Help Tessa return to doing the work she loves
Donation protected
My cousin Tessa and I were born 6 days apart and we've had a special bond ever since.
Recently we've shared many fun adventures together (running our respective businesses, mini-golfing and waffles on our birthdays, building gingerbread houses, etc) and now we're up against a tougher challenge.
For the past 2 years, Tessa has had to deal with debilitating health issues and now faces brain surgery to hopefully relieve her pain.
Currently, she's almost unable to eat and drink and is no longer allowed to drive. Brain surgery is a massive challenge and we're asking for your help. Thank you in advance for supporting her in any way you can.
Would you be willing to make a donation? Every penny will help.
How did we get here?
In July 2017, Tessa started experiencing excruciating electric shock pain in her jaw that would occur on and off with no warning. After almost two years of excruciating pain, countless doctor’s appointments, meetings with specialists, failed attempts at a diagnosis and trips to the ER, MRIs, CT scans, she finally has a diagnosis - Glossopharyngeal Neuralgia. It’s a rare condition, with less than 1 case reported per year among 100,000 people in the U.S and after trying all non-surgical options, her final option is a costly surgery.
In its current state, the condition is robbing Tessa of her livelihood. She’s been in near constant pain since mid-January which makes it almost impossible to do her job, let alone live and survive the rest of life. Normal activities like eating, swallowing, sleeping, crying, bending over, lifting anything or engaging in any activity that would cause increased bloodflow cause extreme pain. Even changes in temperature, cold drafts, or walking around the neighborhood can painful if the weather isn't just right...and sometimes, even then, just the pressure of walking and the vibration of her foot hitting the ground, causes too much pain.
As her cousin, I can tell you that nothing has come easy for Tessa. Life has thrown a lot at her (car accidents, broken back, her dad’s recent spinal cord injury, etc) and through it all she is persistent, driven and extremely dedicated to her work. She’s been working tirelessly to get her MFT and the Board of Behavioral Sciences just approved her 3000 hours, meaning she is able to sit and take her Clinical Licensing Exam to be Licensed Marriage and Family Therapist.. She specializes in eating disorders and has been actively involved in the eating disorder recovery field for years. She is extremely passionate about helping her clients discover and connect to their hopes, values, passions, and interests outside of the problem, and support them in re-(dis)covering what their “anti-eating disorder” life will look like.
It’s been exciting to be building our businesses at the same time and it’s heartbreaking to see this condition get in the way of her life, her impact at work and her vision for her business. I want to do everything I can to support her getting back on her feet and going back to the work she absolutely loves doing. Thank you for supporting her in any way you can, every little bit helps.
The road to a diagnosis
Tessa has been through the unimaginable across the last 2 years to try to fix the issue including:
- a root canal
- nerve block injections
- multiple CTs, MRIs, and X-Rays
- molar extraction
- countless prescriptions
- numerous ER visits
She’s visited 10+ specialists and been given multiple incorrect diagnoses.
I flew down last minute in May of 2018 to stay with her after she’d been in the ER 6 times in just a few days and couldn’t eat or drink. I drove her around to multiple appointments and specialists and witnessed the completely erratic and excruciating pain she was going through.
Recently she’s discovered that not only does she have Glossopharyngeal Neuralgia, but she also has 3 other cranial nerves that are being compressed so she will be needing surgery on all 4 cranial nerves.
What has been so hard about this is that the condition is so rare that no one knows about it. Even once she was able to see Neurologists and Neurosurgeons, she was still unable to be properly diagnosed. It took her own research and advocacy and continued efforts to fight for proper care and for someone to listen to her to find a doctor to help.
What is Glossopharyngeal Neuralgia (GPN)?
Glossopharyngeal neuralgia is a compression of the ninth cranial nerve and causes extreme pain in the back of the throat, tongue or ear. Attacks of intense, electric shock-like pain can occur without warning or can be triggered by swallowing. GPN is a rare disorder, with less than 1 case reported per year among 100,000 people in the U.S.
The pain can last for a few seconds to a few minutes and may return multiple times in a day or once every few weeks. Typical triggers often include eating, drinking, swallowing, speaking, sneezing, or coughing.
