So we’ve been a little quiet of late around here, basically because there hasn’t been much new to report. And also because we’ve been enjoying some much needed, wonderful visits and adventures with family and friends. We do have a couple of posts we’re both working on in the queue though, so stay tuned. Since I’m currently going through the often painful reconstruction process and because I’ve gotten a few questions about what the heck are these tissue expander things, how they work, what they feel like and why do they cause pain &/or discomfort, I thought this would be good time to try and explain the them and the issues I’ve been having with them.
((( Warning: Possible TMI ahead. Navigate at your own risk! And yes, this is all super hard and scary to talk about, especially knowing there are some humans of the male species in the audience. But it’s also important and therapeutic to talk about. Thank you for allowing me to share. )))
During my surgery and after the breast surgeon did her job of getting every last ounce of breast tissue out that she could, the plastic surgeon took over and her main job that day, was putting in the expanders. (I was not a good candidate for for direct-to-implant surgery for several reasons, but delayed reconstruction using tissue expanders is the most common type of reconstruction done.) My surgeon then used my chest muscles to create a deep pocket for the expanders to sit in underneath the pectoral muscles. AlloDerm ( FDA approved donated human cadaver skin) was then added below the expander to help support it as it’s inflated over time.
General timeline for surgeries:
- First operation: Mastectomy + Tissue expander / AlloDerm® breast reconstruction(s)
- Office visits (ongoing): Drain removal and wound checks, fill tissue expander(s)
- 4 months: Surgically exchange tissue expander with permanent implants; possible balancing procedure on other side.
- 7 months: Possible fat grafts to optimize breast contours.
- 12 -24 months: Laser or IPL scar therapy .
(Adjusted timeline and diagram courtesy of stlouisbreastreconstruction.com)
The temporary expanders are actually much harder than the final implants will be, because their shells are thick and very inflexible so most of the pain is from the skin and chest muscles being stretched out to make room for the final implant. Additionally, the majority of my breast skin is pretty numb thanks to the cut nerve endings from surgery. (They’ll unfortunately likely forever stay that way, yet overall it’s a small price to pay for lowering my breast cancer chances by so much.) Scar tissue can also form around implants and cause additional pain and stiffness.
My muscles have always been tight and my overall flexibility is terrible, so the expanders are not easy on my body. I wish I had known how much doing stretches and increasing my flexibility before surgery might have helped with that. I guess I missed that somewhere, somehow during my research and in my pre-op appointments and paperwork. I was mainly concentrating on strengthening my abs to help me get out of bed and up from the sofa easier. Simply having a strong core I’m sure has helped with the recovery process.
Most of my pain tends to be sharp, burning muscle spasms immediately following a fill and often lasting for the next several days, as well as consistent pain around the side edges of the expander that you can literally see sticking out of my skin. It often feels as though I just had surgery again as it causes very limited mobility in raising my arms and the soreness around the incision sites increases with each s k i n s t r e t c h i n g f i l l.
Increasing pressure from each fill as the tissue stretches is necessary, of course to achieve the desired final size and thankfully, once the final implants are in and the skin and muscle settle into their new shape around the implant, the pain should abate and I shouldn’t really feel them much. (Friends have described doing certain movements and exercises where they feel the foreign implant move or shift, something which you don’t have with your natural breast tissue, but that it just feels weird, not painful.)
The expanders have either internal or external ports (mine, like most, are internal), so for each fill, they use a magnet to determine where the port is and then use a horrendously long needle to pump them up with the pre-specified amount of saline. I generally don’t watch (that whole needle thing), even though Bill has encouraged me to as he’s fascinated with how you can literally see them blowing up like a balloon. Yea, I agree it’s pretty cool, but it certainly doesn’t feel very cool! At least not for me. For many delayed reconstruction patients, the fills simply cause a little pain and discomfort for 24 hours or so following the fill. Guess I’m one of the lucky ones?!? Thankfully we finally think we’ve figured out that if I take 1200mg of Ibuprofen an hour before the fill and a Valium immediately following it, that the pain time frame has been shorter. (I’ll have this all figured out just in time for exchange surgery! Ha!) Then I usually have to take the opioid pain (& energy) killers for the rest of the day, and sometimes, the following day. So just when I need a drink, alas….
The expanders and thus my current “breasts” are literally rock hard and honestly, don’t even feel or look like breasts to me. The best way to describe them is if you remember those old 50’s thin, hard melamine cereal bowls (maybe made by Tupperware?) that we used to enjoy our cereal out of while watching Saturday morning cartoons? (I think the one in this photo is ceramic, but you get the idea.
Tangent: If you’ve never heard of Audrey Heller or seen her work, definitely take the time to check out her fun and whimsical portfolio. We have one of her sunflower pieces “What you Sow” that we picked during an art fair on a trip to Austin many moons ago and still absolutely love it.
Given their odd shape and feel, I’m using a lot of scarfs, ponchos and pashminas these days. (I am encouraging female friends to touch and feel them if they want , though, (sorry, fellas) because they are literally SO strange and so WEIRD!
(For a little more tissue expander info, Bill talked more about them in his “I Will Pump You Up” and “Ice Cream & Pillow Forts” posts several weeks back.)
