Hello,
Has anyone here had vascular eagkel syndrome diagnosed after imaging but with debilitating PT as their only symptom?
My images do show compression and no other cause has been found for my PT.
But upon reading people’s experiences it seems most have more than one symptom.
I had intermittent PT which could be felt at times in my stomach and other times in my ear. I still find it hard to differentiate IJV compression symptoms from my nerve damaged symptoms but I think I had little IJV issues for the majority of my years undiagnosed. I had tinnitus and would get skull base headaches irregularly but didn’t have any head pressure or anything like that until I got into an acute condition (12 years after my first symptoms started). 5 months post surgery, I havent had PT or constant head pressure for a couple of weeks now. Tinnitus comes and goes but I don’t have it right now. PT wasn’t one of my major symptoms (as I say it would come and go) and so it might take a bit longer for major symptoms of yours to resolve post surgery.
I don’t have PT but try this experiment that works for me when my tinnitus ratchets up to high pitched tone. It usually happens to me when lying down . I very slowly move my head into different positions and watch the effect. I can usually stop it thus proving to me it is a mechanical issue…at least for the high pitched tone . While I have been experimenting it is always left ear. My right IJV has the most compression .
These days when it wakes me up I just flip sides because that is what quickly shuts it down.
@markp - We’re all built differently so it’s possible your nerves are being spared entanglement w/ your styloids & only your IJVs are affected & your symptom is just PT. It’s near miraculous that you don’t have massive headaches, IH, & visual changes which most people w/ significant IJV compression experience (not all get PT).
I know that chronic tinnitus/PT can cause depression (from personal experience), & I even know of a person who committed suicide because of it, but he didn’t see doctors who had a clue about what causes it which was unfortunate. I heard his story after he’d died so was too late to offer him help. He was on a Meniere’s Disease forum I belong to but rarely visit because I spend so much time here. 
You have the benefit of being in the right place to get answers & solutions even if it’s a bit of a journey to get to the point of recovery. I’m glad you’re here.
It is unusual to have that as an only symptom I’d say from reading posts on here for a few years… Like @BraveKat I had nerve issues initially & was diagnosed with ES because of that, the vascular symptoms came later & then the IJV compression diagnosis. I’ve been lucky though in that the pulsatile tinnitus was annoying but not a massive impact for me, the head pressure & weird symptoms from that were worst.
I’ve probably mentioned it to you so sorry if I’m repeating myself, but have you looked at whooshers.com?
Texas roadhouse CEO killed himself because of severe tinnitus after Covid
That’s what I found with my PT in my ears too. I mostly had it when lying down and food moving my head position often resolved it.
For my stomach PT though (honestly don’t even know if this is a real thing as it’s not heard it’s felt) I found the same thing too - changing position makes it less noticeable.
@ JugularEagle - YIKES! I hadn’t heard that! I’m sorry he didn’t find a support group that could give him resources that could have prevented his untimely demise.
@markp, hi. Wish I could say I only have one symptom. My tinnitus seems to take on many forms. Sometimes it sounds like loud screaming, others like crickets, soldiers marching on tin, my heart pounding my ears.
Other times it sounds like ringing, bees buzzing. Ive always been afraid to do anything but the surgery they said was fin. I was hoping after my surgery that most of my symptoms would be on Eagles Wings and on their way flying away. Don’t want to discourage you but ive been told by family here and by my Doc that it takes a while to heal. This didnt start quickly, i can’t
expect it to fly away quickly. I actually see Dr DeSilva in Columbus Oh tomorrow morning for my first post op appt. I hope i wont have so much brain fog that i will understand doc’s explainations.
Im sorry i didnt understand all that you were explaining. Are you saying you’ve been diagnosed but only seem to have the one aggravating symptom? Since im newer here have you had many treatments or surgery yet? Im learning so much. If you have no objection i would like to pray for you. Prayers would be to my God but im sure if you pray to another higher power i feel the sentimments and all in need of healing in this 
world. Well , im sorry. I fell asleep and actually slept well. Tomorrow morning got here I and saw Dr DeSilva and he said I was healing well but it will still take time. Many symptoms may need to be attended to by other medical personnel. Its been discovered i have a small brain tumor from which could be the cause of my on and off severe headaches, my vertigo, dizziness, fainting, light headedness, blurry, and double vision. Im probably going to be referred to a neurosurgeon.
@markp please take care. Let me know what happens with your PT . I’ll want to know what can be done to help you. From @Sandys_Mom21
@Sandys_Mom21 I’m sorry that you have a brain tumour & need more investigations for that , will pray that it can be monitored…praying for that & improvements after your ES surgery, hugs as well 
Hello again, I am discussing surgery with a doctor. He tells me I would only need one night in hospital for a C1 / styloidectomy and then stay another night in a hotel. I would like to know how long did those people who had trhe op stay in hospital. Also do you think I will be able to travel a short distance by tube following discharge? Thanks
I didn’t have a C1 shave, just the styloidectomy but I definitely wouldn’t have wanted to go by tube the day after discharge- I wasn’t in too much pain but felt really quite wobbly, the walk down the hospital corridors was enough… Will you have anyone with you?
Hi, just my wife which is a problem. She is small, I cannot expect her to carry me. But I can’t stay in hospital for days, considering also that I will be paying privately at least for the first operation…
@markp - Usually it’s just a one night hospital stay. If your pain is able to be controlled with acetaminophen instead of Rx pain meds, you may be less wobbly after surgery.
If you could get a taxi to your hotel & your wife could manage your bag then that would be okay I’m sure? Maybe you could stay an extra night in the hotel to make sure you’re feeling less wobbly?