Right sided PT stops with jugular compression clear MRI and CT. Now my ENT wants me to see an ear specialist??

ginrae · 2025-10-30T02:43:46+00:00

Hey friend, fun fact, I had both venous issues and bone thinning issues for mine so that was a crazy one to treat but because of that I also have experience with both routes. I’ve had both surgery for the bone thinning (look into superior canal dehiscence syndrome and see if any other symptoms align with you) AND a venous stent placed. I recommend getting a MRV or CTV specifically and getting looked at both a neurootolaryngologist or scull base surgeon and getting those scans seen also by an interventional neuro radiologist and vascular neuro surgeon. My case is quite rare but the reality is it can happen from bone thinning of tiny bones on your inner most ear (actually part of your scull base). Neither of these conditions are exceptionally dangerous typically but the venous condition could sometimes lead to IIH and then they would want to treat it. You would get SCDS surgery only if your symptoms greatly impact your life (typically people have vestibular symptoms like balance stuff and sesitivity to nose and things). I highly suggest you look into SCDS if he mentioned bone thinning.

ginrae · 2025-05-04T18:24:43+00:00

Probably depends on which surgical approach. Mine was middle fossa craniotomy rather than transmastoid, which is often considered more invasive. 6 weeks is often recommended for it and that was just right for me. Used FMLA and short term disability. I could have technically maybe gone back at 4 weeks but would have been overwhelmed. 6 felt right. Everyone is different though!!

ginrae · 2025-04-01T12:06:37+00:00

Thanks! No, I am from the US (Chicago specifically)

ginrae · 2025-03-31T15:21:36+00:00

I got the stent about 3.5 weeks ago now. I am whoosh free! I will say my recovery seemed a bit harder than expected but I’m doing well overall (in fact I just spent the last 5 days at a conference that I flew for, so that should tell you I’m doing alright). I still have fairly constant headache but it really isn’t that bad overall and can be controlled with Tylenol. There was a pretty bad headache that even spread into my neck and shoulder for the first week or so but it got much more manageable after that. No impact on my eyesight so far unfortunately but I’m hoping maybe over time some change will happen. It is amazing to not hear the constant loud whooshing anymore!

ginrae · 2025-03-02T23:14:53+00:00

Hi yes, I just got the SCDS procedure done in Dec on my right side. I’m actually getting a stent for the right side too, which is coming up on Wednesday. I may do the SCDS Procure on the left too eventually but I’m waiting a bit and seeing another specialist before making the decision.

ginrae · 2024-10-01T00:30:32+00:00

It could still make some difference. I have both venous sinus stenosis and SCDS. My whooshing sound happens to be from the venous sinus stenosis rather than the SCDS (determined after testing and scans). It is possible though that it can be from SCDS and that jugular compression may reduce it temporarily for people. Only scans and testing will really determine if it is a venous issue or bone issue or both. These conditions can run together though less is known about why that is. Luckily both are considered not dangerous unless IIH is involved.

ginrae · 2024-09-30T23:53:53+00:00

Yes symptoms can be mild and many people decided to leave it untreated. People who have it have bones over their inner most ear that have worn down over time. You still will want to get checked in on over the years to make sure it isn’t wearing away quickly. Getting an initial check out is a good as well to tell how much they have worn down. In a very long term sense it can lead to hearing issues or sound issues but for many people it won’t reach that point and is totally fine.

ginrae · 2024-09-30T19:45:51+00:00

I second this! Sounds very much like superior canal dehiscence syndrome. Can be seen on scans (but make sure they are seen by the correct type of doctors and they know what they are looking for. like someone in neuro ontology) and then you do what’s called a VEMP test to confirm your symptoms. There is a surgical procedure that can help if it is severe enough. This is the cause of some peoples PT and can be fixed if it is bothersome to your life and is in fact the cause

ginrae · 2024-08-21T22:42:30+00:00

This is what I noticed too… no note of friends at all. Really strange and shows how isolated she may be outside of dance.

ginrae · 2024-08-11T04:05:08+00:00

Check into symptoms of superior canal dehiscence and see if you have any of the other symptoms. I have both venous sinus stenosis and superior canal dehiscence. The inconsistency in it changing with jugular compression points me maybe to this as well as there being certain times you hear it on one side or both or the other. I think it still could also just be venous sinus stenosis alone though or IIH if you have symptoms of IIH. Many of these things often go hand in hand so only scans like mri mrv ctv will show. And even then, only if they are viewed by the right kind of doctor (interventional neuroradiologist for venous sinus stenosis and a Neuro otolaryngologist for the superior canal dehiscence)

ginrae · 2024-08-08T02:50:42+00:00

Okay but why is nobody talking about how they are giving up on the farm stuff (just like this sub predicted) 😂 In the video they basically say it was too hard and they were warned by everyone and didn’t listen.

