I completely agree!
Good news!
I had my telehealth appointment with Dr Hui and it went as well as I could have hoped for. He immediately told me he thought my case was very straightforward and I had jugular vein compression, worse on my right side.
Here is the exact wording from the report they sent me:
"In your case, the head injury and whiplash may have either shifted the alignment in your neck, increasing the impingement of your jugular veins – or shear injury to your collateral network.
You’ve already had styloidectomy on both sides, but there is residual narrowing of the R>L. Your C1 tubercles are also participating in impingement.
I would recommend diagnostic venography and manometry to assess the venous pressures in neutral and in provocative positions to verify the surgical targets.
I would recommend diagnostic venography with a domain knowledgeable neurointerventionalist.
Following venography, I would recommend re-release of the R IJV, given the longer residual styloid process impinging against the C1 tubercle.
Regarding your CSF Leak symptoms, I would recommend addressing these after the venous congestion has been treated. Most likely, you have a sinonasal leak. If this avenue does not sufficiently address your CSF leak symptoms, evaluation of your spine would be in order."
So the order of treatment is:
- Decompress right jugular vein
- Fix nasal CSF leak
- Fix other spinal CSF leak(s) (if necessary)
He’s going to refer me to either Cameron McDougall in Seattle or Matthew Amans in San Francisco for the venogram.
Luckily I don’t live too far from either. I’m in Southern Oregon near Medford, about halfway between both of these doctors. It’s about a 6.5 hour drive either way so I’m just going to go with whoever can see me the soonest!
Dr Hui also offerred to do the venogram and he has time in early February but a flight to Hawaii is a bit costly and time consuming. That’s my third option.
He’s also going to put in a referral to Dr Hepworth. Luckily, he’s able to get patients in quicker since, as I was told, Hepworth IS accepting new patients referred by Dr Hui. Even so, it still may be a while to actually get the surgery.
But things are really moving in the right direction finally!
In the meantime, I’m going to go up to OHSU on Dec 23 to have a CT of my sinus and nasal area to hopefully visualize the leak.
Dr Hui didn’t mention doing a lumbar puncture to check intracranial pressure. I emailed them back to see if they thought that was worthwhile.
I asked him about the possibility of developing an infection like meningitis from a nasal CSF leak. He thought the likelihood was low when the leak was due to intracranial hypertension due to venous outflow obstruction. The way he explained it is that CSF is constantly being forced out due to the high intracranial pressure and for meningitis to take hold pathogens from my nasal area would have to enter the cranial space against the pressure.
However, the likelihood may be low but it isn’t zero. And as KoolDude mentioned, if the CSF panel results are accurate, it could indicate an infection like meningitis.
I also have low white blood cell count in recent blood work. My primary doctor referred me to hematology to follow up on that.
Sometimes long-term infections can cause depleted white blood cell count, including cases of meningitis. So I’m definitely going to follow up on this.
All in all, things are looking good that I’ll finally get all this fixed! I’ve got the right people on the case.
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Your news is excellent, @jrodefeld! I’m so glad you’ve had this giant leap forward made possible by Dr. Hui. Good choice in consulting with him. Please continue to keep us apprised of your test results once you get your venogram done. I’m also interested in how far out your appt. w/ Dr. Hepworth ends up being scheduled. I hope it’s sooner than later!
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So pleased that you have a plan for treatment! I hope the waiting isn’t too long 
It looks like I’ll be going up to see Dr McDougall in Seattle for the venogram. Has anyone heard of him?
I was told that Dr Hui discussed my case with him and apparently, he may even be willing and able to do the surgery for me as well.
He seems like a real top notch surgeon for what I read, but I don’t know how much experience he has with these types of surgeries.
A lot will depend on what he finds on the venogram. Maybe I’ll at least see how long the wait time is for Dr Hepworth.
As much as I want to get this thing fixed, I do want to make sure it gets fully fixed and this will (hopefully) be my last surgery. I also feel that Dr Hepworth will stick with you and make SURE everything is resolved, even if you have residual issues after surgery. Clinical experience matters a lot.
On the other hand, if my case is very straightforward I don’t know if I necessarily need to wait for months more to have surgery with Hepworth if Dr McDougall can do a fine job fixing the problem.
I should be hearing from him this week to schedule the venogram.
In the meantime, I’m going up to OHSU this upcoming Friday to visit with an ENT and skull base surgeon for some specialized CT scans of my sinus area and skull base. Hopefully they will be able to see exactly where the CSF leak is coming from.
Additionally, it looks like I’ll be getting a lumbar puncture soon as well. I’m sure they’ll measure the opening pressure, but I’m more concerned with whether I possibly have an infection affecting my central nervous system.
