In this series of 1, 2, 3, and now this 4th blog, I share the pain and agony, arduous process of desperately trying to find hope through yet another medical crossroad. The discovery then extraction of an infected tooth was akin to placing an entire 8 years of battling a serious illness into a 2-month window of broken shards of glass. The infection was discovered on March 16th and the first surgery consult on April 11th. The second surgery consult resulted in the surgical procedure on the same day of April 22nd. Two treatments with IV ozone BEFORE the extraction showed promise to end my worst symptom of convulsive episodes however the gains lasted 3 and 2 days, respectively. Then there were horrible complications after the tooth was extracted. The 3rd treatment with IV ozone yielded 4 days of reprieve and a considerable reduction in pain and inflammation of the gum tissue below tooth #19. We are now optimistic for what the 4th treatment will bring later today. I have had more better days in a row after the 4th infusion than in the past, well, very very long time!
It really looks promising that another direction towards healing has begun. It really looks like the extraction of two other infected teeth in 2015 then the craniomandibular treatments in 2018 are related to the current dental issues: they all relate to the innervation and bio-mechanics of the trigeminal nerve complex, particularly on the left side of my face. I suspect that there may be a vestibulochoclear component as well since certain noxious sounds can trigger a neurological event. Infection leads to inflammation; suboccipital constriction from the trauma of repeated seizure attacks clamps down on those inflamed nerves. Ongoing inflammation of the cranial nerves, including the vagus nerve, keeps me on edge and from getting well. The visit in Indianapolis tomorrow will include an osteopathic evaluation and treatment in addition to 10-pass IV ozone. Tis time for my entire cranio-sacral rhythm-and-function to calm the heck down, get straight, and fly right!
Did I tell you about the garden bed we were able to put together this past weekend? My body hurt like heck yet my spirits were lifted as I pursued one of my life’s passions: all things gardening. How poetic for me to be planting a new garden bed in the spring of this year, just when my body appears to be springing to new life? God is so good, Gentle Reader. He does sprinkle His goodness here and there even on our worst of days. And this past week we had a down-pouring of it, literally! The day after Steve and I pushed to get all of our veggie beds ready for planting, the heavens opened up with a day of soaking rainstorms. Like washing everything clean. Like nourishing the dirt for the newness of life to follow. Like paving the way to bloom where one is planted . . .
Two weeks, 6 Dental considerations, 10 prescription medications, numerous rescue remedies and supplements later, the complete resolution of a dental procedure remains in the distance! Perhaps you know the story here and here where I suffered with anguish then crawled my way into renewed hope with the extraction of an infected tooth. Yes, the tooth is out. And no, I am not convinced that the infection is resolved. Some goo came out 3 days ago and the gum is still somewhat inflamed. Pain is not yet resolved. How can inflammation go down when there is goo? No one seems to believe me that this nightmare is not yet over, that there is more that can be done to help me.
The struggle continues this night with a less-clear course of action from here. Dr. L, the oral surgeon, says everything is normal and won’t see me until a month from my call last week. Dr. K, the referring dentist who diagnosed me, says the medications prescribed are “strong,” what else do I need? Yeah, I agree they are strong and the side effects created 2 new symptoms! I don’t need stronger. I need a modification in my treatment plan! Dr. J, my medical Doc, says it’s healing epithelial cells that oozed out; use some anti-microbials topically. Already on it sir but one of them has inflamed my gums so I had to discontinue it. Oh and the antibiotic tore up my esophagus so I had to discontinue it too. Dr. R, the Biologic Dentist out of town, still won’t see me in this COVID-19 pandemic even though he is the one who has the procedures and expertise to clean up this mess. Then there is Dr. B: the one whose office WILL treat me with IV Ozone this week because hey, I am willing to pay for it. So it is to the office of Dr. B we will go for a systemic treatment of infection and inflammation. Lord willing, I am hoping it helps!
Lots of tears have drained from my face these past few days. I went 8 days with nary a convulsive episode then they returned as my intolerance to pain medication of any type progressed. I went off of icing 24/7 only to return to this treatment so I can sleep at night; it seems to reduce the risk for seizure attacks as well. But make no mistake: the cranial nerve complex in my face, predominantly the trigeminal nerve (teeth) and vestibulocochlear nerve (ears) on the left side are still inflamed. A sharp banging sound of my hubby pounding a board while putting together a raised bed triggered all matter of hell breaking loose! It was all I could do to slam myself down on the sectional before the episode of involuntary shaking, gutteral screams, flexion posturing, leg posturing then flopping, writhing, and finally weeping in exasperation. I was helpless. And I am really spent after years and years and years of this hell.
