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Sadly l can understand your frustration. I also have to lay flat and have had the nasal leak. Now appears to be running down right side nasal at back of throat. Anxiety is terrible as always swallowing with constant headache. Thank you for sharing as you explained better than what I can to my Dr...❤

That's what I felt aside from Tinnitus. I did not had Tinnitus but slight autophony, where the first three weeks I can hear my heartbeat and when I turn my head left side I can hear of a kinda sensation or pressure in my left ear. But now it's kinda manageable and less sounds and pressure or vibration. I think I am on the process of recovery now. But I know the feeling, it's hard that I can't speak loud back then. Here's what I did for the straight one month (everyday) 1. Steam and (inhaling) my face and left ears with apple cider, salt and white flower. 2. Compress warm water with salt 3. Gargle one glass of water with salt (twice a day) 4. Massage the back of my ears 5. Yawn, chew, swallow, then do Valsalva Manuever (twice a day) Until my Eustachian Tube opened.

Love and prayers

You've been through so much. You are a very strong young lady. This is breaking my heart. I'm a grandmother and a great grandmother. I know about horrible pain throughout my years. I'll be praying for you.

You are so strong. I have a liquid falling at the back of my throat but it comes out only at the back of my throat. The ENT just told me that it was just allergies. I just want to get better. I have no headaches. I hurt myself and this is what I have to carry with. I hope it is nothing and just allergies. I am so scared.

Great illustration! I have SCDS on both sides. I've had both sides repaired at Hopkins which has made things better. I still have residual effects of the syndrome and the many surgeries I had prior to Hopkins, but I am better off for having had the surgeries. Your video brought it all back and I actually began getting anxious watching it. I'm very grateful there's help out there for people like us. Thanks for sharing your experience and helping with awareness!!!

I’m waiting on my surgery for the Right side. Thank you for making this video

please God help this lady get better

❤Thank you for sharing. I too am experiencing the SCDS and have for over 10 years. My ENT has me scheduled to close the hole.

There’s a doctor at UCLA Health Dr Isaac Yang, he’s amazing and does the surgery to correct the problem.❤😊

Thank you so much. I didn’t want to get surgery to begin with and now I definitely don’t

Did you experienced vertigo in a landing airplane?

Thank you , extremely hard to gind someone who has and can explain this hell.

Sure, here is the translation: --- Hello John, I am Mustafa. I live in Germany. I have found out that I have the same illness as you. I have been suffering from this illness for three years. I wanted to ask how you are doing now and if you still have the same symptoms and problems as before the surgery. Are you feeling better now? I hope you are doing better. I am asking because I will also be having surgery soon. It was not easy to find a doctor who performs this surgery frequently. I would be very happy if you could write back to me. Thank you very much.

How are you now?

Amazing!

Good job on this video. Loved the visuals and sound effects. You convinced me to look for these books. Thanks!

How are you doing now? I hope you are doing great and the symptoms are still improving!

I have this. Everything you talk about I have and understand.❤

I’m going through hell right now going on 50 days with this horrific positional headaches. I’ve spent two weeks in Methodist hospital in Indianapolis they found a leak at T-10-11 they did a blood patch put too much blood I then had a rebound headache the patches failed I ended up in hospital again last Thursday I got a patch at C-7 and L-4 which made me worse. Doctors around me just do not have a clue and look at me like I’m faking or nuts. I have an appointment at Cleveland Hospital May 17th I pray that this Specialist will listen and help me. I feel like me life is over. I don’t live all I do is lay down that’s my relief. Doctors are not educated enough and people with this suffer so much. I’ve been fighting and speaking out it’s the only way I’ll be heard.

Why did you need a 4th surgery?

I love to get your dream address for your wizard of oz island please

Very cool

very neat and cool idea!

where did you buy the thing pressing the book

I have bilateral scds...I have had 2 TM approach surgeries on right and I have hearing loss very loud tinnitus bvd..they didn't have me stay in hospital I left same day im 3 years in. I can't sleep on right side no independence can't have alot happen around me noise makes me lose equilibrium I don't drive or work or go on walks.. im losing this battle. I found your video. Thanks for sharing.

I am so sorry

I’m pretty sure I have a CSF and I’m terrified! I can’t stand it getting any worse and find surgery very scary. I can’t help but wonder if surgery will make it worse like it did you. For years I’ve wondered what was wrong now I know and it’s very scary to me

hi Jordan...i have some idea, but i wondered how you are doing, so went to your channel...4+ surgeries, huh... i have an "idiopathic' SIH, and have had some quite "high-level" diagnostics, with no leak found, stil crazy after 3+ years! I guess i need to have a better look at your videos, before asking "how are you doing?"

