Possible Ehlers-Danlos Syndrome with craniocervical instability
I'm sending my scans into the Rochester neurosurgery department with some papers regarding symptoms, measurements, etc. I guess I'm just trying to gauge my chances for being taken seriously with this. I've been seen by 25+ physicians for the same symptoms over 8 years to no avail. I've included the pictures shown here as well as others in the package. Symptoms: loss of balance and coordination, tinnitus, dysphagia, fatigue, formication, constipation and bloating, tremor in both hands, cold hands and feet, slurred speech, 82% oxygen via sleep apnea precursor test. I hope they don't get upset as I've added some pictures of diagnostic procedures for measuring skull angles. I just can't help myself after more or less being dismissed for 8 years. I took the measurements with the image with the red lines. Via the report from Barcelona neurosurgeon Vicenç Gilete the measurements are close. His measurements were 129 degrees neutral CXA (which is pathological) and Grabb-Oakes at 9.4mm which is also pathological.
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Sorry for your unsuccessful search. I have had 4-7's ligaments tightened by a Dr. who learned the techniques at Schultz and it was successful. Number 4 was the worst as described by a Digital Motion Xray. The work stopped the worst symptoms but I still have some, so I just do a 'palace guard" neck movement .... chin to the chest and stretch the neck up. I seems to realign the joints. Have had the SI Joint worked on as well and again the same kind of results ... no more partial dislocations or wild hip swings but again I have a movement to realign the joint when it goes off a bit. Good luck.
Hi. I would recommend Dr. Jon Weingart. Neurosurgeon at John's Hopkins. It was from an article about him in the New York Times that lead me to diagnose myself at the age of 52 with Chiari malformation Type 1, causing life- long neurocardiogenic syncope. I had a brain MRI, and a tilt- table test. I had brought this condition up to at least 30 doctors up to that point
Thank you for your kind reply. Is the Dr you saw a name or clinic you can share? I really don’t want to give up. But I’ve heard second opinions are always good. I could give you my phone number or email if you don’t want to share here. So glad your turned out successful.
The Dr, Dr. Ben Newton, works out of Stem Cell Arts in Chevy Chase, MD . They are part of a group of Regenerative Medicine Drs. that also have offices in Tysons Corner, in VA. They all trained in Denver, I believe.....
Hope you can find a solution .... I do think that some prolotherapists work differently than others ....
Much gratitude for your feedback! I don’t know that I can go threw another year and a half of doing the bone marrow stem cell therapy it was really hard the first time. It was way too long before anyone discovered what the root cause was cervical instability, 40 plus MRIs disco grams catscans you name it . Plus 30 years of living with it and all the damage that was done threw this time. I wish I could talk to someone who has had their complete neck fused and the outcome and pain reduction. I would travel overseas also if I had more insight where and who to see.
I am so limited to what I can do, it seems everyday I’m more and more dizzie more blurred vision and I stay at a level 10 on my pain scale, that’s with taking high doses of pain medication, so thankful to talk to someone.
Can you add me to EDS groups? I can seem to do it