Possible jugular compression, CSF leak, intercranial hypertension. Advice?

[jrodefeld]

Hello everyone,

I’ve posted before, but not in a few years. I have a very long history of chronic pain in my head and neck. I had Eagle Syndrome surgery a number of years ago (bilateral styloidectomy) and it didn’t help that much. I highly suspected vascular involvement at the time, but the doctors didn’t pay attention to these possible complications.

I recently saw this video on YouTube and it really put a lot of things together for me:

Webinar on venous congestion, brain and neck disorders

Basically, I am convinced that I have jugular vein stenosis, leading to intracranial hypertension and a possible CSF leak.

I’ve also learned much more about the role of the upper cervical vertebrae, especially the transverse processes of C1, in causing compression. I think C1 is probably my primary mechanism of compression, rather than the styloids. This would explain why I didn’t improve more after my styloid surgery.

I’m going to try to get an appointment with Dr Hepworth in Colorado, who I understand is one of the best specialists on the vascular type of Eagle Syndrome. Two questions:

1. Is he booked out a long way? How long does it typically take to get an evaluation and all relevant testing to diagnose the problem?
2. And then, how long does it typically take to actually schedule surgery (if necessary)?

Does anyone know what his typical procedure is for evaluating venous congestion, intracranial hypertension, CSF-leak and other complications of Eagle Syndrome and C1 impingement?

I have an appointment with a neurologist this week, but I don’t know if they’ll have relevant experience or be much help in getting closer to a diagnosis.

I do have some other ideas:

1. I know the potential role of prolotherapy in the treatment of Eagle Syndrome has been discussed on these forums. In my mind, it seems to have less of a role in treating the stylohyoid ligament itself, especially if there is vascular compression.

However, my current hypothesis is that the primary mechanism of compression is a forward shifted C1 vertebrae (and possibly C2 as well) due to craniocervical instability. I do have some chronic back issues and I feel that spinal alignment played a role in the development of this disease, as well as a role in treating it.

If I’m correct, then it would seem that prolotherapy, PRP, even stem cells could be very helpful in strengthening the ligaments around C1, C2 and the rest of my cervical vertebrae, pulling them back into alignment and creating more space for the jugular vein to drain the head. Any thoughts?

2. I also have an appointment with a local chiropractor who does nonsurgical spinal decompression using a machine called the DRX9000:

DRX9000 Lumbar Decompression – True Spinal Decompression™

I had MRIs of my entire spine and there are some areas with disc problems, in both my lumbar spine and my cervical spine.

I feel like decompression of these discs may improve my overall spinal health, improve the normal curvature of both my lumbar and cervical region, and help my C1 and C2 vertebrae move back into normal position, improving venous drainage from my head.

I do think these two therapies could be very supportive of my recovery, but the main concern right now is having a full assessment of my jugular veins, and intercranial hypertension.

The reasons I now suspect a CSF leak are:

1. Clear fluid coming out of my nose with no other cause. I’ve ruled out infections or allergies.
2. Post-nasal drip
3. Metallic taste in my mouth
4. Severe headaches, though these could have other causes

Is it correct to say that it would not make sense to repair a CSF leak if it is caused by venous congestion from jugular vein narrowing? Meaning, I should have the venous congestion fixed, and then repair the CSF leak if necessary?

My last question, is it helpful for patients with venous congestion due to Eagle Syndrome to be prescribed blood thinners? I think I recall hearing that Dr Hepworth prescribes them. I’m absolutely desperate for relief and I’m willing to try anything at this point.

I know that’s a lot of questions. I really appreciate this forum and everyone’s support.

It seems to me that the venous implications of this condition are beginning to be more widely understood, which means I may finally get the help I need. I can’t tell you how many doctors I’ve seen for this condition in the past who had absolutely no understanding of the venous drainage implications of this disease. They did no workup or imaging for the veins at all.

Thanks again.

[vdm]

If I could say just one thing… Do enormous amount of research about any chiropractic treatment including this machine. Not only based on the information that is publicly available, but talk with people on Facebook groups for cranial instability too.
A lot of those who have cranial instability (and it can be so debilitating, that some people apply for medically assisted death if they can’t get upper spine fusion) reported that their symptoms became infinitely worse after various chiropractic manipulations, to the level they couldn’t function anymore.

