Timeline of Day 1 minor brain surgery to Month 12

Timeline of Physiological & Psychological Issues after my failed minor brain surgery (Radiofrequency Lesioning of Right Trigeminal Nerve). **It is very rare to have ANESTHESIA DOLOROSA and EXTREMELY rare to have it after a Radio Frequency Lesioning surgery.**



Day 1: SURGERY

1. Went in happy and hopeful.
2. Woke up screaming and begging them to stop. Jerked head away, felt the needle and burning in skull and face. Monitors beeping a lot. Then closed eyes, but still could hear and talk. Nurse asked if she should help move me and I spoke up that I could move myself and started to move my body from the surgical table to the gurney. (Leg touched metal on table). Everything was silent and no body said anything for a second. Then I couldn't talk anymore and body started spasming so hard that it felt like it wanted to fold into itself. Still conscious and trying to tell them to stop this (thought they were killing me again). Took breaks off gurney, wheeled down the hallway while trying to gain ability to speak and see. Around the corner, getting better, parked gurney, opened eyes, still struggling to speak. 6 around me (3 nurses-2 of mine and 1 from before), neurosurgeon, recovery floor doc and ? (probably anesthesiologist). 10:00 a.m. Able to speak right after parked. "It hurt! It hurt!" Neurosurgeon stepped forward concerned, "What hurts?" I clarified, "No the surgery! The surgery hurt so much. You hurt me too much." Touched forehead-could feel. Surgery didn't work. Watched him walk away and others dispersed. Horrific trigeminal neuralgia attack. Crying, rocking back and forth, worried nurses, but I reassured them I was fine. It was just an attack and I wanted to go home. Gave me a pain med and nurse said, "Most people this knocks them out (puts them to sleep). But it looks like nothing works on you." Asked if I could leave and floor doc said, "No! You JUST got out of surgery." Asked again and he decided they could monitor me for 20 minutes minimum. 
3. 10:20 started paperwork for discharge. Got husband, wheeled down to bottom floor. Left about 10:40, less than an hour out of surgery. 
4. Ice pick being shoved down ear, less ability to hear and fullness. Bad attacks of stabbing pains all around and in eyes, cheek, mouth. New stabbing and constant burning pains in lips and injection site. Numbness all over and pain as well. Depressed. 
5. Cough

Week 1: Sickness + WHAT is happening to me? 

1. Burning lips, slurred speech, can't taste much, emailed doctor and told to take aspirin. (No advil until 6 weeks post operation).
2. Numbness-can't handle wind, touch, talking, eating on that side, or really anything. 
3. Emailed neurosurgeon again about increasing, constant burning and pain. Told to take EXTRA strength aspirin. Severe depression. Surprised by horrific pain in same area of numbness. Confused as to whether this is just my body adjusting or the new me.
4. Constant pain spread as well as sensation of: 
1. Burning lips, part of tongue, below injection site, and in ear.
2. Stinging on tip of tongue and almost no sense of taste.
3. Front 4 teeth constantly being kicked in.
4. Lower jaw all being ripped out continuously.
5. Ice pick shoved down ear, pain down neck, up head, & by ear.
6. Worsening Trigeminal Neuralgia attacks. 
7. Still can't hear very well out of ear as well as imbalance and fullness.
8. Constant stabbing and aching pain that is unbearable.
9. Swelling and tightness. Feel like head is in a vice.
10. Feels like mouth is wired shut and when I yawn, cough, smile, or move even the slightest, I'm ripping some part of my mouth and face open.
11. Cough getting worse.
5. Went to Urgent Care
1. Told I have a Eustachian tube dysfunction and should get better after sickness. 
2. Steroids for cough and swelling (no ear infection, but swelling)
3. Told to call after 1 week if steroids aren't enough (because I explained my weak/over-achieving immune system).