Somebody please figure out how to calm down these nerves in my face, k? Can’t some dental, medical or otherwise knowledgeable person figure out how to fix it? Will the Great Physician speak healing into my life soon? I know that healing will take time from the second tooth extraction procedure from hell. (The first was in 2015 with extraction of 2 infected teeth and virtually NO PAIN COVERAGE after the first day! It was just too much to bear.) The trauma of these repeated incidences of convulsive episodes, complicated/painful medical procedures, and waning compassion from the medical community create a type of Post Traumatic Stress Disorder. Each new procedure brings grief and tears as I earnestly try to work through issues of appropriate pain management and recommended treatments that my body ends up not tolerating. IT IS NOT MY FAULT THAT I CAN’T FOLLOW YOUR TEXTBOOK PROCEDURES PEOPLE!!! Welcome to chronic illness! Even when I do the work of researching everything and writing down what works for me, they really don’t care much past the initial service or consult. Dr. L changed one med then prescribed what Dr. L prescribes. ISN’T THIS PART OF YOUR JOB PEOPLE!!!
Looks to me like there is a subset of Docs within any area of practice that really doesn’t like a smart, engaged, researched female patient who is really trying to make your job easier. When I bring a list of questions and show it to you it’s because I am scared and don’t want any further harm than the illness or the potential procedure otherwise might bring. I am trying to make things easier on BOTH OF US. Please listen to me. Please bring your best to our appointment as I will too; I have taken hours and hours to prepare already. I am scared; please be nice to me. Please follow-up with me and allow me to participate in my care. I want to be YOUR BEST PATIENT EVER! If we are successful together then know that I will write your praises everywhere with a clear and compelling testimonial. Isn’t that worth something to you?
I wannabe well. I realize that I might not get to be well. In the meantime I hope at least to have some good moments beyond the medical crap that dominates my life. I fight for moments of normalcy every day despite chronic pain and numerous medical problems. It might be too much to ask for the Docs to want something bigger for me beyond the procedure he or she is rendering. I get it. You have lots of patients and a practice to run and can’t get bogged down with one more problem to solve. Well just maybe this is why you got into the dental or medical field to begin with some years back? Saving lives? Bringing cures? Helping people feel better? Something more than money and prestige must have brought you into one of the most respected professional titles on earth. You can do it Dr. L, Dr. K, Dr. J, Dr. R, and Dr. B. Let’s see you try a little harder for me.
In the meantime I will rest in the arms of Dr. GP, the king of surgery of the heart, mind, and spirit. One day I know that I will be whole again in Your presence. Oh dear Jesus, is this all there is this side of heaven? I’m just so very broken. Thank you for listening. Thank you for your provision in my life including the most incredible helpmate and love on earth for me in Steve. Thank you for the ability today to make a nice meal for us despite the pain and problems. Thank you for protecting us from the virus that is wreaking havoc on our world. Just thank you. JJ
Five weeks ago a new dentist discovered an infected gumline underneath my last tooth with a crown. (Today we discovered that the crown was failing and the tooth itself was also infected.) To remove it and biopsy it was recommended. That was easy to say but tough to accomplish. Dr. L was the 6th dental practitioner I considered who could largely meet my needs. He does complex cases in his office in addition to local hospitals. LH are restricting “elective procedures” unless they are life threatening. So sad when eating even pureed food was increasingly triggering convulsive episodes, multiple times per day. These often arrest my breathing. But that does not meet the criteria for an “emergency.” No prob, same story different day.
The consult and procedure today, all in the same visit, was very tense in the beginning. Finding appropriate pain management for me is complicated. I have screamed in pain for days after relatively minor procedures in the past when presc & OTC pain meds became new triggers of seizure attacks. Today I was scared when Dr. L said he doesn’t prescribe the one med (I found out and last had in an ER visit over a year ago) that works for me. I cried. What am I going to do? I grieved the trauma I had of those prior procedures and did not know what to do today. (Hubby Steve was unavailable to consult as he couldn’t come into the office due to COVID19 procedures.)