If left untreated, glossopharyngeal neuralgia can worsen, causing longer, frequent attacks of excruciating pain.
Often there is no apparent cause for the condition and there is no cure.
What it’s like to live with GPN
For Tessa, the pain occurs as sharp, stabbing, electric jolts, and constant burning, like a blow torch at the back of the tongue that spreads into her inner ear and jaw.
Both forms of pain intensify when she:
- Eats
- Chews
- Swallows
- Talks
- Laughs
- Smiles
- Bends over
- Cries
- Moves her head
- Any micromovements of her tongue
People with this condition may avoid eating, drinking, or chewing because they fear that these activities may trigger a painful attack.
To try to understand what it’s like to live with this pain, imagine:
- Being burned by a blow torch from deep inside the base of your tongue, and the searing pain burning and spreading through the inside of your head into your inner ear. Imagine each movement of the tongue feeling like you have been shocked by lightning.
- Trying to stay still because even just the slightest movement triggers another jolt of electricity shooting through your face.
- Even just staying still, the burning remains, with sparks bouncing about, like a live wire.
- Not being able to bite, swallow, talk, laugh, cough, bend over, tilt your head down without pain increasing.
- Fighting to smile and talk through the pain because that’s what you have to do to remain in the world.
- Every time you tried to eat, needing to mentally prepare yourself to fight through increasing pain, because you know your body needs food.
- Being afraid of making plans because you don’t know if you will be able to talk or eat that day, and also not sure how much energy you will have. Or how present you can be when the pain threatens to keep you distracted from the conversations and relationships you love and want to be engaged and connected to.
- Living with the fear that the pain will not end. That the life you love may not be the same.
You can also see this woman’s experience of living with GPN
(a note from one of her clients)
What are the options?
There is no cure for GPN. The options are either medications (anticonvulsants, antidepressants, and anesthetics) or surgery. Tessa has tried every medication and they both make it impossible for her to do her job and are only somewhat effective at relieving the pain. Surgery is required for any chance at long-term relief.
Tessa has not made this decision lightly as surgery may lead to loss of sensation in the mouth, tongue, or throat, but it’s her only chance at long-term relief from the pain.
The surgical procedure is Microvascular decompression and it’s performed under general anesthesia. The surgeon will make an incision behind the ear on the side of the head where pain occurs. He or she will remove a small piece of bone from the area and isolate the nerve. A small Teflon sponge will be placed between the nerve and the artery or vein that is compressing the nerve. After the procedure is performed, the surgeon will replace the bone and close the incision.
Microvascular decompression has the highest initial and long-term success rates so we’re hoping for the best. It is effective in about 75% of cases and yields a lower rate of pain recurrence.
Tessa will be in the hospital for 5-7 days and once discharged, and will be required to stay by the hospital for an additional 2 weeks, in case of post-op complications. Her total recovery time from surgery is an estimated 6 weeks from the date of surgery.
Initially, Tessa had planned to be out of work for 7 weeks, however, when asking for accommodations at her job, for 6 weeks prior to the surgery, Tessa was placed on unpaid leave by her employer. She now faces an unexpected 12 weeks without work or pay.
How the funds will help Tessa
Anything you can donate will be greatly appreciated. The funds will be used to:
- Offset the burden of copays, medical bills, and the surgery (already $2000+ before the surgery)
- Cost of living for two months (rent, groceries, etc is ~$2500/month)
- Airbnb for her family for the several weeks she has to be down in Anaheim before, during and after the surgery ($3000+)
- While on leave she’s still expected to pay her monthly insurance premium ($500/month)
- Plus all the other hidden expenses she has no way of preparing for (which are already popping up left and right)
Tessa absolutely loves her job and wants to keep doing it, but the illness is preventing her from doing that and being in life. The pain is debilitating and without this procedure, she will live in constant pain, where she can hardly eat or talk or smile or laugh or swallow or teach yoga. There isn’t a cure but this surgery is her best option and hope.
Thank you so much for taking the time to read this as it’s always hard to ask for help. Even if you can give a few dollars or can share with your friends, family, and network–every single thing helps.
