3 Month Cerebral Stent Update (Left Transverse Sinus)

[@bayareadrifter415]

I've been watching all your videos it is amazing your recovery story! I hope everything stays that way. I just got diagnosed with IIH a few weeks ago But i've been having symptoms for over a year and the doctors would just brush it off as headaches. Is my first final tap measured at 19.5 and right after that I felt immediate relief for about 5 months. Until one day I had a severe headache with severe pain behind my eye and it would get worse when I laid down or coughed. I went to the emergency room they tried to do a spinal tap with me laying down but could not get the fluid out. So they just gave me one while I sat down and my pressure was 43 but they said it was not accurate. My neurologist said that they did it wrong. You are supposed to do it while you're sitting down and once they get the needle in you're supposed to lay down and then they read the pressure precisely. Mine measured at a 20.5 But I wasn't having any symptoms at the time so i'm sure it's alot higher when i'm having symptoms. They cannot prescribe me Diamox Because I have kidney stones so they prescribed me Lasix. I've been on them for 3 days already but still having eye pain and a bit of pressure. It's funny because it's a diuretic but it doesnt make me pee more.. I have a severe panic disorder called agorophobia and my worst fear is getting a shunt.. I honestly don't think I could live with that. You're lucky to have good doctors.. I recall you saying you live in california. I live here in stockton california and the doctors here at Kaiser are trash. It took me four months to get a referral to a neurologist, my doctor cursed me out saying these headaches are from anxiety and litterly called me an idiot and im just making things up. He told me "I'll refer you to a neurologist but just no you're an idiot there's nothing wrong with you" smh. That's how these doctors over here are. It sucks. How are you feeling now? Any updates? Hopefully your stent can be a permanent fix

[@MC-ju6pt]

Wow! I’m glad you are doing ok . I some research and I came across your you tube channel I’m am so glad I look up transverse sinuses. I take diamox , topiramate and rizatriptan. I get major migraines feels like my head is about to explode . Double vision. I’m seeing another doctor about a stent on Friday. I also have a ringing in my ear and right where the vein is behind the ear , once I put on it the ringing stops . Thank you for sharing your journey. I will continue to watch! Happy New Year to you and your son 🎉

[@marianieves2483]

Thank you so much for this info I’m going for my procedure next week I’m so scared

[@chasehenson2176]

Maria Rios How was your procedure and results?

[@mrchaddydaddy1]

has anybody on this thread experienced a wooshing sound in your ears? Its making me insane. I had a fall. than suddenly this sound whoosing. Now Im getting insane headaches that I have never had in my life before. Im so scared.

[@proserpinaj3766]

I’ve had whooshing for years. It literally hasn’t gone away with me. Some days it’s less though but some days it’s almost all hours, even when I have no other iih symptoms. My neuro said it’s bc of the stenosis

[@DJCALIFORNIACHEESE]

Thank you for replying. Have you found any solutions or anything that helps. I got a white noise thug to play while I sleep. Buy other than that I’m new to this. It seems so overwhelming. I have never had something like this.

[@mv3671]

I do get Pulsatile tinnitus. Did you find anything that helped?

[@sandmore1165]

Hi guys, i have the same issue , for 3 months now It started with high pitch tinnitus than after 2 months pulsating and whooshing , i am seeing my doc on Wednesday next week and he will send ne for some scans , i did some mri scans on my ear and neck cause i thought its from there but all was negative, the worst is when you feeling really bad and your symptoms are getting worse and nobody can help you , nobody know what it is , i am hoping i ll find out next week, will come back than to update you guys , maybe it helps someone who is in my situation as well…

[@GoodTV285]

The fall has made your atlas (c1) misalign, Google atlas misaligned symptoms tinnitus is a big symptom

[@SirChubbyBunny]

Was there anything you had to do in advance to prepare for your angiogram and your stent surgery? I have a video call with my neurology team tomorrow to walk me through my angiogram next month, and I'm wondering if there's anything you wish you were told beforehand. Thanks!

