Donate to Heather for DBS Surgery for Anesthesia Dolorosa

My name is Sheena Sharapata and Heather and I have been connected on social media for several years through Trigeminal Neuralgia also known as the suicide disease. I have had 2 MVD Surgeries for Bilateral TN and the Occipital Nerve Decompression Surgery for Bilateral ON after being misdiagnosed for 18 years so I understand how difficult finding the right diagnosis, doctors and treatment are for these nerve conditions. She was very supportive when my face was red and swelling as a result of my steroid nerve blocks for my condition.

Heather has had two MVD surgeries for TN where her nerve was damaged resulting in AD Anesthesia Dolorosa where you body basically feels on fire all the time. Not many medical procedures are known for success with AD and Stanford recently has brought some hope through a DBS Deep Brain Stimulation implant surgery. Even through everything she has faced, she continues to be a light helping others in need online and through chat rooms searching for answers, knowledge and support.

With your help she can travel for the November testing and then schedule surgery for 2026. Her husband works two jobs, helps with their two kids and funds have been exhausted on her medical journey. These funds would provide travel and stay for both appointments at Stanford Health Care with Dr. Buch. Thank you!

Heather's Journey:

"I have been suffering from debilitating chronic pain for many years now, but the last few have been unbearable, inhumane even. I suffer from multiple neurological dysfunctions having multiple cranial neuropathy and anesthesia dolorosa. They have taken a very heavy toll on my body. I have unpredictable bouts of severe pain that makes every day living so unbearable. My skin and muscles feel like they’re on fire, I feel like I am having an electric cattle prod shoved on my throat, ears, cheeks, head, eyes, mouth, etc all day long. I can’t stop thinking about that pain b/c well, you can’t get out of your head … when the pain IS in your head.

I have already gone through nearly every conceivable form of treatment for these conditions, including multiple brain surgeries (MVDs), gamma knife radiation, ablations, immunotherapy drugs, long term steroids, acupuncture, ketamine infusions, steroid infusions, physical therapy, chiropractic care, nerve blocks, relaxation, psychotherapy, nutrition, rhizotomy, cold therapy, red light therapy, too many medications to count. Everything the drs can throw at me. My drs have told me that they’re at the end of the road as to what they can do for me, there are no more medications to try and I’m taking the highest doses allowed for the meds I take daily, and they believe my best chance at a relief from this pain is going to California to have surgery at Stanford.

I have spoken to several neurosurgeons at Stanford and they have all confirmed that they truly believe they can help get my pain down, DRASTICALLY. My daily living pain is an 8, on a scale of 1 to 10, IF I stay on top of my meds which are taken every 6-8 hours. The doctors asked me what was a realistic pain goal for me and I told them a 5; I think a “5” would be so much more bearable, but no. No, not these super gifted doctors, they said simply, “Oh, I think we can do a whole lot better than that!” I can’t imagine. I can’t imagine what a life with that little bit of pain would be like . . . I know I once had a life without all of this pain but when I try to imagine how it must have felt physically, mentally, emotionally, I simply can’t feel it. I can’t remember how to feel anything without pain anymore because it’s all I know.

Smiling.

I miss smiling. Smiling and being silly; making others smile and laugh. It was my favorite and now it is among one of the most painful things.

Trigeminal Neuralgia can affect people differently, some deal with it intermittently and some have it 24/7. Anesthesia Dolorosa is a beast, something inhumane.

https://www.youtube.com/watch?v=8F8yflGHTTk

My whole life has been put on pause, I feel trapped in my own body with no escape. I’ve been grieving the loss of my ‘old’ self and watching my life slowly disappear through chronic pain, severe burning and loss of functionality and mobility due to prolonged bed rest. Right now I feel like my face is on fire 24/7 as it's being electrocuted. Financially, this disease has taken a HUGE toll on my family. My husband is burdened with working two jobs AND taking care of the children. I can’t drive on my medications so I can’t help carpool and I feel miserable that I can’t help. I feel like a burden to my family. I’m not currently working, I don’t spend time with family, I miss weddings, birthdays, and funerals. It’s very disheartening to think I will have to live with this the rest of my life.

I began to have trigeminal neuralgia back in May 2020 . . . by May 2021 I’d developed anesthesia dolorosa, that’s how quickly my life changed. (I also have neuralgia in 5 other places of the head/neck now). In 2020 I had a full time job as the customer service representative at a christian boutique, I worked part time as the social media manager for a premiere print, marketing and advertising company. Meanwhile I served as the social media manager for my church while helping other small churches through creating free content & posters for them. I was an active volunteer in my capacity as a Court Appointed Special Advocate helping children navigating the foster system. I worked out at the gym every day, was always spending time with PEOPLE, doing life in community . . . and in my favorite roles as wife and mommy of a couple adoring kids.

Life’s not the same anymore. No, it’s nothing like it used to be. I sleep at least 18 hours a day, and I’m in bed approx 18-22 hours a day. I have muscle atrophy, hair thinning, I’ve gained weight, and I hurt everywhere. I can’t stand light, nor sound. I can’t even watch tv during the day b/c contacts hurt my eyes and glasses cause electric shocks. It’s not worth it. I don’t like to visit with people b/c talking hurts and it’s so exhausting. Just walking 20 feet to the restroom sets off my pain like mad, because my heart rate rising just a little can cause an influx in lightning bolts and pain from the trigeminal neuralgia and the anesthesia dolorosa. I lay on ice packs all day long and suck on ice & popsicles much of the day b/c my face is on complete fire now. You could literally feel the heat coming from my face by having your hand near me and the fire red color on one half of my face is evident without question. The side effects from all of these medications is tearing up my body. I really believe if I don’t get off of some of these medications by this next year that I won’t make it through the new year. I’m tired. I don’t know how to keep doing this. It’s too much on my body. The AD caused burning mouth syndrome so my mouth and tongue feel like they’re on fire without ceasing, so I no longer can taste things well and everything feels hot in my mouth.

We believe my last chance for a healthy and pain-free life (or life of minimal pain) is a special treatment at Stanford directly targeted for the specific pain I have. DBS surgery Deep Brain Stimulation Surgery.

To make this dream a reality, I need your help!

WHERE YOUR DONATIONS WILL GO? Any gratefully received donations would help to cover my travel expenses to stay at Stanford Hospital and/or any care received on my travels. Specifically the money would go towards covering a round trip for two passengers, a hotel stay, Uber, and a minimal cost for meals.

I am scheduled for an MRI, CT Scan, HST, QST, and clinical visit in November. Then, prayerfully be given the go ahead for surgery! I am ready to get my life back. I have held to the hope I have in Christ, but I was meant for so much more than just an ‘existence’, simply wasting away."

Heather Renee