Відео

Hello all of you angels! I was just wondering if you have ever seen gait ataxia or inability to get restful sleep with normal sleep study outcomes? I developed a blood clot in my jugular vein after an IJ cath for plasmapheresis came out. It was an occlusive clot that has since calcified in the vein back in 2017-18...since that day I have not felt like I've slept, and I have been on a downhill steep slide for my gait. I do have MS, and doctors have written me off saying it's just my MS, but there are a lot of circumstantial things and way too coincidental symptoms that cause me to believe that it is from the lack of blood outflow in the brain. I'd love to hear some of these fantastic, brilliant doctors' opinions! Thank you for recognizing this as a disorder. It's been a long 6 1/2 years for me...

Brilliant webinar, can’t believe I’ve only just come across it! A lot of great info, & interesting to hear from different perspectives. Especially thank you Dr Hui for pointing out potential dangers of categorising IIH patients into those sub types.. (as a young female with fluctuating normal/high bmi, hormonal issues like pcos .. I’ve gone years of suffering/ being dismissed. I’m in the uk so nhs & had to go private for a ctv to discover I have bilateral severe narrowing of transverse sinuses & cranial csf leaks.. as well as acquired chiari). & being on several support pages, there are many of us with this same unfortunate story. Thank you all for your work towards these conditions, I’m so relieved to know that this is all being done. Thank you

Excellent Webinar. Thank you so much. I don't know about others but the sound quality was poor and I couldn't understand anything Julia Denley said at all so it was hard to know what questions were being asked. In my observation as a patient in the groups, many patients are experiencing some symptoms relief in the first few weeks but then going down hill and back to square 1 around the 2-4 month mark, possibly due to scar tissue filling space. How can this be mitigated? Also, my symptoms didn't begin until I had a very unnecessary and horrifically botched, multiple attempt, emergency room bedside lumbar puncture. It was 2 years into the leak that they discovered jugular vein compression. At this point that could be an incidental finding. At the same time, so many women have symptoms begin only after needles in their spines whether it be lumbar puncture, epidural etc. Why is this?

Hello madam sir I am suffering with some problem in neck till today no ine has found what is the problem in my neck,i feel pressured in neck and in eyes but every scan i went is normal..

currently diagnosed with a Orbital Varix, Chiari Malformation w a syrinx among many other things. I've tried to find a doctor who can treat the Orbital varix but so far i haven't had any success. Any direction I can get from this team of doctors? I'm located in Atlanta but will travel anywhere in the US. Thank you

I really appreciated this webinar. It was right on point for at least some the information I was wanting and needing. Pieces of my puzzle handed to me so to speak. I appreciated hearing opinions and facts shared by the different physicians and hold great respect for each and every one. I would love to see something follow up behind this for patients. I am most thankful to have been connected to a dr who is helping me learn about the root of some of my health issues. Thanks to all who got this together and/or participated in any way, shape or form. I imagine the things our drs are researching for us patients will go down in history and open up other doors for diagnosis and treatment. ❤️

What surgery did Michael have after his blood patches? The audio became garbled.

Will an early access code be provided to those interested in Nexus MD product?

This was all very fascinating and helpful! Thank you for putting this on. How does someone go about finding a doctor that will explore this kind of diagnosis? Is there a list of doctors somewhere?

Really enjoyed attending this webinar and am glad to see it shared here. Thank you. It was so validating to hear my symptoms talked about and explained. The patient who shared his experience -Michael - his story is is very similar to mine. I hope to be where he is someday - healed and living a normal life. I've been bedridden two years after hitting my head post mountain biking and getting a lumbar puncture. I am currently waiting to see Dr. Amans. I hope to become one of his success stories!

Such a great webinar! Thanks to everyone involved who organised it and to the specialist for being so generous in asking all the questions and giving of their time. So very much appreciated!