[@JaymeeCisneros]

With my angiogram there was not prep work involved other than not eating so many hours before the procedure. With my stent I had to start blood thinner before the surgery to try and reduce the risk of blood clots afterward (that was my hospitals protocol with this type of surgery)😊 My hospital also requires an overnight stay in the ICU to make sure everything is running smoothly, so I needed to make accommodations for my son and pets. That was about it😊 If you ever have any question call the hospital and talk to them about what they require for this procedure. Good luck, I hope you get well soon❤️

[@hippyvanobsessed]

Wow, this sounds incredible 🤯 x

[@Motivesandmakeup]

My stent was placed 2 weeks ago. Headaches minimal but improving. Pulsatile tinnitus instantly resolved. Vision not improved yet.

[@tiffanykistler1480]

I was diagnosed 12 years ago and i was born with it it was congenial. I also have a small vessel disease

[@ajpello2003]

Hi did u have any visual symptoms that felt like dreamy/foggy/being in a fishbowl? I don’t have ocular damage per se but tunnel vision/fishbowl sensation is very destressing.

[@kat4383]

Can you tell me who did your surgery and how experienced is he? I’m so glad it worked for you! I’m just looking into this. I’m hoping I’m a good candidate for this surgery. I live in Utah and found a Neurologist that does this surgery in NY, but then I saw your KZbin channel and noticed yours is from California, and that would be a lot closer, obviously!

[@caseygrove5788]

So I went to see a neurologist yesterday and on the 24th I go to see neurosurgeon to discuss stent. I lost 53 lbs and it didn’t help. My opening pressure was 38 I am not doing well on Diamox and I am only taking 1000mg a day. I have a hard time breathing get very winded did you ever have that issue? I am nervous but I have 3 young girls and have several bad days want to get better.

[@missuniverse84]

Hi, when I read you have difficulty breathing, I’m going through same! I’m not yet diagnosed, but in the process of doing series of tests. One of my symptoms is exactly that, difficulty breathing and shortness of breath!

[@mv3671]

@@missuniverse84did you ever find the root cause? Are you better

[@prescint10]

I had a small issue like that before where I had to go to the ER. I can’t believe how many people have been experiencing this

[@tiffanykistler1480]

Before ur surgery did u have swelling behind ur ears? I have severe swelling behind mine and severe stiffness and pain in neck and shoulders 😮help

[@BeenaKaKitchen]

I have been struggling since 2010. My transverse sinuses is narrowed due to blood clot and doctors kept giving me antidepressants.. don't know what to do.. feel dreamy.. fogy.. dead.. blur n dark vision.. it is so diff8

[@hanieletsantos3687]

Hi i was wondering how are you feeling now? Were you able to fix the narrowed transverse sinuses?

[@BeenaKaKitchen]

@@hanieletsantos3687 still fighting against it...medicines are not working..

[@skrajina8037]

Did you get this disease because of nasal polyps?

[@battlemotion8862]

Hi thanks for the video. I have had IH for 5.5 years now, only diagnosed a year ago due to having a cranial leak for 5 years because of the high pressure. I have stenosis of my left transverse venous sinus vein but doctors won’t do an angiogram as I’m in the UK and not available as much as the US. Did you feel dizzy when in high pressure?

[@battlemotion8862]

I’ve also been on Diamox for nearly 3 years and it makes you feel awful so I need to get off it. My neurologist new I was in high pressure since putting me on Diamox but tests weren’t conclusive because of the leak, however they’ve now finally factored this in 😂 I’m probably getting a shunt.

[@JaymeeCisneros]

Oh man that had to be a really hard 5 years! I definitely did get dizzy with high pressure, and I couldn’t bend over and get back up without my vision blacking out and getting lightheaded. I just barley started tapering off diamox since my stent was placed in March! Hoping I can stay off of it🤞

[@Princesszelda0097]

Hi! I'm hopefully getting a stent soon to help with IIH, and I was wondering how long it took you to completely recover

[@HananIbrahim-cb3wb]

How are u now

[@guineaslaughsandpets488]

How did you get the angiogram? My nerologist refuses to do any test and only says to lose weight and take diamox?