[mekanX]

I would second what @vdm has said
The decompression machine sounds promising and I had looked into that treatment as well.
The info provided all makes logical sense to me. The chiro decided not to treat after we spoke about about all my areas and issues.

I have tried cervical traction at a spine care center with negative results. Their machine was different looking but similar.About a twenty minute session where it slowly pulls then release slowly, harness attached to my neck. It made my symptoms worse after treatment. About three sessions in total before we stopped treatments. We did not know about the IJV compression at that time or had yet to be diagnosed with IIH or VES.
Just my personal experience
I also have rotated/tilted c1, and left lIJV compression with left hypo-plastic transverse sinuous as well.

Surgery scheduled for 6 months out from appt, now on the 13 for left styloidectamy and calcified ligament removal
Aside from all the head ache and ear and eye pain , the super symptom that brought me to dr Hui was “pulsitlle tinnitus “ whoosing in my head / ears.
Then the work up was Mra/v study that was negative, a lumbar puncture test , eye exam, ear exam,then a Ctv/a and then finally catheter angiogram/ venogram
That confirmed the area of compression and IIH.

Did you have any follow up with the doctors that performed the bilateral styloidectomy , any imaging before and after surgery?
Was the your surgery for classic eagles, or Ves?

Diamox was given to me first ,and it help the head pressure, eye and ear pain, for a short duration,
We then switched to plavix which has helped a lot , but has not fixed the compression.
My first coupl of weeks of Plavix “blood thinner” was like unclogging a drain, a major decrease in pressure head ache events, and an improvement in planning and thinking across the board.
I think diagnostically it confirms if we can increase drainage flow , the symptoms should be reduced, to hopefully non existent

But we will have to see what happens at the 3 month follow up.( with catheter venogram)
Or CTV whichever the Dr suggest

I do wish you all the best in your journey
keep up the research
I hope you can find some answers and relief soon

[jrodefeld]

Thanks for the feedback.

I think my problems are probably not due to true craniocervical instability, but probably more misalignment of the spine, causing a shifting forward of C1 and C2. Is it hard to diagnose craniocervical instability?

My plan actually was not to use this machine on my cervical spine. I had planned to try it on my lumbar spine, and do prolotherapy and PRP to the cervical vertebrae. My theory is that the lumbar spine my be indirectly affecting the position of my cervical vertebrae. I have low back pain and radiating pain in my legs as well, so if it does end up helping with my head and neck pain, that would be a bonus.

I will specifically ask my neurologist on Wednesday if they think I may have craniocervical instability.

Thanks for your recommendations for being cautious.

[jrodefeld]

Replying to mekanX:

What testing is usually required to diagnose jugular compression / venous congestion?

Are you saying that an MR Venogram wouldn’t necessarily show anything?

Did the lumbar puncture test reveal intracranial hypertension?

The tests performed before and after surgery were CT scans and CTA scans. My surgery was performed for classic eagle syndrome with no specific acknowledgement of potential venous compression issues. I’ve had imaging after surgery, again CTA testing mainly. The doctors I’ve talked to just concluded that the styloids were now short “enough” (around 2 cms on each side) and didn’t look like they were compressing the carotid arteries, but no mention of the jugular veins or venous congestion. And no mention of the possibility of C1 vertebrae causing compression.

I did have a brain MRI recently that revealed “trivial white matter disease” in my frontal lobes. The doctors kinda dismissed this finding, but I don’t think they should have.

I have heard that chronic jugular vein compression and/or intracranial hypertension could cause changes in brain circulation that could cause these findings.

However, the MRI was otherwise “normal” (or that is what I was told).

I did ask someone at the emergency room to do a CT venogram of my brain. I was told this test was normal (or more specifically, didn’t show evidence of a clot in my brain). However, this test didn’t look at the jugular veins or the neck at all. The test was confined to my brain.