Anyway, things are definitely moving in the right direction! I’ll keep everyone posted on my progress.
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I did a quick search & don’t see Dr. McDougall’s name on our forum prior to you mentioning it. If Dr. Hui is recommending him then he must have a good reputation. Please let us know when your venogram is scheduled & ultimately how it goes & what you think of Dr. McD.
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Absolutely, I’ll let everyone know about my experience with Dr McDougall.
I do have a bit of an update. I’m currently in Portland visiting a few specialists at OHSU.
The first day I had a lumbar puncture. The procedure itself went surprisingly well, no ill effects whatsoever as far as I can tell.
Opening pressure was normal, and the testing for various infection has so far come back as normal as well. So no meningitis thankfully.
I think I may have a few tests that haven’t come back yet.
The second day I had an appointment with a sinus surgeon regarding the possible nasal CSF leak. I had a CT scan right before the appointment. This was a regular CT without contrast looking for obvious skull base defects or sites where a CSF leak is possible.
However, they didn’t find anything. The doctor used a scope to look in my nose to check for signs of CSF leak. That also wasn’t conclusive.
The doctor did not seem to think I had a CSF leak. My suspicion is that it just wasn’t detected on the CT scan that was done, since I know leaks of this sort can be difficult to detect. And I wasn’t particularly leaking heavily at the time.
I also feel that the doctor (like most doctors) really wasn’t aware of VES, so really didn’t understand my risk factors and why I would be concerned about this.
That leaves the question of what the Cerebrospinal Fluid Panel test results I had mentioned earlier meant.
I spoke to Dr Chambers (the ordering doctor) about the results. Essentially, the lab was supposed to run a Beta-2 Transferrin test along with a CSF Panel and some other tests, but there was a mix up and they didn’t do the Beta-2 Transferrin.
The sample provided to the lab was from fluid collected from nasal drainage.
It is my understanding that a Beta-2 Transferrin test is the appropriate test to see whether you have a CSF leak from nasal discharge, and a Cerebrospinal Fluid Panel is used to analyze known CSF from a lumbar puncture.
However, the ordering doctor (apparently in consultation with an ENT) interpreted the results of the Cerebrospinal Fluid Panel (run on nasal discharge) as being highly suggestive of a CSF leak.
These were the numbers:
White Blood Cell Count: 26 / cmm
Red Blood Cell Count: 70 / cmm
Monoclear: 100%
PMN’s: 0%
Protein, CSF: 325 mg/dL
Glucose, CSF: 2 mg/dL
I was told by Dr Chambers that the above results indicated that there was CSF in the sample, despite the test not including the preferred Beta-2 Transferrin.
I haven’t been able to confirm that, and unfortunately, I didn’t have the results of this test available for the doctor I saw today.
Does anyone have any idea what the results of the CSF Panel test would mean if run on nasal discharge? My limited understanding is that this volume of white blood cell count, red blood cell count, protein and glucose would indicate a significant abnormality beyond just sinusitis.
The sinus surgeon I saw today did offer to follow up with a Cisternogram where they’ll actually inject contrast into my spinal fluid through a lumbar puncture to more readily see a leak (if there is one). And I can try to collect enough fluid for an actual Beta-2 Transferrin test, though it can be tough to do.
At this point I’m thinking the best thing to do would be to get the venogram as quickly as possible and fix the venous compression and let the experts (Hepworth or possibly McDougall) determine if I have a CSF leak as a secondary issue.
I’ll probably go ahead and do the cisternogram since I have to come through Portland to get up to Seattle for the venogram anyway.
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A shame about the test not being requested…I hope you can get the venogram soon & see Dr Hepworth soon!
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I totally agree w/ this statement.
Also, @vdm just posted this info today:
In the healthcare environment settings, usually these methods are used to suspect/test for CSF leaks:
Non-invasive:
- CT scan to look for skull base and other skull bone defects/“holes”, leading to suspected site where the leak happens
- MRI based on signal intensity on T1/T2 modalities, as CSF is bright white in T2, and dark in T1 in these pictures. I think other modalities can be used too but I’m not that good at all the MRI physics
Now come invasive methods:
- CT myelography, where contrast media is injected into the spinal canal and the CT scan shows where the contrast media manages to get out.
