Help Heidi keep her head on straight!
Donation protected
Who I am: Hello! My name is Heidi, I am 43 years old and I own a small acupuncture clinic in Arizona. I used to be a very active person. I also used to be a very happy workaholic because I love my job! I am now in a situation where being active has become a limited option and I am also facing the reality that I need to make some choices medically to make sure I can keep working at my clinic for many years to come. As a small business owner, this is coupled with the other unfortunate reality that the pandemic has taken a huge toll financially.
This is me working at the clinic, one of the things that I love to do most! It involves me doing a lot of neck/spine movement...so let's get to why that is an issue.
What are these medical choices I mentioned? A loose timeline of events:
1/2019 - I started having strange symptoms. Electric shocks in my face, legs and back, extreme leg pain, numbness in my legs and back, severe nausea and other neurological symptoms. The doctors thought it was MS at first. This started what ended up being close to a 2 year journey of medical tests.
12/2019 - I was diagnosed with small fiber neuropathy which explained the pain, but didn't explain some of the other symptoms. As time went on my symptoms progressed to other parts of my body.
2/2020 - I started having heart and blood pressure issues and with more testing a diagnosis of dysautonomia was added to the list. Dysautonomia is a condition where the autonomic nervous system is not working correctly.
9/2020 - After being sent to a cardiologist, three neurologists, a geneticist, an otoneurologist, a gastroenterologist and a rheumatologist (and having many more tests) I was finally diagnosed with Ehlers Danlos Syndrome. This was what was causing everything else!
Ehlers Danlos Syndrome is a genetic disease that affects the connective tissue of the body. Connective tissue is pretty important, it is what provides support to all the structures of your body. One of the many side effects is that my joints pop out of place and move around a lot more than they are supposed because my tendons and ligaments are too loose and don't hold things in place.
1/2021 - Recently, another diagnosis got added to the mix, craniocervical instability. The ligaments that support the joints between my head and top two vertebrae have become weak. This is allowing my skull to move around too much causing nerve damage and possible compression on the brainstem. If left untreated, it is a progressive condition and can cause more damage to the nerves, brainstem, cervical discs, facets and muscles. So where am I at in the progression? A 5 is considered normal and a 9 means it is time to start considering surgical intervention....I am approximately at a 7-8.
The surgical fix for cranial cervical instability is a fusion. This is something I am hoping to avoid for a very, very, very long time. This is not just a regular neck fusion surgery where they fuse the neck bones together. It involves fusing the skull to the neck too. After this type of fusion you are unable to rotate your head left and right and your range of motion looking up and down becomes severely limited. This could cause disability to the extent that it could negatively impact my work. It would also limit my ability to drive as well as other physical activities. That is not even considering how invasive a fusion surgery is especially with the complication of having Ehlers Danlos Syndrome. There are only a handful of neurosurgeons in the U.S. who specialize in in doing this particular fusion on people with EDS .
What are the alternatives:
1) I could wait and do nothing. Basically this means waiting until I get to a 9 and at that point move towards the surgery. In the meantime I would most likely need to start wearing a cervical collar for part of the day which could lead to neck muscle atrophy. Since this option means doing something that would make my muscles severely weak in an area that is already structurally compromised I started researching if there were any alternatives.
2) The alternative that seems to have the most promise is a stem cell procedure where they take my own stem cells from my bone marrow in my hip and inject it into my damaged ligaments in my neck. There is only one facility in the country that does this procedure (PICL). It is in Broomfield, Colorado at the Centeno Schultz Clinic through Regenexx. Why stem cells? Stem cells can become any kind of cell they need to in order to repair damaged parts of the body. The science behind it all is pretty amazing! I have spoken to several previous patients that also have EDS and they are experiencing successful stabilization of their head & neck after having the procedure!
This means potentially keeping that 7-8 from progressing to a 9 or possibly even bringing that number back down closer to a 5! It is also possible I could see a reduction in the dysautonomia symptoms as the nerve damage heals. I could do some of the things I love, like swimming or riding my bicycle, without the fear of progressing the dysautonomia. I could potentially keep working at my clinic for many, many years to come!
My trip to keep my head on straight:
Stem cells work to repair damage. This means that the less damage there is the more effective the procedure will be. In other words, the sooner I do the procedure the better! I am hoping to do the stem cell procedure in June 2021. I would have to travel to Colorado, have the procedure the next day, then wait 3 days to make sure there are no adverse effects that need tended to by the doctor. After 3 days I can head home and then I will need to rest and recover for a couple of weeks. The doctor who will be performing my procedure is Dr. Schultz.
The cost:
The procedure, anesthesia, bone marrow stem cell harvest, imaging, etc. cost around $12,000. Because it is experimental nothing is covered by insurance. There is the added cost of travel to/from Colorado and the final imaging and pre-procedure consultations/imaging added on another $1000 in expenses. There is also a chance I will have to do the procedure twice to get the best results because EDS complicates the healing progression.
My clinic is a 2 person business, myself and my awesome office manager. In other words, if I am not working the clinic is closed. This means I also have to consider the cost of having the clinic closed for 3 weeks for recovery time. During normal times this would be a little stressful, but manageable. During pandemic times, when my business has already taken such a huge financial hit, 3 weeks closed is a much bigger complication and ultimately why I have decided to ask for help. I will readily admit it took a lot of pride swallowing to set this page up. But, if there is one thing this pandemic has taught me it is that sometimes we have to ask other people for help.