We’ll do the fills until I feel comfortable with their size and will then get one final fill after that to create extra stretching to allow the permanent implant to sit and settle into a more natural shape. I’ve currently been doing 50cc fills every other week, instead of every week like at the beginning, although this schedule changes. Friends or family in town or we’re going out of town? Then I’m taking that week off! So the current timeline has me having the exchange surgery in mid-late June. (They generally recommend allowing the final fill to settle for few weeks before exchange surgery.) I’m finding it really difficult to gauge when to stop though since their size, shape and placement are pretty far off from what the final implant will look and feel like. People often have to have a second surgery to even things up, adjust size, fix rippling, etc., but I’m hopeful that won’t be needed in my case.
Right after surgery, they urge you to avoid lifting anything over 10lb. Apparently that applies to pushing and pulling a vacuum cleaner across a thick rug, and a failure to obey can result in a painful pulled pec muscle, even though I had already been cleared to lift more. So after a recent “episode”, for now on Bill gets to do that part (thanks, honey!) Self-guided physical therapy is helping too, although I wonder if starting it earlier and spending time with a professional therapist could’ve helped with pain management. Worrying and trying to figure out what insurance will or will not cover, though has been like its own joyless part-time job. (We’ve unfortunately had lots of issues with incorrect submissions from the hospital to insurance which has led to over billing for the last year or so that hasn’t helped.)
My neighbor who just happens to be a breast surgeon at another hospital has been wonderful about helping with little questions and concerns that come up. She told Bill that the expanders are especially hard on the “thin girls”, in large part because of the lack of extra skin and our small busted nature in general. (Pretty sure this is the only time I didn’t like being described as thin!) It’s ironic too because this is why I wasn’t a good candidate for direct-to-implant surgery–my chest skin and muscles are very tight, so they needed to expand what little skin was left to slowly make room for the “permanent” implants. (They’re not really permanent, because given my age, it’s very likely that I’ll have to have them replaced once, perhaps twice given their 10-ish year lifespan.) It would have been sooooooo nice to have just gotten the “real ones” at that time!
This illustration shows a cross-section of the chest wall. Red indicates chest wall muscle, yellow shows the position of ribs, pink is used for skin layer, and blue represents the implant. A: Before implant placement. B: Implant placed in muscle pocket. C: Implant expanded within stretched muscle and skin. (Image from verywell.com)
I have a wide sternum leading to the expanders’ “outward” placement, so I still can’t sleep on my side. A Valium most nights helps me get some sleep. Thankfully, a wonderfully kind Etsy maker designed a “beta” custom mastectomy pillow to hopefully make it easier to sleep on my side. It has definitely helped. Although I still can’t fully be on my side because of the pressure it puts on my chest, thanks to her pillow, I can be 3/4 of the way! I’ve been able to give her feedback and design suggestions per her request though, so hopefully the next time she has a customer with similar issues, she can help them even more.
A friend who went through this surgery a few years back wrote a wonderful email a few weeks ago. Wonderful in that it was, again, exactly what I needed to hear at the time. Her recovery was long too, much longer than she thought it would be and feeling like it was longer than it “should” be. She gave me permission to take each day as it comes, no matter what that means and if I like it or not. She gave me permission to take naps when I need them. She gave me permission to ease up on myself when I get frustrated and depressed that one day I feel great and the very next, feel like crap, for whatever reason. And she gave me permission to reward myself and celebrate even the smallest accomplishments, so I’m trying to do that and not be so hard on myself.
As we mentioned earlier, I had literally done years of research on this surgery and thought I knew what to expect and that I was prepared for it both physically and mentally. I learned I was not in several ways. In addition to the expander pain, I/we didn’t realize that one’s time frame for recovery, and what that means to each person, can be wildly different. Of course, it’s obvious to me now, but because I didn’t have breast cancer, I thought I’d be immune from some of the emotional pain and that my recovery would be faster thanks to no chemo, radiation, etc. We’ve since learned that even having a prophylactic bi-lateral mastectomy, recovery in the sense of where you’re pretty much feeling completely back to normal, could take up to a year or more, depending on any multitude of factors. That I was not prepared for, but I am thankful I know now that I’m not alone in having an longer recovery period.
Overall, 90% of the time now, I’m feeling good and while the feeling and general soreness of the expanders is always present with random shooting muscle spasms that come out of nowhere, I can generally manage with just Ibuprofen. Mostly they’re just an unpleasant reminder that I’m not yet through this process. Many, many days I just want to be and finally feel “normal” again, but we are finally seeing the light at the end of the tunnel now that my exchange surgery is scheduled and I know it will be here before we know it (Seriously, how is it already May?!?)
I’m learning that recovery, for me is a long and winding rollercoaster. When you’re a kid it’s super fun when the ride attendant lets you stay on for another ride, but now roller coasters give me a headache and I’m definitely ready to get off and exit through the gift shop.
Selfie from our pre-surgery getaway to Cabo in December 2016. Good reminder that I will feel like that again!
PS: I’ve tried my best to get all of this info correct, but I’m no doc, so if anything seems off, is incorrect or you just have any questions, please don’t hesitate to let me know!