Venous Sinus Stenosis

IIH support group; April 6
Facilitated by Dr. Athos Patsalides & Gabrielle Mauro, LMSW
Northwell Health: North Shore University Hospital Department of Neurosurgery

[@inkuban]

Dr. P sounded like he really cares deeply about his patients, to the point he is going out of his way to find treatments for his patients. He has my respect. I may soon be one of his patients if accepted. We need a lot more Docs like him.

[@mv3671]

How did it go

[@krissy789]

Amazing!!! I was stented in Northern California in 2018, and had bilateral C1 resection/styloidectomy here 2019. I was in the Zoom today and am going back and watching the first two. Crying tears of joy, feeling no regrets for my decisions. But, I truly wish I’d had this information back then and for the last 3 years. I have spent the last 3 years bouncing ideas and questions off other IIH warriors, which is amazing, but the information your providing here is second to none. Thank you for caring about us. Thank you for communicating with us and for “seeing” us. Sometimes we feel invisible.

[@crystalbeth31]

Thank you Dr. Pats and Gabrille for organizing this. Having this information out there is so important. So grateful for you all 🙏🏽

[@miked6232]

I met with Dr P just yesterday about this condition and the fact that i have dealt with it for about 5 yrs. He is personally doing my stenting next month. I feel relieved and actually quite honored to have him as my doctor. It will be nice to be able to read again and to see in low light.

[@nh6162]

how did it go :)

[@HanieletNickle]

Hi i was wondering did you have a cognitive issues from sinus transverse stenosis?

[@claregarcia7879]

Hi I'm in Los Angeles ,CA I have trouble finding a doctor that understands what I'm go through. Glad to see a doctor that knows what's going on with IIH patients. Ty

[@elimcg921]

Try Dr Lin, Kristy Pasadena. Stenting Dr Konstas also in Pasadena. I am seeing them and they are educated on this issue.

[@mv3671]

@@elimcg921did you get the surgery

[@cubandiva27]

Thank you so much! This is awesome!

[@mountainmolerat]

Fascinating!! Thank you.

[@tatemlandry3545]

Thank you so much for sharing the recording! I plan to share this video with family, and look forward to attending the next session.

[@clintwilliams2705]

Well done!

[@royadamel]

Thanks Dr. you are awesome

[@christinekaras1730]

Thank you for sharing this lecture.

[@nh6162]

Thank you so much

[@renee6868]

Omg best video out there i could find so far about all things iih , thank you!!! Wish I could be one of your patients! I'm afraid mine are uneducated on this condition 😔

[@Jennmpav]

I have Venus Sinus Stenosis. I have had Tinnitus longer than I can remember. I have had a lot of ENT issues after having my ear drum and mastiod bone operated on there was an increase of pressure. And what seem likes a small possible leak when I exercise not really sure. That is when I found out that I had Venous Sinus Stenosis and based on imaging High CSF fluid I have had a lot of pressure headaches a lot of pressure in ears and pressure in my eyes. I can’t put all my diagnosis on here but I am being treated with medication 150 mg of Topamax not sure if this is the right treatment still getting headaches

[@MichaelBortoli]

I need your help. I have been ill with IIH for 13 years now. Male, Bilateral Stenosis of Transverse sinus. I'm in San Diego and my medical systems, Scripps and V.A. Medical are at a loss for how to treat me. Trying to navigate this with a broken brain has been the most difficult thing in my life. While caring for an elderly mother and an autistic child. I'm drowning and could use assistance, thank you...

[@claregarcia7879]

It's been 7 years for me. I feel your pain.

[@mv3671]

@@claregarcia7879did you ever get the surgery

[@mv3671]

What are your symptoms

[@HanieletNickle]

Did you have cognitive issues?

[@MichaelBortoli]

Yes, I have had lots of memory, motor and mood difficulties over the years. It's been difficult@@HanieletNickle

[@peacefulmental]

They wouldn't even address my stenosis problems they found

[@QueenW82]

Same here

[@45-Subscribers]

IIH ever cause visual snow syndrome?

[@1aliveandwell]

Wonder if anyone has reduce problem with treating it like addisons ,balancing hormones.... Nutrient balance also

[@hakancakmakl240]

Rica etsem Türkçe çeviri eklermisiniz saygılarımla

[@davidmulligan4830]

Is it safe to lift weights with VSS?

[@manishkumarprasad1034]

I am from India, how to contact you.

[@paulconner4614]

What causes the narrowing of the jugular vein. Don't we need to determine that are correct also otherwise will the stent work.

[@crystal.persistence]

it can be neck curve or high cholesterol in the body tissues that is blocking the flow of blood. we need to change the way we eat. Try plant-based food for 30 days and water.

[@mv3671]

I wonder that too

[@peacefulmental]

I need help. I'm being shuffled around. Live in Dothan alabama and been to Emory also Callahan Eye clinic in Birmingham. Have papilledema, losing sight but LP was low in August and everyone is just ignoring me. I'm weak, off balance, losing vision, pulsative tinnitus and feelings of the the back of my head beating to my heart as well. Creepy feelings in my scalp face and neck as well. I need help

[@Sunnydreamer1470]

I have the same symptoms as you. I went to emergency room to no avail , when you feel sick It’s exhausting!