Would it be possible to have venous congestion, intracranial hypertension, jugular vein compression or a CSF leak and have these tests not reveal evidence of it?

[Isaiah_40_31]

Hi @jrodefeld - I remember your posts from the past & the fact you didn’t have a great surgical outcome for which I’m really sorry. I think you’ve hit the nail on the head regarding having surgery for classic ES when in truth you had/have VES.

The testing to look for “vascular outflow obstruction” (VOO) whether for the IJVs or ICAs is what @mekanX noted - an MRA/V &/or a CTA/V, & potentially a veno/angiogram which looks at the blood pressure gradient both above & below the compressed area in the vessel; HOWEVER, you need these tests done dynamically i.e. w/ your head in various positions - looking left/right, up/down, on the diagonals. Vascular compression doesn’t always show up when the head is in neutral (looking at the ceiling), but w/ the head turned it can become very obvious. The scenario we most commonly see on this forum is the IJV being compressed between the transverse process of C-1 & the styloid process. We have members who have IJV compression (aka VOO) even w/o elongated styloids, & in a few cases such as yours, after a styloidectomy. A short but angled, very curved, or very thick styloid can still participate as a compression agent for the IJV. Often these tests are ordered by an interventional radiologist but your neurologist should be able to order them as well. It’s possible to have all these tests w/o confirmation of VOO. That’s happened to quite a number of our members so they have gotten additional opinions, including from our forum members, regarding what their scans show & have ultimately been diagnosed.

Seeing Dr. Hepworth once you’ve had your scans done would be very worthwhile. Unfortunately, Dr. Hepworth is not currently accepting new patients until next year. That said, it’s worth your time to call his office & ask to be put on his waiting list. If no one answers when you call, please try calling back instead of leaving a message as the office staff is overly busy & notorious for not returning calls.

We’ve had a number of members who tried prolotherapy prior to being diagnosed w/ ES, & almost universally each one felt they received no benefit & spent a lot of hard earned money needlessly. It’s a therapy that sounds good in theory but doesn’t seem to be truly effective.

Some years ago I had DRX therapy for my lumbar spine. It was helpful for me but did leave my spine feeling quite unstable for about 24 hrs after each session. Besides that, it was a temporary fix. I have seen many chiropractors over the last 30 yrs & have received many different types of therapies from them. I almost always feel better after an adjustment, but I’ve learned that for me, chiropractic care is just a band-aid. My spine shifts back to it’s former out-of-wack position in not too many days after getting fixed & back in I go again.

@vdm has posted some great information about “military neck” along w/ exercises to help correct that. Military neck is highly suspect as being a prime contributor to VOO. It’s the condition where one loses the lordotic curve in the cervical spine i.e. the cervical spine straightens out losing its natural curve. Military neck is the result of looking down, for example, at a computer or cell phone screen or book for many hrs/day. Another part of the military neck scenario are Upper Crossed Syndrome & Lower Crossed Syndrome. These describe the way the upper back muscles get stretched long & become weak from being rolled forward (due typing on a computer key board, poor posture, etc) while the upper chest muscles sink in & become tight. The low back muscles spend too much time in flexion while the abdominal muscles are shortened & become tight. This entire package pulls the spine out of alignment as muscles compensate to do jobs they weren’t meant to do & pain throughout the body is the result.

A lumbar puncture can help identify IH and CSF leaks do occur as the result of IH. The symptoms you mentioned definitely could point to a CSF leak - clear fluid from your nose & metallic taste in your mouth. You are also correct that a CSF leak shouldn’t be fixed prior to the cause of the IH being resolved because the patch for the leak will fail if IH is still present.

Many of our members who’ve been diagnosed w/ VOO have found that taking a blood thinner such as Plavix has been very helpful in reducing symptoms while waiting for surgery. @mekanX mentioned this in his response to you. Another thing that may be helpful is sleeping w/ your head elevated at night. Some of our members have said that made a big difference as well.

