11 Comments

My Chronic Phantom Nipple Itch

craftastrophe.net

This picture made me laugh so  I had to share.  And the itchy eyelashes are very near and dear to my….story below.

I had a friend ask me some time ago to post an update on my cancer journey for breast cancer awareness month.  At first I thought, well, I don’t have one.  I simply life day-by-day with the effects of chemo and reconstruction.

But I live with something else much more sinister.

I used to joke that a mastectomy is simply nothing more than a huge skin tag removal.

Until my first episode of phantom nipple itch.

Oh Momma…..

Imagine the most intense itch possible coming from multiple nerves in a blast of painful sensation.  It literally jolts my body.  I frantically rub anything near “it”.  Unfortunately “it” was removed over 3 years ago.  My itch is right where my nipple used to be.

Yes, used to be.  I feel an itch that is outside of the current parameters of my body.

In exasperation, I have ripped my shirt off before my mirror as my world turns surreal.  I am rubbing a breast that is not my own, that I cannot feel, attempting to quell an itch that is from a breast that is not there. I FEEL a memory from a severed nerve that just wont let well alone.

After my first experience I realized that I am an amputee.  I understand the frustration of “phantom limb pain”, only mine is an intense itch.  Of course, I demanded to know what to do about this horrible problem.  And got a “Oh, well, yes we have heard about itching, but there isn’t anything you can do.”

Sometimes it is just a jolt or two.  Other times it is minute after minute of nerve irritation.  I have found the only help is to focus on the fact that I am not itching, it is a nerve that is unhappy.  And pinch myself HARD somewhere near where I think the unhappy nerve lies.  Now I feel the nerve, but I can’t get to it.  And it still locates to a nipple that is no longer there.

One would think that once the nerves were attached to the nerves from my reconstruction they would settle down and accept the “adoption”.  No, they are as stubborn as their momma.

People who get prophylactic mastectomy should know what they may experience.  I don’t think this is a well-known phenomena, although I have now read that almost every woman experiences it at some point.  A mastectomy is not a skin tag removal, and one’s nerves have a very long memory.

And my silver lining?  Well, watching me dance around wildly rubbing my boob has to be a howler for sure……

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11 comments on “My Chronic Phantom Nipple Itch

  1. Thank you for sharing this piece of your life. Hope it helps others as well. I have the itch from nerves that were killed in my leg. I feel your jumping round.(I can do it in public and people only think I am a bit nuts)

    • Yes, entertaining aside, when it hits it is so unexpected and I feel so powerless to do anything! Nerves are powerful reminders that They Are In Control… 🙂

  2. That sounds so horrible. And catching that nerve acting up in public can’t be fun either. I have a scar from my open heart surgery that must not have healed properly either and often times it itches for no reason. Of course, I just scratch it and it feels better. I know, however, you probably wouldn’t want to rip off your shirt and scratch that nasty nerve in the checkout line at Walmart. You know I feel for you and you know I pray for you. I just wish your stubborn nerve would just leave you alone. This is another fantastic post and it seems as if you’re feeling a bit better now. You seem to be coming around. I will pray for you. God bless, Gimpet. Thanks for the insight. Maybe your honesty will help others.

    • I have been meaning to write this post from a question you asked me in an email some time ago about how I cope after mastectomy. I finally had time…..and motivation for it!

      • Thank you for sharing. My mom died of breast cancer after surviving two bouts with it. You are truly an inspiration to me and I know others appreciate your candor and your delightful, sometimes sorrowful, but always honest accounts of life after mastectomy.

  3. I have treated this very successfully with acupuncture in a woman who had a bilateral mastectomy with reconstruction and phantom pain/itch on both sides! We got rid of it with the trusty needles. She had saline prostheses and I was terrified that I might puncture one but thank God that didn’t happen and she was a happy camper.

  4. Hmmm, I may have already answered this, but please forgive me as I am writing on my cell in israel and it’s a bit awkward. In acupuncture we treat phantom nerve pain by treating the opposite side. Try rubbing/squeezing the opposite nipple next time it happens. I have treated many women post-mastectomy with wonderful results, even while I am holding my breath watching out to not puncture a saline prosthesis! Let me know how treating the opposite nipple goes.

  5. I’m a 16 year survivor of breast cancer and have that 16 year horrid nipple itch. If it thinks that the electrical signal is going to make it to the nipple that was once there and may still be in the bio lab or in a bio dump, that nerve root needs a lobotomy. I laughed because I could just see the two of us jumping around trying to get the itch to stop. I once found the source under my arm pit, but after depressing it and fooling it for a while, the itch found a new path deeper in my chest cavity, one that I couldn’t touch and block and annoy and “pain” me. Friends look at me when I pound on my chest and belt out the Tarzan call.

    • SO glad someone understands! I found it helpful to hone into the source like you and now when it starts it more feels like angry nerves under the incision, but I still cant access it very well. My mom says, helpfully, “Let me stomp on your foot and you will forget the itch”…LOL, thanks MOM! I really hate it when it starts during work. Sitting in a meeting or starting a child on dialysis in ICU is NOT the time to be a “leaping loonie!”

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