Learning about options

[RickAZ]

Hi all, I’ve been reading quite a bit on this forum. After a very long time of sporadic diagnoses (HBP, migraines, sleep apnea, etc) but nothing to connect them together, I’ve recently gotten an IJVCs diagnosis that may (or may not) be an underlying root cause of lots of symptoms. I thought I’d share my experience to see if it can help others either to get evaluated, get a diagnosis, or figure out care. I also have a few questions for the post-surgical among us that I’ll add to the end, if any of you can help with those I’d appreciate it.

My experience:

I’ve had some symptoms since very young which may or may not be related to my IJVC, I guess I’ll find out post-surgery which were truly a part of it and which were not. Here’s a symptom summary:

Diagnosis:

I’d been just seeing my PCP for many years and he’s treated me for a variety of ailments that I was too young for, too thin for, to healthy for (such as sleep apnea, HBP, etc.) plus have had ongoing issues with headaches and insomnia for my entire life. When I had neurological issues he’d send me for a brain MRI or CT and it would come back normal we assumed it was all migrane-related and we moved on.

That’s until I got persistent pulsatile tinnitus in October of ’24. Dr. Google sent me to an ENT, who ordered a bunch of new imaging (I hadn’t had any in about 4 years) and this time we discovered a brain aneurysm. The combination of brain aneurysm diagnosis and persistent pulsatile tinnitus lead me to find (via Google) a Doctor that this forum is familiar with, Dr. Nikhil Mehta. Not only does he work with Dr. Takaji on Eagle Syndrome, but in his practice he treats various types of stenoses and aneurysms and a variety of other things. He diagnosed my transverse sinus stenosis and recommended endovascular coiling of my aneurysm, procedures that I had in Feb of ’25. BTW, Dr. Mehta is great, you should not hesitate to seek out his council in any way. And his team is terrific as well.

Anyway, I had a 6 month re-call to Dr. Mehta’s office after the aneurysm and stenosis treatment after which I was to have an angiogram to evaluate the aneurysm treatment, and post stenosis treatment we expected that my pulsatile tinnitus symptoms would alleviate.

At my 6-month recall, my angiogram showed great results on my aneurysm (so I’m good there!) but my pulsatile tinnitus (and other symptoms) persisted, leading Dr Mehta to recommend an evaluation for IJVC. The CT scan he ordered confirmed the diagnosis and he recommended Dr. Takaji while following Dr. Takaji’s normal protocol of a dynamic venogram followed by a referral to Dr. Takaji.

I’m meeting with Dr. Takaji tomorrow to learn about my surgical options. So far his staff has been terrific to deal with on the phone.

Note: I also met via Zoom with Dr. Osborne in L.A. and he was fantastic to talk to. He reviewed my case carefully and was very helpful, but didn’t think I was a good candidate for the type of surgery he performs, so he recommended I seek out other doctors that have a different approach (more detail on that below).

My images:

My images are a bit different than most that I see in this forum. It seems my styloids are of relatively normal size and my styloid ligaments do have some calcification but not much. This is why Dr. Osborne didn’t think he’d be the best surgeon for me. My IJVC seems more related to my C1, although I do have some calcification in my styloid ligament at just the spot where it can cause the most compression (see the first, B&W image below where a small amount of calcification can be seen in the 2 circled spots of my styloid ligament, one of which is clearly involved in my IJVC (this is my right side, the left looks very similar):

When you look in 3D mode, you can barely see the styloid ligaments at all. On the left side you can see the extreme compression of the IJV as you follow the vein above the “IJV” lettering, but there’s not much evidence of styloid issues. If you move the 3D imaging around, you can barely see a tiny bit of styloid calcification in just the right spot (on both sides). The right side isn’t quite as bad, but you can see the clear flattening of the IJV as you go up to the C1.

Because my styloids don’t seem to be the primary problem, I’m wondering if I was born with this. I don’t suppose there will ever be an answer to that question but I have had life-long symptoms that can be explained by IJVC, so maybe! I don’t know what’s likely.

