I could use some help deciding about surgery and thoughts on my images

[Chrickychricky]

This is my first post and I could really use some help.

My symptoms started about 4 years ago with pulsatile tinnitus on the right and suboccipital headaches during sleep. MRA showed bilateral stenosis but no one picked it up at the time. About 2 years ago I started to have floaty dizziness, vertigo, an increase in intensity and pulsatility of tinnitus, near syncope with neck flexion. And I have this constant pulsing at the base of my skulll and upper neck. Repeat MRA identified bilateral IJV stenosis and radiologist saw it in the scan from 4 years ago.

I went to Dr. Hauser for nearly a year. Also tried chiro, myofacial release, dry needling, PT, pain management, class V laser, Graston and ART. Limited or no success. Hauser ordered CTV which again confirmed stenosis.

I consulted with Dr. Samji and Dr. Osbourne who both said they could remove the styloids but it wasn’t clear to me that this would be enough to resolve my symptoms (I think C1 may be involved). So I really dug into the research to understand it better.

At the start of this year the tide really turned. I wake up feeling exhausted, I have brain fog, memory problems, I can’t concentrate for very long, my skull is pulsing and I have a lot of pressure, on top of all the other symptoms. I’m at the ‘how am I going to go on like this’ point.

6 weeks ago I had an IR angiogram with Dr. Amans at UCSF. Again, bilateral stenosis proved. On the left there is no drainage out of the IJV supine or neck flexed, everything shunts to the right. The right is also severely blocked with everything shunting to cochlear vessels. Pressure gradient at SSS 19/0. There are significant pressure gradients throughout the venous system.

Dr. Amans said “we proved the stenosis but we haven’t proved that the stenosis is causing your symptoms”

In the meanwhile UCSF sent me to the complex neurology clinic, basically the island of misfit toys for neurological problems. This doctor was looking for what else it could be if it wasn’t from the stenosis. She thinks there could be a migraine quality to it and wants me to try Emgality.

I also had a video consult with Dr. Costantino a few weeks ago. He gave me his thumbs up for surgery but I have to wait 6 weeks to meet with Dr. Tobias. I am flying to Phoenix in a couple of weeks to meet with Dr. Nakaji. Surgery with either of them would be out-of-pocket.

Everyone I have been in contact with at UCSF, Dr. Amans, Dr. Winkler (neurosurgeon who did his fellowship with Dr. Lawton), neurologist and pain management doctor all caution against the surgery.

I am really suffering and I feel like I have tried everything in my power to try and I’m scared of the possibility that surgery could make things worse. I could really use some advice about how to proceed. I’m going to try to upload some images.

Thanks for listening to my story

[Jules]

How helpful that the neuros that you’ve seen all agree that there’s stenosis, but are cautioning you against having a surgery which could potentially correct this Did they offer you any alternative treatment?!
It sounds as if you’re having symptoms Intracranial Hypertension, and it’s no quality of life for you, plus not good for your brain function to continue like this…Personally, I chose to have the ES surgery because I had some horrible IH symptoms, which were worsening and getting quite scary. I didn’t have any C1 involvement, and was very lucky that the surgery helped me massively without any ill effects- I got my life back. I felt there wasn’t really a choice; to leave the styloids in would continue making me feel really ill, and that was worth taking any risks that there might be with surgery. Dr Costantino, Dr Tobias and Dr Nakaji are all experienced surgeons, and all good choices for surgery especially as you have C1 involvement. There are risks with any surgery, but leaving this medical situation as it is is making you ill anyway, so as long as you see the most experienced surgeon possible that will decrease the risks slightly. They will hopefully look for any other issues causing compression (sometimes the SCM muscle can compress the IJV also and occasionally nerves or other blood vessels). There has been some discussions about whether C1 shave can contribute to instability, especially if people have CCI already, but others haven’t experienced this. Something to bear in mind though.
If you read @Barrootz discussions and story hopefully it will allay some fears…

[Barrootz]

…and Costantino will do remove consult and review your imaging with you.

[Jules]

You deserve to feel better (google.com)
Here’s a link to @Barrootz story

[Chrickychricky]

Yes, I had that already but still need Dr. Tobias to concur

[Barrootz]

That’s good news as Tobias does remote consult as well. Good luck.

[Chrickychricky]

Thank you so much for your response. It made me cry, I cry a lot these days. So far the only treatment suggestion is to try a migraine medication. I meet with Dr. Amans again tomorrow. He is an interventional radiologist who is one of the people very interested in venous congestion. If you saw that webinar from a few months ago on venous congestion he is on it along with Hui, Hughes, Hepworth…the whole gang. So I take it seriously when he says we can prove you have VES but we can’t prove it is causing the symptoms. He just wants better data but it’s just not there yet. I’ll know tomorrow if he has a treatment plan or not.
Anyway, you speak the truth when you say things no way to live.