If you feel compelled to donate I am really grateful to you! I understand that this pandemic has affected so many of us and if you are unable to donate monetarily, it would mean the world to me if you would consider sharing this page instead. I thank you in advance for the help! If I know you personally, or ever get to meet you, once this pandemic is over, there are going to be a lot of hugs happening! THANK YOU!
This is me working at the clinic, one of the things that I love to do most! It involves me doing a lot of neck/spine movement...so let's get to why that is an issue. What are these medical choices I mentioned? A loose timeline of events:
1/2019 - I started having strange symptoms. Electric shocks in my face, legs and back, extreme leg pain, numbness in my legs and back, severe nausea and other neurological symptoms. The doctors thought it was MS at first. This started what ended up being close to a 2 year journey of medical tests.
12/2019 - I was diagnosed with small fiber neuropathy which explained the pain, but didn't explain some of the other symptoms. As time went on my symptoms progressed to other parts of my body.
2/2020 - I started having heart and blood pressure issues and with more testing a diagnosis of dysautonomia was added to the list. Dysautonomia is a condition where the autonomic nervous system is not working correctly.
9/2020 - After being sent to a cardiologist, three neurologists, a geneticist, an otoneurologist, a gastroenterologist and a rheumatologist (and having many more tests) I was finally diagnosed with Ehlers Danlos Syndrome. This was what was causing everything else!
Ehlers Danlos Syndrome is a genetic disease that affects the connective tissue of the body. Connective tissue is pretty important, it is what provides support to all the structures of your body. One of the many side effects is that my joints pop out of place and move around a lot more than they are supposed because my tendons and ligaments are too loose and don't hold things in place.
1/2021 - Recently, another diagnosis got added to the mix, craniocervical instability. The ligaments that support the joints between my head and top two vertebrae have become weak. This is allowing my skull to move around too much causing nerve damage and possible compression on the brainstem. If left untreated, it is a progressive condition and can cause more damage to the nerves, brainstem, cervical discs, facets and muscles. So where am I at in the progression? A 5 is considered normal and a 9 means it is time to start considering surgical intervention....I am approximately at a 7-8.
The surgical fix for cranial cervical instability is a fusion. This is something I am hoping to avoid for a very, very, very long time. This is not just a regular neck fusion surgery where they fuse the neck bones together. It involves fusing the skull to the neck too. After this type of fusion you are unable to rotate your head left and right and your range of motion looking up and down becomes severely limited. This could cause disability to the extent that it could negatively impact my work. It would also limit my ability to drive as well as other physical activities. That is not even considering how invasive a fusion surgery is especially with the complication of having Ehlers Danlos Syndrome. There are only a handful of neurosurgeons in the U.S. who specialize in in doing this particular fusion on people with EDS .
What are the alternatives:
1) I could wait and do nothing. Basically this means waiting until I get to a 9 and at that point move towards the surgery. In the meantime I would most likely need to start wearing a cervical collar for part of the day which could lead to neck muscle atrophy. Since this option means doing something that would make my muscles severely weak in an area that is already structurally compromised I started researching if there were any alternatives.
2) The alternative that seems to have the most promise is a stem cell procedure where they take my own stem cells from my bone marrow in my hip and inject it into my damaged ligaments in my neck. There is only one facility in the country that does this procedure (PICL). It is in Broomfield, Colorado at the Centeno Schultz Clinic through Regenexx. Why stem cells? Stem cells can become any kind of cell they need to in order to repair damaged parts of the body. The science behind it all is pretty amazing! I have spoken to several previous patients that also have EDS and they are experiencing successful stabilization of their head & neck after having the procedure!
This means potentially keeping that 7-8 from progressing to a 9 or possibly even bringing that number back down closer to a 5! It is also possible I could see a reduction in the dysautonomia symptoms as the nerve damage heals. I could do some of the things I love, like swimming or riding my bicycle, without the fear of progressing the dysautonomia. I could potentially keep working at my clinic for many, many years to come!
My trip to keep my head on straight:
Stem cells work to repair damage. This means that the less damage there is the more effective the procedure will be. In other words, the sooner I do the procedure the better! I am hoping to do the stem cell procedure in June 2021. I would have to travel to Colorado, have the procedure the next day, then wait 3 days to make sure there are no adverse effects that need tended to by the doctor. After 3 days I can head home and then I will need to rest and recover for a couple of weeks. The doctor who will be performing my procedure is Dr. Schultz.
The cost:
The procedure, anesthesia, bone marrow stem cell harvest, imaging, etc. cost around $12,000. Because it is experimental nothing is covered by insurance. There is the added cost of travel to/from Colorado and the final imaging and pre-procedure consultations/imaging added on another $1000 in expenses. There is also a chance I will have to do the procedure twice to get the best results because EDS complicates the healing progression.
My clinic is a 2 person business, myself and my awesome office manager. In other words, if I am not working the clinic is closed. This means I also have to consider the cost of having the clinic closed for 3 weeks for recovery time. During normal times this would be a little stressful, but manageable. During pandemic times, when my business has already taken such a huge financial hit, 3 weeks closed is a much bigger complication and ultimately why I have decided to ask for help. I will readily admit it took a lot of pride swallowing to set this page up. But, if there is one thing this pandemic has taught me it is that sometimes we have to ask other people for help.
If you feel compelled to donate I am really grateful to you! I understand that this pandemic has affected so many of us and if you are unable to donate monetarily, it would mean the world to me if you would consider sharing this page instead. I thank you in advance for the help! If I know you personally, or ever get to meet you, once this pandemic is over, there are going to be a lot of hugs happening! THANK YOU!
Organizer
Heidi McHardy
Organizer
Tempe, AZ