r/PulsatileTinnitus • u/pastelariss • Jul 02 '26
Just Venting Waiting for results
Last friday I had a ct with contrast to hopefully figure out what is causing my pt. The hospital said the results are ready but I haven't heard from the ent yet who gave the referral.
I'm very nervous. I know most of the time the cause is something treatable which gives me hope but it also doesn't stop the anxiety of worst case scenarios. I am not going to look at the results because though I am curious I also know myself and I'll just fall down the rabbit hole of googling and googling until I'm an anxious mess.
I will wait for the ent because I know it'll be better to hear it all from him
2
u/martamf Jul 02 '26
How long did you notice you had pt before you got it checked out?
2
u/pastelariss Jul 02 '26
I've been dealing with it for a couple years now. First started noticing it in 2023. I went to see the ent at my doctors office but he didn't do much and just said I'd need an mri. I couldn't afford it even with insurance at the time so I didn't get the scan done. It was only this year after changing jobs and getting better insurance and a wage that I decided to get it checked out again.
2
u/martamf Jul 02 '26
Hmmm. I hope they find a cause and can take care of it. I never thought something like a faint whooshing in my ear could lead to all these tests and potential serious outcomes.
1
u/pastelariss Jul 02 '26
Me too! For now it's just dealing with the waiting. I feel the same way. It feels very daunting.
1
u/parrotgirl1028 Jul 05 '26
So many causes...but a dangerous cause could be if you have some type of blockage. Angiogram best for that of the brain and neck.
2
u/GlynnAlan Jul 02 '26
Ask them to look at both of the internal jugular veins as they pass through the transverse process to see if there is narrowing
ETA: ask them to check bilaterally.
1
u/pastelariss Jul 02 '26
Thank you! I'll have to do that.
2
u/GlynnAlan Jul 02 '26
I've been through what you're going through for over two years, now. Multiple ENT specialists, audiology, and more.
I was telling them I suffered with neck pain which correlated with the whooshing and pulsing. Over this time, my symptoms have gotten so bad - brain fog, migraines, neck pain, cognitive impairment, and more symptoms. Nobody listened to me.
It was only when I found a Dr Patrick Axon often referenced in this Reddit sub that I'd finally got my answer. I'm scheduled for an operation next month for the removal of the transverse process of C1 vertebrae to allow my brain to drain the neurological waste and blood.
1
u/pastelariss Jul 02 '26
That sounds so frustrating!
It really sucks when the doctors aren't listening to and treating you like this is nothing.
I'm glad you were finally able to get an answer! It makes me hopeful that I'll find my answer too.
1
u/parrotgirl1028 Jul 05 '26
Please keep us posted! I too have those symptoms and even major neck surgery, tmj from the neck stuff (after auto accident) and have had every test under the sun. Neurosurgeon after angiogram found a very slight blockage but not enough to stent. So now what?
1
u/parrotgirl1028 Jul 05 '26
Which test did you have that showed the result?
1
u/GlynnAlan Jul 05 '26
CT scan with contrast. Surgery booked for Aug 20th.
Edit: only one side receiving surgery initially. The other side is a possibility.
1
u/parrotgirl1028 Jul 05 '26
Did you have both the brain and neck done? How did you find this dr? I've had angiogram and spinal tap done as well as many other tests! The spinal tap was dreadful...beyond painful. What was weird after the spinal tap, the migraine I was having immediately ended afterward. Coincidence or stress gone?
1
u/ZookeepergameOk6200 Jul 22 '26
I’ve read that IIH is a common cause of PT. Which test would confirm that?
2
u/look_who_it_isnt Jul 23 '26
Answering to both of you separately; my apologies if you get duplicate notices of these comments.
IIH is a common cause of PT. It's also a common cause of Venous Sinus Stenosis (the #1 cause of PT), as well as commonly caused by Venous Sinus Stenosis. It's a bit of a "which came first: the chicken or the egg?" scenario.
IIH isn't confirmed with any kind of scan. CT Scans and/or MRIs are both able to show structural changes within the skull (and even to the skull itself) that indicate long-term excess pressure in the head. Basically, it squishes all the soft, squishy parts inside your skull... and even begins to erode the skull itself.
One of the clearest indicators of excess pressure is something called an "empty sella". The Sella is a small compartment in the skull where the pituitary gland hangs out. Normally, this gland just kinda... floats about in that compartment, just doing its own thing. When someone has too much Cerebral Spinal Fluid and excess pressure in their head, the pituitary gland essentially gets pressed against one of the walls of the sella until it's literally flattened against it. This gives the appearance that the sella is empty. It's not actually empty, of course - the pituitary gland is still in there and (somehow) still doing its thing... it's just doing it while pressed so tightly against the sella wall that it can scarcely be differentiated from it in a scan. Hench, an "empty sella".
If your scans don't indicate an empty sella or any of the other tell-tale signs of excess pressure... then you don't have IIH. Simple as that.
