For those who are happy with recon, some input please

nash

I'm interested in hearing from ladies who have had reconstruction (any kind) and who would say they are happy with how they feel physically after the surgery.

I am almost a year out from uni lat flap (done for a recurrence in a previously radiated breast). I am miserably uncomfortable, despite extensive PT and now a new approach of addressing fascia and scar tissue by a new chiro. I already tried Gabapentin with no luck.

I feel like I have a rock duct taped to my chest, my back scar pulls terribly every time I move, my shoulder feels weird (it's hard to describe. Probably paresthesia), my entire side feels duct taped/bandaged up. My PS has diagnosed me with PMPS, but I think a lot of my problems stem from fascia issues, scar tissue and some edema, on top of nerve damage.

Some days I feel like I'm in a tiny minority of women who feel like utter and absolute crap after mx/recon. Other days I wonder if I'm expecting too much as far as feeling good. I am a competitive athlete, and I can do my sport, but I feel awful the whole time. I can clean my house and run my errands, but again, I feel awful the whole time. I feel awful sitting down. I feel awful standing. I feel awful lying down. It's 24/7, since the moment I woke up from surgery.

So, those of you who would characterize themselves as feeling good, do you have constant pulling, tightness, heaviness, etc etc? Am I being unrealistic to think the reconstructed side will ever or should feel more or less normal?

Thanks in advance!

nash

Bump. Anyone???

farmerlucy

I had implants over four years ago. Overall I'm happy with it. I don't like the weird pec action of the implants under the muscle. I don't have any pain, and only feel them when I think about it. Is is the new normal. I don't think the recon side will ever feel the same as the original side for you but you shouldn't be in pain.

If they ever need to be replaced I'll seriously think of deconstruction just because I think flat would be freeing and I can ditch MRIs once and for all. I'm sorry things aren't working out for you. I hope you get some relief.

nash

Thank you for the input, farmerlucy. I figured I shouldn't be feeling the way I'm feeling. I was used to funky feelings after my lump/rads in 2007, but things were tolerable. I can't get the PS, PT or anyone else to understand that I feel like I'm being crushed to death 24/7.

Rose_d

Nash,

I agree you shouldn't be feeling the way you are feeling. I had a bilateral mastectomy 4 years ago. I remember feeling many of the things you described in the first year - felt like I was wearing an iron bra (even after the exchange to the implants) and strange pulling and just generally not in my own body. I had a lot of numbness all the way around to my back which was really uncomfortable.

I guess it's hard to say how much of it is that the issues got better and how much is that I just got used to it, but now I definitely don't feel bad most of the time. I too don't like the feeling of the implants being under my pecs when exercising, but generally they feel relatively normal. I don't have full range of motion but pretty close (PT helped a lot). I will say that I think it took at least a year to feel this way. Much longer than I would have expected for recovery.

I am sure we all feel things differently and the fact that you are a competitive athlete may mean that you are more 'in tune' with your body and less able to adjust to the changes than someone like me who mainly sits behind a desk all day. But what you are describing sounds like more than you should have to just deal with. I wonder if you need a new physical therapist?

Rose

nash

Thanks for the input, Rose. Yes, I recently fired my PT group. I just started with a new chiropractor who is focusing on myofascia release, scar release and shoulder mobility, and I do have to say we are finally making some forward progress. It's just painfully slow, and I can't believe that after a year I still feel this bad.

Part of the problem I think is that my PS acted like I should feel 100% fine at the six week post-op appt. When I didn't, she was very quick to diagnose PMPS and tell me to take Gabapentin. As I've gone along, it's become more apparent that my issues are muscular-skeletal/fascia related, and are probably made worse b/c I am an athlete, between being in-tune like you said and being very active.

If the PS had told me from the start that I'd feel like crap for a year, then start to get better, plus suggested proper soft tissue and scar therapies, I'd probably feel better from the standpoint of having a more realistic outlook. The PS flat out told me I didn't need PT, and scoffed at myofascia release. Glad I didn't listen to her.

It's encouraging that four years out you feel pretty good.

debiann

No one really tells you to expect this after surgery, do they. I had a double mx with DIEP flap reconstruction. My right breast is a year out from surgery and feels great, no issues at all. My left breast, however, went through a revision in October and I have had pain and swelling ever since. More than with the original surgery. It is definitely improving, but when I am very active it swells again. My BS told me to expect more improvement, but that it may always be a bit painful, it just happens that way sometimes.

My donor site, the tummy area, is still numb and feels weird. I get strange cramping when I am engaging the ab muscles. I'm not very athletic, so its not much of a problem. I'm sorry you are going through this, hope things improve.

nash

Thanks, debiann. It's interesting how one side can feel fine and the other not so much with a bilateral reconstruction. I've head that from other women as well.

Blessings2011

I had a BMX in December 2011, with immediate TE placement. I was overweight at the time, and the PS put in extremely large TEs based on my native breast size.

Then the MO told me I needed to lose weight, and I lost 60 pounds. That changed things considerably. I ended up getting 700cc high profile saline implants in August 2012, along with painful lateral capsulorraphies (surgical reduction of the pockets, so the implants didn't end up in my armpits when I was flat on my back.)

I'd dreamed of that day since I came home from the BMX. The TEs caused me so much misery.... and all I wanted was that "Ahhhhh" feeling at Exchange. It never came.

