Still in a lot of discomfort/pain after 4 weeks

CGraz1

I was diagnosed with stage 0, DCIS in my right breast, I’m 50, and with my family history, decided on a double mastectomy. I’m going into week 5 and although I only had my drains (1 on ea side) taken out last week, I’m in immense pain ), of course I’m sure pain is expected, but these tissue expanders are horrid!! Many days I can barely get out of bed bec I’m in pain. I go to the plastic surgeon weekly, but he seems to think it’s just the way I’m healing.. this can’t be normal!! Is it?? I’m no longer on prescription pain medication, which I no longer want anyway... but I can’t live like this, nor imagine this fir the next 3-4 months until the exchange for permanent implants. Anyone experience the same or have suggestions

Kittygal

Hi sorry about all the pain your going thru, it could be nerve pain? When I had mine done, it wasnt actually physical pain I had meaning no pain killer helped me, until my ps prescribed nerve pain medication.

Cowgirl13

So sorry you are in this pain. My best friend had her expanders taken out about 4 or 5 days. She just couldn't deal with it.

MinusTwo

Tissue expanders are NOT comfortable. My son reminds me I complained about pain for the entire 6 months. But it does get better once they start filling. Things that are pushing on your rib cage or your collar bone now even out some. Just don't let them fill too much at once since trying to stretch skin too fast isn't pleasant either.

There are lots of threads that discuss how to live with TEs. Check out the search option.

Edited to add: Here's the link to the reconstruction forum. Two threads that I liked are "exchange" and "TEs"

https://community.breastcancer.org/forum/44

And just wanted to say that as uncomfortable as those darn turtle shells were, they did the job. I exchanged to implants in 2011 with no further issues.

CGraz1

TE’s were slightly expanded (size I was in grade school.. not big at al) 2 or so weeks later. I was a HUGE C before (likely a G when I had surgery). They deflated and reinflated last week (about same size I was last time). I even got crap about getting DIEP Flap to add even more before mastectomy.. but I said no!!! Also, just wanted to get back to a regular size. At this point (I tried on one my bras and it’s fits nicely.. not sure what the issue can be)

OnlyGirlof5

Hi CGraz1,

Any chance they started filling the TEs too soon? My surgeon made we wait for a full three weeks to allow things to calm down, but then it ended up being 6 weeks because COVID shut everything down 10 days after my surgery. Fills went well for me, just some minor discomfort. I did use muscle relaxers occasionally. I do remember the nurse telling me some women really struggle with the fills so they would go very small amounts and wait longer between fills. Are you done with all of the fills? If not, maybe holding off an extra week might give you some relief.

Rah2464

CGraz1 i did not have expanders in my first surgery, I went direct to implant. I had significant pain issues, especially weeks four and five post op, but the nerve pain and scar tissue formation (cording) continued for me. I have read that thinner women can react this way. For me, my nerve response during the healing process was downright miserable.

Please talk to your PS about the nerve pain you are experiencing. For me some things that helped - desensitizing the area with massagers and a dry washcloth just gently moving over the skin. I lived in a surgical compression garment. Couldn't stand anything else against my skin.

I created so much scar tissue that last November I had a redo. The replacement surgery this time was so easy. My surgeon dosed me preoperatively with Gabapentin to calm the nerves and I have had such an easy recovery. Please talk to your surgeon, you are an individual who is responding to the trauma with a much higher than normal pain response. I think you will feel so much better once the expanders are exchanged.