All my respect Dr for being decent enough to admit your past behavior! Believe me when I say you were nothing compared to how some neurosurgeons behave towards us when telling us what we do or dont feel! I have PTSD going to the hospital is pointless! I no longer take narcotic pain meds I refuse to be threatened pushed and around using my pain my contract being terminated! Hospital labeled me a drug seeker and drug addict when I begged them to help me keep their drugs just help! I was told I was cured I'm just being overly sensitive to pain on and on ! My second shunt hasnt been working I can feel and hear the difference! My doctor told me like 4 yrs ago "she had exhausted her resources trying to find me q neurosurgeon!" My case is to complex ect ect.. my whole body is getting worse ringing white noise crackling ticking clicking sounds when move my neck , the different types of headaches are crazy! My nose keeps dripping I did halo test it's barely visible to obviously visible it's sometimes not constant! Oregon has no specialists! There are thousands of us going through HELL and no one believes us or takes us seriously! What are we supposed to do ? I've been years already with out seeing someone!

Amazing and Dr Patel is the type of doctor that is missing these days. Per the video alone you can tell he is a rare individual as he seems to CARE! We've seen so many "specialists" who simply don't care and per Dr Patel, they quickly dismiss us and won't admit that they don't know. Competence + Compassion = physician. 99% don't seem to meet this criteria. Dr Patel is an exception.

I’m in Rhode Island and there are so many doctors that are aware of EDS which has been so helpful!

I’m so upset that my doctor is supposed to be a specialist in EDS. Yet she has dismissed this even when I asked for testing. I’m not sure if they really came back normal but all these symptoms are severely effecting my quality of life! I’m finally getting a MALS diagnosis after having to do my own medical searching! I’m at a loss as to where to even go with all my diagnosis! Aren’t I supposed to have some sort of plan to feel better?!

Thank you

My name is Eva, I am a Samoan/Maori 17 year old with a condition called Cloacal Exstrophy. I was diagnosed with Sensitization Syndrome in 2017 when I presented with pain initially in my right thigh then it progressed to my left groin. They suggested a tough love regime where my parents, teachers and health care providers made me move and exercise despite how much pain I presented . For 4 years I was tortured until my Dad couldn't take it anymore and in desperation contacted the hospital who got angry and dropped us from the pain team. We requested the hospital records and was shocked to see that they had attributed a behavioral component to my symptom's. They have me listed as a Bladder Exstrophy and said the pain is because of my medical history however I only had the one surgery after birth and never suffered pain before. As it turns out I have all the symptoms of a tethered cord. 100% of Cloacal Exstrophies have occult spinal dysraphism. However when I finally got to see the hospital neurosurgeon for the first time in my life last year he told Dad that that not true. The hospital has destroyed my life and my family. And we continue to get denied care at Starship hospital who have become increasingly hostile. The lawyer contacted me today and said I am dropped from childrens and have to go to adult My weight is down to 2-5% of average. I'm the only Cloacal Exstrophy in the world where no attempt has been made to make me continent. Or fix a widening pubic synapsis. And a tethered cord. I'm the only Cloacal Exstrophy in New Zealand. And I just found out that 90% of my large bowel is gone. My original Pediatric surgeon hasn't bothered passing that on to anyone. And the hospital doesn't believe me even though I showed them the original surgery notes. I just got turned down for colorectal input. I've been on an adult waiting list for bladder surgery for 7 years as they said that its an elective surgery. And I've had no orthopedic, urology or colorectal input as a Cloacal exstrophy. Its a miserable existence and hugely stressful for my whanau. The pain deep into my groin is constant now and debilitating. Both my feet are numb. And my bladder has disappeared on the MRI. My body is bent and they said that one of my legs is shorter than the other. I never had that before I was 10. If anyone knows where I can get my cord untethered then please give me a cost and Dad said he would ask his Iwi (tribe Tainui) and Mom can get the Samoan church to help raise the money. Plus our Island community where I live (Waiheke Island). Once we have the Cloacal Exstrophy international community telling the doctors here in New Zealand about this condition than I can raise the money very quickly I think. Dads number is 64 027 225 1459

I wonder why there is so much talk about whether the physicians who treat EDS believe if EDS is real or not. I thought we, as a nation were past that point. Personally for myself with cEDS and the molecular testing proving the collagen defect I suppose I have to keep in mind this video was added two years ago.

There is an EDS and hypermobility clinic at Tulane with Dr Corseault. If anyone has any recommendations for the best specialists to evaluate my six year old for occult tethered cord (I'm already well documented/diagnosed with EDS) in the Southeast US, I would love to hear it. Duke is really the only one that I know of so far.

In some cases, there actually can be permanent damage. I know multiple people who have spinal cord injur, complete or incomplete and paraplegia.

It's not all that drastic as urgency...it can be. I thought that is normal.

My tethered cord was not found until I was 62 years old, then doctors said surgery may not relieve my pain at all and it might be too risky to try because of my age... ain’t that just my luck ? Finally a diagnosis of where the pain is coming from, but too late to fix it. I’m considering trying epidural treatment.

Hi , my father also has chiari 2 , is there a solution for this?can it be fixed ?

What happens when the adult ends up with a tethered cord ? The symptoms that seem to match like the child's but not exactly are the extra ...they say rare. Is that what I'm about to go through with filum? It sounds not good.

We have a 2 year old exhibiting very strong signs of tethered coed. We are desperate to find a dr somewhere in MO to look into it. Any advice for us?