Lefty tried to crawl over my shoulder for five months. I still felt like I had a red-hot bear trap around my chest. The PS told me "They look great - what is it that you want?"

When my BC medical team failed me, I sought out a wonderful Myofascial Release Massage therapist. She worked on MFR, and Lefty shifted into the correct position in only five visits. She also got rid of the iron bra feeling. In fact, when I walked out of her office and got into my car, I had to adjust the rear-view mirror because I was standing so much taller!

Your recon was much more complex than mine was, so I would imagine there could be more reasons for pain. I also don't know much about PMPS, but I would not take "No" or "I don't know" for an answer.

It's hard to compare apples to oranges, but my biggest issues are probably the size and heaviness of my implants (700ccs) and the muscle tightness from where the pectorals and anterior serratus muscles were sutured.

Turns out my biggest painful mass of scar tissue was around my drain holes from BMX!

I think you are on the right track with MFR, but I see that you are receiving it from a chiropractor. My MFR therapist is also a Certified Lymphedema therapist, so the majority of her clients are breast cancer patients. You may want to see if there is such a person in your area.

I feel my implants every single day, unless I am distracted.... but I know I can get some relief by going back for the MFR.

nash

Thanks for sharing your story, Blessings. Yes, I'd thought about going to a certified MFR person if the chiro can't get me to a level I need to be at. What's interesting with her method is that she doesn't do manual MFR. She uses an endermologie machine. It literally sucks up the fascia like a vacuum, plus stimulates blood flow and lymphatic drainage. Sort of a turbo-charged MFR.

Your PS sounds as delightful as mine. Hey, so long as one looks good....sheesh. And interesting about the scar tissue around the drain holes--I bet I have that too. So far the chiro has been doing Graston on my back scar from the lat flap.

I didn't realize the pec muscle gets sutured to another muscle--no wonder mine is having fits, between that and the implant. My implant is small--250cc, but it might as well be 1000 cc as far as I can tell. I'm supposed to have it swapped for a larger one--it's just a place holder--but I refuse to be cut open again at this point.

magiclight

I noted this information on the bc.org information site re: what to expect post op and this seems to be the preferred platitude for those of us with post surgical pain - basically this site suggests the pain (OK they call it discomfort): "Your discomfort may go away by itself, or it may persist but you adapt to it." Adapt is perhaps code for just live with it. I think we women deserve better information.

nash

I absolutely agree. Any medical practitioner who tells patients to "get used to it" (like I and many others have been told) has no grasp on the magnitude of the "discomfort". The PT group I just fired had me doing mindful breathing and jaw relaxation. For goodness sakes, if those things took care of the post-mx/reconstruction tightness and pulling, I wouldn't be here at PT, now would I?

Nowhere can I find (either on breast cancer websites, info from surgeons or even articles written by patients for patients), regarding what to expect post-mx/recon issues, a discussion of the excruciating tightness, discomfort and pulling so many women seem to have and what to do about it. Thank goodness for the discussion boards so at least we can talk to each other. That's why I was wondering if I'm either in some sort of tiny minority or if my post-op expectations were misplaced, or what.

I am excited to be on the right track with the myofascia and scar release things.

NancyD

I had delayed bilateral DIEP recon about six years ago, two years after my diagnosis and treatment. I would describe my results as good. Is it totally normal feeling? No. I have an awareness that something is on my chest that I can't feel. The breasts are numb but I have feeling on my chest wall, and that is disconcerting at times. I sometimes have tingling and, yes, a little pain, that I think are nerves growing in around the edges.

I did have a sharp muscular pain that came when I tried to reach down and forward in my car to pull the release to the gas line door. I assumed there was some old mx scar left that my PS didn't/couldn't remove (he told me that I had some very hard scarring). It has recently stopped, so I think the scar has broken up. So there's some input about how long it might take to break up internal scarring.

No one I mentioned this to on my medical team felt it was anything important enough for them to deal with. Since it only occurred when I had to get gas in my car, I avoided it by sending my daughter. But if it had occurred in the course of doing my work or a pastime I enjoyed, I would have complained, complained, complained.

stellamaris

hi, I am 5 weeks post uni mx with Immediate DIEP recon. I have to say I have absolutely no problem with the Franken boob, other than it is still healing. No arm or shoulder issues, and full mobility. I was hiking our local mountain 3 weeks post op. The donar site healing is dragging, but I was standing straight 2.5 weeks post op and have some tightness still but overall feel pretty good. Went back to work 4 weeks post op. I love, love, love my new foob. It is soft, warm and feels like me. Frankly, I am pleasantly surprised, I was expecting worse. Good luck to everyone in your healing. PS, my biggest complaint is Bach ache. Not sure why, but standing, walking for longer periods gives me back pain. Definitely did not have that pre-surgery.

nash

Thanks, NancyD and stellamaris. I'm always so happy when I hear of ladies with good results! That's quite remarkable how well you are doing at 5 weeks post-op, stellamaris! Wow! I had gone into all this expecting the same. Not a 24/7 constant vice like crushing feeling. My theory is that everyone's muscles and fascia and such react differently. I have tight muscles to begin with and I'm sure none of that helped my situation.

I had constant low-grade breast pain from my lump/rads in 2007, with some weird itching on my scapula, but it was all tolerable and nothing like what I'm going through now. One would have thought being young and in good shape going into the mx/lat flap, I would have sailed right through. Alas.