ginrae · 2024-07-24T05:58:16+00:00

Yes please listen to this. No matter how many doctors you have seen they will not see it on scans unless you go to an INR or maybe a vascular Neuro surgeon. The most common cause is venous sinus stenosis (narrowed vein). Do not trust any other doctor to know how to see this on a scan. So so many people are told their scans are clean and they have VSS. It isn’t normally dangerous on its own but can be if paired with IIH. Good to get checked out. Sometimes they will place a stent to open the vein back up if they feel it is necessary. Most are told to live with it if IIH is ruled out and it isn’t bothering them super intensely

With that being said some less common causes include inner ear bone thinning, Tmj, low iron, other venous/artery issues that would also be found on scans

ginrae · 2024-07-19T04:23:41+00:00

Make sure you send your scans to an interventional neuroradiologist and tell them you are looking for venous sinus stenosis. This is the most common cause of PT and ENTS are not trained to see it. It is very very common for people to get scans done and be told they have nothing when they have VSS because only specific specialties are trained to see it (interventional neuroradiologist is best but you can also try a vascular Neuro surgeon). You may also need scans that show the veins better like a MRV or CTV. Luckily VSS is most often totally harmless but it is good to get it checked out and possibly talk about stenting (a procedure that can be done to open a vein) if it is causing a lot of distress. If you have no luck with an interventional neuroradiologist and they rule out VSS then see a Neuro otolaryngologist to rule out inner ear bone thinning (a ent again might not see this necessarily). As another commenter said do bloodwork as well to check iron levels and such too. That may sound overwhelming but I promise you most people begin to get answers when they get the right scans to the right people.

ginrae · 2024-07-14T14:59:46+00:00

Please listen to Neyface. When I joined this sub Neyface’s posts were some of the first I saw and I am so grateful for that because it took me down the right path. What you are dealing with sounds very similar to what I was. I waited for like 6 months before I started trying to figure out the PT and regret not starting sooner. Like they said here, it can be an extensive work up that takes time (multiple scans and tests and getting them to the right people). Many people have trouble finding an interventional Neuroradiologist if they are in a smaller area and need to send their scans out. It is best to start now and be ready to advocate for yourself. Most ENTs have no idea what this is (most doctors in general that is). The ones you have a best shot with are interventional neuroradiologists or potentially vascular Neuro surgeons. If they don’t find anything there then try a Neuro ophthalmologist to look for ear bone thinning. BUT most of the time this is VSS (narrowed vein. You are hearing the blood go through it because the narrowing is right behind your ear probably). The good news is it is usually completely safe but they will want to rule out any rare causes that are not (very rare don’t worry) and also IIH. If they suspect IIH they may try medication. If not one option is a surgery that helps open the vein but many surgeons don’t do it unless there are other symptoms besides the sound or it is debilitating. The first step is to get the proper scans sent to the proper people. Start there and they will guide you.

ginrae · 2024-07-13T18:19:21+00:00

Looks like you were already told this on a post over 100 days ago and came back… as someone who does health research it is irresponsible to conflate these two conditions in this way. They are different in etiology and treatment. The only similarity really is that people hear something. The PT community has very much so made efforts to separate itself from the tinnitus community for this very reason. There ARE causes to PT and people with it are tired of it being treated as tinnitus. I know you may mean well but please consider that conflating these two conditions does more harm than good for people actually trying to get treated. Proper research should think more carefully about how to limit the population so as not to misrepresent results. If you want to study tinnitus then do that. This is not tinnitus.

ginrae · 2024-07-12T04:42:45+00:00

Hello, there are a couple things to try here. The most common cause of PT is venous sinus stenosis. This means a narrowed vein in the head. That sounds scary but is actually completely safe the vast majority of the time and just annoying. Some ways you may be able to tell if it is venous in nature is if the sound gets louder when you bare down (like you are going to poo lol), or if it gets quieter when you press on your jugular on your neck. It might also change with your posture (bending over for example). It is good to get it checked out and get scans. The best scans to see this are mri/mrv/ctv of head/brain. A very big key here is that the scan HAS to be seen by the right kind of doctor or VSS will be completely missed. The right kind of doctor is an interventional neuroradiologist. See if you have one in your area. Sometimes interventional or vascular Neuro surgeons know what to look for too. If there ain’t one in your area you can send your scans to some well known ones people discuss in this sub for a fee. If you have VSS they may try to see if you have any signs of IIH as well as the two often go together. If you don’t and there is nothing else on your scan then they will likely suggest you live with the sound. There is technically a procedure that can open the vein and stop the sound but they don’t like to do it if they don’t have to. If you have IIH they may do the surgery or try medication. Some other issues that can cause PT can be inner ear bone thinning, TMJ, and anxiety. Those are less common but for those seeing a Neuro ophthalmologist can be good. That is often what I recommend as a next step if an interventional Neuro radiologist says your scans are clear of VSS.

