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Top surgery pain sufferers after 1+post-op?


ihatemybody

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Hello, I joined here to get some information online from those who had top surgery. I have yet to find anyone who didn't heal from the common pain and discomfort that one would usually get from the surgery.  Of course everybody is totally different but from searching the internet, my particular complaint seems to match the risks a post op woman would get from a mastectomy due to disease.

The best I can explain my problem is, the entire left chest is hurting with pressuring pain when my chest moves in any way whether from my arm (this is most especially the case that causes the most discomfort because it goes to my underarm too)  moving my neck or hips... The strange thing is, the both nipples (especially the left) have tenderness while looking lifeless; meaning they don't even stick out. This left sidenever healed and I don't think it will ever heal now. I had the surgery more than a year ago now.

I don't even want to go into details about my actual experience with the surgeon but I was basically brushed off completely. This is truly unfair.

 

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I have several FtM friends who have had BR / Mastectomy surgery within the the last two years, and while they have not had problems exactly like yours, they have had  what is most often referred to as phantom limb type pain that has lasted up to two years.in declining intensity.  This happens to MtF GCS patients as well and is because the nerves involved in the surgery have become displaced or are no longer fully connected to a more distant location (such as a foot nerve in a leg amputated at the knee.)  Certainly. if the pain prevents you from doing a job or school work, I would recommend going to a Neurologist if your health plan or regular doctor can get you to one.  From your words you do not think the surgeon who did your mastectomy will pay attention to you or help you but it is possible that if you go to another doctor and give them permission to speak to the surgeon, and give the surgeon a release to talk to your neurologist, things can get straightened out. 

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I'm sorry you are going through this.

If the surgeon isn't seeing you for these issues please get other medical help.  I have several FTM friends and like Vicky noted none have complained of this kind of discomfort.  Please get some help.  1 year post op is certainly long enough for healing to be complete.  

Gentle hugs,

 

Charlize

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  • 2 weeks later...

Sorry for the late reply.

I am just really devastated because I still didnt heal over time and going with this surgeon was a total waste.I dont think my doctor talked with the surgeon even though I told them to.It wouldn't matter in any case because this person is full of defense and makes it sound like everything is fine and overall blamed it on the fact that I am sensitive to pain. I saw a specialist already and they are only about prescribing medicines which I won't take.Plus, I know what works and doesn't work on me.  I wholeheartedly want whatever wrong was done to my one side be FIXED. 

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A FTM friend just had a revision surgery on his right side.  The surgery involved damage to a nerve and that is causing him major pain that he describes as worse than the original surgery.  Hopefully time will heal both of you. I have to agree that pain meds are very dangerous.  Many prescribed to help us are extremely addictive and anyone can be quickly hooked starting a life of greater pain.

 

Hugs,

 

Charlize

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Hi, sorry to hear you're having a difficult time.  Based on how you describe your treatment from your surgeon, I'm certainly disappointed.  Definitely keep pushing though; you deserve good and appropriate medical care.  

With what you're describing, two things come to mind.  Charlize mentioned it and Vicky alluded to it.  With extensive surgeries like you had, nerve damage and/or sensitization can happen.  Occasionally the surgeon will have to do a nerve block in the affected area and it it persists, a minor revision.  The other is what's called adhesions.  It's a type of scar tissue that forms connecting parts or areas that aren't usually connected.  Sometimes they form connecting your skin structure (skin, body fat layer etc.) to your chest muscles.  This can cause pain when you breath, or with various movements.  They also can form along the path where any surgical drains were placed.  Your surgeon will know what to look for and how to correct it.  

For pain control, if you're not keen on taking pain meds (which don't correct the problem...) try some alternative things.  Things like warm packs, ace wraps/binders, or stick-on heat patches can help.  Also TENS units (type of nerve stimulator ) can help.  You can get them at most drug stores and they are pretty easy and safe to use.  

Do take care and don't be shy about pushing your physicians. You deserve it.

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