Deep breath. Now, where to begin?
It’s a long story, she says, and beings with explaining her future – who she is and who she is determined to become. Hannah Crazyhawk is a student of neuroscience with plans to pursue her PhD, an astrophysics enthusiast, freelance writer, falconer, Instagram influencer, and creative artistic force. That’s where she’s going, come Hell or high water –she’s certainly already walked through both and is still in the thick of it. Crazyhawk is diagnosed with the neuropathic chronic pain disorder Trigeminal Neuralgia, in addition to holding several other diagnoses. She’s survived massive trauma, died on the operating table, been displaced due to natural disasters, domestic violence, and undergone multiple operations. Yes, it’s a long story – especially for someone who’s only 35 years old.
Backtrack eight years. That’s when her TN symptoms started. Like many patients diagnosed with the disorder, she began by booking an appointment with her dentist.
“I had a lot of dental work done on the right side and root canals and fillings and all these things and the dentist didn’t know what was going on,” she says. “They would just do root canals and send me on my merry way, and it would get worse and worse.”
An endodontist finally made the correlation that although the pain was occurring in the dental region of the face, it was not associated with dental causes. Crazyhawk began exploring her symptoms and discovered Trigeminal Neuralgia in her search. She took that information to her doctor, who referred her to a neurologist. After 5.5 years, Crazyhawk was finally diagnosed officially with TN.
An MRI relieved arterial compression and on March 14, 2018 – Pi Day and the day astrophysics giant Stephen Hawking passed away, Crazyhawk notes – she underwent a microvascular decompression.
“I was so resigned and in so much pain, I was to the point of wanting to commit suicide. I had a plan to end my life,” she says. “I honestly hoped I wouldn’t wake up. It’s hard to say that … but, it makes you want to die. Either this will work, or I won’t wake up and go on to the next thing. I was just so resigned to it honestly, I felt out of hope and it was my Hail Mary.”
Under the knife, the offending posterior inferior cerebellar artery was found to be creating pressure on her trigeminal, facial, and vestibulocochlear cranial nerves. Because of this, Crazyhawk’s auditory function in relation to the 8th cranial nerve was impacted and contributed to her confused state when she woke from the operation. The memory is a blur, but Crazyhawk still can articulate well what she recalls when waking from the MVD:
“It was weird. I remember thinking that I had my neck broken. Because of the cage they put on you, it keeps your neck at a horrible position,” she says. “I remember thinking I’d been in a car accident. I was very confused, obviously. The surgery took several hours because of the other arterial things going on and I remember coming too and I had no idea how many different iterations of headaches I could have at once. The neck pain and I couldn’t move my head at all and pain where they put the screws into your scull. That was a halo of head pain and then the incision pain. It was really severe. Coming to and waking up from it, I just remember all I could do was think about my breath. The only thing I had strength to do was breathe and breathing and I’d just hold on to my breath.”
Crazyhawk was immobile for 24 hours and left the hospital after three days. Going home was another hardship all on its own.
Crazyhawk pauses thoughtfully as she discusses her mother who came with the intention to assist on the surgery, and she chooses her words with care.
“It was pretty horrible,” she says. “I asked her after the surgery, I said, ‘How do you feel about all this?’ And she said that the whole surgery – she told me recently even this month – she said ‘I can’t believe all that happened when I came to help you with your surgery. It was just, I couldn’t believe my child was having brain surgery.’ She literally said it was so painful for her to think that her child was having brain surgery that she couldn’t handle it. To be frank, it made me feel completely almost just minimized and diminished everything that I was going through and the monumental weight of having brain surgery. She wouldn’t acknowledge the fact of what it was. She was very cognitively distant. She was very detached and not supportive and was completely in denial of what her child was going through. She continues to be that for me and it’s really hard.”
Her MVD was the big one and although Trigeminal Neuralgia is the great debilitating issue in her life, it’s not the only disorder she’s facing. She knew what it was like to live with a chronic condition long before being diagnosed with TN – and how it impacts relationships. Crazyhawk rattles off her diagnoses: Occipital neuralgia, Fibromyalgia, rheumatoid arthritis, Chron’s disease, ankylosing spondylitis, hidradenitis suppurativa, Ehlers-Danlos syndrome, autism, postural orthostatic tachycardia syndrome, and complex PTSD.
