Update re Nakaji/Mehta

General
1

Hi everybody,

I just wanted to give an update in case the information is helpful to anybody else. I know I’ve followed a few stories on here that were similar to mine and gave me some resolve during the process.

I ended up booking an appointment in Scottsdale with Dr. Mehta to undergo a catheter angiogram/venogram, which Dr. Nakaji requires before he will assess your case. To be clear, Dr. Nakaji’s office would not schedule me to see him until after the venogram/angiogram, and then only if the venogram showed something he thought he could assess and likely fix. I know some other were able to schedule a back-to-back appointment in one trip with Dr. Mehta and Dr. Nakaji. I did however stay a few days after my venogram just in case I could be fit into Dr. Nakaji’s schedule that same week. Since my venogram showed a straightforward case of bilateral compression of my jugular veins via my styloids, Dr. Mehta and Dr. Nakaji both agreed I would be a candidate for at least one surgery, and possibly two (I don’t have a dominant jugular so they are unsure if one will do the trick). Either way, I was scheduled for surgery in late January with Dr. Nakaji.

I will say that I was a bit annoyed that I had to undergo an invasive procedure like a venogram just to see Dr. Nakaji, it turns out that the procedure fully revealed relevant information that neither my CT Venogram nor my jugular ultrasound picked up. Dr. Nakaji also stated very specifically that he is not going to cut all the way to the skull base because there is too much risk for nerve damage that high up. He said he would only cut the styloids to the point where they intersect the jugulars and create a problem. He said he also goes into surgery expecting to find (and possibly alter) things he doesn’t see on imaging: odd placement of jugular veins or nerves; enlarged lymph nodes; calcified or otherwise high strung ligaments (digastric and stylo-hyoid). He also said that within the last few years, he is starting to think that the removal of the carotid sheath may be an important aspect of decompressing the jugular vein when it otherwise wont open up.

Anyhow, if anybody has any questions for the sake of science, or to be better prepared for what to expect from scheduling with Dr. Mehta or Dr. Nakaji, I’d be happy to share more details. Like I said, I found solace in some others’ similar posts in this group when I was having seconds thoughts about the venogram. So thank you to those who came before me. It helped me immensely.

5 Likes
Too tired. Am I chasing another ghost?
2

What a great & helpful post, @RobotEagle. Thank you for taking the time to share this information. I’m sure it will help others who are considering seeing Dr. Nakaji know what to expect. I’m sorry it didn’t work out for you to have your appts in Scottsdale back to back but I’m glad you’re on Dr. Nakaji’s surgery calendar in January. I hope the time seems to pass quickly.

You said you were booked w/ two surgeons is the other one also for vES or a different surgery?

Please let us know surgery dates so @Jules & I & others can pray for you.

1 Like
3

I was also booked with Dr. Hepworth in April but I will be giving up that surgery date (note to anyone looking for cancellations).

2 Likes
4

Thank you for that info, & glad you found others’ posts useful too… Interesting that Dr Nakaji will leave a bit of the styloid, useful to know that he will address any other compressions he finds. So out of interest, did your CT & ultrasound you had originally not show any compression of the IJVs? A good job then that you decided to have that extra testing!

1 Like
5

@RobotEagle - Great that you booked w/ Dr. Hepworth when you did, but a second opinion is often worthwhile as different doctors have different approaches & personalities, & one can stand out as being more aligned w/ what you’re looking for. I also went with my second opinion doctor when I had my styloidectomies.

2 Likes
6

I’ve been under the impression it’s best practice to remove the styloids at the skull base in cases of IJV compression. Are there different schools of thought on this that I wasn’t aware of? Is Nakaji alone in this approach or are there others who do similar decompression procedures following suit?

1 Like
7

If Dr Nakaji is removing the styloids above where the compression is then this should be okay- we say for best results remove up to skull base because usually the compression is pretty high up & close anyway, and less experienced doctors might not check that the IJVs are decompressed, but Dr Nakaji is very experienced and obviously checks that he’s removed enough. I presume if the compression appears to be higher than the scans indicate he would remove the styloids higher- does this make sense?
The whole ‘removing to skull base’ is the best advice to avoid any compressions or irritated nerves, but seems to be a grey area as often even the doctors who said they removed the styloids to skull base leave a little nub!

