

morgaine109

Kayne, I hope everything went well on your surgery!

AnneW

I wish I'd thought of the funnel after SGAP surgery! I had the crotchless compression garment, and my nurse tried to fashion a funnel out of a styrofoam cup, but it was a bit messy...

Kayne

Hi Morgaine. All went well, I am feeling pretty good. I get burning feeling in the incisions in my legs and just overall soreness in my whole body. Chest, back of thighs, arms but nothing I cant deal with. How are you feeling? I will hopefully go home tomorrow. I am ready to go home.

morgaine109

Wow. You're going home tomorrow? that's wonderful. I remember being sore after surgery. My throat even hurt. Are you wearing your compression shorts? Is sitting okay?

It will be one month for me tomorrow.  I supposedly can resume my normal activities but I think I will wait a bit before running or tennis. 

Try to get some of the measuring cups the nurses use for your drains. And the gauze strips. I would pack those in my bra to help with the soreness.

Congrats!

Morgaine 

Kayne

I didn't go home on Thursday as the drain in my left boob wasn't in the right place (so he took it out ) and fluid has been accumulating. Dr.Levine aspirated it on Wed. and Thurs. And wanted to drain it again on Friday. So I went home on Fri. It is so nice to be home. I had a follow up appt. today. Dr Levine took out the right breast drain and put a new one in on the left and right side. So back to 4 drains. I am having a lot of pain in my left thigh. Dr looked at it and said everything is fine. I've come to the conclusion that it's a muscle and I cannot tell you how bad it hurts!!!!!!!!! Augghhhhh! Other than my leg muscle I feel pretty good. I am trying to not move it and see if it heals.



I hope you are all feeling good!!! Michelle

DSSCLUChFC

I would appreciate whatever advice anyone can gve me as some of these posts are giving me hope and some are scaring the hell out of me.  I had a bilateral, nipple sparing masectomy a week ago (Monday) and was supposed to have PAP surgery with Dr. Levine (and Dr. Hakan Usal and Dr. Laura Sudarsky) at Good Samaritan Hospital (Sufern, NY) on Friday at a different hospital as my the hospital where my long-term breast surgeon works isn't equipped to do this type of surgery. I was so sick, the worst migraine, maybe from the morphine, that I ended up staying 3 nights in the hospital and told the doctors that there was no way I could handle another major surgery so soon.  Now the procedure is rescheduled for March 15th.  I would appreciate whatever advice you can give me of recommended oain meds that don't cause nausea or migraines, any options to ease the post-surgery pain/discomfort, etc.Also has anyone have this done at Good Sam? Please feel free to contact me. Thank you!

Edited by BCO Mods to remove member's email address. We strongly recommend only sharing such personal information in private messages with those you know and trust. 

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AnneW

Hey, DSS--be wary of putting your email out on the public board. People can send you a Private Message (PM) here. You may be just learning your way around the boards.

I didn't have PAP (had SGAP) but I've had a lot of experience with pain meds and migraines.

Everyone is so different, as I'm sure you know. I never had a post-op migraine till my most recent surgery--which was done under IV sedation. I had a bit of stress going into the surgery, but mostly I think I was dehydrated. Pain meds only made me sicker, and I vomited for hours. Almost had to go back to the hospital.

My advice is to discuss your concerns with your anesthesiologist. They may be able to prevent the headaches for you with extra fluids, scopolamine patch, or who knows what.

Best of luck to you. It's stressful. But worse on the front end than the recovery, to me. It's that darn fear of the unknown.

morgaine109

Hi kayne. Glad you are finally home. The drain in my leg started off okay and then hurt HORRIBLY for like two to three days. I had to lie down most of that time. Then, amazingly, it was okay. I think it was just healing. 

To ease the pain, I was applying ice to the leg where the drain is. It helped. Maybe this will help you?

Good luck. I am sending you good vibes so you can sit.  

stac

Michelle,

Glad you are home.  Sorry you are going through the muscle pain.  I will PM you soon with some info. Wishing you well as you continue to navigate this.

DSS,

After my nausea patch wore off a few days after surgery, I could not hold down food and the Dr. said it was my pain med which was helping with the pain so I did not want to discontinue it, but I did and he told me to alternate Ibuprofen and Tylenol  and it worked well enough for me (I never had migraines or headaches).  Your Dr. can advise you on this.  Please feel free to PM me if you have any specific questions; however, I know nothing about the location of your surgery, only that I have heard good things about Dr. Levine.  I hope you have less and less pain.  