Week 2: Sickness + Anesthesia Dolorosa = Slowly dying by torture

1. Cough spreading with daughter, husband and I.  
2. Unbearable, unrelenting pain.
3. Severe depression. 
4. The slightest touch, breeze, or movement is a deeper level of torture. 
5. Feels like I'm slowly being tortured to death.
6. Insomnia, nightmares, flashbacks. Have to pray through wake and sleep to get through.
7. When I cry it feels like acid running down my face. But hurts too much to wipe my tears.
8. Plan out 30 min - 1 hr for things like brushing my teeth because I cannot communicate with anyone after. 
9. Learning sign language and using my phone or pad of paper to communicate. 
10. Feel like I've been hit in the face with a truck and have Train-Wreck-Fatigue. Every decision I make is a balance of how much I do versus how much torture I will endure now and in the near future. 
11. Learning to adjust in different ways: Don't go outside. Block any slight breeze or someone's breath near me. Pillows so I don't accidentally turn over in sleep. Only eat soft foods (friend brought NutriBullet). Spread out talking to 10 min three times a day unless I went out (church). 
12. All dreams about death (and Satan laughing at me unable to talk). 
13. Side effects of medications are bad, but pains are worse.

Week 3: Maybe something is wrong and I'm actually dying???

1. Done with steroids and coughing worse (hasn't been a full week and still can't get in with family doctor).
2. Simply living is severely painful. Hurts to breathe, swallow, kiss, smile, yawn, sneeze, shower, sleep, or do any things at all. 
3. Ticks & twitches when pains are bad. Sometimes shuts my eyes and can't control it.
4. Things I used to do to cool my body down (lessen MS symptoms) now are too much. (i.e. ice packs on chest is too much because the coolness radiating off the packs make the pains more severe). 
5. Fever (didn't check temperature, but I passed out a few times. Husband caught me and covered me in ice packs so I could sleep. He thought it was my regular MS stuff plus my added sickness. He had a feeling we should go to the hospital but I told him I was fine and we would wait for when I had my 2 week follow up with the neurosurgeon. I also had a thought that I should go to the hospital and felt like I was almost dying. But I didn't care.)
6. 2.5 weeks post operation met with neurosurgeon. Feeling better than I had the 2 days before. (Not too hot, could walk, could talk a little (tons of pain), and not passing out). 






• Neurosurgeon kept repeating, "Your nerve was so bad! Your trigeminal nerve was so, so, so damaged. It was just so bad." 
• Showed paper of pains and he confirmed, "You have ANESTHESIA DOLOROSA and there are no more surgeries we can do to help you. Nothing more I can do for you." {This was supposed to be the first of THREE surgeries}.
• My fever was almost 103, checked my ear and thought an infection could be happening behind the ear. Sent to ER downstairs (wheelchair and attendant came to get me). 
• In ER for 12 hours. Found pneumonia, UTI, sinus infection, and possible meningitis. Cocky doctor in training wouldn't listen to me. Pushed and pulled several times for lumbar puncture. Unsuccessful (but kept saying how well I was handling it. 6th spinal tap = not that big of a deal). Had already been on IV antibiotics and by the time they could now do Xray lumbar puncture, I would have had them in my system so long it may not show up. Also treatment is the same for meningitis as it is for my other infections. 
• Admitted for 4 days. Told my mom I was fine (ER), but she came from Idaho to help. Good thing too, because Mike had walking pneumonia and intensive school he couldn't miss.

Week 4: Thank you Hospital and Mom and Friends and Family!

1.  Still fighting pneumonia. Visited with 2 neurologists and put on new anti seizure medication. 2nd neurologist said, "You know, we can't take away all of your pains." {DUH! I just want to be able to eat without a million knives, battery acid, sledge hammers, ice picks, fire pokers, grills, electrocution, and root canals on half my face being constantly administered. I'd take 1,000 knives, hammers, picks, pokers, grills and electrocuting shocks even. The first neurologist really does understand trigeminal neuralgia. My last 3 neurologists had no clue what it was, nor did they get the severity of pain. I have pushed through an incredible amount of pain in the past 19 years. Half of my life. None of it compares to this, especially anesthesia dolorosa.}
2. Mom helped and messages of hope and love buoyed me up. I still wanted to die, but there were breaks where I didn't. 
3. Slept sitting up for almost a month after leaving the hospital. Reduction in sinus infection (couldn't even feel, thought it was all AD) and coughing helped. Still a great deal of pain.