- MRI myelography. Same as CT, but in my opinion, risks are higher due to more toxic contrast media (depends on the patient)
- Cisternogram, which uses similar technique to inject the fluid into the spinal canal, but the injected material is radioactive and then scanned using radioactivity-detecting cameras, similarly to bone density imaging
- simple lumbar puncture aka “spinal tap” where the needle is inserted into (usually) lower back and a manometer is used to check the pressure of the CSF. Low CSF pressure reading might suggest presence of CSF leak, but other medical conditions might cause it too
It’s worth mentioning, that the invasive methods, especially myelography, are risky, sometimes causing life-long debilitating symptoms.
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Could you elaborate on the invasive methods sometimes causing life-long debilitating symptoms?
I hadn’t heard that, but I may not have a choice if CSF leak(s) are part of my clinical picture.
Well, there are too many to elaborate on, from non-healing reoccurring CSF leaks at the place where the needle enters the spinal canal, to spinal cord adhesions, to neurotoxicity, incapacitation and death from contrast media agents, among others.
It’s best to look for the latest research on Google, usually using search terms like blah blah blah long term injury, or blah blah blah long term side effects.
It’s worth remembering that “no matter how bad it is, it always can get worse”. A lot of medical procedures carry less or more significant risks for doing more damage, including permanent one, that’s why we have the cliche “only if benefits outweigh the risks”. So it’s always useful to know the possible risks, and especially be aware of them while being treated by “easy-going” medical practitioners. To them, our permanent side effects are just statistics. To us, it’s our permanent life.
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I highly, highly, HIGHLY advise against seeing a chiropractor for this or any other reason - but especially this, given the issues you already suffer. The results could be catastrophic, making you much worse or even killing you. Please thoroughly research this on websites that are not run by/written by the chrios themselves.
Edit: I am so sorry. This was show to me as a new topic and I did not notice how far back it was posted, the LONG string of comments and so on.
I have a lot of reading to do!
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No worries. I’ve done the same thing before, too, @slekeille. I don’t think it’s a mistake for you to air your concerns even “late in the game”.
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You probably saw this by now slekeille, but I’m seeing an Atlas Orthogonal upper cervical chiropractor.
The adjustments to the atlas using this technique are extremely gentle. They use an instrument they call a “percussion instrument” that uses sound waves to gently reposition the atlas.
Although subject to debate, there is some evidence that these types of upper cervical chiropractors can be helpful for people who have this condition.
In my case, I have noticed improvements. I’m certainly not worse.
The adjustment itself takes literally one second. He positions the head of the instrument right behind your ear, presses a button and you hear a “click” sound. And that’s it. You really don’t feel anything at all and it takes maybe one second.
His philosophy is that you adjust the atlas based on precise measurements, and hold the adjustment and the alignment of the spine slowly readjusts based on the correct atlas position.
He doesn’t even adjust the atlas on every visit, only if I’m out of alignment. The rest of the time he works on the soft tissue in my back using various techniques and instruments similar to the Theragun to help your body come to a better alignment based on the corrected atlas position. He gives me stretches to help elongate my spine and increase flexibility and his partner does massage.
I’ve found it helpful. I wouldn’t even consider a chiropractor who does “high velocity” neck adjustments.
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I just thought of a couple things I’d like to ask the community here.
First, I’m wondering if there is a general consensus about the role of craniocervical instability in this condition. Is this a condition that is often coexisting with Eagle Syndrome and jugular vein compression, or is it involved with only a certain percentage of patients?
I’m wondering a couple of things about this. First, does it make sense to get a formal diagnosis of this with something like a digital motion X-ray or even upright MRI? Maybe this would pinpoint exactly where the hypermobility is in the cervical spine which could inform future treatment?
I’m wondering about the balancing act between surgeries to correct the compression problem, and the necessary impact on ligaments that serve to stabilize the neck.
It would seem that the correct approach would be to do the minimum surgery necessary to decompress the jugular veins, and then possibly do something like prolotherapy, PRP or some other procedure to help strengthen and stabilize the ligaments that may be weak in cases of craniocervical instability?
I know that the Centeno-Schultz Clinic has a special (and very expensive) procedure for patients with CCI:
Not sure if anyone has gone down this route?
My hope is that my symptoms are primarily from right internal jugular vein compression and that a (hopefully) minimal surgery to release and open up the vein, along with fixing any CSF leaks will solve my problems. I hope I don’t have true CCI or EDS.
Dr Hui mentioned the possibility that I get checked for EDS, but I kind of doubt I have it. I don’t have any of the telltale signs of EDS. I’m fairly flexible but not hypermobile.
Anyway, curious what others think.
Over time we have noticed an increase of members who have ES & IJV compression in conjunction with CCI. This makes sense as the body will try to compensate for CCI by adding extra support into the neck (i.e. elongation/thickening of the styloids, s-h ligaments & sometimes the stylomandibular ligaments & maybe even the hyoid bone) in order to help stabilize the hypermobility in the neck. The extra calcifications in the neck then create their own problems i.e. nerve & vascular compressions & related symptoms.