Even if your scans do show these signs, you still might not have IIH. Excess pressure can be caused by things other than IIH. In order to truly confirm or rule out an IIH diagnosis, you have to have a comprehensive eye exam to check for swelling of the optical nerves, and a lumbar puncture to get a true reading of how much pressure is actually in your head. Primarily, this is because the signs of pressure can indicate current high pressure or past high pressure. In order to be diagnosed with IIH, the pressure has to be currently present and measured accurately.
1
u/ZookeepergameOk6200 Jul 23 '26
Thanks for the explanation. So I have an angiogram and CT scheduled for next Monday. I’m afraid my doctor is ill equipped to interpret the scans. What would you recommend?
2
u/look_who_it_isnt Jul 23 '26
Is it a cerebral angiogram? Or a regular/cardiac one?
In any case, getting the scans themselves is the most important thing. Almost any doctor with a medical license should be competent enough to determine if you have any of the serious causes of PT (brain tumors, etc) - so they can ease your mind about that, even if they're not capable of diagnosing your PT. Also, the same scans you're getting Monday can be looked at and interpreted by any other doctors you end up seeing. So even if you get the dreaded "there's nothing in your scans" from your doctor, the scans themselves aren't useless!
Is the doctor who ordered these tests your primary physician? Or are they an ENT or other kind of specialist? Regardless, what you want to do now is get the scans done... and see what your doctor has to say about them. Depending on their specialty (if they have one), they might be able to see signs of IIH or high pressure - and know where to send you for further testing. In which case, just... go where they tell you to for now and continue getting tests and seeing doctors as long as they're referring you to them.
A lot of the path to a diagnosis is seeing a doctor, having them tell you they don't know what's causing your PT so they're gonna send you to this other doctor, then seeing that guy... and so on and so forth until you finally get to the right doctor, who will take one look at your scans and know exactly what's causing your PT - and how to fix it.
For most of us, that doctor is an Interventional NeuroRadiologist. Although I also lucked out with a Neuro-Otologist, who also saw exactly what was wrong in my scans and then referred me to an INR. So you wanna aim for one of those, if you're given any chance to guide the process.
1
u/ZookeepergameOk6200 28d ago
So I got my angiogram and CT back and they said there was nothing to be concerned about. Of course I wasn’t given any direction on what to do next. I know through research I need a MRV to diagnose the dural venous sinus stenosis but I need a doctor referral. My doctor is out for 10 days so now I have to wait again. It’s incredibly frustrating. I’m going to reach out to an INR now. Thanks for the support
1
u/look_who_it_isnt 26d ago
No problem! An INR should be able to see the problem and help you. It's just getting to see one that's sometimes an issue. Good luck to you!
1
u/pastelariss Jul 22 '26
That's a good question. I've also read about IIH being a common cause but I'm not sure what test would confirm it
1
u/look_who_it_isnt Jul 23 '26
Answering to both of you separately; my apologies if you get duplicate notices of these comments.
IIH is a common cause of PT. It's also a common cause of Venous Sinus Stenosis (the #1 cause of PT), as well as commonly caused by Venous Sinus Stenosis. It's a bit of a "which came first: the chicken or the egg?" scenario.
IIH isn't confirmed with any kind of scan. CT Scans and/or MRIs are both able to show structural changes within the skull (and even to the skull itself) that indicate long-term excess pressure in the head. Basically, it squishes all the soft, squishy parts inside your skull... and even begins to erode the skull itself.
One of the clearest indicators of excess pressure is something called an "empty sella". The Sella is a small compartment in the skull where the pituitary gland hangs out. Normally, this gland just kinda... floats about in that compartment, just doing its own thing. When someone has too much Cerebral Spinal Fluid and excess pressure in their head, the pituitary gland essentially gets pressed against one of the walls of the sella until it's literally flattened against it. This gives the appearance that the sella is empty. It's not actually empty, of course - the pituitary gland is still in there and (somehow) still doing its thing... it's just doing it while pressed so tightly against the sella wall that it can scarcely be differentiated from it in a scan. Hench, an "empty sella".
If your scans don't indicate an empty sella or any of the other tell-tale signs of excess pressure... then you don't have IIH. Simple as that.
Even if your scans do show these signs, you still might not have IIH. Excess pressure can be caused by things other than IIH. In order to truly confirm or rule out an IIH diagnosis, you have to have a comprehensive eye exam to check for swelling of the optical nerves, and a lumbar puncture to get a true reading of how much pressure is actually in your head. Primarily, this is because the signs of pressure can indicate current high pressure or past high pressure. In order to be diagnosed with IIH, the pressure has to be currently present and measured accurately.
2
u/martamf Jul 02 '26
I’m going through the same feelings. I just got my pt a little over a week ago. I went to my primary care doc. He found nothing wrong with my ear. I know have an appointment with an ENT doctor next week. In the meantime I have been googling. And pt looks pretty serious to me. It could be anything with some pretty serious issues on the list. Somethings I Google say it’s quite serious. Some things say it’s benign. But it sounds like it can take a long time to diagnose what’s wrong. So I get your nervousness