[juliezuber]

I am a Hepworth patient and have surgery Oct 9.
Their office is the one with the true answers, these is just my 2 cents and an attempt at answering some of your questions…
The 2 most recent tests he ordered were (sorry for the caps, just cut paste from the reports):

1. BILATERAL INTERNAL JUGULAR VENOUS DUPLEX ULTRASOUND
2. COMPUTED TOMOGRAPHY OF THE HEAD WITHOUT CONTRAST, COMPUTED TOMOGRAPHY
   ANGIOGRAPHY OF THE HEAD AND NECK WITH INTRAVENOUS CONTRAST
   He is picky about the jugular venous ultrasound. He has his preferred place to get it.
   From my jugular ultrasound, he was able to see that the blood flow in the veins on both sides of my neck were pooling, then constricted, then trickled out. He said the styloid process was causing the constriction.
   He has a vascular surgeon present for ES surgeries.
   The vascular surgeon comes from The Vascular Institute of the Rockies (VIR). I asked their front desk which surgeon from there assists Dr. Hepworth for ES and they didn’t think there was one specific one. Dr. Annest there seems to be renown, it would be great if he were there but at this point I don’t know.
   He likes Brilinta for the blood thinner and doesn’t want the aspirin with it (at least when doing the first month trial period). He thinks it is a good tell, if it helps then it is more likely ES. I am a mess when off Brilinta (crazy head pain, pounding, more tinnitus, ear and Eustachian tube issues,…). It doesn’t get rid of all the symptoms but seems to tamp them down enough so I can function.
   If you see another dr while you wait for Hepworth, it might speed things up if you can get a trial of Brilinta (60 mg, 2 x day, for 1 month, no aspirin) done and be able to report if it helped you or not. It didn’t help me until day 17. It seemed to take awhile to kick in.
   I hate that it has been so drawn out, get this test, come back in a month, try this drug, come back in a month,…
   Hepworth diagnosed me with Cranial Instability (from previous test) and sent me to a physical therapist he likes, Dr.Creager in Berthoud Colo. She thought I had a CFS. Hepworth didn’t agree but mentioned getting the cranial pressure down (ES surgery) would help if there was a CFS.
   I hear you, trying to figure out root cause, chicken or the egg is tough, there is not enough known at this time. There was a separate thread about ES causing neck issues (not the other way around). Who knows, but a lot of us seem to have both.
   Tooth issues is another area… Most consider infection from teeth as a root cause for things but I think there is a component that goes the other way too (head pressure causes grinding, causing teeth issues). I have a good mouth guard, to try to not have the sinus/head pressure create more issues.
   I am trying to get Hepworth to use me as a guinea pig and do both sides for the surgery. So, far it doesn’t look like he will. He has always done one side at a time. He said you wouldn’t be able to eat with all the swelling from doing both at once. I later thought I would gladly do smoothies for weeks just to get it over with. Maybe it can be more severe than that though (can’t breath or swallow??) I don’t know. Others here have had drs do both sides and come out ok though.
   Chiro is tricky. I am doing some of it. I think chiro help is probably limited due to ES (and its inflammation) needing to be fixed first.
   Hope some of this helps.
   Again, I’m just a patient too, trying to figure things out. I’m no expert.
   Best wishes as we all do our best to navigate this craziness.

[jrodefeld]

Thanks for the replies, so much helpful information.

I’ll try to get my neurologist to order some of the appropriate testing while I wait to hopefully get in to see Dr Hepworth.

Regarding the testing, if testing needs to be done in provocative maneuvers to see the compression, wouldn’t you need to opt for CT scans over MRIs, since MRI takes too long to remain in uncomfortable positions?

Also, can you explain the appropriateness of the MR/CT Angiography vs MR/CT Venography? Wouldn’t venography be more appropriate since we’re looking for jugular vein compression?

Does Dr Hepworth do a lumbar puncture to measure intracranial pressure and check for CSF leaks?

If there is a CSF leak, is the protocol usually to leave it alone until the venous outflow is restored? Then does the body usually heal the CSF leak, or is a second procedure needed to repair it?

Should I also ask for testing to see if I have papilledema (swelling of the optic disc) which is a good indicator of increased intracranial pressure? As I understand it, this is a pretty common test that neurologists perform.