[@JaymeeCisneros]

I was also told to lose weight and was given diamox. In my case diamox never fixed my optic nerve inflammation, it would only temporarily pause it (or shrink them slightly) before getting worse. After months of no great improvement, I was referred to a neurosurgeon who did an MRV. This MRV revealed I had pinching in both of my transverse sinuses. My neurosurgeon also put off my angiogram because he felt it wasn’t a complete emergency. I had to advocate for myself and say I was struggling to tolerate my longer term side effects of diamox and really wanted to look into other options. We then agreed my angiogram was next. Hope this was helpful☺️

[@guineaslaughsandpets488]

Thanks I have no doctor now, my last doct walked to the exit told me to leave his office and not to come back. All because I wanted extra test ran to rule out anything else he said everyone with iih has stenosis. And weight loss was the only cure. Have you felt better after the surgery?

[@JaymeeCisneros]

Michelle lang that’s absolutely not true, many people with IIH don’t qualify for a stent because they don’t have stenosis (or it’s not severe enough to qualify for a stent). I really hope you can find a numerologist or neurosurgeon who will take you seriously, and at least do an MRV to look for stenosis❤️

[@guineaslaughsandpets488]

Well congrats on your successful surgery hope you feel better soon!

[@raquelescobedo-deleon2172]

You are your most important advocate when it comes to your healthcare sweetheart. If your Neurologist does not want to listen to you and even consider what you are requesting it is time to find a new Neurologist. My Neurologist did all the appropriate testing within a matter of weeks and I ended up needing surgery to resolve the issues. A simple analogy would be I look at taking diamox as putting a bandaid on a wound. Obviously , a wound needs to have help healing not just a bandaid. Sometimes, you need to find the right doctor for you to resolve the problems. Since this is not a common diagnosis not all doctors know as much as they should or could about it. I hope this helps you and you get a second opinion. Good Luck❤️❤️❤️

[@chiragmalhotra3707]

Mam was your left transverse sinus was hypoplastic?

[@hdcross7303]

Thanks for the videos. We done know how long I have had IIH now, but it got much worse over the past two years and in Jan 2020 I developed papelladema and my pulsatile tinnitus was unbearable. With covid its taken forever to get my diagnosis settled and to see the right people I have been on Diamox since April (7 months) and I was also topomax from march to july. I can't take more than 750m diamox a day with out my body throwing a fit and even at this level I'm starting to develop metaboic acidosis. Just recently had an angiogram, venogram and LP in a single day. I'm like you with bilateral transverse sinus stenosis that may be congenital (I was born this way). My pressure was 37. I'm scheduled for my left stent in 2 weeks but may eventually need my right done as well . Your accounts of recovery definently make me feel better about what I'm getting myself into

[@hanieletsantos3687]

Hi i have bilateral transverse sinus stenosis too just wondering did you have also cognitive issue?

[@nakitamcclain9670]

How are you doing now?

[@iambreannaa]

Can I reach out to you? I have this same disease and my doctor is thinking about giving doing me a stent.

[@Sierasimplelife]

I was just diagnosed with the same disease, did you experienced dimmed vision? Have you fully recovered from it?!

[@iambreannaa]

@@Sierasimplelife yes I have dimmed vision and I haven’t recovered from mine everyday is a challenge. I am currently on diamox

[@hanieletsantos3687]

Hi i was wondering did you have also cognitive issue? I have bilateral transverse stenosis they did a LP it was 19 but i l have cognitive issues with it

[@hippyvanobsessed]

Could I ask, how long did you have to stay in hospital and how long were you off work (if you work) x

[@HarmlessHobby]

Do you know why you got stenosis?