We figured out that it might be well into May before I could get this toorh safely extracted by any oral surgeon in an Indiana hospital. Wait another month? 2 months from diagnosis? Endure dozens and dozens more convulsive episodes already damaging my neck and back at a time when I can’t safely get that treated either? This is hell.
Perhaps it was the Lord who spoke to me as I sat there, to trust Him. Through tears I signed the rest of the consent forms. Later I woke up in very little discomfort; the “extra numbing” should carry me through the day. We picked up the 4 meds they gave to manage post oral surgery risks, the office having had Steve run to take the orders to the pharmacy when I was still “under.” This served to shorten the start of aftercare. (Delays were a nightmare in the past.) But the pain med was not the one of the two lesser alternatives I had selected today! Ugh. The med the Doc prescribed had triggered seizures in the past so I could not use it past the first dose. For the second time today, I felt trapped. I am pleased to report that the med has not resulted in an episode after 3 doses. Trying OTC pain meds hereafter.
So to answer the question of our dear friend Deb, “what did I have done?” is witness the faithfulness of our Lord, Jesus Christ to lead and care for the weary and sick. We have witnessed His power that is helping me endure this new complication of 8 years battling a serious illness. We were able to follow up with a Dental professional and skilled surgeon (equipped with the right office equipment) who I would have never met if Jane had not recommended him very recently; I only called Dr. L for the first time this past Thursday and the procedure was done today! We can testify to the blind faith and trust we believers must continue to exercise when weary from a long and difficult journey. We can submit to His plan and profess that our God will never leave us or forsake us and, in due time, will restore the years the locusts have eaten. Good things do come in due time. (The episodes that followed eating are gone!) We can profess at a time when our nation, our world is in crisis that the confusion, heartache, and seemingly lost time will not be wasted if we just keep our eyes fixed on Him. We can know that joy will come in the morning even when the day is cloudy, not suitable for take-off in the direction we thought we wanted to go. His flight plan will always be the best one when our Lord Jesus Christ is the pilot-in-command AND control tower. I hope I have done an adequate job at key stopovers to give Him the glory. He deserves it. He is so good!
And so is this crazy VitaMixed coconut cream, aronia berry, whey powder, mixed seed, and pinch-of-cocoa concoction I made last night, enjoyed just now. Ice cream anyone? 😉
After enduring hell on earth with dental professional #5 in my search for answers, I have decided to go another direction. Nine hours from now, my beloved hubby and I will be in the office of a new oral surgeon who will examine me and remove my infected tooth in the same visit. The procedure will include IV sedation in his office and not in a hospital setting. By this afternoon, we will be home and I will begin another process of recovery. The shutdown of “elective procedures” due to the corona virus which has delayed this procedure 5 weeks since my diagnosis will thus be overcome.
Lord willing, the convulsive episodes triggered by virtually every meal, even the pureed ones over the last week, will diminish. Will the episodes stop completely? Only my Lord knows the answer to that question.
We have been here before in: 1) 2015 with the extraction of 2 infected teeth (one of which had a root canal with a hidden amalgam) and 2) 2018 with the fabrication of specialized dental appliances by a Craniomandibular specialist. Both interventions brought significant gains however they did not fully eliminate the problems related to the trigeminal nerve complex on the left side of my face. Looks like there is another tooth involved. Looks like that problem is about to be extracted, i.e. it’s OUTTA HERE!
I am weary, Gentle Reader. I am concerned about pain management. I am concerned that while this procedure will solve an immediate problem, it will not stop the convulsive episodes that continue every day. Actually lately it has been multiple times per day: every night falling asleep is when they occur most consistently. My neck and upper traps are quite painful from the wrenching and rapid repetitive movements of the seizure attacks. Everything hurts in my broken frame. I have a headache every day. The mandated quarantine orders and fear of viral infection has kept us at home for most of the past 5 weeks. No Doctor, Chiropractor or Physical Therapy or Detox or IV Ozone treatments. What a crazy time in history to be chronically ill.
With nothing left to give, I submit the appointment later today to the will and covering of my Lord, Jesus Christ. Please carry me and my beloved this day . . . .