Recently we've shared many fun adventures together (running our respective businesses, mini-golfing and waffles on our birthdays, building gingerbread houses, etc) and now we're up against a tougher challenge.
For the past 2 years, Tessa has had to deal with debilitating health issues and now faces brain surgery to hopefully relieve her pain.
Currently, she's almost unable to eat and drink and is no longer allowed to drive. Brain surgery is a massive challenge and we're asking for your help. Thank you in advance for supporting her in any way you can.
Would you be willing to make a donation? Every penny will help.
How did we get here?
In July 2017, Tessa started experiencing excruciating electric shock pain in her jaw that would occur on and off with no warning. After almost two years of excruciating pain, countless doctor’s appointments, meetings with specialists, failed attempts at a diagnosis and trips to the ER, MRIs, CT scans, she finally has a diagnosis - Glossopharyngeal Neuralgia. It’s a rare condition, with less than 1 case reported per year among 100,000 people in the U.S and after trying all non-surgical options, her final option is a costly surgery.
In its current state, the condition is robbing Tessa of her livelihood. She’s been in near constant pain since mid-January which makes it almost impossible to do her job, let alone live and survive the rest of life. Normal activities like eating, swallowing, sleeping, crying, bending over, lifting anything or engaging in any activity that would cause increased bloodflow cause extreme pain. Even changes in temperature, cold drafts, or walking around the neighborhood can painful if the weather isn't just right...and sometimes, even then, just the pressure of walking and the vibration of her foot hitting the ground, causes too much pain.
As her cousin, I can tell you that nothing has come easy for Tessa. Life has thrown a lot at her (car accidents, broken back, her dad’s recent spinal cord injury, etc) and through it all she is persistent, driven and extremely dedicated to her work. She’s been working tirelessly to get her MFT and the Board of Behavioral Sciences just approved her 3000 hours, meaning she is able to sit and take her Clinical Licensing Exam to be Licensed Marriage and Family Therapist.. She specializes in eating disorders and has been actively involved in the eating disorder recovery field for years. She is extremely passionate about helping her clients discover and connect to their hopes, values, passions, and interests outside of the problem, and support them in re-(dis)covering what their “anti-eating disorder” life will look like.
It’s been exciting to be building our businesses at the same time and it’s heartbreaking to see this condition get in the way of her life, her impact at work and her vision for her business. I want to do everything I can to support her getting back on her feet and going back to the work she absolutely loves doing. Thank you for supporting her in any way you can, every little bit helps.
The road to a diagnosis
Tessa has been through the unimaginable across the last 2 years to try to fix the issue including:
- a root canal
- nerve block injections
- multiple CTs, MRIs, and X-Rays
- molar extraction
- countless prescriptions
- numerous ER visits
She’s visited 10+ specialists and been given multiple incorrect diagnoses.
I flew down last minute in May of 2018 to stay with her after she’d been in the ER 6 times in just a few days and couldn’t eat or drink. I drove her around to multiple appointments and specialists and witnessed the completely erratic and excruciating pain she was going through.
Recently she’s discovered that not only does she have Glossopharyngeal Neuralgia, but she also has 3 other cranial nerves that are being compressed so she will be needing surgery on all 4 cranial nerves.
What has been so hard about this is that the condition is so rare that no one knows about it. Even once she was able to see Neurologists and Neurosurgeons, she was still unable to be properly diagnosed. It took her own research and advocacy and continued efforts to fight for proper care and for someone to listen to her to find a doctor to help.
What is Glossopharyngeal Neuralgia (GPN)?
Glossopharyngeal neuralgia is a compression of the ninth cranial nerve and causes extreme pain in the back of the throat, tongue or ear. Attacks of intense, electric shock-like pain can occur without warning or can be triggered by swallowing. GPN is a rare disorder, with less than 1 case reported per year among 100,000 people in the U.S.
The pain can last for a few seconds to a few minutes and may return multiple times in a day or once every few weeks. Typical triggers often include eating, drinking, swallowing, speaking, sneezing, or coughing.
If left untreated, glossopharyngeal neuralgia can worsen, causing longer, frequent attacks of excruciating pain.