“Being a chronically ill person and being as disabled as I really am has absolutely affected my dating life and friendships,” she concludes. “Friendships have dwindled. I have learned who my trusted friends are and they are the ones that still reach out to me … Especially going through brain surgery, you find out those people who actually do step in and step up to help you with meals and all those things. And then those other friends who you thought were your friends just fade away. It’s the ones who you don’t expect who actually step up and become amazing friends and people.”
She describes dating as “wretched” with a dismal chuckle. Crazyhawk has tried the online dating thing and though she says she always tries to be upfront about her disabilities, that sometimes doesn’t do much good in terms of retention. One boyfriend, she says, broke up with her over text stating that he couldn’t handle her chronic illnesses.
“He literally said, ‘It’s just one thing after another with you and your heart and I don’t want to be with someone like you,’” she says.
Of course, she notes, that was pre-COVID-19. She’s telling her story in the middle of the global pandemic and it’s taken her isolation to a whole new level – a topic which she shared in the Facial Pain Research Foundation’s article “Pain Through Pandemic.
Quarantine meant that universities shut down and students like Crazyhawk had to take their classes online. Multiple disabling disorders haven’t stopped her, so a global health crisis hasn’t stood a chance, either. Crazyhawk is earning a Bachelor of Science in Psychology and Art and is a research assistant in a neuroscience lab which focuses on memory encoding and retrieval. She plans on earning a PhD in neuroscience with a focus on adverse childhood experience. Going into this field holds personal significance for Crazyhawk due to her own journey. She scores high in the Adverse Child Experience scale – a method of evaluation which determines the level of traumatic events experience from ages 0-17, in addition to the stability of childhood environment (CDC, 2020).
“I suffered an immense amount of trauma throughout my childhood and am very interested in studying the grid and place cells in the hippocampus,” she says, adding that she plans to further home her specialized training to focus on dissociative disorders. “There is a huge spectrum that they need to further research. … I know I’m not alone.”
It’s not easy earning a degree in such a specialized field, but Crazyhawk’s determination keeps her going. She’s also always leveraging her knowledge to find the next best option to treat her multiple disorders. For TN, she says she’s tried a little bit of everything. In terms of medication, Tegretol was entirely unsuccessful and induced suicidal ideation. Her doctor put her back on Trileptal again, but she did not notice improvement for her TN type 1 and TN type 2. TN1 is associated with stabbing pain, TN2 is associated with a dull or burning pain (National Organization for Rare Disorders, 2016).
“Type 2 is the worst for me and it’s like a tooth ache and bear trap on my face. It’s pretty pathetic, my doctors just throw Ibuprofen and Tylenol at me and tell me to deal with it,” she says. “It doesn’t touch anything. I’ve tried narcotic pain killers. They work sometimes, yes, but they are not good long-term and there is also a great deal of troubles with doctors treating me like I’m drug seeking … they get really weird about it and refused to help me with that. I’ve had narcotics help me if I use them sparingly, but getting a doctor to help me is impossible.”
She’s tried acupuncture and says that massage has aided in her occipital pain. Hot and cold packs or hot showers are useful depending on the type of pain she is experiencing. About two or three times a year, Crazyhawk’s pain will become overwhelming and she will have to visit the emergency room to find relief.
Day to day, on a scale of 1-10, she lives with a pain level of 9. She also no longer experiences remission.
“I just act like I’m fine,” she says. “It’s hard.”
There is a semi-colon in her story. Recently, Crazyhawk had an MRI that discovered a very critical clue to the puzzle of her life: An osteoid osteoma. This type of bone tumor is benign and comprised of tissue which includes tumor cells, blood vessels to feed the growth, and osteocytes. Like an egg, there is a “shell” comprised of bone tissue which encases the central portion of the tumor called the nidus (Cedars Sinai, 2020). Another interesting factor about this discovery: Crazyhawk’s osteoma is resting on her Trigeminal nerve.