The weight of my world is heavy on my shoulders right now. To move forward (or to even make my way through the current burdens) seems too much to bear. I seek my Lord’s face, lie face down in front of His cross, and just hold on for dear life during the hellish parts. In fact, holding on, just trying to breathe was the most I could do yesterday afternoon.
The local oral surgery group that helped me in the past, finally decided to move up my appointment for a consultation. I need an infected tooth extracted ASAP. Once I found out that it could be contributing to the worst of my health issues, my focus sharpened on getting it outta there! But that is a tough goal to achieve when the world is shut down due to the coronavirus pandemic. Most dental and hospital services are shut down if deemed “non-essential.” The definition of “essential” seems to vary among various medical specialties, however. Three weeks went by after my need was identified; no one could help me anywhere in my state or the country unless I waited at least two months!
After an hour wait in the waiting room of the oral surgery practice, everyone equally spaced for social distancing and many persons donning some type of mask, I was led to a dark and cold dental suite. A metal tray table near me was covered with layers of sterile tools and surgical draping. The medical assistant had already screened me for COVID19 by taking my temperature, instructed me that a new panoramic xray would be needed because they couldn’t get my CD or thumb drive from my referring dentist to work right, uploaded the new pano, and begun to review the consent forms for a tooth extraction procedure. Say what? TODAY? This wasn’t just a consultation?
Five years ago another oral surgeon in this practice required that extraction of what would be discovered as 2 infected teeth, had to be done in a hospital setting. Dr. R didn’t want the liability and clinical risks of a seizure occurring in their outpatient office setting. We agreed and braced ourselves for a $10,000+ bill, out-of-pocket! Such is the nature of dental care when done in the outpatient department of a hospital these days. The procedure was successful and miraculously our medical insurance paid for everything! The drain on our household emergency fund was reimbursed. We were amazed! And many of my symptoms improved over the subsequent 6-8 months of healing. I also had fewer triggers of convulsive episodes as a result. That is, after one hell of an initial recovery process, with virtually NO PAIN MANAGEMENT due to medication side effects. That part was hell.
So flash forward to yesterday, when I knew that this new oral surgeon would probably need a reason to schedule the extraction sooner rather than later, if it couldn’t be done with a simple numbing procedure in their office. Some Nurse Practitioner thought it would be alright to do so even after reviewing my case on the phone a second time. Not! But I still knew that Dr. S would probably have to see a seizure to make this determination. I know. Every single type of healthcare provider that I have seen while battling serious illness over 8 years has not take me seriously until he or she sees a violent convulsive episode in-person. And even when the Practitioner does witness one, the clinical assessment of my condition varies widely. Would Dr. S believe me that jaw pain and an infection was in fact triggering seizures like they had in the past? I came into this appointment having had only 2 hours of sleep the night before, hampered by a 40+ minute episode in the middle of the night when unable to fall asleep. Just tap on my teeth buddy, I have a feeling that you will find what you are seeking.
Dr. S said that the new pano clearly showed evidence of infection. Then he examined and tapped on my teeth. The violent hell that ramped up thereafter prompted him to schedule an extraction in the hospital as soon as possible!
It all started with a little shaking then quickly ramped up into twisting/writhing movements of my torso, intermittent vocalization, head-banging, and desperate gasps for air. “Just breathe. Breathe in through your nose and out through your mouth,” was the broken record I heard from the voices around me like a thousand times before. I was able to blurt out not to touch me (for additional sensory stimuli makes the episodes worse) and that supplemental oxygen might help. They put an oxygen saturation monitor on one of my fingers and wrestled a larger cannula around my face. My eyes pulled shut and my photo-sensitivity kicked in from the uncovered window in front of the exam chair, burning through my eyelids. The Doc braced me from the right and had another staff person brace me from the left so that I wouldn’t fall off of the chair. My arms yanked inward to my chest in a flexion posture, typical of these episodes. My head rolled back then pulled forward again and again like dead weight on a pulley. Finally I was able to get enough respiration going to push out the words for someone to get my husband. “Have him bring the glutathione . . . . from a bag in our truck.”