DSSCLUChFC

Thanks for your reply.  I will definitely try to speak to the anesthesiologist prior to voice my concerns.

stac

DSS, In case you are still reading here.  I tried to send you a PM today in response to your questions, but was unable to.  It said something like member not accepting personal messages when I tried.  When you are able to receive PMs again, please let me know and I will respond to your PM.

Kayne

Hi girls,

Came to the conclusion that the pain in my left leg was the piriformis muscle. It's the muscle that rotates the hip. It must have been hurt during the Operation and sitting on it makes it worse. I forgot to tell Dr Levine yesterday, as I am sure I will not be the only person who suffers from it. It is better now. He took out my stitches and 3 drains yesterday, so I am only left with one. Yea!! But I am leaking fluid from holes I didnt know I had. Now I see how tight my legs are! Wow! I guess it takes time. This is my next project to work on, stretching my thighs.



How long does it take and are you girls still wearing the bike shorts? I haven't slept with them on the last 2 nights, needed a break. But I do wear them during the day.



I am a little dizzy today, maybe I need some protein. Have a good day everyone, I am off to make lunch.

Michelle

morgaine109

Hi Michelle. This is Morgaine. I had my pap on Jan. 12 and began running again--slowly-- last week. Everything was good except for my legs. They are soooo tight. Everything hurts. I asked my chiropractor, who gives me deep tissue massages for my thigh, says that's only natural. I guess when you lay off for a month, the way I did, and do absolutely nothing, the muscles tighten up. My hips and the thighs (the IT band that runs along the side) are very very tight. 

Oh and my chest is fine. Some soreness but that's it. My very tight legs are what is annoying me right now.  

DSSCLUChFC

Hi Stac, I did get the prior PM that you sent last week.  Is that the one that you were referring to?

stac

DSS, I was referring to a second PM I tried to send in response to your questions.  However, I was able to get it through to you today.

Michelle,

Glad you were able to get 3 drains out!  I'm wearing regular clothes now and am not wearing the compression shorts or boy shorts anymore b/c they give me a weird sensation in my thighs.  Yep...the tightness drove me nuts too, but it is getting better and better.

Wishing you all well in your recovery!

11BC

Thanks, morgaine109, for posting this. I see that you and stac are also posting on the thread: "implants vs. pap flap with Dr. Levine." It's very helpful to hear about your day-to-day and week-by-week recovery.I'm considering having Dr. Constance Chen (New York) do my Profunda Artery Perforator (PAP) flap reconstruction. Is anyone familiar w/ her? She also is doing autologous lymph node transfers.As per the PAP flap, I'm concerned about developing swelling or possibly lymphedema in my lower extremeties. I have had a bilateral mastectomy so Chen will take tissue from both thighs. I also do not want to take more than a few weeks off work. I hope to resume walking right away.For those who have had the PAP: Afterwards: was it hard to climb stairs? Ride a bike? Squat down to pick something up? Did you legs swell? If so did the swelling decrease over time?Thanks a lot. 

stac

11BC, Good to hear from you and Welcome!  I know nothing about Dr. Chen although she does have an informative web site.  I am nine weeks out today.  I was able to take short walks starting one week out of surgery and have continued that with the exception of some inner thigh muscle/nerve pain that caused me to take a week or so off at about wk 4 1/2 and wk 7 1/2.  It is only now that due to tightness I am getting close to my normal walking pace and only now am able to touch the floor.  That is, for the first couple of months on a bilateral pap flap, at least for me, it was hard to sit unless cushioned, hard to put on socks, and I walked much slower than normal.  I am going to attempt tennis-light this week and have not considered biking or anything like that yet.  I didn't have much swelling at all in the thigh area, but I have heard of others having swelling.  I think it depends on the person, and the girdle/spanx and drains help with that.   My breasts were swollen post surgery and have decreased in size as the swelling went down.  I have had a couple of complications and have not heard others mention this yet, so it may only be unique to my surgery, I don't know.  I have a strip down my thigh to my calf that is numb, and I have had the periodic interior thigh pain that prevented walking for periods here and there as I mentioned.  I have heard others mention a 2 inch strip along the incision area being numb even a year out, but they reported it didn't bother them much.  The TUG is a similar type surgery (except with the PAP no muscle is taken), so you may want to check out the TUG thread, I know some of the ladies that posted there mentioned swelling, so I expect it could also be a complication of the PAP.  I have been active most of my life and believe I could have pushed myself to go back to work by week 4, but I chose a more gentle path and went back at week 6 and it worked well for me.  I will know better how I feel about it all when I am a few more months out.  Wishing you well as you proceed.  I just put it all out there (i.e. the good and the bad) b/c I think it is best going in knowing what to expect and the possible complications.  I was told by a Dr. "Oh you'll be tight for a couple of weeks" and it is so much more than that.  But I do believe the PAP can be a good solution for some women.