Month 2: I think I can, I think I can...

1. Hard to imagine living this way, but maybe it is possible to survive.
2. End of the month the pains are getting a bit better until visit to Utah.

 Month 3/End of Month 2: Mawwwige. It's what bwings us togever

1. Visited Utah for brother's wedding. More pain, stabbing, twitching, aching, increased ear pain. Ears popped for a few minutes on plane. Hurt more on the way back. Went back to pressure, pain, and not able to hear as well. More feelings of bugs under my skin or hair on certain parts that won't go away. Night time is worst. Regressing.
2. Trying different times of day to spread out many different medications.

Month 4: Baby steps!

1. Lips on fire has decreased (still always burn, but less severe)
2. Crying no longer feels like acid running down my face. 
3. Tips of back two teeth I can feel some (one top, one bottom)
4. Less burning on part by mouth (between chin and injection site), but now feels like bugs crawling under my skin or a hair is stuck. ? healing ?
5. I cry out or moan a lot less (night time is still somewhat unbearable). Better able to hide my pains. Twitch and wince less. Careful about talking/laughing/smiling. 
6. Started with chiropractor and massage therapist.
7. PTSD coming up (Xray for chiro)
8. Some depression lessening.

Month 5: Is that SUN I see?

1. MINIMAL pains in morning. Sleep is vital and somewhat better. 
2. Part by ear gets cold now when I drink something cool. (more cold there than in my mouth)
3. After 5 or 6 pm the unbearable levels return. (Root canals on 10 teeth, wretched ice pick in ear and down neck, always need to "pop" my ear, trouble hearing, bugs under skin, unquenchable fire with knives and electric bolts.)
4. Thyroid the most inflamed it's EVER been and has attached to surrounding tissues. Increased selenium. Nodules stabilized. Monitored regularly, but no regular biopsy needed for now. (Swallowing still an issue, but not as bad)
5. I can talk a little more!!!
6. Feeling more okay about living. 

Month 6: I can DEFINITELY do this. Halle-FREAKIN-lujah! 

1. Part by my ear still gets a bit cool when I drink, but not AS cold!!! 
2. Ear finally popped. I can hear, but I cannot hear as well as I could before the surgery. New me?
3. Sleeping better (still pain).
4. Continuing with massage therapist and chiropractor. 
5. Mornings are actually decent!!! Able to drive to my appointments sometimes!!!

Month 7: Pain, Pain GO AWAY, never come back another day!

1. Pains returning too much. Much like month 3 or month 2 minus the acute illnesses. (Had the beginning of a sinus infection, but was thankfully wiped out quickly). 
2. Shaking a lot more
3. Increased anti-seizure med with side effects (off balance, bad vertigo/dizziness, worse fatigue, incredible nausea at night, and more depression), but NOT the relief from pain. 
4. As nerves heal, MORE pain is returning. Feels like 1/2 my nose is broken and when I brush my back teeth it feels like scraping exposed nerves.
5. More trouble swallowing. Clearing throat all the time (narrowed breathing). Feel like I'm eating and swallowing rocks.
6. Body pillow to train body to sleep on back. (Formed issues because I can't change to right side like I used to (right hip, left shoulder).
7. Short sinus infection.

Month 8: Bless you and curse you anti-seizure meds! Intolerance

1. We had to increase one anti-seizure medication and I'm feeling all the negative side effects without the benefit of reduced pain levels. Struggling more and more. 
2. Constant feeling that my mouth is wired shut, my head is in a vice, ice pick in ear, swallowing rocks (and some that won't leave), elephant sitting on half my face, 1/2 broken nose is more annoying, swelling on both sides of face under my eye, when I yawn it feels like half my face is splitting open. Stronger sensation of jaw yanked out, root canals on half my teeth, kicked in front teeth. Can't easily drink cold anymore. Returning to eating softer foods most of the day. 
3. Severe nausea and dizziness has greatly increased. Vision darker. Anxiety and depression worse (situational most likely, although I do wonder about the increase in Carbamazepine). Worsening memory (names, word choice) and off balance.
4. Can't feel feet for 7 days or hands for 2 after walking to get daughter from bus stop. Also stressed with husband's surgery. Pains worse.