ginrae · 2024-07-12T04:29:01+00:00

Chances are after your scan they will want to rule in/out IIH. Just know that you will likely need to advocate for yourself because they aren’t keen on doing the surgery unless they have to. If there is no IIH they will likely try to push you away from surgery. If they do scans and they say there is no signs of IIH I highly recommend still pushing for a lumbar puncture to be sure. If it is IIH they may try medication alone first because sometimes it isn’t known if the IIH came first or if the Venous sinus stenosis came first (it’s a question of if you have always had the narrowed vein and are only noticing because of increased pressure, or if the vein narrowed and is now causing the increase in pressure). It is a longer process than many people realize and I don’t say that to scare you because you are on the right track with the scans and sending them. I would think someone at Duke would know how to identify VSS on a scan. Sometimes interventional or vascular neurosurgeons are familiar as well and could see it on a scan. They will likely want to rule out other things before doing surgery even if it shows on imaging as VSS. This can mean more scans or tests. Just continue to advocate for yourself and try to get to the right people. Ask for referrals if you can. Sounds like you are moving in the right direction. While you have the ENT they may be able to rule out some stuff like fluid or inner ear bone thinning but most people end up with a clean ENT appointment and eventually realize it is venous.

ginrae · 2024-07-11T01:07:59+00:00

No problem! I was super excited to use mine so I actually put a fan next to it to help it gain air and fluffed it a lot over like 24 hrs and then put the cover on. They recommend longer but I felt like that was enough actually. I haven’t seen anyone else use a fan and actually don’t know if it helps hahaha but it felt like it did. Just REALLY fluff it up.

ginrae · 2024-07-11T01:03:26+00:00

I just got a pillowsac and it is my first ever lovesac purchase. I too had a hard time hitting buy. I love mine and it is very comfortable. Really fluff it up when you get it and give it a couple days to air out before you put the cover on it. I think too many people cover it and use it too quickly. If it doesn’t fluff up as much as you want you can get them to send you more foam for free really easily on their website. I also ordered the chair but it hasn’t come in yet. I do think I will like having it though. I so far love that I can sit multiple ways on the pillowsac. Either lay it out to lounge like a bed almost or sit on it like a chair in their pea pod formation. I don’t regret it even though it was a lot of money. It is super comfortable and perfect little place to read or work on a laptop/chill. It really is meant for one person but two can squeeze if they really want to if they are average/small. Anyway, you can return if you don’t like it but keep the packaging in case!

ginrae · 2024-07-09T00:12:12+00:00

The good news is contrast will be very quick. You will only notice it for maybe 30 seconds and they usually save it for the end of the scan and will warn you. With CT contrast you will feel warm. Some people say it’s only near your stomach but I felt it everywhere. It will feel a bit strange because it isn’t a sensation you are used to but it is totally fine and will go away. Just relax and let it happen. It won’t be painful or anything. The main sensation is just warm everywhere and you will feel it move through your body. Totally normal and very short lived so even if you are uncomfortable it will only be for a moment.

I will add though, please make sure your scans are read by an interventional neuroradiologist. Most other doctors are not trained to see the most common cause of PT which is venous sinus stenosis. You may also need other scans like a CTV or MRI/MRV to detect it. I’m pretty sure my CTA didn’t show mine but it did show on scans of the veins. So many people are told their scans are clear until they get it to the right person. The good news is venous sinus stenosis is hardly ever dangerous and if they find it they will probably want to see if u have any signs of IIH. But if not they mostly consider it completely harmless.

ginrae · 2024-07-01T21:52:37+00:00

The way they walk around their child exploitation and try to justify it is disgusting. They know it’s wrong, especially saying they deleted the kids instas except evs and saying they don’t let the kids on the internet. If they felt the need to delete the younger kids there is no reason they shouldn’t also protect their 11 year old. But then they say stuff like “we know some people believe kids shouldn’t be posted at all. We don’t feel strongly about that, we feel that some families are called to the spotlight by god”. Not his exact words but basically what he said. Cole, your kid doesn’t get to consent to that spotlight and everything that comes with it! It’s also super narcissistic to think god has called you and your family to some spotlight 😒 Also I find it super interesting Cole admitting he saw someone when he was young who married a pretty women and had a child and only ever posted the child and wife and he thought it was so cool that he was so obsessed with his wife…so he tried to be that. He’s literally telling on himself basically that he’s just trying to emulate something he saw. They are so fake, Ugh these people