As far as the chiropractic and/or prolotherapy, I agree that there may be limited benefit if the primary cause of symptoms is venous outflow obstruction.

However, it does seem logical that if “military neck” (loss of lordotic curve) and craniocervical instability is one of the contributors to this problem, then complimentary therapies to strengthen these structures should be beneficial.

My primary doctor is in clinic that offers a lot of alternative treatments. They run on a monthly membership business model, and members get a lot of benefits. One of the doctors there does prolotherapy injections, platelet rich plasma and ozone. As a member, I get it at a very discounted rate.

I think I’ll give it a shot. I’m still intending to see Dr Hepworth as soon as possible for definitive treatment, but if injections help in any way, I’ll consider that a win.

Regarding the chiropractic and spinal decompression, I have a consultation with the guy to see if it might be helpful. I know there are some chiropractors that specialize in adjustment of the C1 vertebrae and restore the lordotic curve. We’ll see how it goes. It’s probably necessary to complement chiropractic adjustment or spinal decompression with physical therapy or exercising to help your body hold the adjustment.

[Isaiah_40_31]

You’re right about the dynamic testing needing to be done during a CTA/V as I don’t think it can be done during an MRI/V/A thus I misspoke - Sorry about that.

Angiogram is the term used to describe all vascular studies, but venogram can be used to clarify that the scan is particularly focusing on the veins. I had a CTA & MRV to check out the vasculature in my neck. Both the IJVs & the ICAs were visible in the both scans. I think there are strengths & weaknesses w/ each type of scan so getting both types gives a more complete picture of what’s going on.

Dr. Hepworth will fix an existent CSF leak during vein decompression surgery which saves both the patient & doctor from facing a second surgery. I’m not sure if he does a lumbar puncture if the signs of a leak are obvious.

It’s a good idea to get your eyes checked for papilledema especially if you’re having eye symptoms - pain, pressure, visual changes, or visual snow.

If you do go ahead w/ the chiropractic & prolotherapy options plus PT, please let us know how you fare. There’s nothing wrong w/ testing out your options. The only thing I suggest is if your symptoms worsen in any way from one or more of the therapies, stop doing it/them immediately. Trying to recover lost ground re: ES symptoms can be time consuming & disheartening.

[mekanX]

Well for me the neurologist I was working with had ordered the MRA /MRV first, to eliminate potential causes of the symptoms and was not looking specifically for IJV compression.
I am sure it (the MR study) is a good test but did not show the IJV compression in my scan.
Although at first I was frustrated they did not find anything with the scan,I was told to be happy I did not have MS and some other potential problems.
The veins,(MRV)and the arteries (MRA) scans came back relatively unremarkable other that showing dominant side and some anatomical variant of the arteries.

At that point I was off to see Dr Hui who had suspicions of venous congestion, and ordered the LP ( came back low at 3 units)
My eye exam showed some kind of small signs of some thing I don’t remember , but no acute papilledema,
This testing ( both eye and LP)was about two-three weeks after my intervention of Diamox. And this is believed to have brought my pressure down. And may not have shown the acute phase of pressure that I was experiencing
I was also told I may have a CSF leak as well
I did have some ear discharge previously or a wet ear all the time.

Then , the catheter venogram showed left transverse sinus flow reversal and a high grade stenosis at the c1 styloid area
And then,CT
the CTA came back as no significant stenosis in arteries
CTV reveled diffuse narrowing in IJV in area of the C1 and digastric muscle and calcified ligament
This was my second Ctv (one before and one after venogram )and this finding was said to be patent ( or normal)on previous scan and now called a “pseudo occlusion “

@Isaiah_40_31 has pointed out that the dynamic scan is more telling.
in cases where a static image shows nothing remarkable especially , As in my case this helped to identify two areas of compression that had been normal, or not reported untill we did head turning.

I have not yet been able to verify any previous scan to see if anything was missed by the radiologist on any of the previous scans, at this point it has all been kind of over loading to double check scans, or have someone who is a third party that can give second reading of the scan.

