I am THAT one!

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SusieQ264
SusieQ264 Member Posts: 5
edited January 2020 in Not Diagnosed But Worried

I have had the usual rollercoaster ride of signficant ups and downs in the last five weeks. Something on your screening mammo, let's do a diagnostic, then well, your previous films aren't good enough to cover (they were 2D) so let's just biopsy, but no "emergency." Second opinion at a major university hospital, yes, "Let's biopsy." I read these glorious women's remarks in this forum and I am inspired. I can do this! Except for one fly in the ointment, I am averse to all lidocaine. I discussed this with my breast surgeon and she suggests that I get the "formula" from my current dentist. (Yes, it is documented in the two surgeries that I have had elsewhere and by the fifth dentist in ten years who finally listened and does something else rather than lido and it WORKS!). And the radiologist blows me off and says, "Don't worry, I will load you up (with lido)." She waits less than a minute and then plows through. My calcs were very deep-- "several" inches-- and you can guess what happened. I vagal out on the second sample but fought like heck to stay conscious so they could finish everything...and they did. I have never felt more embarrassed and humiliated because I know what you all have suffered so much more and here I am, I can't bear the pain to get through this biopsy with dignity. I feel like a total failure and await the results so disheartened and terribly sad at all of this. How do you make people listen to you when you know what you will experience and they just chalk it up to "it is in your head?" The next steps might also be very painful, and I suppose I am asking for support and information on how to make people believe me?

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  • djmammo
    djmammo Member Posts: 2,939
    edited January 2020

    SusieQ264

    "I am averse to all lidocaine"

    Are you insensitive to the actions of lidocaine or are you allergic to lidocaine?

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  • SusieQ264
    SusieQ264 Member Posts: 5
    edited January 2020

    That is an excellent question, @djmammo! I have never had stitches in my 6 decades of life, but I have had a localized reaction during dental procedures, pain and swelling that mimicked TMJ, but it wasn't. I also seem to have severe nausea and lightheadedness. My one root canal was 28 shots of lidocaine that did numb for ten minutes or less. The oral surgeon suggested that I have an incomplete or underdeveloped nervous system (???) My spinal surgery, when they injected the local was to come out of MAC and basically try to stand up on the table. The radiologist was not pleased. My father also has these reactions. He screams the entire time during dental surgeries even when they twilight him. And yes, my children both have red hair. Any other anesthesia that I do have (Versed etc), the comments are always the same, "We had to give you A LOT!" I am thinking maybe the old days of a half a bottle of whiskey might do better for me.

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  • WC3
    WC3 Member Posts: 1,540
    edited January 2020

    SusieQ264: That sounds horrible! I can be lidocaine resistant and no one is touching me until I'm numb. Even when the lidocaine works it takes me a good few minutes to numb up and I will definately be that person and make them wait. The theory in my case is that my nerves aren't quite where they are expected to be.

    The secret for dental work on my lower jaw, mapivacaine nerve block and septocaine or articaine infiltration. Septocaine is articaine with epinephrine.

    If they don't listen, I am getting out of that chair.

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  • djmammo
    djmammo Member Posts: 2,939
    edited January 2020

    SusieQ264

    Have you tried or has anyone recommended nitrous oxide for dental and/or other procedures? Besides its euphoric effects it is a powerful pain killer. It is used in combination with other inhaled and IV agents in balanced general anesthesia for the purposes of preventing the perception of pain while asleep during surgery. They may need an anesthesia department consult to arrange it for you but it might be worth a try.

    Nitrous: https://www.ncbi.nlm.nih.gov/pubmed/3875237

    Lido resistance: https://www.bbc.com/future/article/20170106-the-people-who-cant-go-numb-at-the-dentists

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  • SusieQ264
    SusieQ264 Member Posts: 5
    edited January 2020

    I thank you for your replies! I had to laugh, WC3, because your formula for the lower jaw procedures is EXACTLY what I handed to the radiologist last week. I will keep trying to advocate for “We who can't be numbed." That is the hard part of being THAT one. All my natural life I suffered through procedures that most people don't feel. I thank you, DJMammo for your kindness and great problem solving skills. I am terrified waiting my biopsy results, but feel stronger and more affirmed that this isn't in my head due to anxiety. I will get out of the chair if they do not listen again! Thank you and God bless

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  • WC3
    WC3 Member Posts: 1,540
    edited January 2020

    djmammo:

    I've had nitrous oxide twice. The first time, I was 7 and having a tooth drilled down. They were completely unable to numb the tooth so they slapped the mask on me. I felt everything but was too incapacitated to do anything about it. That is the start of my fear of the dentist.

    The second time was when I had my wisdom teeth out. I can't breath through my mouth when they are working on me so I got too much NO through my nose, lost all senses except my sense of feel. A little voice in my head said "tell them something is wrong" and another said "wait for the commercial break". If I had waited for the commercial break I think I would be dead. I managed to say something and they took the mask off and the world came back. That is the first time I had articaine and it worked wonders. The oral surgeon did a nerve block with it though, which a dental anesthesiologist advised against due to the risk of nerve damage that it carries, which brought us to the mapivocaine nerve block with the septocaine or articaine infiltration.

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  • SusieQ264
    SusieQ264 Member Posts: 5
    edited January 2020

    Dear djmammo:

    I shared your article with my physician father, a founding figure at a nationally recognized hospital. He found it comforting but even more than that, I also believe it will cause a discussion amongst his board members for those of us who cannot be numbed. The difficult conversations that the medical field has often don't relate to the "THAT" one because we are rare and odd. I cannot express to you how very grateful I am for the information. I also wanted to let you know that I received my phone call. Benign Fibroid Adenoma and I think the lesson here for me is more about education and advocacy. You never know the reason you need to be where you are at any given moment, but you certainly gave me purpose and pause. I thank you so! Your thoroughness and kindness will be legend in our neck of the woods!

    S

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  • Runrcrb
    Runrcrb Member Posts: 577
    edited January 2020

    susieq264, back to the original post I’m sorry that the doctor performing the biopsy treated you so poorly. I’m not a big complainer but in this case I would write to the hospital/facility where the procedure was performed and explain how your input was disregarded. Breast cancer is hard enough without insensitive doctors. And if you find you need more procedures be sure to walk away from any doctor who blows off your concerns. For most of us breast cancer is an emotional crisis but not a medical emergency so you have time to decide on both the right treatment for you and the right medical team to treat you.

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  • SusieQ264
    SusieQ264 Member Posts: 5
    edited January 2020

    Dear Runrcrb,

    You hope that no one finds you foolish in your concerns about what you are going through, but I find that it is often the opposite. It took me 57 years of painful procedures to find the one person who would listen to me. I know that you are right. It is an emotional crisis, and it being that, I find myself not to have the strength to advocate for myself. I think, having just buried my sister-in-law who survived seven years of breast cancer treatments and having been her care giver for the last year and a half in her life, I was just emotionally wiped and did not have the fortitude to stand up for myself. I am learning that the most important decision in any medical situation should be mine. It was a painful lesson and now know that walking away is much different than running away. I will not have any more painful procedures until I see the actual bottle of local anesthetic. I also found a great breast surgeon who is willing to try something different to make it more comfortable for me. I thank you for you kindness and affirmation. God bless you for it!

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