[Isaiah_40_31]

@Chrickychricky - Dr. Amans is a brilliant doctor, but he has little experience w/ ES. I have a friend from this forum who is seeing him as well, & he nearly convinced her not to have IJV decompression surgery. In the end she went through with it & is very, very glad she did as it helped many of her symptoms resolve. She had both of her surgeries done by Dr. Hepworth last year. As you know, Dr. Hepworth doesn’t generally do a C1 shave which wasn’t necessary in her case. She is still in contact with Dr. Amans for another problem but no longer for the venous congestion.

Looking at your images I can clearly see the IJVs are constricted and it sure looks like it’s C1 pushing on them from behind. Dr. Costantino would be a good option for you. We haven’t heard much about Dr. Nakaji except that he shaves C1. It will be good for you to find out if he also does styloidectomies as getting your styloids shortened will help reduce the nerve pain component of your symptoms.

[Chrickychricky]

First of all, thank you so much for your reply. It is so helpful. Dr. Amans will tell you that he is a ‘data guy’ so he doesn’t think surgery should proceed without data indicating it will be successful. Unfortunately for those of us with VES, the field is just developing and they haven’t come up with the tests that prove the stenosis causes the symptoms. Plus every doc I have spoken to at UCSF has had experiences treating people whose styloidectomy failed. So this leaves me with fear about getting the surgery. Of course, the people who improved don’t show up at their door so they don’t know about the successes.

In the meanwhile, I’m struggling daily with dizziness (floating feeling), brain fog, fatigue, constant pulsing in my head and neck, headaches, pulsatile tinnitus, and on and on. I can barely work and I’m just getting by each day. Would you be able to say the symptoms your friend had and which ones resolved? Thanks again.

[Jules]

Certainly for myself, the dizziness, the off-balance feeling, pressure and pulsing in my head & the pulsatile tinnitus went straight after surgery, but just with the styloid removed for me…

[Violin]

I have a telehealth consult with Dr Amans this afternoon. It’s a followup since around a year ago. I knew I had pulsatile tinnitus, but it’s not painful nor disabling. Now that Dr Hepworth has done my styloidectomies and jugular decompressions, I’m hoping Dr Amans will proceed to get rid of the pulsatile tinnitus.

Let’s stay in contact. I looked 8 years to find a surgeon. Glad I had surgery.

[Chrickychricky]

So I met with Dr. Amans today and much to my surprise he is recommending surgery to remove styloids. I asked about C1 and he looked at my images and said there is no room to resect C1 on the right as the vertibral artery is too close to the IJV on that side…good to know. He referred me to a skull base surgeon and and ENT at UCSF. I’m trying to book consults with both to see how they would approach it. As far as I can tell neither has any experience with VES. He mentioned a study published in the last month or so that looked at a cohort of 40 patients post styloidectomy. He said 30% got better and stayed better 1 year post-op, 30% were unchanged and 30% got better but by one year had symptoms return. I asked him to send me the reference so I can read the specifics and post it here. That being said, he is still recommending surgery.

[Isaiah_40_31]

@Chrickychricky - What we’ve found over the years I’ve been on this forum (since 2014) is that many of the BIG, highly respected hospitals in this country know very little or nothing about ES, & that includes UCSF. The majority of the doctors on our Doctors List are in private practice. They are not part of major medical centers. When someone is diagnosed w/ a rare disorder, it’s natural to go to a large medical center as it seems the knowledge base there should include a wider variety of more obscure diseases & syndromes, but sad to say, that isn’t the case. UCSF doctors are not the ones you should be seeking information from regarding surgical outcomes because, as you noted, they mostly deal w/ patients who had failed surgeries which in part may be due to their surgeries being done by surgeons who are inexperienced w/ ES so don’t cut the styloids short enough or aren’t familiar w/ vascular ES so vascular decompression isn’t done. Another possibility is because there are other syndromes that have similar symptoms so ES surgery isn’t always the answer for symptoms resolution. Also, as you noted, these doctors aren’t taking into account the many who have had good results from surgery because they don’t know these people exist as they have no need to return for further medical care.

I live in the SF Bay area & though there are several ES surgeons here, there is no one who deals with VES or even acknowledges it except one Kaiser doctor, & his surgical technique isn’t as “polished” as those of Dr. Hepworth & Dr. Costantino so the results haven’t been as good for his patients.

My friend who also sees Dr. Amans had some significant improvement after her styloidectomies & vascular decompression surgeries. Her terrible headaches reduced dramatically; she can now bend over & stand back up w/o feeling like she’ll pass out & her chronic fatigue symptoms have reduced. She has other health challenges which she is now able to deal with because her major ES symptoms are reduced enough she can focus on those. One of her IJVs was being strangled by her vagus nerve, scar tissue & pressure from her styloid. I’m not sure about the other one, but freeing them both up has definitely improved her quality of life just as it did for @Jules.

