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Stuck on trigeminal nerve damage diagnosis. Need wisdom.

Discussion in 'Support Subforum' started by Sterling, Jun 16, 2022.

  1. Sterling

    Sterling Peer Supporter

    Hi all.
    In 2017 during a long period of extreme stress and anxiety, I had a root canal done that was badly botched. The molar was cracked and the dentist didn’t see it. He also over tooled one of the roots and the filler extruded at the tip of the root close to the sinus.

    Within a few hours, the right side of my face was swollen and bruised, so a visible injury almost immediately. There was gum burning at the site and within a few days burning along the cheekbone and all the other symptoms of nerve damage. The eventual diagnosis was post traumatic trigeminal neuropathy due to sodium hypochlorite leak in the tissue (basically a chemical burn). The tooth got extracted 2 months later.

    Into 2019 I was having better days as I started to re-engage with life despite the sensations. Early 2020, I thought the nerves had healed because it felt so much better…but SI joint pain and plantar fasciitis were excruciating to the point I thought I’d end up in a wheelchair!

    Then, kidney stones! After kidney stone surgery in May 2020, the trigeminal neuropathy flared up like crazy and for the past 2 years, other than a few ok days/hours here and there, it’s been like it was at the start and spreading across the cheek, nose, chin started tingling last year, back of head, neck all on the “ injured” side.
    Naturopath thinks it’s due to trigger points and menopausal hormone fluctuations.

    I’ve been on high alert constantly because of pandemic, isolating, trying to stay safe plus relationship stress.

    Interestingly, when it gets too bad, Ativan (a benzo anti anxiety) drops the flare down enough.

    Basically, I’m having a very hard time getting past the fact that I did have an injury and the neurologists’ edict that nerves sometimes don’t heal correctly after an injury and will continue to misfire pain signals, or that maybe something happened during kidney stone surgery to screw things up, like intubation irritating the nerve.

    The cheek also gets very red and others notice some swelling when it’s really flared up. Does TMS do that??

    My TMS evidence:
    Pain moved to different part of body for a number of weeks
    It came back to face after kidney stone surgery but SI joint and foot pain went away
    It waxes and wanes, spreading along the various branches of the trigeminal nerve
    Anti-anxiety med drops flares down to a more endurable level (gabapentin with cymbalta worked for a short time but had to stop due to side effects)

    Any words of wisdom re actual nerve injury and TMS?
    Last edited: Jun 16, 2022
  2. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    vague assertions like this = TMS

    Check out profile stories for @TG957 and @miffybunny (who you might have already encountered). The short answer to your question is yes, absolutely. Their stories will show you that it's possible to recover from inflammatory (and named) conditions that produce redness and heat and obvious swelling - using mindbody knowledge and techniques.

    Also check out Nicole Sachs, LCSW for her description of quite horrifying mouth issues that she endured - and that turned out to be TMS.

    And if you haven't already, I highly recommend that you read either When The Body Says No: Understanding the Stress-Disease Connection, by Gabor Mate, MD, or The Anatomy of Hope: How People Prevail in the Face of Illness, by Jerome Groopman, MD. Both of them are wonderful, compassionate writers.

    The thing is, you need to understand that the stress of emotional distress and repression can absolutely have a real effect on your physiology. It is already well-known in much of the traditional medical community that the difference in recovery rates from illness, injury, surgery, and treatments depends upon the psychological outlook of the patient (Jerome Groopman addresses this specifically in his book - he also briefly mentions Dr. Sarno's work).

    Understanding this is very difficult for some people, and even scary for some. I've seen people on this forum vehemently reject, for example, Dr. Mate's book, because it scares them too much (whereas I found it inspiring). Such people are always the ones who are still struggling - unfortunately, rejecting knowledge due to fear means they will never progress. So even though you might find this knowledge frightening, I really encourage you to embrace it.
    TG957 likes this.
  3. Sterling

    Sterling Peer Supporter

    Thank you for taking the time to reply. Much appreciated.

    I have Dr. Mate’s book ad well as The Body Keeps the Score. I’ve been thru many psychotherapy sessions to deal with childhood trauma and difficult adulthood situations. Have done lots of journaling and Dr. Schubiner’s Unlearn Your Pain exercises. Little of that resonates with me because I’ve dealt with past trauma and I don’t tend to repress. Basically, I believe I got it all out.