Thank you

I often wonder if I have SCDS as well. Everything is amplified in my head, yawning, swallowing, and I can hear my heart beat, Swoosh Swoosh like sucking water between my teeth constantly when I'm moving my head side to side and up and down. The ringing isn't continuous but definately at that level when it exists. I have people ask me what what over and over because they can't hear me asking questions or making comments. I sound loud to myself. I've had 2 MRI's for migraines and a TIA, and a CT for neck pain and head pain. I can pinpoint on my head where it feels like I'm being hit with a mallet. My ears feel like they are full of pressure like when you go up in a plane, but I can't yawn to pop them. I do have tenotis and TMJ. I've had these issues since my 20's, and I'm in my 60's now, and have never had it diagnosed as SCDS. Only a neurologist can diagnose this?

That was very well done and anyone who SCDS would agree. Thank you. I am curious is your tinnitus from hearing your heart beat, or loud noises, or from the drill doing the middle fossa surgery. What do you feel that attributed to your tinnitus ??? PS. I have SCDS.

Hello l have the same problem and the same síntoms and is hard to explain to the people how is live whit this problem because they thung is mental problem but lm know this problem and lm enderstend you thanks for share the video and on october 16 2023 l hqve my surgery qnd l hope qll this síntoms go away thaks and good bles You

Promo-SM

It's really malpractice how many doctors overlooked this ....

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Did they ever test your pituitary hormones to see how it’s being affected by the CFS leak? Other than fatigue, did you also have other pain symptoms?

Allergy to sun?

Hey Jordan. Hope you are doing OK.

"They" are dangerous people. They could have given you supplements that heal the membranes but then they wouldn't make any money on that. Hope you recover! (glutamine & omega 7 + collagen + vitamins)

Omg this is so accurate! Thank you for doing this video. My surgery is less than 2 weeks. I hope urs went well 🙏🏿

Literally found out today I have a mild form of this. I used to be kept awake by my own heartbeat in my ears as a kid. It doesn't happen much anymore, thankfully, unless I'm really stressed. I do still hear my eyelids click open and shut when I blink and I can hear my eyes move sometimes. Thanks for the example of what it's like for you!

How are you feeling? You're moving your head a lot thats a good sign i guess... Now i want wine

Haven't tried installing the drain?

Yeah, I’ve had air popping all day long. Are used to get headaches three times a week. Sometimes I’ll get them in my sleep and I’ll wake up with them sometimes or sleep them off and then get them at the end of the day. My headaches have gone away using sumatriptan, I was taking propanolol because of the anxiety but all they did was make mine muscles numb and tingly. The side of my face will get tingly and burning sensation with rage through it. It would stop me in my tracks. I get muscle cramps sometimes they last for like a month, I drink about a gallon of water today a little bit less sometimes 64 ounces I was just running a 5K last week. I went for a nice walk yesterday collapsed scraped up my name, my shoulder, my hand, I’ve had lack of vision in my left eye I have coat hanger pain 24 seven I have nerve pain in my neck the base of my skull to the point where touching things does weird things like feel like leather, but otherwise shouldn’t hurt. What’s the log at double vision the roof of my mouth seems to changed like there’s a bump in the bone separation my nose just started bleeding before I went to the ground yesterday I went to the ER. They did their run up check my heart they felt like it was OK for me to go because I didn’t have a stroke or a seizure and that’s what he said he said that I should get with the cardiologists I think the ER is where they start you out going through all the hoops They know that they can’t fix it. Only Jesus can really help in my situation is the best doctor around I don’t count on that getting better but I can count on things working for good together all around things. I want to get better in times of pain I accidentally get closer to God I had a massive headache and Cushon three years ago. It’s only my third one. This one was pad I was having shakes because my anxiety would just flare up out of nowhere like I couldn’t control it with my brain like this thing that happened yesterday I tried to calm down because I tried to calm down. I couldn’t breathe, and I couldn’t breathe. My heart started going, so I stopped and I got tunnel vision and I taste of blood in my mouth. My nose started dripping blood. The worst part is I feel like I’m being ignored by anything that could help me has actually been the opposite only thing I found the more helpful is church relationships not so much religion but I’m talking good quality relationships based in faith in Jesus Christ hope you enjoy the calm and I’m dropping it off. Bless your new journey. Peace be with you and your family.❤

God bless you thanks for sharing your testimony I collapse the other day. I’ve been having the same symptoms you’ve described I’m known for buying tissues all the time specially, since I had a hit concussion three years ago I’m so sorry you’ve had to go through this bless you❤

I was going to say in a previous video that I hope you can get to a place where you find the morbid humor in hearing your eyes and it looks like you already made it! 👍

I wonder if bone-conducting headphones could help neutralize this with low white noise, etc. I have tinnitus, but usually not that bad. I'm working on getting whatever is going on with my brain diagnosed.

I have just been told I have SCDS I have suffered with this for 3 years I find bed time the worse because everything is loader and sometimes I evan get frustrated as its hard to do daily tasks like talking, my first 2 doctors laughted and told me nothing was wrong but finally there is hope

In that time did you ever notice if your cfs was intermittent? I have times when I did not leak out of nose but mostly kept headache, low energy and ringing in my ears, occasionally balance issues. Leak always returns but it definitely has something to due with physical activity. I'm currently on 2 anti depressants.....just tired of it all.