The questions I have for the post-surgical:

Does anyone regret having the surgery? Or is it a must do? Did anyone get worse after surgery? Did anyone stay the same? How quickly were you back to work? (assume an office job, no heavy lifting). How quickly were you able to get back to excercising regularly? Does the pulsitile tinnitus go away or should I plan to live with that? What about brain fog issues?

[Isaiah_40_31]

Though I can’t answer any of your questions, I did add an annotation to your last image. It looks to me like your ICA may be compressing your left IJV lower down as well as the higher compression by C1/styloid. Perhaps it’s just the perspective of the vein/artery in the image though:

[Jules]

Great that you’ve been seeing Dr Mehta & DR Takaji, and have got some answers!
The C1 shaves are fairly new in terms of treatment, some members have done really well, others have found that they still have symptoms and need angioplasty and sometimes stents. Obviously these can’t be done where there’s still bony compression as they won’t work, just letting you know to be prepared that the surgery might not be an immediate cure.
When you have a discussion about surgery, I would suggest you ask if there’s a plan to decompress the IJV from any other structures; as well as the C1 often there can be some muscular compression (for example the posterior belly of the digastric muscle , or the omahyoid muscle), or by other blood vessels or nerves, and fascia too.
It’s a very personal decision about whether to have surgery, depending on the quality of life you have vs the risk, if the styloids are causing compression for example, then the symptoms won’t improve until they’re removed. Some meds can help, blood thinners for example, but it’s not a cure…
Pulsatile tinnitus often does improve when the compression is released, but it can take a while, & not everyone has been cured of it. I just had bilateral IJV compression by the styloids, I was very lucky & my pulsatile tinnitus & IH symptoms went pretty quickly after my first surgery, but that’s more unusual. I’m not sure that my surgery recovery is so relevant as I didn’t have a C1 shave, but hopefully others who’ve had this can help, like @Chrickychricky … I couldn’t lift anything much for a good 4 weeks, driving was very uncomfortable for a few weeks to as my neck was too uncomfortable to turn. Walking was fine but not strenuous exercise…I think the recovery has got to be a bit tougher having a C1 shave too, and when both sides are quite compressed you may well find that symptoms don’t improve much until the other side is removed too…
Let us know how your appointment goes!

[RickAZ]

Yes, this additional lower compression was noted by one of the radiologists looking at my CT.

[Isaiah_40_31]

I’m glad the radiologist was paying attention. Often things like that get missed.

[Hamela]

Hi,

Welcome to the group.

I had surgery a few weeks ago, C1 shaving and styloidectomy. I am almost 60 years old. Many symptoms left very quickly but as I have other veins issues like high riding jugular bulb, benign intracranial pressure, superior sagittal sinus pressure etc…the pulsatile tinnitus may take a while before it goes away. When the IJV is compressed it can affect the whole circulation.

I forgot to add I also have severely engorged emissary veins at the skull base, those emissary veins drain in delayed, I still wonder what that means.

I am no doctor though.

Hope it helps.

Audrey

[Isaiah_40_31]

@Hamela - I’m glad to know that you’ve had some good symptoms reduction. Those remaining vascular symptoms will hopefully continue to heal & gradually fade over the next months. It can take quite some time for the body to re-regulate blood flow once it’s brought back to a more normal condition. I know patience is hard, but it sounds like you’re doing much better now than right after surgery. I’m very thankful for that.

[Hamela]

Hi @Isaiah_40_31,

Yes many symptoms left, I forget to be grateful for those.

I miss our interaction, you are so supportive!!