Steve basically knows what to do to help me in these moments of crisis. But someone else putting a rescue remedy in my mouth for me usually won’t work well. If he misses and the liquid or pill or snack bar runs down my face then that light-touch sensation sends me into a more violent tailspin of seizing. I have to find a way to get my arms to work, to hold the medicine of sorts, and to get it into my mouth between waves of waking seizure attacks. It takes every bit of body scanning and mechanics, awareness of my surroundings despite the finding that my eyes won’t open, and numerous calculations to figure out how to get it done. It takes many failed attempts before success. Are my arms working again yet? Can I flex my trunk forward to put the TMJ dental appliance into my mouth since I can’t bring either hand to my face? We all gotta wait it out through my trial and error.
Initiation of movement worsens the episode at all points once it has started and even when finally nearing its resolution. If I employ whatever cognitive override I may have to grasp a bottle and squirt something in my mouth from my clenched fist slammed into my chest wall, there is often a price to pay even if I am successful. Initiation of active movement triggers another spike in the wretched involuntary posturing that follows. And it kills my neck! Then there’s the hemiparesis phenomenon: virtually always I either can’t move my arms, move my legs, or move some combination of either one. Trying to open my eyes too soon brings the sensation of glaring light that triggers a slam backwards again. The worst part is that I am awake the whole time this torture is occurring. Most people are unconscious during seizures. Not me. I am aware and feel and remember everything. And there is very little I can do to help myself. Guttural cries or grunts or fires of grief often explode from deep within me, sometimes yelling for the Lord’s mercy. There can be screams of terror. Tears drip from my eyes before most of these are over. The experience is a living hell. And they still happen virtually every day. For eight years!
The extra oxygen did nothing to help me. I wasn’t sure if it would help this time or not. There was a time in the early visits to the Emergency Room that pure oxygen calmed down the episode. Not today. The glutathione did reduce the velocity of the involuntary movements. The “waking seizure” transitioned to a pressured-type of shaking. Little breaks started where I could catch my breath and try to breathe in the O2 in from my nose as directed. But the episode wasn’t stopping yet. The area below my tooth was still stinging and I knew that the episode might not stop until the pain subsided. The tips of my toes and fingers burned. At home we had topical lidocaine, a numbing agent that my Craniomandibular Specialist in Florida had ordered in January. I asked for lidocaine and helped the nurse anesthetist figure out where tooth #19 was in my mouth. She didn’t know. The seizing slowed another notch. I struggled like an addict shooting up crack cocaine to switch out bite splints, hoping to take some pressure off of my jaw. Then suddenly, the hell was over. Eventually I was able to open my eyes. And all I could do was stare out there in front of me, or to nowhere, at nothing at all. Anyone think there is cranial nerve involvement in this serious illness? Mandibular branch of the trigeminal nerve? Yeah, me too.
The nurse needed consent forms signed for the tooth extraction to be scheduled in the hospital. Another 30 minutes later, I could move my arms and hands enough to manipulate a pen to sign my name. Over an over again, I worked hard to manipulate the pen. I had a little shaky spike. Eventually the papers got signed, I could sit at the edge of the chair, head to the bathroom for some supervised voiding, cautiously walk to the front desk, and leave the building as a beaten puppy. I was fried! And hungry!
I couldn’t wait to eat the food I had brought along with me while my hero, Steve, drove us to our next destination. I was faminshed. I had not had enough time to eat breakfast before the appointment at the oral surgeon’s office. Now there were more phone calls to make to set up my home healthcare that will begin this coming week. I needed to make arrangements for curbside pick-up with for essential and non-essential business we had to do before heading home. Life goes on and so do other aspects of my healthcare, my life. Steve had to get back home and back to work. Gratefully there were free plants in the mix as well. Maybe another time I can describe the score of free, cool-season flowers I acquired in exchange for a patch of yellow prickly pear cactus from our backyard . . .
No, it’s not all hell in my world. Yesterday there was much of it to bear though. Tomorrow will be better. The death of Jesus Christ on a Friday and His resurrection on a Sunday reminds me of this. One day, all suffering in this life will end including mine, including yours. Your sins can be forgiven, heart made whole, and hope restored Gentle Reader. Don’t bear suffering alone! I don’t. And I won’t no matter how much there is to bear. My Lord is the only reason I survive and in my spirit overcome the darkness of our fallen world to brain-dump here at 4:48 on a Saturday morning.