Head and Neck Issues - Dr. David Saperstein
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- čas přidán 10. 09. 2023
- Dr. Saperstein is the director of the Center for Complex Neurology, EDS & POTS in Phoenix, AZ. His practice focuses on the diagnosis and management of EDS as well as autonomic and neuromuscular disorders.
Dr. Saperstein is a graduate of Boston University School of Medicine. He completed a Neurology residency at Wilford Hall USAF Medical Center in San Antonio, Texas, followed by a Neuromuscular Disease/Clinical Neurophysiology fellowship at the University of Texas Southwestern Medical Center in Dallas. He is board certified in Neurology, Neuromuscular Medicine, and Clinical Neurophysiology.
Dr. Saperstein is a Clinical Associate Professor of Neurology at the University of Arizona College of Medicine. He is well-known for his research and publications regarding immune-mediated and small fiber neuropathies. Dr. Saperstein’s clinical and research interests include a broad array of neuromuscular and autonomic disorders.
Let's get to the point. This physician had Leah bring him a ton of business from the EDS community. Then bling bling, I dont take insurance now that I have so many people needing to see me, so I am going to charge a lot for people stuggling with major health issues. Now add in the failing of patients who are extreme or rare EDS. Where was the help and treatment. Why are conferences so much when so much money has been given to the EDS Society. My family needs major medical help and we have been failed. Even at a conference we attended, even the rare types class didn't discuss the rate type my family has.
Hello! We do have scholarships available to help reduce the barrier of cost, which you can find here: www.ehlers-danlos.com/scholarships/ We also just hosted an event called Genetically Defined EDS: Strategies and Solutions for Unmet Needs which focused on the rare types of EDS. The content from this event will be available on our website in a few weeks after it is edited and captioned: www.ehlers-danlos.com/past-events/
Excellent Talk !! Up to date Therapies for Chronic Migraine AND Underlying Causes typical to EDS Patients
That was very helpful. Thank you.
My occipital moves …..it moved once caused severe nausea….found out the vagus nerve runs through that and if it moves you can get nausea because the nerve runs past your stomach…..my chiropractor put it back in came home and vomited. 🤮 It helped the adjustment but it was the release that made me vomit twice…..felt hugely better afterwards. I only recently had a dr told me I may have EDS…..makes sense as my mother has been chronically ill her 73 years on earth, chronic hernia repairs, grew up as a child seeing both parents in hospital on off wondering if I would be an orphan from a small child. I have been chronically sick almost my 40 years on earth. Chronic digestive problems, my mom has organs out of place, retroverted Uterus, her gallbladder was out of place, I need digestive aids with betaine hcl and gallbladder support. I vomited often as a child and have to be very careful with food. Food allergies etc……nothing has added up till my newest dr mentioned EDS.
I've started wearing a shoulder brace, I have a lot less neck pain when I wear it.
Had you tried kinesiology tape before that? Taping helps me, somewhat. I have not tried a shoulder brace yet.
Where are you using the K tape? K tape is basically just for biofeedback. It’s been way over promised and not used correctly by athletes.
The tape is only to signal to the person to not allow the joint to hyperextend. The tape it’s self is not a brace. Therefore k tape would not provide the stability required by a brace. -comments Based on my personal use for severely subluxing knees and working with my hEDS specializing PT & OT.
Where can you find a proper fitting brace , I’ve been looking for years .
@@jessicaroseelizabethp.7911 Hi K tape (and other elastic support) is now the best way I have of supporting my subluxations - other bracing is often too rigid and cause more problems than they solve. K tape is not perfect, but certainly helps me.
He covered the topic well. I don't think there is any new information here. Everything covered can be found online in other places with a simple search. Gepants are newer, but not new, so there may be some with migraine who haven't yet heard about them, but they need to know that the insurance paperwork is a headache in unto itself. What patients need to know is how to access services and navigate the system. They often need someone to guide them through the process. Finding a specialist in certain parts of Canada is near to impossible. I pray mine doesn't retire because I don't know what I would do without her and I dont know how I would find another, since there aren't any others who understand EDS in the province where I live. When are our universities and medical colleges going to get up to speed on EDS?
Taking Quilipta each evening keeps me from getting severe migraines! I had them for years and did not tolerate or get any benefit from the majority of the prescription drugs I had tried. No negative side effects for me with the Quilipta and no bad migraines as long as I take it and pick up refills on time.
My period life was hell in a hand basket. Malabsorption all my life. Up to age 23 I had undigested food in my BM’s …..TMI sorry……since using digestive aids with betaine hcl it helps. Plus my stomach can’t hold a lot of. If I eat too much I bloat and takes forever to feel better .
Is there any information on Migraines triggered by weather change in people with HCTD's we can go back 4 generations of family members that have/had migrains triggered by changes in air pressure?
No studies specifically in HCTDs but some people do report that weather changes trigger their migraine. Here's an article and a paper: americanmigrainefoundation.org/resource-library/weather-and-migraine/. www.ncbi.nlm.nih.gov/pmc/articles/PMC4301671/
Thank you @@TheEhlersDanlosSociety
A long, hot shower really helps me.
Can anyone speak to ddd , cervical retspondolythesis ? Stenosis … now having to deal with random episodes of blacking out , an undiagnosed mystery even the ER , it’s not POTS , any thoughts or RX would be very much appreciated. It’s very disconcerting.
How do I find doctors, especially in my system who are up on this. The one neurologist who pointed to hmd left. I have been struggling with this and now told there is nothing to be done except accept it and control my thought.
It is typically a good medical system but I’m finding that this lack of knowledge about these very things you mentioned has frustrated me even before an official diagnosis.
I was self employed and short on my work tolerance due to debilitating pain so in an hmo.
The muscle relaxants, no matter which type, cause a terrible cough that prevents any sleep. I have come to some of these conclusions just through living with this but no help, no understanding and just told by the doctors these things are not possible.
I do not know how to find help.
Will be eligible for Medicare next year. I’d like to have some sort of good life for what is left but need help.
How do I find help on now depleted funds?
Not eligible for any help
Hello! Please contact our helpline, they can help answer your questions and connect you with resources - www.ehlers-danlos.com/eds-helpline/