Tx

Audrey

[Jules]

Good that you do have reduced symptoms @Hamela , & definitely good to try and focus on these Praying that others improve

[RickAZ]

Thanks Jules. Quick status update, looks like things are on track for surgery on 2/16. I met with Dr. Nakaji for a pre-surgical checkup today. He emphasized that in all of his surgeries it’s a custom job where he evaluates the anatomy when he’s in there and does what needs to be done. It looks like my C1 is the primary problem so he expects to shave that, plus remove some of my styloid ligament, likely the carotid sheath and maybe some muscle or other soft tissue as he determines may be needed once inside. My symptoms have been fluctuating quite a bit, headache and pressure today making me look forward to the surgery. Weird to look forward to that sort of thing, but it is what it is…

[Isaiah_40_31]

@RickAZ - Good news that Dr. Nakaji will be doing your surgery relatively soon! I don’t think he removes the carotid sheath, but he does partially open it to give more room to the IJV so it can decompress & the vagus nerve which also is compromised by IJV compressions between styloid/C1. It’s not unusual for muscle/soft tissue to also need to be removed for the best outcome.

I’ve put your surgery date on my calendar so I can pray for you that day.

[Jules]

Not too far away now! I did keep a bit of a diary of symptoms before my surgery, it was helpful to remind myself how rough I felt at times & how much I needed the surgery, like you say looking forward to surgery, to hopefully improve & get back to a normal life! Will pray that it’s successful for you

[RickAZ]

Surgery complete! Dr Nakaji shaved my c1, loosened the carotid sheath, removed the styloid ligament and removed a muscle that runs from the styloid to the hyoid bone. I was still bleeding internally after they closed me up, so they opened me back up a second time to fix that so I’ve got some more swelling and inflammation than most but my pain levels are good (no opioids needed, just taking Tylenol). I have some paralysis of my lower right facial muscles (my lower lip mostly) which Dr Nakaji warned me about pre surgery and said to expect that to resolve over the first couple of weeks. He says the vein opened up nicely so the procedure seemed like a success. My symptoms seem different but they aren’t gone. Looking forward to see how everything progresses over the coming weeks. Thanks for the prayers and support, I’ll keep you posted on progress. Dr Nakaji thinks the next 6 weeks or so will tell us a lot.

[Jules]

Good that Dr Nakaji feels the surgery went well & your vein opened up… It sounds like it will be a bit longer recovery with all that was done & having to go back in again, take care & let us know how your healing goes! Cand you eat okay, sometimes that can be tricky anyway, & with the lip numbness as well?

[Isaiah_40_31]

@RickAZ - I’m so glad your surgery is done & went well, minus the “bleeding hiccup”. Good that you’re on your way to recovering now!

I have to disagree w/ Dr. Nakaji regarding the recovery time he suggested for your lower lip droop. Sometimes that problem does recovery quickly, but sometimes it takes a number of months to fully go away. Just don’t want you to be discouraged if it’s still there when you pass the 2 week post op mark. The good news is it almost always does recover even if it’s a bit slow to do so.

[RickAZ]

Thanks Jules. I can eat ok, have to shift everything to one side as my right is pretty useless, the right side of my jaw is pretty tight also so it’s hard to get my mouth open. But not much pain, that seems to be fading. Just need to keep on.

[RickAZ]

Thanks. Good to know if it takes a while.

[Isaiah_40_31]

I had the same problem, @RickAZ - i.e. only half my mouth was functional after my first surgery because half my tongue was paralyzed. Glad you can eat ok though! I had to run everything through a blender to be able to eat since my jaw joints were so stiff & tongue wasn’t working right.

[RickAZ]

My jaw has gotten tight also. I’m using my finger against my teeth to open up for a bite!

[Isaiah_40_31]

We recommend smoothies/soft foods you can kind of mush around in your mouth vs needing to chew for the first week or so while the jaw is so stiff. i.e. mashed potatoes (butter gives them more heft since they’re carbs & will digest more quickly), mac n cheese, soups w/o big chunks, fruit sauces (apple, pear, etc), ice cream/shakes, etc. If you opt for smoothies use fruit & veggies plus some good oil like olive, avocado or coconut, & protein powder so they hold you longer, or buy premade smoothies at the store.