My First Post - Evaluating Surgeons

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Hello, This is my first post here. I have really benefitted by reading others experiences. Thank you for sharing and for the folks who make all this happen. You are impacting people’s lives!

I have had two neuroradiologists tell me that my jugular veins are both severely compressed from an MRI. I had a CT and it did not show as much compression as the MRI did.

I’ve been referred to Dr. Manolidis, an ENT in the Dallas/Fort Worth area. He has done decompression surgery before, but no C1 shaving. He has done a few cases, several, not exactly sure how many. I am scheduled for Sept. 3 at the moment.

The second neuroradiologist referred me to Mayo, but hasn’t helped me get in. They have never called. I also contacted Dr. Cognetti, and his first appointment for just a consultation is March of 2027.

I have been in contact with Dr. Nakaji’s office and he wants to see an angiogram before he will do a consultation, which I will be getting on Tuesday because the local surgeon wants that too. I like Dr. Nakaji’s approach more than Dr. Manolidis in that he seems much more detailed and tailored to each patient. Dr. Manolidis seems like a very good surgeon but not as knowledgeable about this surgery in particular. For example, I asked him how he would know if there was blood flow back and he said, “You’ll know if you feel better.” Whereas Dr. Nakaji checks. Also, Dr. Manolidis sees no need to do a C1 shave, or never has in the cases he’s done. Dr. Manolidis also makes this surgery outpatient and I’m not as comfortable with that.

My angiogram is scheduled for next Tuesday and we’ll see what it says. I have this fear that it won’t show bad enough for Dr. Nakaji. I might go with Dr. Manolidis then, because I am so bad symptom-wise right now, I can’t even work. Honestly, I’m dependent on my family to do most things for me. I am a teacher and own a tutoring business and have had to cancel all my students.

Current symptoms, which can be intermittent:

  • full head / pressure
  • skull pain, very painful
  • dizziness
  • nausea
  • brain fog
  • body jerking
  • left sinus and eye pressure
  • left side numbness, including arm sometimes
  • lack of body temperature regulation
  • high blood pressure
  • digestion issues

My story: In March of this year I ended up in the ER with stroke-like symptoms, brain fog, dizziness, numbness on one side, very high blood pressure, like 205/115, a little unsteadiness. They did all the stroke work up and found nothing. I was sent home and told to take Excedrin. I found out from the CTs there that I had congenital fusion of C2/C3, which I had not known, and some stenosis from narrowing P2 distal bilateral. My symptoms came and went, but I couldn’t figure out why.

I ended up back in another teaching hospital ER with seizure-like shakes. They did another CAT scan, gave me a migraine cocktail, and sent me home. I kept getting these horrible headaches and brain fog and went back to the ER again and was told I needed psychotherapy.

My friend is a medical practitioner on the East Coast and told me to travel there so she could get me into Johns Hopkins. She tried, but they were full and overflowing, and with the imaging I had then, no one would take my case. A friend of ours saw me during a brain fog episode and how it resolved when I laid down, and thought of CSF leak. Over the past several months I’ve been searching for doctors who would see me and accept my descriptions as real. Thank God my primary care sent me to a neuroradiologist, Dr. Matthew Fiesta (if you live in the DFW area, highly recommend), who initially didn’t see anything on my imaging, but then called me back and said he wanted to take one more look, scrolled down, and saw that my jugular was severely compressed on my left side and also quite compressed on my right. He referred me to an ENT who never reached out. I pursued a CSF doctor and got some more imaging, but it hasn’t shown anything. I haven’t been able to get the best imaging yet for CSF, but I’m leaning more towards jugular compression, and I likely had a CSF leak due to high pressure that has since resolved. The interim months I had some times of feeling quite well, and then boom, it hit again, and it’s just gotten worse and worse. As you know, the wheels of medicine move slowly.