There does seam to be a lot of people that have findings that were not reported on the scans,

So far working with Dr Hui has shown quite a bit of areas of concern,I am trusting my care to DR Hui and what he has been able to show on imaging seams correct with research
And now Dr Hepworth to skillfully make the space needed.
Again this has just been my personal experience and all a bit to take in while having brain fog and all the other things that have come along with this.
Stay focused and have faith the answers will come

[jrodefeld]

During the workup for my symptoms I had a cerebral angiogram done several years ago. There was no suspicion at the time of jugular compression or venous outflow obstruction. The test was ordered because an MRI I had done seemed to indicate a possible arterial blood clot in my external carotid. This turned out to be not the case and the test was essentially negative.

However, the radiologist did note the following in his report:

“The transverse sinus and the sigmoid sinus on the right are slightly smaller compared to the left side; however, there is no thrombosis.”

And in the conclusion:

“The right transverse sinus and sigmoid sinus are smaller; however, this is an anatomical variant.”

I wonder if this could be evidence of stenosis that could support the theory of venous outflow obstruction? The radiologist did say there wasn’t evidence of venous drainage issues, but the test was performed under anesthesia, and without provocative maneuvers. He didn’t look at the jugulars at all.

On a side note, I had a consultation with Dr Annest at the Vascular Institute of the Rockies a little over a year ago and if Dr Hepworth works with them on his surgeries, that just tells me I’ll be in extremely good hands. I have a history of thoracic outlet syndrome as well.

[PatientD]

Hi, just responding to question about cervical instability in this topic. Self tests are to stand in front of full length mirror - is one shoulder higher than the other, does your head tilt slightly to one side or the other, put hands on hips - is one hip higher than other. Final test with friend or family member help- wear flat shoes with no heal - lie flat- have companion put your heels together - is one leg at heal slightly shorter than the other? These are all indications that CCI May be a factor for you (if above is present). It may have other causes but most CCI patients have these types of issues. I believe it’s because our brain keeps our eyes level with horizon & will distort the body to achieve this if your head has tilted with CCI. Take care. D

[jrodefeld]

I had some prolotherapy and ozone injections to the neck today. Not sure how much it’s going to help but if I truly do have craniocervical instability, it makes sense that it should be beneficial to some extent.

I got ahold of Dr Hepworth’s office yesterday. They said he’s not accepting new patients at the moment, and I should call back around mid-October, and then he’s actually scheduling appointments into January at this point.

It would be nice to actually get the relevant testing to assess the situation and see how bad things are in the near-term.

If Dr Hepworth is the guy to see to actually get the definitive treatment for this condition, then I’m all in and I’ll keep pursuing it until I’m able to fully recover.

I’m seeing a new neurologist tomorrow and I’ll see if he could order some testing to see what’s going on.

I’m thinking of asking for:

CT Venogram of my jugular veins at neutral, and with provocative maneuvers (head turned left, right).
Lumbar puncture to diagnose intercranial hypertension, or CSF leaks
Funduscopy/eye exam to assess for papilledema
Digital Motion X-Ray to diagnose craniocervical instability

I don’t know about the last one. I’m not sure most neurologists typically order DMX tests.

I may even ask for a prescription for Brilinta to see whether it helps my symptoms.

Hope things go well. I’ll try to keep this thread updated with my progress.

[Jules]

Not a bad idea to get some testing done, but (and maybe others would disagree with me) I would be wary of having a lumbar puncture unless absolutely necessary as there are risks with that procedure and it’s not to be undertaken lightly…
Let us know how you get on with your neuro!

[Isaiah_40_31]

It looks like you’ve done your homework, @jrodefeld. I agree w/ @Jules on the lumbar puncture as it puts a hole in your spinal column which surrounds your spinal cord. Any opening into that area can be very vulnerable to infection. Get the dynamic CTV first & see what it shows then you can consider the lumbar puncture. The other tests you listed are fine & should be helpful.

Go for the Brillinta! Someone recently posted she took it for 2 weeks before it started helping so be patient w/ it if you do get an Rx.

I’m very interested to know if the prolotherapy & ozone give you any relief. Please keep us posted about that as well.