    I do feel hopeful when reading the stories of the members you’ve mentioned but as you can tell, fear is a big one regarding this pain. Therefore, after I posted , I contacted Alan Gordon’s Pain Psychology Centre and will start working with one of their coaches. After trying on my own, I need some help :)

    Thank you so much for your feedback and wise words.
    JanAtheCPA likes this.
  4. Polly

    Polly New Member

    HI @Sterling. and great reply from @JanAtheCPA

    Personally being in a similar situation to you I think that your Tms evidence is incredibly strong. The way I see it is that there is absolutely no firm evidence that there is nerve damage and so many people with incredibly severe symptoms (which could be explained by medical reasons) have recovered using the TMS approach. I know that my only route out of this is using this approach and thus every day I will listen to a success story where someone has healed from this to keep my faith strong. The minute my minds starts questioning whether it is nerve damage I firmly have to remind myself that there can never be any medical evidence of this and dispel the question.
    Re journaling - I have had an incredibly blessed life thus thought I had also journaled away my issues. i still keep doing it every day and probably 1 in 6 times I will uncover some issue that I thought I was fine with. I also think journospeak daily will keep the nervous system smooth so that any issues are dealt with daily and not topped up again.

    I kind of force myself to believe its TMS as its keeps me mentally positive and gives me the belief I will heal. What i do know for sure is the minute we think we have nerve damage and will never heal ( as all the specialists told me) - we will never heal as we are giving our body that message not to mention the spiral of despair and depression it sends you into.

    So as Nicole Sachs says - if you don't believe in TMS borrow her or someone else's faith that it works because it has healed so many people.

    Great that you have contacted a coach - sending you positive healing vibes. Much love x
    JanAtheCPA likes this.
  5. Sterling

    Sterling Peer Supporter

    Hi Polly
    Thank you so much for your words of wisdom and encouragement. As I said to the Centre’s intake worker, my head has grasped TMS, but it hasn’t reached my heart yet,
    so Thank you for that quote from Nicole. I need to revisit her and borrow my faith from you and the many others who’ve healed.

    I hope to be able to share hope and wisdom some day too. This may be the live purpose and meaning I’ve been searching for a few years now.

    Much love to you as well :)
  6. Polly

    Polly New Member

    @Sterling Many cultures treasure pain as it a tool for self growth. we in the west don't. I am so not hippy dippy and i kept asking my face pain what it wanted to tell me ( but not really believing this would work.) it never gave me an answer. Today it did give me an answer - telling me I needed to love myself more. I am beginning to almost be grateful to the pain for teaching me life lessons (from journospeak) but it's taken a year to feel this ( and obviously I don't feel this most the time!!) There is a reason you have this - it just hasn't yet been revealed.

    When you are having doubt Listen to a Nicole Sachs success story podcast or read one on this forum. it s the only thing that has kept my Tms faith so strong

    Thank you also for your support - it means a lot to me too. BTW I'M 49 and in London! Just realised my profile is pretty anonymous.
    TG957 likes this.
  7. Sterling

    Sterling Peer Supporter

    This “face thing” has definitely put me on some kind of spiritual path. I’m very logical, practical, rigid thinker and rules-based (the quintessential TMS personality) and not hippy dippy either but this has opened me up.
    I’ve had the same conversation with my trigeminal neuropathy and the most obvious metaphor that comes up is my not wanting to face things. I don’t know….I did get an insight though…that my body was telling me (or my brain) to ease off, give it a break from the anxiety, overthinking, etc.

    Yea, I’m nowhere near grateful yet

    During my meditation time tonight, I’ll definitely revisit Nicole’s success story.

    BTW, I’m 59 in Ontario Canada.
  8. TG957

    TG957 Beloved Grand Eagle

    In my opinion, this is the key to TMS healing. Logically, I understood TMS quickly and it made perfect sense. Not until l had my TMS knowledge in my heart, or, to be precise, deep inside my nervous system, it started to work for me.

    Also, I believe our very own @plum had a misfortune to experience trigeminal neuropathy. I think she had it for years but was able to successfully overcome it. Look for her posts! Good luck to all of you!
    Sterling likes this.
  9. TG957

    TG957 Beloved Grand Eagle

    This is very true. I get numerous questions from someone on this forum who does not want to read posts here because reading those give him flare-ups. Thank you, @JanAtheCPA , you likely gave me the explanation to why this person keeps making one step forward and then two steps back!
    JanAtheCPA likes this.
  10. Sterling

    Sterling Peer Supporter

    Thank you. I did find Plum when I first joined and I revisit her story often for inspiration.
    I also get much inspiration from you and Miffybunny as well as the trigeminal neuropathy is spreading from original injury site and is acting a bit like CRPS even though that’s not what it is.
    I’ve started to do what Polly has been doing: feeding my mind and hopefully my heart with success stories.
    I’m so thankful to have found this site with so many supportive and wise members.
    TG957 likes this.
  11. TG957

    TG957 Beloved Grand Eagle

    You may want to check out our web site www.defeatcrps.com and all the resources we list on it.
  12. Sterling

    Sterling Peer Supporter

    Thank you. I went thru it all after watching your interview. I go back to it every so often and I’ve shared the link on Twitter when I’ve seen people post about their CRPS. It’s an invaluable resource!
    TG957 likes this.
  13. TG957

    TG957 Beloved Grand Eagle

    Thank you! Please continue spreading the word!
  14. Sterling

    Sterling Peer Supporter

    I will for sure
    TG957 likes this.

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