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Phantom Itching 2 years post reconstruction

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  • leftduetostupidmods
    leftduetostupidmods Member Posts: 346
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    For months after BMX/recon I had phantom itching... of my right nipple. Said nipple, of course, was removed at the time of surgery. Now how do you scratch an itch on a body part that isn't there anymore? In time the itching went away, now, 9+ years later it still comes back once in a while. It's really maddening.

  • denise-g
    denise-g Member Posts: 353
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    I am 7 years out from UMX no reconstruction and have phantom itch (especially the missing nipple) quite frequently.

    My sister is 2 years out from DIEP and has phantom itching quite often. We have found nothing that helps.

  • coachvicky
    coachvicky Member Posts: 984
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    I had dry needling by a physical therapist. She worked on the muscles and nerves affecting the itching areas. I continue the at home treatments she taught me for a few times each week. The itching is gone. I still have some numbness.

    If interested you will need an open minded PT. A few who I asked just did not understand.

    My insurance did not pay. It was $30 on top of my copay.

    Coach Vicky


  • amyrae28
    amyrae28 Member Posts: 1
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    oh this fun little phenomenon just affected me last night for the first time and I am on my second night with no sleep. I've been up all night with a deep itch I absolutely cannot scratch. I thank goodness for this forum I thought my implant was leaking. I am a year and a half out from a double mastectomy and I have had multiple reconstructive surgeries since. I have a True Stim Electrotherapy thing with the nodes you can put in certain places on your body. I have found this gives a little bit of relief… I left them stuck to my armpit and breast all night and when the deep itchingwould wake me up I would crank it up really high and that seemed to help..... I'm basically shocking the hell out of it. Any relief from this miseryis something.

  • moderators
    moderators Posts: 7,911
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    Welcome, Amyrae28! That is certainly an innovative way to deal with it - we do what we have to do!

    The Mods

  • bella2013
    bella2013 Member Posts: 370
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    I am almost two years out from BMX with DIEP Flap Reconstruction. I have itching that feels like it is internal (under the skin). It occurs on both breast and around my abdominal scar. It is the weirdest feeling to have an itch and not be able to scratch it.

    I decided this week that I am going to trick my brain. When I have the itch I will scratch it and convince my brain that the itch is resolved.

    I know it sounds silly but I will keep you posted if it brings any relief😊.

  • AlisonBB
    AlisonBB Member Posts: 2
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    I had a mastectomy and tram flap reconstruction in June 2007. One year later, had to have the bottom half of the reconstruction removed because of necrosis. The surgeon performed a latissimus dorsi reconstruction to replace the dead tissue. I had the tingling and itching for at least a year in my breast which the surgeon did say was nerves regenerating and would last about one year. Over time, it lessened and just about disappeared. My shoulder blade area where the latissimus was affected still drives me crazy at times and no amount of scratching it helps but my husband knows "the spot" and massages it and it helps a bit. Until a day or two ago, the breast hadn't bothered me for a very long time then all of a sudden it itches inside (behind the nipple, which was removed and reconstructed with abdominal tissue) so badly and is driving me crazy. I can't believe it has returned after so long. I read some of the other comments and am wondering about 2 things. I have increased my daily dose of Vitamin C due to COVID 19 as an ICU nurse told me this was a good idea. (I have not had COVID, this was more hoping to boost my immune system should I get it.) Also, probably like the rest of the world, I am incredibly stressed over COVID, the social unrest, working at home, etc. Other comments said stress seemed to cause more itching for them. I will reduce my Vitamin C intake and do some things to try and reduce my stress level but like the others in this thread, welcome any suggestions or solutions you have found worked. I may consider acupuncture if this persists. I went for the entire time I was on Tamoxifen to reduce side effects and it was very helpful so I am a big fan of acupuncture. Thank you.

  • moderators
    moderators Posts: 7,911
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    Dear AlisonBB,

    Welcome to the BCO community. We are glad that you reached out to our members to share your story. We hope you get some relief. We notice that this particular thread has not seen activity since December 2019 and while your post may reactivate the discussion you may want to start a new topic if you don't hear from others. Let us know how we can help you stay active and get the information that you need.

    The Mods

  • lw422
    lw422 Member Posts: 1,399
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    Bumping this old thread because I had my first "phantom itching" in the middle of the night last night. What a horrible feeling to not be able to scratch!! (Well, I did scratch but the numb skin didn't feel it.) Has anyone come up with a solution for this?

    I'm 4 months out from a single mastectomy and ALND.

  • lila3357
    lila3357 Member Posts: 5
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    What exactly is phantom itching? I had nipple sparing bilateral mastectomy 2 years ago. Shortly after surgery I had nipple necrosis (right side)and underwent hyperbaric oxygen therapy, Recently, Ive had itching mostly the right nipple. No matter how much I scratch or rub, it does not go away. Ive always thought it was an actual itch. Ive heard the term phantom itch but not certain what it means ? and if it applies to nipple sparing itch!! ??

  • inthesage
    inthesage Member Posts: 13
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    The itching is from nerves that got over stimulated. I recognized it because I've had a failed neuroma surgery and got this over the counter creme for it--Capsaicin . (had only one node removed) and it itched most at night. I got rid of my itching after 2 months in just 3 days. A friend of mine was complaining about it. But she'd had the surgery many years ago. I had her get the creme, apply it when the itching starts, usually 1-2 times/day. She said in a short time it has taken the bite out of the under arm itch. It is still there – but the PAIN underneath has calmed. I encouraged her to now stop using it for a few weeks, then restart. The idea of the Capsaicin (the ingredients in hot peppers), is it overwhelms and disorientates the nerves with a greater stimuli. Being she's had it so long,yet gotten some good results in a short time, she might need to get the nerves to adjust to this new baseline for a while, then overwhelm them again.

    Try it, and I really would like to know people's experiences with it. Apply with a cotton ball or something besides your fingers. Because if you wash after putting on your hands, it stays and then you touch your eyes, etc. and you will feel it.

  • kim.lamana
    kim.lamana Member Posts: 1
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    I just went to the store and bought vagisil! It works! Big difference. I also used the pepper cream, and that worked as well….but it does burn.

  • moderators
    moderators Posts: 7,911
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    Thanks for sharing what worked for you, @kim.lamana! We're so glad you found something that offers some relief.

    The Mods