Search results

She is considered a US expert on tethered cord. I have several symptoms of OTC, and I suspected that was an issue before my cervical fusion. I also have EDS which can come with additional (but mot common) complications, so I am not considering surgery. I really do not want to get into too much...

I had instability causing cord compression in both flexion and extension. I was also unable to hold my neck in a straight upright position for more than a few minutes (we thought it was due to muscle weakness). I originally thought I may have had CCI and went for imaging & an eval. Was quite...

There were so many going under CCI/AAI evals last autumn that my surgeon literally asked me if there was a billboard with his name on it. He has a special interest in EDS, is more conservative than the "popular 2" in the US which is why I chose him. We often laugh about the look on his face when...

He was very transparent about his experience - very kind of him. I was quite sad for him. I had structural issues in C-spine and had ACDF. Was quite aware before the surgery that I had symptoms similar to tethered cord. Surgeon wants to eval for OTC, but I am not going through another surgery...

It worries me a lot because I never know when that threshold has been moved and I usually do not realize it until it is too late.

Riding in a vehicle & being passed by another vehicle on the highway & I am on the floor nearly crying.

Said person had vEDS and knew it was a huge risk to have the surgery. It isn't like that was a case of uninformed choice. it was a risk:benefit equation that they obviously felt was worth the chance. My investigation into CCI revealed that I had such instability in my c-spine that it caused...

That was my exact experience times four neurologists. It took one neurosurgeon less than 10 minutes to solve my case. I am post op ACDF to relieve compression of my spinal cord. Too soon to say anything for sure, but I am confident that I have ended the progression of my symptoms if nothing...

hEDS can have an issue with the filum not being elastic, and then stretching of the spinal cord can cause injury. Starting at about 4:25, Dr Patel addresses this issue and also mentions that twisting of the spinal cord causes symptoms and that the spinal cord os not supposed to be stretched.

I feel that your response is very in accurate. How many American football players suffered post concussion syndrome before it was recognized? I was told by my former rheumatologist that she knew I have hEDS from the beginning of the many years I spent misdiagnosed under her care. I continued...

I was stuck in the VA system for 2 decades bc I did not have private insurance. I was told everything from conversion disorder to flat out faking. My primary was the ONLY doc that believed me, but prescribing bedrest is not something that is done and we all know that. VA doesn't indicate bed...

Yes, exactly. We also are not invisible. Ignored, but not invisible.

I agree completely. If I sit up for extended time, my HR can exceed 100 in that position. I just felt tired and did not realize what was happening until I started wearing a HR monitor.

That is exactly what ended my love affair with my inversion table. My proprioception has tanked to the point that I rely on my cane to tell me where I am vs my body knowing and being upside down makes it worse. I'm trying a bit of very cautious PT to try and regain some of that. They are great...

You rarely even see a "licensed physician" there anymore in primary care. They have figured out it is cheaper to use PAs and treating pharmacists (forgot the exact name). Since it is a federal facility, they can make up whatever exceptions they choose. Even the civilian contracted opticians in...

So, the military used a Myasthenia Gravis drug as "pre treatment" for exposure to nerve gas and now that might be the underlying cause of Gulf War Illness? This article explains that was how it was done.... https://www.ncbi.nlm.nih.gov/books/NBK222848/ I would not expect any less than this from...

We have one. It is terrific for back pain. I used to be able to completely invert and feel great for a little while afterward. Lately, I've had a lot of muscle weakness and even a 20 degree tilt is no longer agreeing with me. IT makes me feel all out of sorts, but I'm thinking its a...

I have had periods of that symptom. Was screened for MS and it was not. As of late, I have a few docs that think it could be MG, but am having a hard time getting a dx for that due to negative Achr antibodies and local docs wont do any further testing. As a side note, I find it interesting that...

ENT told me to flush with NEiL Med rinse, never use sprays.

Same in the US & the price depended on where it was being shipped. I was unable to afford the LDN.