If anyone has experience with:

  • getting compression confirmed on angiogram after it showed severe on MRI but not as bad on CT
  • how much C1 involvement, not just styloid, affected your outcome
  • weighing a more experienced but less customized surgeon against a longer wait for someone more thorough
  • managing brain fog, body jerking, or temperature regulation while waiting for surgery

I would really appreciate hearing from you. Thank you all so much, this group already means a lot to me.

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@TeresaJo - Welcome to our forum. I’m glad you’ve already benefitted from the information here, but I’m sorry your symptoms are so bad. You’ve come to the right place to learn more about ES & what your next steps could be.

First off, I suggest not going to Dr. Manolidis unless you know from your imaging that C1is not involved in causing compression. There are a few forum members who’ve had resolution to IJV compression just by having a styloidectomy or two (if bilateral compression was present), however, most of our members w/ IJV compression also have C1 involvement & have needed to have the transverse process(es) of C1 shaved to get the best surgical results. The US surgeons who do this surgery require two surgeries for bilateral cases.

There are other doctors we can suggest you contact who don’t have the long wait that Dr. Cognetti does. The two who come to mind are Dr. Liu in New Jersey & Dr. Costantino in New York. Both will do video consults so you don’t have to travel to see them. I think if you’ve had a CTV (CT venogram) that is all that’s necessary for a consult w/ either doctor. What you’re getting is a catheter venogram which is much more invasive. Dr. Nakaji does give a lot of weight to angiogram results.

One of our members reported Dr. Liu doesn’t determine whether or not surgery is necessary based on the results of a catheter venogram as he recognizes that compression symptoms don’t always correlate w/ the level of compression or velocity of blood flow through the IJVs. This is a somewhat novel idea as most of the surgeons who do styloidectomies & vascular decompressions, & who are on our Doctors List, rely significantly on angio/venogram results to determine whether or not surgery is necessary.

It’s also good you didn’t end up going to Johns Hopkins as the doctors at that institution have very little knowledge/understanding of ES, & all our members who’ve gone there for help with ES have ultimately been turned away.

The symptoms you’ve mentioned are all those seen with ES. You have some symptoms (nausea, lack of body temp regulation, high BP, & digestion issues) being caused by your vagus nerve which makes sense as the vagus nerve sits against the IJV w/in the carotid sheath so when the IJV becomes compressed, so does the vagus nerve. Body jerking is a rare symptom of ES, but we’ve had several members who’ve reported it among their symptoms. The body jerking is called a dystonic storm.

You’re correct that high pressure inside the skull (intracranial hypertension - IH) caused by IJV compression can cause a CSF leak which is the body’s way of reducing the pressure inside the skull temporarily. These do heal on their own but often recur until the cause of the IH is dealth with. It’s not unusual with ES even w/ IJV compression for symptoms to come & go & come back worse.

Surgical recovery is not immediate. It will take some months after surgery for you to begin feeling significantly better, & healing is not linear i.e. good days will be followed by less good days followed by more good days, etc. Recovery requires time & much patience.

Below is the contact info for Drs. Liu & Costantino. It would be worthwhile at least getting a consult with one or both of them.

•Dr. James K. Liu, 200 S. Orange Ave, Ste. 265, Livingston NJ, Dr. James K. Liu | Top Neurosurgeon in Livingston, NJ

•Dr Peter Costantino, 4 Westchester Park Dr, 4th floor, White Plains, (914) 517-8056
http://www.nyhni.org/find-a-physician/Peter-D-Costantino-MD,FACS

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Wow! Thank you, Isaiah_40_31! This is extremely helpful. I have contacted both Dr. Liu’s and Dr. Costantino’s offices, but it’s the weekend. Hopefully I will hear back next week.

How do I know if my C1 is involved or not? The argument that Dr. Manolidis made was that if the styloid is removed the C1 won’t have something to hit against. Dr. Nakaji’s initial evaluation of the CT was that there was C1 involvement and also C2 and soft tissue involvement. I would really like a surgeon who will be very careful to give my vagus nerve room!

