Surgical Neuropathy After Flap Surgery

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Dejaboo
Dejaboo Member Posts: 2,916
edited June 2014 in Breast Reconstruction


I had my SGAP in 2009.  I have suffered from constant pain, numbness &
tingling for almost 5 years from my donor site. 

I have a huge area effected by this.  It starts in front about 6" in from
my hip bone & radiates all around my back.   It is 4-7" above AND below my
24" long incision.  it travels down my thighs.  While I have severe Pain in this area. I could stick
needles in my body & not feel a thing.

No Dr listened to my complaints of pain after my surgery.  I felt like I
was all alone.  Other Flap ladies said they never had that much pain after
surgery...It made me feel like an outcast without a support system.  I felt
that no one believed how much pain I was in.  I still feel that way.

Recently when researching Essential Oils...I came across the term Surgical
Neuropathy.  It described my Symptoms exactly!  Now, I finally have a name for
what I have.  It made me feel better just to know that. (it is not in my head & I am not a wimp)

Unfortunately treatment must be done for it very soon after surgery.  At
this point I do not feel there is anything I can do for it.

http://www.sciencedaily.com/releases/2010/09/100922111432.htm

Are there others who live with this Pain from surgery?


Combine it with my Lymphedema pain means 1/2 of my body is in constant pain, I am so tired of pain :(


Comments

  • cascader
    cascader Member Posts: 599
    edited May 2014

    I am so sorry that you are still suffering from this pain, but I am glad that you found a name for it, it is real. I have not experienced this myself, but I hope that you can find support from others in posting. Best wishes

  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited May 2014


    thank you very much cascader.  It made me feel better just to know someone was 'listening' to me  :)

  • SpecialK
    SpecialK Member Posts: 16,486
    edited May 2014

    dejaboo - my mom had widespread neuropathy from a combination of long term use of Methotrexate (the M in CMF chemo) for an obscure degenerative neuromuscular disorder, and other drug side effects and the disease she suffered from.  I am wondering whether any of the physicians you consulted suggested that you might get relief from Neurontin (gabapentin), Cymbalta (duloxetine) or Lyrica (pregabalin), or whether or not you have tried any of them?

  • besa
    besa Member Posts: 1,088
    edited May 2014

    Dejaboo- I echo Cascader's remarks.  Though I have not experience what you have I have absolutely no doubt that the pain you feel is very real.  I am sorry that you are dealing with this.  An idea about a possible source of information- the Science Daily article has a link to the original report.  The report contains an email link to the main author.  I have had success contacting author's this way.  Possibly they may be able to suggest medication options or the names of knowledgeable local doctors.  (If there is no response to your email all you have lost is a few minutes of your time.)

  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited May 2014


    Thank you SpecialK & besa.  No Drs have suggested any medications.  None have taken my pain as being serious.

    I have not seen a Dr or Surgeon for years though (well my PCP)   but no one from the cancer field.

    The medications all scare me.  2 of those meds list arm & leg swelling as a SE.  Id really hate to risk making my lymphedema even worse (my truncal LE causes me as much pain as my neuropathy) 

    And then all the other SE listed.  :(

    besa I will look into emailing the author of that report.

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