If you haven’t watched @Barrootz YouTube series (link in post above) yet, it will be worthwhile. He echos what several of our members who’ve seen Dr. Costantino for surgery have said. There are also numerous research papers here: Research Papers - Living with Eagle that report the benefits of IJV decompression.

This is obviously a decision you need to make for yourself, but I’ve seen enough success stories on this forum to feel safe recommending that you highly consider surgical intervention to get the blood flow out of your brain improved. Thinking about, planning & scheduling surgery is scary because of all the unknowns, but each one of us who’s had surgery has chosen to take the chance that our lives would be better on the other side. I for one am glad I took the plunge.

[Barrootz]

This is exactly what happened to me….a neurologist put me on emgality for migraine, then Effexor, then Pristiq and got me dependent on that stuff for a long time……it is brutal to get off of SNRI/SSRI class of medications……proceed with extreme caution if Dr wants to put you on something for ‘migraines’. I’ve been off Effexor for 3 weeks and still dealing with withdrawal symptoms (after doing a long slow taper) there a great group on Facebook called Pristiq/Desvenlafexine active withdrawal support link. I highly recommend if you even think about a ‘migraine’ med you thoroughly research getting off it before starting it. Many drs will incorrectly say ‘just stop taking it’ and it doesn’t work that way….they SIGNIFICANTLY alter brain chemistry. Feel free to reach out to me. You can get me via my web site.

You deserve to feel better - Jugular Vein

[Chrickychricky]

Well said, thank you. I have ready just about everything that I think relates to me on this forum and every publication on Eagle’s and VES that I could get my hands on. I watched @Barrootz videos, attended the venous congestion webinar trying to understand what’s happening and what would be the best approach to have the greatest outcome. I am grateful for the responses to this post, they really help with the fear component. I feel a weight off my shoulders having now made the decision to have the surgery. What’s left to think about is which surgeon has the approach that will be best for me. I think you are totally right @Isaiah_40_31 that UCSF surgeons could do the surgery but have no experience with its nuances. I meet with Dr. Tobias on May 8th (already having met with Dr. Costantino) and Dr. Nakaji on May 13. I also have an appointment with Dr. Hepworth in August but I don’t think I can make it until then.

As far as medication goes, I don’t have migraines but the doctor thinks there could be a migrainous quality to the symptoms. Migraines are a threshold problem meaning the nervous system crosses the threshold and can’t get back (very broadly speaking). The doctor thinks it’s possible that I’m having some threshold issues. I’m not sure but I am willing to do a trial on Emgality because it has a very low side effect profile. I am not willing to take SSRI/SSNRI medications because I know how hard they are to get off of and I don’t believe they would be useful for my symptoms anyway. I am so sorry you are having to go through all of that @Barrootz.

[Barrootz]

Having been misdiagnosed with migraines for years. I know a lot about the migraine protocol. And you are absolutely correct. Migraine involves your body being able to deal with stuff up to a certain threshold and then when you cross the threshold things get bad. With that said, there are many factors that can contribute to reaching the threshold, that You probably wanna look at managing naturally before adding a pharmaceutical of any type. Meaning follow a migraine diet for a period of time and see if you get any relief. Adding in magnesium and B vitamins. staying away from MSG, alcohol, caffeine and other known triggers, including chocolate. If you haven’t already, I would follow a migraine diet strictly for a month and see if there’s any noticeable improvement. If not, then a pharmaceutical designed to raise the threshold may not be able to do anything. That’s how it was in my case. There is a book called heal your headache the 123 program by David Buchholz. I followed that for quite a while.

[Barrootz]

Also, I really believe that doctors are trying to help. They can only diagnose and treat based on what they know. So when something new pops up like Venous outflow obstruction, jugular vein compression, Eagle syndrome, or other area where they do not have familiarity they always fall back on their training which many times leads to the umbrella term of migraine. Sometimes I really think that means the doctor has no idea what it is, but wants to group you in to some thing that maps to some of your symptoms.

[Chrickychricky]

Totally agree. I always think that if you don’t fit in the box that they understand they either want to put you on an antidepressant or send you to pain management. When I spoke with that neurologist I told her that I was looking for someone who could step back and try to get a bird’s eye view of all of my symptoms and be curious and she said that medicine has moved far away from that model. We have to be our own best advocate.

[Isaiah_40_31]

@Chrickychricky

When I spoke with that neurologist I told her that I was looking for someone who could step back and try to get a bird’s eye view of all of my symptoms and be curious and she said that medicine has moved far away from that model. We have to be our own best advocate.

Excellent point of view & great self-advocacy, @Chrickychricky. Continue to stand your ground, as that will only help you choose the best doctor for you who hopefully then provides the best symptoms resolution.