“It’s kind of a nightmare and I’ve been trying to see three neurosurgeons that keep telling me the same thing. We don’t want to touch it because, where it’s at, the stroke risk is so high I would probably just die,” she says. “That’s really frustrating and it’s in a really weird spot. So that’s really hard. I have a tumor, that’s great. I actually had people tell me when I was diagnosed with TN, ‘At least it’s not a brain tumor.’ Now I can say it is a brain tumor and it’s inoperable. ‘Well at least you’re not dead!’ That’s basically what people are saying.”
She’s also began addressing other diagnoses long left untreated. Her most recent diagnosis is Hidradenitis suppurativa. The condition impacts the skin by causing painful lumps beneath the skin which can form into lesions or create small “tunnels” beneath the epidermis (Mayo Clinic, 2019). The underlying cause of the disorder is unknown but believed to be associated with issue in the hair follicles, hormones, immune problems, or genetics (Mayo Clinic, 2019).
“They get so painful to the point where I can’t walk sometimes,” she says. “They are horrible and it’s been 35 years and I’ve been too afraid to say anything or show a doctor because of the trauma.”
This disorder for Crazyhawk has multiple levels and is connected to a childhood trauma in which she was severely abused. For this reason, she also is diagnosed with severe Complex-Post-Traumatic Stress Disorder. Although she has been getting care for the PTSD, she never reached out for help regarding the HS. After 35 years, she finally decided it was time.
“Finally, I got fed up and looked it up online,” she says. “I have a chronic fever between 100-101. It’s exhausting and I want to know why. … When my rheumatologist found out, he was very sad, but it was also very enlightening for him and he said this is a really big piece of the puzzle. ‘Your body’s attacking itself.’”.
She is going to be able to undergo reconstructive surgery for the impacted area and has been put on an autoimmune blocker chemo for the hidradenitis suppurativa, rheumatoid arthritis, Chron’s disease, and ankylosing spondylitis.
“I’ve been on it for 6-7 weeks and have noticed very minor, but marked, improvements in energy,” she says. “There’s no less pain in my joints yet. But, the energy and fatigue – I can do something for an hour! The pain in the lesions has reduced as of a week with about a 50-percent reduction. That is awesome. My skin has never been that clear.”
Although these developments are good, she says, it hasn’t been wonderful for her TN. The chemo makes the pain “angry,” she says. Crazyhawk did come up with another idea to help with the pain, though, she says with a smile in her tone.
“I shaved my head completely,” she says proudly. “I am bald as a preemptive strike against the chemotherapy, but also more so against the Occipital Neuralgia and Trigeminal Neuralgia. … I had hair down to my shoulders and I went to the barber and donated it to children with hair loss. It was liberating and it was just the most powerful thing for me to do and not care what people and society thinks. I’m doing this for me and my health.”
Since she’s shaved her hair, Crazyhawk says that her Occipital and neck pains have been substantially reduced. She also says that being able to have physical contact with her scalp has helped with headaches related to her craniotomy.
As always, Crazyhawk is looking for new steps in her journey with TN. She was recently placed on a new medication which is providing improvement in her symptoms. The medication, however, comes at a high cost and she currently pays out of pocket for all her supplements, so she is uncertain how long she will be able to stay on the medication.
Crazyhawk has also started taking anticonvulsants again after not including them in her medication regime for some time. When she was placed back on Trileptal, however, she began to notice an improvement.
“It’s helping a little bit. I’m very happy with it,” she says. “It’s helping by 25 percent on most days. That is a good improvement for me, and it’s been helping me have a better quality of life. … There’s no magic bullet, but it certainly is a wonderful prescription.”
Ice packs are her go to and she’s also started taking cannabidiol in the form of an oral gel tablet. Crazyhawk also scheduled an appointment with a new facial pain specialist, however, that meeting was delayed due to COVID-19. Crazyhawk knows the potential next steps in her treatment: Nerve blocks, Gamma Knife surgery, motor cortex stimulation. Because she experiences TN in all three nerve branches of the trigeminal nerve, she also is a candidate to address the issue at the root of the nerve itself. This makes her nervous, however, because of cases where the patient experiences anesthesia dolorosa. Though rare, anesthesia dolorosa is a deafferentation pain which can occur as a risk following injury to the trigeminal nerve (Elahi & Ho, 2014). She also is hesitant regarding surgery due to a recent experience in the emergency operating theater where she died on the table.
