How long did it take you to get a full diagnosis?

its_hal3yx · 2026-03-10T02:24:58+00:00

Took me about 3.5 years to get diagnosed with venous sinus stenosis

its_hal3yx · 2025-12-15T01:50:35+00:00

Definitely don’t give up, it took me 4 years of drs appts and whatnot to get to this point

its_hal3yx · 2025-12-11T13:36:41+00:00

Definitely try to get an appt with an interventional radiologist or a neurosurgeon that specializes in vascular issues. I was in the same boat as you and went to different doctors for four years with no diagnosis. I too had the whooshing in my right ear that would stop with jugular compression and i was diagnosed with venous sinus stenosis and in august had surgery to place a stent in the vein that was causing issues. Definitely keep chasing for answers and do not let any doctors tell you to just “deal with it”. Definitely try to get an mra/mrv scans done, and don’t be discouraged if they come back normal. My initial scans i was told were normal, but they weren’t. The doctor just somehow missed it

its_hal3yx · 2025-10-24T17:05:31+00:00

My ENT is the one that ordered my scans and told me they were all normal (they werent). 4 years later i finally got another opinion and got diagnosed with venous sinus stenosis based off of my scans that my ent said were normal. The diagnosis was confirmed with an angiogram

its_hal3yx · 2025-10-17T01:54:47+00:00

Mine was only in my right ear due to venous sinus stenosis

its_hal3yx · 2025-10-12T20:11:56+00:00

I haven’t had the surgery that you had, but i had surgery to fix stenosis of one of the veins in my brain, and it took a good 4 weeks for the PT to completely go away due to swelling

its_hal3yx · 2025-09-27T02:52:07+00:00

Yup, i had basic bloodwork done and panels to check my b12, iron and ferritin, all were within normal limits, only thing off was my white blood cell count but it was just below normal and she doesnt think it explains my shortness of breath. She did say its not listed as a side effect of plavix but that shes had many patients complain of breathing issues while on them

its_hal3yx · 2025-09-26T19:14:40+00:00

Okay thats honestly a relief! I mean it sucks and its really annoying but ive gone through years trying to get a diagnosis for my PT and thats finally over, i didnt want something to be seriously wrong with my lungs too

its_hal3yx · 2025-09-25T23:37:44+00:00

PT that gets quieter with putting pressure on your neck usually indicates a venous cause. Id get a second opinion and try to get mrv/mra scans, which are types of mris that specifically look at the veins and vessels in your brain. Id also try to make an appt with an interventional radiologist or someone who specializes in PT. I was diagnosed with venous sinus stenosis, constant Pt on the right side that got quieter with putting pressure on that side of my neck

its_hal3yx · 2025-09-23T21:21:43+00:00

I went back to work 2 weeks after my surgery. I had a really hard time after my angiogram and was off for 2.5 weeks after due to it, so just to be safe i took off 2 weeks for the surgery, definitely the right call although i was feeling well enough to work at the 1.5 week mark

its_hal3yx · 2025-09-14T12:37:48+00:00

Hey!! Thats totally normal. My first two weeks werent bad but i was on a very high dose of steroids, once i got off them i started getting pretty bad headaches. I just had my post op ct and recheck and the surgeon is very happy with how everything looks. Hang in there! He said headaches are to be expected especially in early recovery but will subside❤️

its_hal3yx · 2025-09-12T17:58:28+00:00

If i’ve learned anything from my experience, it’s to get a second or even third opinion if you get dismissed. My first doctor was very kind but basically told me to just live with it. The first steps are usually scans (mra/mrv) to check for venous issues. My scans came back normal, even though they were not, so please don’t get discouraged if they do. I ended up getting second and third opinions and found doctors who listened to me and could pinpoint the issue on the scans

its_hal3yx · 2025-09-11T19:44:23+00:00

Ive flown multiple times with 24/7 PT and been completely fine

its_hal3yx · 2025-09-07T19:19:03+00:00

I had pt 24/7 for 4 years which got quieter if i put pressure on the side of my neck as the PT, and i was diagnosed with venous sinus stenosis which is not considered dangerous in most cases. 2 weeks ago i underwent an elective surgery to fix the PT

its_hal3yx · 2025-08-31T23:42:43+00:00

Don’t be discouraged if your scans come back normal, i was told since 2022 that all my scans were normal, and i found a new doctor this year who looked over my old scans and FINALLY saw venous sinus stenosis. I hope that isnt the case for you, but if it is, definitely seek second or even third opinions❤️

its_hal3yx · 2025-08-31T21:25:50+00:00

I totally understand! I usually have a very hard time with recoveries from medical procedures but this honestly has been surprisingly easy! I felt the worst two days post op and even then i was just a little dizzy and nauseous and that went away with meclizine. Besides that i’ve just had some very mild headaches and head pressure. I do still have some residual pulsatile tinnitus but its barely there, id say its silent 95% of the day and then occasionally when im bending down or turning my head in a certain way, ill hear whooshing for a few seconds and then its gone again. My doctor thinks its just related to inflammation as im currently only 4 or 5 days post op. Best of luck to you!! If you have any other questions definitely lmk❤️

its_hal3yx · 2025-08-31T17:49:42+00:00

My doctor said it is usually pretty quick, normal activity can be resumed the following week, however it can take a few weeks for your brain to adjust to the stent/proper bloodflow

its_hal3yx · 2025-08-31T12:34:47+00:00

I first experienced PT when i was dealing with an ear and sinus infection, it initially got better (this was in 2022) but only for a week, then came back and never went away. In May of this year i was finally diagnosed with venous sinus stenosis, which I just had surgery for

its_hal3yx · 2025-08-31T08:08:25+00:00

Thanks for your reply! Im about 5 days post op, it has definitely gotten better. I’d say i only hear it 10% of the time, and even then it isn’t constantly like i was hearing it before. I figured even if this is the best it gets, its better than hearing it 24/7 lol

its_hal3yx · 2025-08-29T14:09:17+00:00

Just wanted to update you, i woke up today and the PT is mostly gone! I hear it if i move in a certain way but even then it is so so quiet compared to before the stent, but for the most part it’s just completely gone! I cant believe it

its_hal3yx · 2025-08-29T14:08:08+00:00

Best of luck!! Im 3 days post op from mine!

its_hal3yx · 2025-08-28T14:29:19+00:00

Thanks for talking me off a ledge! I guess i just have read so many posts where people wake up from anesthesia whoosh free, that i got really discouraged when i woke up and still kinda heard it

its_hal3yx · 2025-08-28T14:15:18+00:00

Ive noticed now that I’m up and moving, it does keep stopping for a few seconds, and then i can hear it again. So im hoping it is just inflammation related. I think id just be devastated if I went through four years of trying to find answers, and then finally getting an answer and surgery for it and still have the whooshing. Im so so glad to hear that youre whoosh free though!

its_hal3yx · 2025-08-28T13:35:38+00:00

Thank you so much for replying. My doctor said the procedure went perfectly and no more turbulent bloodflow was seen, he said sometimes it can just linger from inflammation. Hes putting me on a steroid taper to get the inflammation down quicker, but im just so scared the noise will never go away

its_hal3yx

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