2 Likes
8

Dr. Nakaji told me that he performed hundreds of cadaver dissections as well as utilizing 3-D modeling to determine how much of the styloid process needs to be removed to get symptom relief without injuring the cranial nerves. For my own second surgery, the surgical plan was to shave C1 and styloidectomy (as we had done one the other side) but once in surgery he determined the C1 shave to be too risky. He resected the styloid enough to see that it easily cleared C1 and left plenty of room for the IJV. He has perfected his skillset and continues to learn which is a great combo in a surgeon.

4 Likes
9

Great to know that Dr. Nakaji truly works on a “case by case” basis & doesn’t have a “one surgery fits all” mindset, @Chrickychricky. That’s how it should be with all doctors!

2 Likes
10

My CT and ultrasounds both showed compression, but neither appeared to show the extent of the compression and there were some artifacts that made it difficult to fully see what was going on.

When I did my CT with contrast for instance, the dye couldn’t get past the point of compression at C-1 and the styloid on either side so it created a “pool” of bright blotches on the CT. This was helpful because it seemed to confirm there is a physical blockage, but not so good for visualizing the area in detail or visualizing the vein above the compression point.

The other issue was that my ultrasound wasn’t fully consistent with the CT. My ultrasound showed compression on only one side. But the CT appeared to show bilateral compression. So as many of us now know, Dr. Nakaji likes to be very sure. The angio/venogram showed the full extent of the compression and importantly, where the blood was draining. This last part was helpful in deterring which side to schedule first in the hopes of opening up the best avenue for good flow on the first go around. Dr. Mehta had mentioned that the test is helpful because someone might be more compressed on one side or be more dominant, but if the body is draining out the other side for some reason, it would make more senes to assess that side first.

Lastly, my previous scans have always exhibited a minor herniation of the cerebral tonsils (Chiari) but the extra imaging was helpful to further determine that such a finding is very likely incidental. Just a fun(?) note for anybody else with a Chiari finding (I know there’s at least a couple in this forum), but Nakaji actually postulated that he thinks some individuals will exhibit signs of Chiari because of the jugular compression. The compression will alter fluid dynamics and pressure in the brain which can sometimes cause those predisposed to it to show signs of tonsillar herniation on scans. He said it’s possible that these findings would stop showing up once the jugular compression is addressed.

4 Likes
11

You’ll have to let us know if your post op scans demonstrate what Dr. Nakaji has theorized. His idea makes logical sense. :blush:

1 Like
12

Descended cerebellar tonsils as a consequence of intracranial hypotension induced by IJV compression has already been reported in literature: Brain Slump Caused by Jugular Venous Stenoses Treated by Stenting: A Hypothesis to Link Spontaneous Intracranial Hypotension with Idiopathic Intracranial Hypertension - PubMed. This is an old-ish paper by Nick Higgins, who works/has worked with Dr Patrick Axon in the UK on vascular eagle’s. The paper postulates that a csf leak induced by intracranial hypertension (itself caused by the IJV stenosis) led to intracranial hypotension and brain slump in the reported case, which was resolved by IJV stenting. More broadly, spontaneous intracranial hypotension is known to mimic chiari: https://thejns.org/view/journals/j-neurosurg/136/6/article-p1796.xml . I don’t know whether this is the mechanism Dr Nakaji suspects may cause the mild Chiari you mentioned (it sounds like he suggests hypertension not hypotension may be at fault), but I just wanted to share this in case it’s of interest.

3 Likes
13

Thanks for that reminder of Mr Higgins’ paper @crumblecookie … how are you doing?

2 Likes
Csf leak & eagles
14

Hi all,

I got a few personal messages about the details of the catheter angiogram/venogram procedure, so I thought I’d repost most of my message here in case it helps others more generally.

Before the procedure, I asked Dr. Mehta about whether I would be under sedation, fully awake, or somewhere in between. He said that for people with suspected jugular compression, they conduct the procedure under light sedation. We have to be awake enough to take direction so that we can move our heads in order for them to determine if there is compression or collapse of the jugular vein in certain neck/head positions. Unfortunately, you can’t be out cold because then you don’t retain normal muscle tone which many doctors think is key to reproducing the same compression that occurs when we are awake. I also asked him if that meant that there was a chance for a false positive even on twilight sedation. He said he thinks as along as you have any muscle tone and are technically awake, sedation does not effect the results.