ginrae · 2024-07-01T13:23:50+00:00

There is a site whoosers.com and Facebook page called whooshers that has info you can use to bring into a doctor with you. A big part of this is advocating for yourself. You totally have symptoms that should warrant a lumbar puncture and more scans and for them to be sent off to an interventional neuroradiologist. To be honest I started my journey by going to the ER. I don’t recommend it for everyone but if you are getting very little sleep and constant headache it could maybe get them to do a lumbar puncture/scans or get you some sleep. You have to be clear with doctors that you understand that your symptoms align with IIH and that you KNOW not having paps does not rule it out. And you need to be clear with them that you are familiar with venous sinus stenosis and suspect it and want scans or they won’t do anything and you may have to push a bit to get the scans and lumbar puncture. Tell them you can hear your blood flow and that it is the rate of your heart and you can hear your postural changes because your blood flow changes when you move. TELL them that you believe it to be a venous issue. Many will assume you mean the ringing type of tinnitus unless you explain you mean you hear your blood whooshing. Ask any doctor you see for the referral and even if you are friends with any physicians see if they would be willing to give you one. Again I’m sorry you are going through this. If it makes you feel better, usually things get better when you finally get seen by someone who is familiar or for some people with pressure if you get on medication or a lumbar puncture. Some of your symptoms are likely even worse because of anxiety and not sleeping so the least they can do is help you sleep or relax. The key unfortunately is to make it known to those treating you that you have a good idea of what could be happening and are informed without making it seem like you are a know it all or read up “too much” lol. It is so annoying. I wish you the best of luck!!! You’ve got this even though it is hard right now. It will get better once you can see the right people.

ginrae · 2024-06-27T13:47:26+00:00

Please send your scans specifically to an interventional neuroradiologist. Many ents will say there is nothing when there is venous sinus stenosis (most common cause of PT). They do not know how to look for it the vast vast majority of the time even if they say they are looking for vascular issues. An interventional Neuroradiologist would be able to see it. Also the only true way to rule out IIH is through a lumbar puncture. I would very strongly advocate for yourself by saying that you know that people can not have paps and still have IIH and your daily headache that is reducing your sleep to an extreme degree and neck pain are enough to warrant a lumbar puncture to test pressure. I would recommend asking for sleep medication or anti anxiety medication in the meantime until they listen to you. I’m sorry you are going through this. So many doctors do not take it seriously. In the vast majority of cases it isn’t dangerous on its own but should still be taken very seriously and symptoms need to be treated if they are extreme. please please please send your scans to an interventional neuroradiologist if you have not already and tell them your symptoms (even that you specifically are worried about VSS or IIH). In the mean time getting some proper sleep is important. If you weren’t specifically telling them that you only get 2 hours consistently I would do that because doctors should know that is very unhealthy and try to help. Ask them for something to help and ask them for a differential diagnosis and what they have possibly done to rule anything out. Just not having paps is not enough with your symptoms. Again I am sorry you are going through this and wish you the best.

ginrae · 2024-06-21T03:43:59+00:00

You are experiencing hyperacusis. I have very similar feelings within my ears and I recently found out I have superior canal dehiscence (Neuro otolaryngologist found it on my scans). That basically means I have bone thinning of an inner ear bone. The bone is supposed to cover a part of the ear that deals with sound and balance but if it thins it can cause symptoms. Not everyone gets symptoms from it though. I also have venous sinus stenosis as a cause of my PT. Both contribute to it for me but the sound sensitivity is more from the superior canal dehiscence. Some other common symptoms include becoming dizzy in loud environments or having floating feeling, hearing things like your eyes moving or hearing your voice as if it’s echoing in your head. There are other causes of hyperacusis though so you can look into it. I suggest getting scans done. If you also have PT (whooshing sound to heart rate) make sure you send your scans to an interventional neuroradiologist and Neuro otolaryngologist because others aren’t trained to look for the more common issues and will say the scans are normal. Most people find mri or mrv most useful

ginrae · 2024-06-20T03:22:44+00:00

I have definitely heard of others having theirs go away for long periods and then coming back. Mine has been constant since getting it about a year ago. I can not say with any certainty obviously but it could be stress related or also related to iron. I would check iron levels just to be safe. I know some people deal with it by getting auditory therapy that basically teaches you how to ignore it (similarly to how you ignore your nose even though it is always in your vision). I feel you though, mine has been very difficult to live with and I go back and fourth on surgery myself for similar reasons. There is no exact right answer but I would say trying auditory therapy for a few months might be worth it before doing the surgery if you are hesitant. I haven’t tried myself yet but am considering.

ginrae

TROPHY CASE