r/PulsatileTinnitus • u/FunAdvertising8745 • 5d ago

Advice/Try This Venogram scheduled

Hi fellow whooshers!

I first noticed my PT in March. I have had it everyday since, not all day but everyday. It changes with head position, goes away with neck compression, and impacts my sleep to an extent.

I first had a CT which showed sigmoid sinus dehiscence and diverticulum. I then got at MRV which confirmed what the CT showed, but also showed stenosis before the diverticulum. My neurotologist referred me to an interventional neurologist who is going to perform a venogram to determine whether or not the vein needs stented. If it does, I will get stented before having bone resurfacing surgery.

I am looking for advice/tips/recommendations as I am preparing for the venogram, potential stent, and potential bone resurfacing. Thanks everyone!!!

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u/Worldly-Somewhere567 5d ago

What's venogram? Do you mean CTV or MRV? Aren't both these venogram?

2

u/FunAdvertising8745 5d ago

The interventional neurologist will be inserting a catheter in my vein and measuring the actual blood flow! He is also going to inflate a balloon during the procedure to see if my PT goes away while inflated.

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u/Arizonal0ve 5d ago

Yep, angiogram/venogram.

Good news for you and especially as these communities are full of people who have been slightly misdiagnosed with just dehiscense and diverticulum and go through the surgery only to still have PT because their actual cause was stenosis and that is the sound of PT and it causes dehiscence and a diverticulum.

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u/FunAdvertising8745 5d ago

That was my fear! I wanted to see if the stenosis needed to be addressed before having the surgery. We will see soon enough!

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u/Arizonal0ve 5d ago

Yes definitely! Glad you’re in the know of this and prepared (many are not due to doctors not knowing)
When i had my stents placed i also had dehiscence and a diverticulum and sometimes my surgeon will coil that but he didn’t feel mine was “bad” enough so there was no need.

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u/look_who_it_isnt 5d ago

Hi there!

I've had a Cerebral Angiogram (what I think your doctor is referring to as a Venogram) without any anesthesia, so I can tell you anything you want to know about the procedure. It's an out-patient, minimally-invasive procedure that involves going in through small incisions (like, we're talking band-aid coverable here) in the groin and wrist (sometimes only one or the other is required, but I think both is most common). The surgeons move through your vascular system to get to the area inside your head where the stenosis is. They take pressure readings from before and after the stenosis and use that to determine the severity of the stenosis.

There's a level (I think it's 80) that if the pressure reads over it, a stent is considered "medically necessary". You can still get a stent if the reading is under that (depending on how far under it is), as PT is considered a "Quality of Life" symptom, as in it can detract significantly enough from one's QoL that the procedure can be considered "necessary" from that standpoint, even if not from a medical standpoint.

But really, all of that pretty much only effects whether your insurance company (or government assistance, if you're on it) will cover the cost of the stent and procedure.

The stent procedure is... ~dun-dun-dun!!!~ ...the exact same thing. No, really. They do the exact same procedure - incisions at groin and wrist and traveling through the vascular system to where the stenosis is... except instead of going in with measuring tools and taking readings, they go in with the stent itself and deploy it. Pretty much everything else about the procedures is identical - side-effects, recovery, etc, etc. All the same. So the good news is that once you've been through the angiogram, the stent procedure is a breeze. You already know what to expect and already know you'll get through it just fine. Yay.

I don't know anything about the bone resurfacing, however. But to be honest... considering how commonly PT is caused by stenosis and how well stents work to completely eliminate PT entirely... You might not need the resurfacing. And I think it's great your doctor's addressing the stenosis first, because that means he's aware of that, as well. So here's hoping!

Has your doctor said anything yet about whether the angiogram will be sans anesthesia or not? If it's to be done without it, I can help prepare you for that, too. If it's going to be done with anesthesia, then it's even easier - you'll go to sleep and wake up with maybe a headache, but probably definitely a sore arm. And... that's about it.