I was awake and remember a lot of the procedure (but not all of it), however this was in a twilight state and I simply did not care about anything. My mood during the procedure was downright giddy. And this is after being very anxious going into the procedure; right up until the point where the anesthesiologist started the light sedation. Some people say that when they first “go in” at your groin, there is some discomfort. In my case, I don’t even remember that part. They must have done a good job administering enough meds for certain parts, because then I remember all the rest of it. Once he’s in, it’ actually pretty crazy how little you feel. Once he gets to the neck and head area (where there is likely compression) you will feel it more. It is mostly painless, and even then it’s just a touch uncomfortable with pain that is less than what most of us go through on a daily basis. He’ll warn you as he’s doing it. He kept saying he was “tickling my ear.” I would say it was more than a “tickle” but less than a bug bite. Nothing to worry about.

Once he was done, and as he extracted the catheter, I felt a little bit more pain in my groin. Nothing terrible but I did mention to them and they just administered more meds. I felt pretty out of it for the next hour or so once they bring you to the rest area (there’s a photo of me afterwards where I demanded that I wear my GF’s sunglasses and that she needed to document it. I have the biggest shit-eating grin). I mention that just to say that it wasn’t a big deal even when there was a bit of pain.

If I had to do this again, I would not stress nearly as much, or really at all. What made the experience worse, really was my fear and anxiety. The actual procedure just sounds scarier than it really is. I can’t stress this enough. I think another poster mentioned something about the scariest part is the fear itself. Spot on analysis.

Dr. Mehta’s office and staff are wonderful. Dr. Mehta himself was great to work with. I felt very comfortable in their care.

There is one tiny thing you should be prepared for. It’s really not a big deal but I was a little surprised (even though I was warned about it by Mehta’s staff and other users on this forum). Afterwards, your groin will be pretty sore and tender. It will look even worse. The bruising is wild. However, it looks worse than it is. I mostly rested the next day on the couch. I walked lightly by day two. After that I did everything I would normally do except workouts or moderate/vigorous exercise. I couldn’t quite get to my regular exercise until today (1 week). But that was also mostly because I’m trying to make sure I give my body plenty of rest. That said, now knowing that my groin being sore for a week afterwards is truly the worst part, I wouldn’t sweat it if I had to do it again.

Also, it makes us sound pretty metal when you regal your holiday guests with the story about how you were awake for a procedure where they shove a catheter up your groin into your skull. (I leave out the part where it’s really a pretty easy procedure :wink: ).

Sorry for the long post. I just wanted to give the full recap. I know I found some solace in some others’ posts who did the same procedure (@jalexy12 , your info was very helpful to me and I hope you are doing well post-op).

4 Likes
What are typical after effects, if any, after a venogram?
ES Information: How Is ES Diagnosed
15

Interesting that you had significant groin pain after your venogram @RobotEagle. I had none, but mine was done by a different doctor who put me completely under. I asked about milder sedation for better results but he claimed sedation doesn’t make a difference one way or the other. I think Dr. Mehta’s approach may give more accurate results for the reasons he gives.

1 Like
16

Hey @Jules , I’m doing good actually, thanks for checking in! I am now close to 3 months post-op and the biggest improvements I’ve noticed over the past few weeks are a noticeable reduction in my anxiety, brain fog, and increased energy level. I’m being cautiously optimistic, though, as I cannot say for certain whether this is due to the surgery itself, or due to a few new supplements I’ve started taking since the surgery, under Dr Nakaji’s supervision. Regardless, I am very grateful for the improvements. Other symptoms persist, like the visual snow and non-pulsatile tinnitus, the latter of which has fluctuated in intensity, sometimes to levels higher than pre-op, but I view this as normal post-op weirdness, and I’m not too bothered by it.

The other notable thing that has happened is that I had a two-week period where I would get some pretty unpleasant migraines on the left side of the head (my IJV decompression surgery was on the right) when sitting at a desk, which historically has been the position that exacerbated my symptoms the most. The pain mapped really well over the area innervated by the ophthalmic branch of the left trigeminal nerve. What was interesting was that I discovered that if I apply mild pressure with my hand on the right IJV while the migraine was raging, I would feel a wave of almost cold (similar to how it feels when blood rushes back into a limb that isn’t properly irrigated, e.g. when you stand up after sitting cross-legged for a while) wash over the same area where the migraine was located, and the migraine would dissapear instantly.