Month 9: Surgery, surgery, I hate surgery

1. Fatigue, anxiety, stress heightened as Mike tries to recoup from his surgery. He is not recovering as expected. 
2. Started to get more energy. I was careful in how I used my time and energy. Weather starting to cool off, making it a tad easier to move. 
3. Side effects of memory worse, but other side effects seem to be lessening slightly. 
4. Partial feeling returning to severe burning section by mouth/chin/inscision site, as well as two back teeth. 

Month 10: Sugar anyone? Surgery #2, please!

1. Eating sugar to the extreme. But, fun parties for my daughter and all the planning and exertion were worth it. My body was angry, but emotionally it was nice to have a tiny, tiny portion of my old self back (planning parties is def one of my "things"). 
2. Feeling back in two teeth. Feels like I'm constantly eating rocks (that limbo stage when you've visited the doctor and are only getting back a tiny bit of feeling, and everything feels exaggerated and harder/bigger than normal...but this is worse than that. ha)
3. Fall or Autumn lasted about a week. It was glorious as long as the wind wasn't blowing. The cold, however, aggravates my ear pains (ice pick shoved down ear). Winter is basically here and while it used to be great for my MS, it is making AD/GN/TN/ON worse.
4. My left side pains are breaking through my anti-seizure meds and it worries me that my MS is eating away more of that trigeminal nerve. =( Often left side is worse than right side with TN specifically.
5. I wake up every morning (and in the night) with really bad pains in my left ear-especially behind just like my right ear after the surgery. Ask neurosurgeon- GENICULATE NEURALGIA OR NERVUS INTERMEDIUS NEURALGIA. This is even more rare that TN or AD. Not even figures for how RARE this is! Yes, I have it. 
6. Met with endocrinologist. Each time I met with endocrinologists last year my thyroid kept growing. Cut my thyroid meds in half when I was eating WFPB because I went HYPERthyroid instead of HYPOthyroid for about 2 decades. Visit in March 2017, said thyroid was the biggest it had been and was now attaching to surrounding tissues. All they could do was high doses of selenium. Now even bigger issues (compound issues- trouble breathing and swallowing, sometimes hoarse voice, always feel like rock is in my throat won't go away- issue for a year, but much worse the last 3 months. I thought it was due to my surgery. No, two separate issues). Talked for 5 min with endo because she HIGHLYYYYY recommended I have surgery to remove my thyroid. Doesn't recommend very often, but my compression issues are too bad. Cut out gluten and dairy (inflammatory, as is refined sugar). 
7. I'm getting awesome at not flinching and breathing through the pain. For the most part the AD pains are bearable. It's the TN that comes out of the blue or the GN that are tougher. Still WAY better than the first few months after the surgery. 

Month 11: 

1. FIRST day of month 11 and a part of my tongue isn't numb. I was able to taste something spicy on the right side of my mouth! I even chewed a tiny bit on that side. Still exposed nerve feeling on teeth that have feeling back. I even caught the taste of the nasty anti-seizure med that got lodged down in the gums on that side. I could feel it sort of! So a part of my gum is coming back too. Still can't taste very well, but I never really have been able to...so, not that big of a deal. 
2. MS relapse (Cognitive issues the worst)

Month 12: 

1. Small part of my cheek is not numb. The severe feeling of exposed nerves on back two teeth is better.
2. More used to feeling of bugs crawling under my skin by my ear and mouth/incision site. 
3. Smells for the first time in life?!?
4. Sleeping schedule all over the place
5. 3 times part of my shower I didn't even think about it. Didn't have to concentrate so hard on getting through it.
6. Cold/Flu, asthma worse but not nearly as bad as daughter and husband's sicknesses. (I didn't get their versions and was the LAST to get the sicknesses instead of the FIRST).
7. Geniculate neuralgia isn't just because of the cold. I learned it is the drastic change in air pressure and temperature change that really increases the severity and frequency of pain.

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