Not every person w/ IJV compression has CCI as evidenced by the number of our members who’ve benefitted from IJV decompression surgery w/o needing any further treatment. Sometimes vascular compression is caused by scar tissue, nerve impingement, lymph/salivary gland or muscle compression. Even in cases where C-1 is involved, it isn’t always the main cause of pressure on the IJV. Those who have IJV decompression surgery & continue to suffer w/ nerve & other vascular symptoms are possibly more likely to end up w/ a CCI diagnosis.
I think, as you do, that a good first step for you is to get your IJV decompressed & see if your symptoms resolve or mostly do. If not, then spend the money to look into a CCI diagnosis.
There’s been a few discussions about proplotherapy, some have found it helpful, but others have been worse…
It’s a hard one about CCI as that seems to vary too with whether the ES surgery makes it worse or whether the surgery helps the ES symptoms & doesn’t affect stability…
I agree though in all circumstances that the minimum surgery necessary is the best route, & to make that informed decision you need testing if possible. Kind of what @Brandy was saying in one of her posts.
I don’t know about percentages of those with IJV compression & CCI, I had IJV compression but haven’t got EDS or CCI…
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Still waiting for my appointment with Dr McDougall, but I’m feeling very encouraged. They have the referral but need to consult the team to adequately schedule the venogram and consultation in the same visit.
I’ve done some additional research on Dr McDougall and he certainly seems like a very impressive guy. He’s currently working at Swedish Cerebrovascular Center in Seattle, but he was at Barrow Neurological Institute for over twenty years. I know a number of people have had surgery for this condition at Barrow so that probably explains his familiarity with it.
It would be amazing if Dr McDougall could also do the surgery. As suggested, I don’t think Dr Hui would recommend him unless he was very competent.
My top choice would still be Dr Hepworth, but (especially if my situation is relatively straightforward) I don’t know if it makes sense to wait many months longer if Dr McDougall is perfectly competent to do the job.
I guess I’ll wait to see what the venogram says. I still have suspicion and concern about a clot that has been missed on CT and MRI, or something exotic like a CSF-venous fistula. I could just be paranoid about this, but I’m sure Dr McDougall will be able to see whatever is there and devise an appropriate plan based on what he finds.
I few additional updates:
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My lumbar puncture revealed nothing abnormal. Opening pressure was normal and I didn’t have evidence of any infection. No meningitis, thankfully. I know that many people with this condition have normal opening pressure on lumbar puncture, especially if they have a concurrent CSF leak. There are too many factors that could influence the reading.
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More frustratingly, the CT scan I had at OHSU did not visualize any defect that could clearly indicate a CSF leak. The doctor is going to follow up with a CT Cisternography.
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Thank you for the update. I’m looking forward to learning more about Dr. McDougall. He definitely has a good background & likely also good knowledge about ES having worked at Barrow for that long. I think you have good reason to feel safe in his care.
I hope the venogram & consult are able to be scheduled very soon. I do agree that if you have anything insidious going on, Dr. McDougall should be able to see it & discuss it with you. It’s hard not to have fears like those you’re experiencing when you have already gotten an unsettling diagnosis. I hope he’s able to either diagnose or confidently dismiss your suspicions. It would be great if he is willing to do your decompression surgery. Regardless of his years at Barrow, if he offers to do your surgery, I would still ask him how many decompression surgeries he’s done. Experience is everything in this arena & can be very predictive of surgical outcome.
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Unfortunately, I still have been unable to schedule the venogram and consult with Dr McDougall. They said they’d call me back to schedule so hopefully tomorrow.
In anticipation of the visit, I have a couple of questions.
- Is there a consensus that for jugular Eagles syndrome (and maybe other types as well) you need to resect the styloid process to the skull base leaving as little as possible?
When I had my first styloidectomies, they were resected down to 2 cm on both sides (from 4.7 and 3.7 cms).
I’m getting the impression that, depending on the angle and thickness of the styloids, they can still cause considerable problems even if they are “normal” length.
Do most of the experienced doctors now resect the styloids to the skull base?
- Is there a consensus regarding the need for surgery of the transverse process of C1? I was under the impression that Dr Hepworth does NOT operate on C1 but rather moves the jugular away from C1 which usually resolves the issue.
I’ll do whatever is necessary to resolve the problem but I don’t want to do more surgery than is needed, especially if the C1 surgery is more rare and less is known about the long-term effects.