11BC

stac: Thanks a lot. You've given me more to consider. Now I have more issues/possibilities I can ask my surgeon about in our upcoming meeting. I've not set a surgery date yet. It sure helps to do my research and be prepared. Best wishes.

bdavis

I have heard of Dr Chen... can't remember who told me or when, but I remember it being good.

morgaine109

Hi 11BC. Initially it was "weird" and very slow going up stairs. But that was more b/c of the drain. Once again, I only had the pap on my right leg,  not both. It was weird bending to pick up items. I began leaning on my left leg which caused my left leg to get sore. I have not had problems sitting or riding a bike. I will be hitting 7 weeks on Thursday and I can completely touch the floor and stretch it now. It feels more and more normal everyday. 

I did not develop swelling in my legs or arms. However, my breast has swelled. It appears to be going down but is still tender.  

11BC

Dr. Constance Chen is one of the plastic surgeons who does perforator flap reconstruction, including the Profunda Artery Perforator (PAP) flap. She's based in New York. I've learned she teams w/ Drs. Joshua Levine and Robert Allen (New York, mentioned in above posts). Here's a link, which lists Chen, Levine, Allen and others in the NOLA Group for the Advancement
of Breast Reconstruction at Omega Hospital LLC (NOLA GABRs):

http://www.omegahospital.com/breast-reconstruction.asp

NOTE: NOLA = New Orleans, LA

stac

Hey gals,

Just touching base.  I played tennis-lite today for the first time (i.e. really easy and slow) and it went pretty well!  Let me know how you all are doing emotionally and physically when you get a chance.

Kayne

Hello all,



Well I am 3 weeks out from my PAP. I had both thighs/breasts done and am feeling great! My legs have really loosened up. Initially it was difficult to put socks on, but now I am fine, still have to work at it to tie my sneakers but it is getting easier everyday. I was able to drive the car pool at 2 weeks but did sit on a pillow in the car.



Let's see, I was walking in the hospital the day after surgery, slowly but it still amazed me. I was also able to sit in chair, sitting on a pillow. I was able to go up and down the stairs, and slept in my bed as soon as I came home. At first I would put a pillow under my knees, but only did that for a

couple of nights. During the day I sat in a recliner, which was a life saver. It took the pressure off the incisions. I went back to work this week, (3 weeks post op) but I only work part time (3 days) in my husbands office. I did fine, had no issues. I am back to walking at my normal speed in my day to day, walking a little slower when I "power walk". I have had no swelling in my legs. I have some "tingling" in my inner thighs. I am thinking it is just the nerves that were cut. I rub them to desensitize them. At 2 weeks they were driving me crazy, but are better now. For some reason at my 2 week mark everything seemed to drive me crazy. I was laughing, Stac, as some days I would switch my spanks, bike shorts 2 or 3 times to find one that was comfortable. So glad you told me to have multiple on hand! You were right!




11BC- I am amazed at how quickly I recovered this time as compared to the BMX with TE. I love having 2 boobs again, even though due to scar tissue one is higher than the other. I will def. Have one revision. Looking forward to being done with this, so not looking for perfection. I will have nipples tattooed. I do not know anything about Dr. Chen but if she teams with Dr. Allen and Levine then I am sure she is experienced with the PAP.

Morgaine and Stac -- glad to hear you are both back to tennis. Did either of you have any trouble with your incisions? My right leg is oozing a little bit, I keep a bandage over it. Doesn't hurt and doesn't look infected. I haven't called the dr as I didn't want to have go into NY this week. Will probably give him a call today.

Have a great day! Michelle

husbands office

11BC

Kayne: Thanks. Your last post was really helpful in helping me to decide if/when to do PAP reconstruction. Please keep the progress reports coming!

stac

OH Michelle, I am so glad to hear your recovery has gone as well as it has....what a wonderful thing to hear and what a relief to hear from you!  Isn't it good to see progress and get back to some normalcy!  I had some gappy incisions and dealt with a decent amount of drainage through week 4 and then had a little here and there through week 7 or so.  The last few weeks of that I was able to handle with a bandaide or two.  I also checked in with my local regular doctor and/or sent pics to the Dr. who did the procedure if I had any concerns.  The local Dr. (and quite frankly my husband at times) had to  trim some sutures from time to time that stuck out some (if you ever need details on that PM me).

