Burning Pain on Side, below Expander-HELP! It hurts so much!

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moonie_tricks
moonie_tricks Member Posts: 5
edited June 2018 in Breast Reconstruction

Hi All~

I'm new here. I've been lurking and reading as I have gone through my journey and am desperate for a little advice:

Long story short: I'm 44 years old with breast cancer in my family on my mother's side. Tested and am positive for BRCA2. My bilateral mastectomy with immediate reconstruction was 4/27. Unfortunately, my body had other plans and did not want to heal. I went in for a debridement of both suture sites almost 2 weeks after the surgery. Redness on both sides near the incision, but my husband and I thought it was just due to my sensitivity to tape. The second set of drains remained in during the debridement surgery and I finally had them pulled out. Because of my sensitivity to tape, my PS told me to remove the tape and put neosporin on the incisions. Unfortunately, the left side still wouldn't heal and it looked like I was starting to get an infection on the inside on my left. I had to go in for a 3rd surgery on 5/24. When the PS got in there to see what was going on, his exact words were, "it was a MESS." I had debris and mucous floating around and the alloderm was just flapping in the wind, my body not even bothering to accept it. So, he took out the expander, stitched me up, and when I came out of the anesthesia, I was crying, it hurt so bad. But, the good news was, the left sidee (even with a bit of a scare with the surgical tape breaking and I started leaking fluid again) started to HEAL! But, the right side decided to start filling up with fluid.... FAST. I filled up with fluid in two days. It looked like a dang waterbed in there. Which brings me to my question/quest for help:

Because of the fluid building up so quickly, I started to get a really painful burning sensation on my left side, below the incision and expander. There isn't anywhere else where it really hurts, just the side. I thought for sure draining the fluid would bring me instant relief. NOPE. He filled my expander 200cc and then drained the fluid. Doing that, I now have a constant burning pain in the same spot from before. It hurts to bend, it hurts to reach, it hurts to STAND STILL. I'm out of the pain meds I had from my 3rd surgery and honestly, Norco made me nauseous. I was given percocet for my mastectomy, but that stuff made me itch. I'm not allowed to take any Advil or ibuprofen until the end of next week. I can take Tylenol, but that stuff doesn't do anything. I'm worried because I have to go back to work after being off for five weeks.

Do any of you have any suggestions I can do to keep the pain down to a minimum? I have a sort-of rolled up towel shoved into my side for support, but because my left side is still healing, I can't wear anything for support and am rather lopsided.

Thanks in advance. <3


D~

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  • Moderators
    Moderators Member Posts: 25,912
    edited May 2018

    moonie_tricks, welcome to Breastcancer.org. We're so sorry for all you're going through with your surgery, but glad you've found us and decided to reach out!

    We're sure our always helpful members will weigh in shortly with their thoughts and advice. In the meantime, you may be interested in the Forum: Surgery - Before, During, and After, and maybe you could post your question there too!

    Good luck with everything and keep us updated on how you're getting on.

    The Mods

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  • CBK
    CBK Member Posts: 611
    edited June 2018

    Hi Moonie

    I too am BRCA2 and I am so sorry to hear your troubles.

    Are you sure that burning sensation isn't from the nerves healing?  I had that for a while during my expander phase of reconstruction. What you are describing sounds like a seroma (fluid build-up) and should not be that painful.  

    I used Toradol for pain, during MX phase with reconstruction.  You can only be on this medication for the short term though.  Then I switched to Tylenol and added low dose of valium for spasms after that.  

    I hope you find some relief, let us know how you are doing.

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  • ReadyAbout
    ReadyAbout Member Posts: 211
    edited June 2018

    FWIW, I am 2.5 weeks post bmx and have sunburn feeling/hypersensitivity on my sides, left armpit, and chest. Percocet is a wonder drug for me and I take it in the morning and then late afternoon. I tried to switch to 800 mg of Advil in afternoon and found myself crying each day so I went back to Percocet. My PS said it is due the nerves being cut and it should improve in a week. I also had issues with tissue not healing and at my one week appt my PS said the black/purple skin on my left side had a 50/50 shot of surviving but that he might need to do another surgery to clean out the necrotic tissue. Someone on one of these chat boards told me about hyperbaric oxygen therapy. It can be immensely helpful in wound healing. I have gone for five sessions and it’s simply astounding how quickly the tissue has bounced back. I do have one area on the nipple where the skin peeled off and it looks gross, but I think with in a few days it should be fine. Otherwise, all of that dead looking tissue is back to looking pink.My plastic surgeon had never had a patient do hyperbaric but he didn’t stand in my way. He wrote a referral and I started going and I’m so glad I did. I have some autoimmune issues and I knew that it would be a challenge for my tissue to heal.

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  • moonie_tricks
    moonie_tricks Member Posts: 5
    edited June 2018

    Hi NJ!

