Help Heather Overcome POTS
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I am hoping to raise money for my best friend Heather Wallace so she can receive medical treatment in another country. Heather has gotten worse quickly this year, and her family lost 4 months of income due to the pandemic. They could use some help.
For five years, Heather has suffered from a debilitating condition. Anytime Heather is upright, she feels like she is going to faint, has tachycardia, migraines, tremors, balance problems, fatigue, dizziness, and chest pains, among numerous other symptoms. For 4.5 years over 20 different doctors dismissed her as having anxiety, but she persisted in looking for answers.
Finally, a cardiologist diagnosed Heather with POTS, or Postural Orthostatic Tachycardia Syndrome, which causes her autonomic nervous system to malfunction and gives her an unstable heart rate and blood pressure. About 25% of people with POTS have symptoms so severe that they can't work, and normal activities like showering or walking are limited. Unfortunately Heather is one of those 25%, and POTS is the reason they had to give up their family business last year. Her condition is very sad for her boys, who find it hard to understand why their mom needs to be in bed so much.
You can learn more about POTS here:
http://www.dysautonomiainternational.org/page.php?ID=30
Despite medication, her symptoms have worsened this year, and she now has significant trouble walking and has developed dysphagia (trouble swallowing). Doctors in Canada have told her she just has to learn to live with the symptoms, and declined to order further tests to find the underlying cause.
Through other patients struggling with POTS, Heather learned about a condition that causes POTS: Craniocervical Instability (CCI), which can result in compression of the brain stem, vertebral arteries, the vagus nerve, and autonomic nerves, causing all the symptoms Heather has been struggling with. In the worst-case scenario, CCI can lead to paralysis, so we need to find out if CCI is the reason Heather’s having increasing trouble walking and worsening neurological symptoms.
A second opinion on Heather’s MRI scans said there was evidence of CCI - a compressed vertebral artery and retroflexed Odontoid. Heather took this information to three different doctors, and all refused to refer her to a neurosurgeon.
Unfortunately there are very few neurosurgeons in the world that are specialized enough to diagnose CCI anyway, so Heather will need to travel to Barcelona, Spain to receive the proper imaging by a specialist neurosurgeon, Dr. Gilete. Heather chose him because if surgery is required, the cost in Spain is almost half of that in the USA. Spinal fusion surgery for CCI is not performed in Canada.
Here is an example of a POTS patient who went into remission when the CCI was addressed:
Jenn Brea’s remission:
https://www.healthrising.org/blog/2019/05/21/jennifer-brea-chronic-fatigue-mecfs-recovering-story/
Funds raised will cover the cost of travel and accommodation and the diagnostic tests and reports.
Diagnostic tests will be $2989 (1950€), and include the following:
-Upright cervical CBCT in flexion, extension, neutral
-Cervical CBCT in rotation
-Arterial/vein study of the head and neck (investigates stenosis or compression of the vascular structure of the brain and neck. Performed without contrast fluid)
-Brain MRI to rule out Chiari
-Cervical MRI to rule out herniation or cervical malformation
-Bone Density Test
Other estimated expenses:
10-day Accommodation: $1145.46
Airfare $1435.35
Meals $300
Transportation & Misc $150
As the situation with the pandemic is ever changing, her upcoming appointments may need to be rescheduled, but all donation money will be held until it is possible for her to fly internationally.
It’s been tough times for everyone this year, so if you aren't able to make a donation, please consider sharing this fundraiser. As GoFundMe takes a percentage of every donation, you may also consider direct etransfer to [email redacted] (dot) co (dot) uk Thank you very much for any help you can offer to help Heather get her life back!
For five years, Heather has suffered from a debilitating condition. Anytime Heather is upright, she feels like she is going to faint, has tachycardia, migraines, tremors, balance problems, fatigue, dizziness, and chest pains, among numerous other symptoms. For 4.5 years over 20 different doctors dismissed her as having anxiety, but she persisted in looking for answers.
Finally, a cardiologist diagnosed Heather with POTS, or Postural Orthostatic Tachycardia Syndrome, which causes her autonomic nervous system to malfunction and gives her an unstable heart rate and blood pressure. About 25% of people with POTS have symptoms so severe that they can't work, and normal activities like showering or walking are limited. Unfortunately Heather is one of those 25%, and POTS is the reason they had to give up their family business last year. Her condition is very sad for her boys, who find it hard to understand why their mom needs to be in bed so much.
You can learn more about POTS here:
http://www.dysautonomiainternational.org/page.php?ID=30
Despite medication, her symptoms have worsened this year, and she now has significant trouble walking and has developed dysphagia (trouble swallowing). Doctors in Canada have told her she just has to learn to live with the symptoms, and declined to order further tests to find the underlying cause.
Through other patients struggling with POTS, Heather learned about a condition that causes POTS: Craniocervical Instability (CCI), which can result in compression of the brain stem, vertebral arteries, the vagus nerve, and autonomic nerves, causing all the symptoms Heather has been struggling with. In the worst-case scenario, CCI can lead to paralysis, so we need to find out if CCI is the reason Heather’s having increasing trouble walking and worsening neurological symptoms.
A second opinion on Heather’s MRI scans said there was evidence of CCI - a compressed vertebral artery and retroflexed Odontoid. Heather took this information to three different doctors, and all refused to refer her to a neurosurgeon.
Unfortunately there are very few neurosurgeons in the world that are specialized enough to diagnose CCI anyway, so Heather will need to travel to Barcelona, Spain to receive the proper imaging by a specialist neurosurgeon, Dr. Gilete. Heather chose him because if surgery is required, the cost in Spain is almost half of that in the USA. Spinal fusion surgery for CCI is not performed in Canada.
Here is an example of a POTS patient who went into remission when the CCI was addressed:
Jenn Brea’s remission:
https://www.healthrising.org/blog/2019/05/21/jennifer-brea-chronic-fatigue-mecfs-recovering-story/
Funds raised will cover the cost of travel and accommodation and the diagnostic tests and reports.
Diagnostic tests will be $2989 (1950€), and include the following:
-Upright cervical CBCT in flexion, extension, neutral
-Cervical CBCT in rotation
-Arterial/vein study of the head and neck (investigates stenosis or compression of the vascular structure of the brain and neck. Performed without contrast fluid)
-Brain MRI to rule out Chiari
-Cervical MRI to rule out herniation or cervical malformation
-Bone Density Test
Other estimated expenses:
10-day Accommodation: $1145.46
Airfare $1435.35
Meals $300
Transportation & Misc $150
As the situation with the pandemic is ever changing, her upcoming appointments may need to be rescheduled, but all donation money will be held until it is possible for her to fly internationally.
It’s been tough times for everyone this year, so if you aren't able to make a donation, please consider sharing this fundraiser. As GoFundMe takes a percentage of every donation, you may also consider direct etransfer to [email redacted] (dot) co (dot) uk Thank you very much for any help you can offer to help Heather get her life back!
Organizer and beneficiary
Ami Pederson Resnick
Organizer
Edmonton, AB
Heather Wallace
Beneficiary