Morgaine and Michelle, so glad to hear things are going well.  Keep us posted on your progress and I will as well.  My husband and I and our dog are going out today to a huge flea market which will take most of the day to cover.  I wanted to go a month ago, but knew I wouldn't have the walking stamina and am so glad to be able to go today (9 1/2 weeks post op).  I have noticed the rear incisions get stretched normally through the course of the day and walking and have just recently started working on my inner thigh stretches. Even shifting from side to side like when I am waiting to return a tennis serve seems to be a good gentle stretch for that area.

11BC and all who are considering this procedure,  I'm wishing you well, and will do my best to keep you posted on my recovery.

Kayne

Hi all,



Dr Levine is out of the country this week so I e-mailed him a pic of my incision. He is putting me on an antibiotic and I have an appt on Monday with him. I hope it clears up.



Stac- sounds like you will have a great day today at the flea market. Enjoy!



My daughter comes home from college today for Spring break! I can't wait to see her. Have a good week-end.

Michelle

DSSCLUChFC

Michelle, I must have missed the beginning of your blog. Did yu have a BMX with expanders first and then PAP flaps on both sides?  It is very encouraging to hear that you were able to drive again and go back to work so quickly.  I had a BMX on February 6th at Nyack Hospital and was supposed to have the PAP flap on February 10th at Good Sam in Suffern, but got a really bad migraine after the BMX so my PAP flap with Dr. Levine is rescheduled for March 15th.  Did you use Dr. Levine?  If you have any advice going into this for me, I'd appreciate it.  I was so happy to get the drains out the first time around, but then the TEs really, really started hurting like crazy.  The PS's nurse says the recovery and pain level will be much easier for the PAP than it was for the BMX.  It will be 4 weeks for me Monday and I'm still not driving and other than going out for a daily walk, have barely left my house.

Thanks, Debbie 

Kayne

Hi Debbie,



I ha d BMX with immediate reconstruction with TE on Feb. 12, 2010. I had chemo and rads. While doing chemo I developed an infection in my non- cancer side and had the TE removed. It was put back in Jan 2011. I was expanded and I had my exchange surgery to implants in May 2011. I then developed an infection on my radiated side and had the implant removed in July 2011. Thankfully due to radiation the implant could not be put back in, I am much happier with breasts made from my own tissue. I did not like the look of the implants! I needed a break from Dr. And waited until Dec to look into some type of flap. I found Dr. Levine on line and went for a consultation. I also saw another. Dr in Philly. I decided that Dr Levine was more current and was always looking to improve reconstruction options.



The pain and recovery was much, much easier than the BMX, but I was 2 years out. It was probably about 4 weeks before I drove after my BMX. Dont be so hard on yourself, BMX is a huge operation. And yes the tissue expanders are very uncomfortable. I am just sorry I went through all that pain and discomfort with them. At the time I felt I could not deal with flap pain as well as BMX. Now I wish I had. I is not that bad. You will have your moments of being uncomfortable but nothing like the BMX, at least not for me. Once they took my IV out, the day after surgery, I only took tylenol and ibuprofen during the day and percacet at night . Of course you will be dealing with the drains and they are annoying. Just remember they serve a purpose, thats how I tolerated them.



I need to run to go to my son's basketball game but I will write later with and helpful advise. Hope your feeling good today!

Michelle



I am curious as to why you have TE? Is it to keep the skin stretched?

11BC

Thanks Everyone who continues to give us updates on their recovery. Wishing you the best.
I've garnered much from this conversation. I continue to research my next step. I've had BMX with silicone implants. The right (irradiated, cancer) side developed capsular contracture after three-something years. I also developed lymphedema in my right arm. Now I'm looking into reconstruction options including: replacing/downsizing my silicone implants, doing Profunda Artery Perforator ( PAP) flap reconstruction, or doing nothing. Through another BC.org forum, I've just learned about BRAVA and Dr. Khouri, so I may look into that, as well.
It's nice to have options. In the long-run, I'd like to eliminate any need for further surgery.

Sociologist

Thanks to all for the info on the PAP. Sadeghi (NOLA) is doing mine May 9th. I'd originally scheduled GAP w/Trahan but like the PAP better.

Margaret