What follows is just speculation, but I wonder whether the migraines were caused by the now-free right IJV allowing for less restricted flow, which meant a lower pressure gradient between the superior sagittal sinus and the heart, which in turn means reduced flow of blood through the left IJV, which is still significantly compressed. This was one of my main concerns pre-op (that a unilateral surgery on the right IJV might actually impair flow through the left IJV). I wonder whether this could be one of the reasons some people develop worsening symptoms on the opposite side from the one they had their surgery on.

Anyway, if this was indeed the case for me, since one of the main drainage routes for the cavernous sinuses is through the lower part of the sigmoid sinus (which sits right above the IJV compression site in my case), a reduction in flow through the left IJV would mean impaired drainage (and potentially higher pressures) in the left cavernous sinus. And as the cavernous sinus wraps around the ophthalmic nerve, I think it is possible that it could irritate it enough to cause the pain (and nose pressure) I was experiencing. When manually recompressing my right IJV with my hand, I would raise my pressure gradient back to pre-op baseline, which in turn would force more blood to flow through my left IJV, allowing for better drainage of the left cavernous sinus.

Regardless of the cause, the migraines have disappeared completely since. I am now slated to do a time-of-flight (TOF) MRA and MRV in the new year to assess the state of the vein. A comment on this as well: if anybody needs to do imaging post-op to check the calibre of the vein, it might be worth checking with your surgeon if they think it’s possible to do a TOF MRA/MRV instead of a CTV. The advantage of the TOF MRA/MRV over the CTV (and why I pushed for it) is that the TOF MRI can be done with no contrast agent, and it doesn’t involve any radiation exposure. The disadvantage is that if compression is still present, it is unlikely to be helpful in establishing the cause (as bony material is not visible on a TOF MRA/MRV), and usually, the resolution and contrast are worse than a CTV, so you might have to do a CTV afterwards anyway. Dr Nakaji was happy with the quality of a TOF MRV I did in the past and said it might be worth a shot, so personally, I am willing to take that chance to try to avoid further radiation exposure.

3 Likes
17

Thanks for the info @RobotEagle , very helpful for members in the future! I’m glad that it wasn’t as bad as you were expecting :smiley:
Have you had any results yet, did Dr Mehta explain what he found?

1 Like
18

I’m glad you’re doing well & are chilled about the recovery time @crumblecookie, that’s good to hear! Interesting theory about your migraines & the left sided pressure, I’ll try to remember that info but probably won’t know where to find it again…
I’ve not heard of the TOF MRA/MRV, that’s interesting too, & I hope that it’s helpful…Take care :hugs:

2 Likes
19

@crumblecookie Thanks for the great update. Wishing you continued good health!

3 Likes
20

I don’t have a written report yet, but Dr. Mehta and Dr. Nakaji both detailed what they saw. It ended up being helpful because they were able to assess the extent of the stenosis on each side, where the fluid was going, what triggered pressure gradients, and whether I have a dominant jugular side.

The left side is shut, and the right side is about 80% occluded, but if I move my head any direction, the right side showed significant pressure gradients. Both sides collapse simultaneously if I move my head in any direction (but remain as open as they can when in neutral).

Dr. Nakaji mentioned that I’m as straightforward a case of bilateral jugular stenosis as it can get. He said this is good because it’s more likely I would see some relief from the headaches and pressure. He did warn me that some people do not see relief from the tinnitus and many with my particular build will have some shoulder pain for a while afterwards - a bargain I would gladly accept.

He did say that he is hoping for one surgery but expects two. This is partially because I’m stenosed on both side, but also because I do not appear to have a dominant jugular vein. He said I have two “medium sized” jugular veins, which is great for flow as long as they aren’t blocked. But he’s unsure whether one surgery will be enough since it will only open up a “medium” sized vain, rather than targeting a dominant side that can open more.

He also said that (like many of us on here) that my styloids are not huge my any means, but that they angle backwards instead of straight down or forward, which is causing a tighter window between the C-1 Process and the styloids. My styloids are 3.2 and 3.4cm respectively in case anybody else is in the same boat and is told this isn’t clinically long enough to cause issues. Luckily, all my health care providers always took my case seriously and I never felt gas-lit like many others. But I know others are turned away for not having styloids “long enough.”

3 Likes