Often there is no apparent cause for the condition and there is no cure.
What it’s like to live with GPN
For Tessa, the pain occurs as sharp, stabbing, electric jolts, and constant burning, like a blow torch at the back of the tongue that spreads into her inner ear and jaw.
Both forms of pain intensify when she:
- Eats
- Chews
- Swallows
- Talks
- Laughs
- Smiles
- Bends over
- Cries
- Moves her head
- Any micromovements of her tongue
People with this condition may avoid eating, drinking, or chewing because they fear that these activities may trigger a painful attack.
To try to understand what it’s like to live with this pain, imagine:
- Being burned by a blow torch from deep inside the base of your tongue, and the searing pain burning and spreading through the inside of your head into your inner ear. Imagine each movement of the tongue feeling like you have been shocked by lightning.
- Trying to stay still because even just the slightest movement triggers another jolt of electricity shooting through your face.
- Even just staying still, the burning remains, with sparks bouncing about, like a live wire.
- Not being able to bite, swallow, talk, laugh, cough, bend over, tilt your head down without pain increasing.
- Fighting to smile and talk through the pain because that’s what you have to do to remain in the world.
- Every time you tried to eat, needing to mentally prepare yourself to fight through increasing pain, because you know your body needs food.
- Being afraid of making plans because you don’t know if you will be able to talk or eat that day, and also not sure how much energy you will have. Or how present you can be when the pain threatens to keep you distracted from the conversations and relationships you love and want to be engaged and connected to.
- Living with the fear that the pain will not end. That the life you love may not be the same.
You can also see this woman’s experience of living with GPN
(a note from one of her clients)What are the options?
There is no cure for GPN. The options are either medications (anticonvulsants, antidepressants, and anesthetics) or surgery. Tessa has tried every medication and they both make it impossible for her to do her job and are only somewhat effective at relieving the pain. Surgery is required for any chance at long-term relief.
Tessa has not made this decision lightly as surgery may lead to loss of sensation in the mouth, tongue, or throat, but it’s her only chance at long-term relief from the pain.
The surgical procedure is Microvascular decompression and it’s performed under general anesthesia. The surgeon will make an incision behind the ear on the side of the head where pain occurs. He or she will remove a small piece of bone from the area and isolate the nerve. A small Teflon sponge will be placed between the nerve and the artery or vein that is compressing the nerve. After the procedure is performed, the surgeon will replace the bone and close the incision.
Microvascular decompression has the highest initial and long-term success rates so we’re hoping for the best. It is effective in about 75% of cases and yields a lower rate of pain recurrence.
Tessa will be in the hospital for 5-7 days and once discharged, and will be required to stay by the hospital for an additional 2 weeks, in case of post-op complications. Her total recovery time from surgery is an estimated 6 weeks from the date of surgery.
Initially, Tessa had planned to be out of work for 7 weeks, however, when asking for accommodations at her job, for 6 weeks prior to the surgery, Tessa was placed on unpaid leave by her employer. She now faces an unexpected 12 weeks without work or pay.
How the funds will help Tessa
Anything you can donate will be greatly appreciated. The funds will be used to:
- Offset the burden of copays, medical bills, and the surgery (already $2000+ before the surgery)
- Cost of living for two months (rent, groceries, etc is ~$2500/month)
- Airbnb for her family for the several weeks she has to be down in Anaheim before, during and after the surgery ($3000+)
- While on leave she’s still expected to pay her monthly insurance premium ($500/month)
- Plus all the other hidden expenses she has no way of preparing for (which are already popping up left and right)
Tessa absolutely loves her job and wants to keep doing it, but the illness is preventing her from doing that and being in life. The pain is debilitating and without this procedure, she will live in constant pain, where she can hardly eat or talk or smile or laugh or swallow or teach yoga. There isn’t a cure but this surgery is her best option and hope.
Thank you so much for taking the time to read this as it’s always hard to ask for help. Even if you can give a few dollars or can share with your friends, family, and network–every single thing helps.
Organizer and beneficiary
Lindsay Gordon
Organizer
Los Angeles, CA
Tessa Gordon
Beneficiary