It was the strangest thing, Crazyhawk says, because both her gall bladder and appendix ruptured, and she went into septic shock. It wasn’t the sepsis that became most threatening, however. Crazyhawk had a bad reaction to the anesthesia used to put her under – an odd situation because she’s never had an issue in prior operations. Her tongue began to swell, and she went into shock. She remembers things simply became dark, and then she heard one of the staff telling her to breath. She came back to.
“I kept telling them I’m really scared,” she says. “I was awake much longer in the OR than I ever want to be again. I kept hearing them say things, increasing numbers. I felt the anesthesia coursing through my arm. It was freezing. Nothing was happening besides terror.”
Crazyhawk has an appointment scheduled with anesthesia before her next procedure to discuss what happened and plan for future operations.
Crazyhawk’s past holds many unanswered questions that how sway over her future. Yet, a passion to pursue answers continues to drive her to seek knowledge for both herself and for the betterment of others. It’s what led her to finding the Facial Pain Research Foundation.
“I hope that the research is continued, and more funding becomes available and it’s more addressed than it is,” she says. “And that there’s more options than just saying, ‘Here, have an MVD.’”
Crazyhawk shares her journey and the information she learns in a new form of outreach as an Instagram and Amazon product endorser. Companies send her products to test and review on Instagram. It’s a great way to find new avenues to help with her pain, share those options with others, plus it’s just a lot of fun. Her Instagram can be found at @hannahcrazyhawk and her website is www.hannahcrazyhawk.com. She additionally leads the Facebook group “Spoonie Warriors” where people with similar disorders can find community and safe place to talk about very challenging subjects, such as suicidal ideation, without judgement or conflict.
Hannah Crazyhawk’s story is ever-winding, one step after another, and she looks into the galaxy of her life and the synaptic galaxy of the human brain seeking answers for herself and others. She’s found the shining stars in the dark universe between, guiding her course from one day to the next. In this way, she’s found hope and inspiration from someone else who faced seemingly insurmountable odds and still looked to the skies with hope and wonder. Crazyhawk has always been inspired by the work and intellect of renowned theoretical physicist Stephen Hawking – and a sort of similar connection. Her MVD was performed on the day he died, remember? Like Hawking, Crazyhawk is someone who faces disability and an unknown future, yet still stars up at the sky with the sort of inquisitive wonder that marks a person whose determination outweighs whatever trials they may face. Her story’s a long one, and it’s not over yet. She’s keeping her eyes on the stars.
“However bad life may seem, there is always something you can do and succeed at. Where there’s life, there’s hope.” – Stephen Hawking
Author byline: Hanna Shae Smith is an award-winning journalist and daughter of a person with Trigeminal Neuralgia. She works as a research assistant for the Arizona Twin Project and studies psychology and global health at Arizona State University with a specialty in pain psychology. This story is part of the Facial Pain Research Foundation’s series “Facing My Pain,” which shares patient and caregiver stories to combat loneliness, increase awareness, and provide information and insights to patients and practitioners. If you are interested in sharing your story as part of this project, please contact Hanna at email@example.com.
Cedars Sinai. (n.d.). Osteoid Osteoma. Retrieved October 29, 2020, from https://www.cedars-sinai.org/health-library/diseases-and-conditions/o/osteoid-osteoma.html
Centers for Disease Control. (2020, April 03). Adverse Childhood Experiences (ACEs). Retrieved November 07, 2020, from https://www.cdc.gov/violenceprevention/aces/index.html
Elahi, F., & Ho, K. (2014, September 25). Anesthesia Dolorosa of Trigeminal Nerve, a Rare Complication of Acoustic Neuroma Surgery. Retrieved November 07, 2020, from https://doi.org/10.1155/2014/496794
Mayo Clinic. (2019, May 16). Hidradenitis suppurativa. Retrieved October 29, 2020, from https://www.mayoclinic.org/diseases-conditions/hidradenitis-suppurativa/symptoms-causes/syc-20352306
National Organization for Rare Disorders. (2016, May 18). Trigeminal Neuralgia. Retrieved November 02, 2020, from https://rarediseases.org/rare-diseases/trigeminal-neuralgia/