    I ended up calling my doctor's office on Friday to let them know this had been going on for five days with minimal relief. It felt like the pain was lessening, but not by much. The doctor's assistant told me that, unfortunately, this goes with the territory. I also had the sentinel node in my armpit biopsied, so she said that most likely, the pain I was experiencing was from the initial surgery, plus the lymph node biopsy. She said all I could really do was maybe take some tylenol and that it would get better. The last time I experienced nerve pain was when I had a c-section. It felt like my abdomen was on fire from the inside and for awhile, I had trouble walking/standing for longer than a few minutes. But, this? This was debilitating. I didn't want to seem like a wimp, but holy cow!

    Well, not two hours after I called my doctor's office, I was sitting in my recliner eating lunch with my husband, when I automatically reached for something with my right arm. It took me awhile to realize I hadn't felt any searing pain. POOF! The pain I had was gone! I was so relieved!!! I still have an icy cold feeling running up and down the inside of my arm, but I'm more than happy to take that over that nerve pain.


    What I'm afraid of is getting my next fill and having the nerve pain return. Trying to look at the positive side, at least I now know it will eventually go away. :)


    Dana :)

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  • moonie_tricks
    moonie_tricks Member Posts: 5
    edited June 2018

    Hi ReadyAbout,

    My daughter's classmate's mother went through finding a small tumor, did chemo, then had a BMX with immediate reconstruction. She said at first, she was OK, but then her skin started dying. So, they put her in a decompression chamber for 25 sessions, which helped her skin heal. A hyperbaric chamber is the same as a decompression chamber, correct? If so, I want to definitely bring it up to my PS when it comes time to revisit the left side for tissue expansion. Because of the difficulty in healing I had, it would probably be a good idea to look at other options, too!

    It's really hard to look at myself all lopsided, one side expanded, one side concave, and have to wait 4-6 months for yet another surgery to put an expander back in on the left. I can't wear a bra right now because my scars are in the inframammary fold, right where even a soft, wireless bra would sit. :( I guess it's just par for the course. Not everything is as easy as it seems. I thought I'd be relaxing around my house, coloring while I recovered in my comfy chair. I had NO CLUE what to expect!!!


    Dana :)

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  • lisaroz109
    lisaroz109 Member Posts: 14
    edited June 2018

    Dana,

    I'm right here with you. I'm all left lopsided as of Saturday. (In fact, my deflated side kind of looks like a sock puppet.) My original surgery was on 5/21. I was rockin' the recovery, man. I was out walking, doing all kinds of things. Then last week, fatigue, fever, redness, increased swelling,...by the time I'd been on 24 hours of oral antibiotics, the left side was such a mess, they just called it. I had surgery on Saturday to remove it. I immediately felt better, but they had to do so much pulling and scraping to get all the infection that I'm hobbling around like I am 5 days out from original surgery. So, here I sit for a while in my recliner and my 5 lbs of hospital fluid retention and a new drain and a new worry about any little ache or hint of a fever being an indication that the infection has taken over my body. Setback city. And I'm realizing this about a bra, too. Such a disappointment.

    Hang in there!

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  • moonie_tricks
    moonie_tricks Member Posts: 5
    edited June 2018

    Hi Lisa!

    I'm so glad you understand. Unfortunately, I have more bad news. I go in tomorrow to have my remaining expander removed. Although it seems as though it was successful in expanding and staying in place, I've had nothing but issues since my 2nd debridement surgery. The right side just got redder and redder and this past Saturday night, a small hole appeared in what I thought was a completely healed incision. The next morning, I took my daughter to her swim lesson and when I got home, I found blood on my abdomen. Then, the hole started leaking a bit of fluid. It looks like it's scabbed over, but the redness on my breast has expanded to underneath and vertically along my abdomen. My PS wants to remove the expander, let me heal and then six months from now, try again.

    I'm devastated, to be honest. I'm a high school English teacher and the very thought of returning to work in the fall with a concave chest worries me. It took me awhile to actually come to terms that the left concave side would just be temporary and, "HEYYYY! Lookit that perky right boob! It's not saggy and it actually looks pretty rad in clothing!" Then, the bottom dropped out from under me. I'm so sad. I wanted this to work so badly. Being the impatient sort, waiting for 6 months to try again is going to be torture. But, I plan on taking some time off of work to recover fully to give my body the complete chance that this will all work. I guess it's a good thing that I didn't make it to the transfer stage... I have heard of many women who have had the expanders work only to have the implants fail. So, I guess in six months, we'll see.

    How are you feeling now? I totally understand what you mean about the infection - after the expander was removed from my infected left side, I woke up from the anesthesia CRYING. I had never experienced that before. So, I'm bracing myself for that to happen again with the right side. My PS said he might not even bother with a culture for the right side because I've been a super strong antibiotic for over a week and it'll affect the culture. I guess we'll see.

    Take care!

    Dana :)

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  • moonie_tricks
    moonie_tricks Member Posts: 5
    edited June 2018

    Oh, and I should add an addendum to my original post: The nerve pain lasted about five days, and then not two hours after I called my doctor, wondering how I was going to manage through the next week of work feeling the way I did, the pain POOF! disappeared. I still had a lot of "icy cold" feeling in my arm, tingling sensations, and some numbness, but THANK ALL THAT IS GOOD, no more searing nerve pain. :)


    Dana :)

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