[jrodefeld]

Saw the neurologist today. He looked in my eyes and said he didn’t see any evidence of papilledema. I know this doesn’t necessarily mean you don’t have intracranial hypertension.

He did order an MR Myelogram to check for CSF leaks.

I didn’t push further for other testing since it’s my first appointment with him and he’s still getting to know me and my history.

Is it common for patients who have VES to have CSF leaks?

If it’s determined that the leaks happened due to increased venous congestion, do the leaks still need to be patched or do they just treat the venous compression and the leaks heal on their own?

My situation currently:

Had bilateral styloidectomy a number of years ago without much relief. Styloid are currently about 2cm each (Used to be 4.7 and 3.6).
Jugular vein compression was not considered prior to surgery
C1 vertebrae was not touched, nor assessed to see if it was causing compression.

I’m hoping the Prolotherapy, Ozone, and perhaps PRP treatments can make a C1 shave not necessary.

Are there patients such as me who respond to a procedure such as balloon angioplasty, or stenting and don’t necessarily need additional decompression surgery?

I’m also highly suspicious that the scar tissue from my previous surgeries could be compressing the veins and reducing venous outflow. I’ve heard of cases where veins could be injured during surgery as well.

I’m kind of wondering how much sense it makes to try to do a full workup for this condition with doctors who really aren’t familiar with it. Maybe my best bet is to get in with Dr Hepworth as soon as possible and then let him do the testing he wants. I know it’s going to be a while.

[Mod_support]

I MUST agree with both @Isaiah_40_31 and @Jules, If you can avoid the lumbar puncture, I’d recommend it. There are some less intrusive methods looking for CSF leaks and ICP. I’ve had many issues in regard to intercranial hyper (and hypo) tension. I’ve had 1 LP, never again.

The last time I had a physical ICP test they drilled a hole in my forehead, placing a pressure gauge inside my skull. It was to be there for 24hrs, but within 6hrs I was symptomatic, within 8hrs I was violently ill and within 9hrs I was back in surgery. Seems there definitely was an issue.

Merl from the Modsupport Team

[Jules]

Hopefully others who’ve had CSF leaks can help you with this question, I think it varies from what I’ve read on here…I had IH symptoms from IJV compression but never had any leaks, so I was lucky. I would avoid stenting if possible too, as that can fail if there’s still compression, I was warned off that by my surgeon. Dr H seems to be very thorough and would remove scar tissue if that’s an issue during surgery, and he has a vascular surgeon who would do balloon angioplasty if needed, but not C1 shave if that was needed, but I expect you’ve read all that.

[jrodefeld]

Given how booked Dr Hepworth is, are there any other options for getting someone else to at least diagnose me?

I worry that conventional neurologists and ENTs just don’t have the experience to correctly diagnose this condition.

I am trying to get a video consultation with Dr Hui and maybe he can advise me.

Ideally either he, or another on the very short list of doctors with VES experience, could order the appropriate testing and workup at a local radiologist and review it remotely, without me having to travel across the country for an in person appointment.

Then presumably Dr Hepworth could triage me based on the severity of my situation.

Honestly it feels like my jugular vein on my right is completely closed off. It actually feels like there may be a clot.

I pushed hard recently for a CT Venogram of my brain at the ER a few weeks ago. It came back negative, which is good to know that I don’t have a clot in my brain. But the scan didn’t show my neck or jugular veins at all (I looked at them myself).

Maybe I’ll try and get my primary doctor to order a CT Venogram or MR Venogram of the jugular veins.

As far as medication, I mentioned I would push for a prescription for Brilinta. Is that the only medication worth trying? Has anyone tried something like Eliquis?

[Violin]

I only skimmed this thread which has tons of info.

There are various blood thinners, and some might not work for you due to genetic reasons. My Boston Heart blood testing (free for Medicare) showed that statins would not help me, but due to a different gene (found on 23andMe) hypercoagulation, Pradaxa and Eliquis and others help.

Hypercoagulation plus underlying infection for example Borrelia (Lyme family) are conditions Dr H. often sees, he told me.

I think it takes maybe a couple of months for a good try to see if it helps.