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I think that the best way to decide if your C1 is involved is to speak to more experienced VES surgeons, Dr Costantino and Dr Lui (as well as Dr Cognetti, Dr Hepworth and Dr Nakaji) will check that the IJV is flowing again before they close up, and also look for other compressions- sometimes there are more structures causing compression like other blood vessels, muscles, fascia or nerves. It doesn’t sound like Dr Manolidis does this, so if you don’t feel better after surgery, it’s a bit late then and you may need a revision surgery (which then means more scar tissue…)

It can be a bit of a difficult decision with which doctor to see for surgery , sometimes they don’t all agree! But it’s best to get several opinions and then decide who’s approach you feel most comfortable with, who you feel confident with etc. Dr Costantino has done a YouTube video, so you might find this helpful, he explains about other compressions too:

Dr Costantino IJV compression and surgery - Symptoms and Treatments / Doctor Information - Living with Eagle

And also Dr Aghayev in Turkey has also explained his approach which might give you a bit more info too:

A Review Of IJV Compression by Dr Aghayev - General / Research Papers - Living with Eagle

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No, thank you.

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@Jules, Thank you so much. I have watched the two videos. They are very helpful. Every day it’s one foot in front of the other, praying, learning. Time will tell. I am contacting several surgeons. Thank you again, for your time and care!

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You’re welcome, praying and this site got me through the waiting! :hugs: :folded_hands:

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Your symptoms are certainly sound like vascular compression issues and you want to ensure the surgery can get everything fixed in 1 surgery the first time instead of risking multiple surgeries. This video from a patient of Dr. Constantino who had a successful procedure shared some advice along those lines so I’m glad you are getting multiple consults.

https://www.youtube.com/watch?v=OoMIWJcKkVI

Those videos Jules shared are great! Here’s one from Dr. Liu starting ~15mins in.

https://www.youtube.com/live/nGFDx88RvnM?si=1HgSQSpn7MPIBiBD

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Barry who did the video was a member of our forum at the time he had his surgeries. His screen name is @Barrootz if you want to go back & read his story.

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Were you able to get in touch with Dr Liu? We are looking into him if he takes my daughters insurance. I would love feedback if you did. Thank you

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Here is a post from a member who’s recently had surgery done by Dr. Liu:

One very good thing we’ve learned about Dr. Liu is that he doesn’t offer surgery solely based on the extent of compression as some doctors due i.e. if they don’t think it’s bad enough, they won’t operate even if the patient has significant vascular symptoms. Dr. Liu takes the gravity of the symptoms into account along w/ the evidence of compression, regardless of how bad it appears, when deciding whether or not to offer surgery to a patient.

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Hello Veronica! I am trying to get a consultation with Dr. Liu. I just got the link today to send the imaging. The link didn’t come through the first time. I’m hoping to hear back next week about scheduling. We’ll see.

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I had my venogram on Tuesday and Dr. Fiesta said the c1 is definitely involved. Now the wait for surgeons. I am trying Dr. Nakaji, Dr. Lou, and Dr. Constantino and Dr. Fiesta has one more surgeon he may try for me.

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So sorry. That was not the file I was intending to post!

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I have two .mov files, but it won’t let me upload them that show the compression with movement. This image clearly shows compression on both sides though.

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It definitely does look like significant compression, with the C1 processes, but also a section further down at C2 level, is that a section of calcified ligament or a soft tissue compression?

Hopefully Dr Lui will help you …

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@TeresaJo - No worries about the link. Mistakes happens. I deleted it for you. :blush:

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That’s A LOT of compression, @TeresaJo!

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Yes! I am trying to get consultations with Dr. Lui, Dr. Constantino, and Dr. Nakaji. I have an appointment with Dr. Cognetti, but it’s not until next March, but they said they get cancellations sometimes. I spoke with Dr. Fiesta today and he recommended that I get a surgeon who is familiar with this. He originally referred me to an ENT, but after my last imaging he said I need to look elsewhere. He doesn’t have anyone he recommends in Dallas, but is friends with the interventionist that Dr. Nakaji uses (Matha?) so is planning to call him. I can’t say enough good about Dr. Fiesta! He is fantastic!

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