Consult with Dr. Costantino

General
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I’ve been sharing updates on social media for my family and friends. One of my friends, a former classmate from grad school, sent me a text with some surprising information that I am attaching for anyone interested. I had no idea that, prior to working towards a PhD in theology, he worked in the medical field at Mount Sinai Hospital.

Also, I had a cleaning at the dental clinic last week that is staffed by residents. I mentioned in my original post that it was a dentist, Dr. Ali, who first diagnosed me with Eagle syndrome. He has since moved on from the clinic. This time I was seen by Dr. Chen, who had never heard of ES and thought my case was/is “so cool” that he asked if he could present it to his fellow residents.

I wasn’t upset and didn’t take offense, because he used the word “cool” to describe what to us is utter misery. I understood what he meant and was actually glad that he wants to present my case rather than something totally mundane like gingivitis. Hopefully that means more people in the medical community, dentists in particular, will learn about ES and be able to recognize it when they examine a panoramic x-ray. Because when you stop and think about it, dentists are truly on the frontline where the identification of ES is concerned!

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Great that you have an appt with Dr C, & not too long to wait! What a lovely idea doing the zoom group at your Church! And fantastic that your new dentist wants to inform others about ES, not very tactful though :joy:

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Unfortunately I started with an advocate, and think it made things worse. They have been close to useless. Worst case once open enrollment starts I will look into switching companies.

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He was not tactful at all, @Jules. You should’ve seen the look on his face when I showed him the report from the CT scans. He was absolutely giddy. But I can forgive his youthful excitement if he does use my case to educate his peers.

The support group was actually the idea of my dear friend and mentor, Shawnee. She taught theology and started the Zoom group for women of faith across several US states, all of us living with some chronic illness or another. As the only living member of the original group, I introduced it to my parish in her honor. It’s been a wonderful resource, just like this forum.

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@lilwider I understand how frustrating it is to discover that someone, who was meant to help, has instead made things worse. I hope to speak with the advocacy office on Tuesday and will determine then if I move forward with their assistance or simply continue to self-advocate.

As far as switching insurance, I’m not sure if that will help in the long run. But I can certainly appreciate not wanting to stay with a company that has had a hand in making life miserable. I’ll also be looking to switch when the time comes to renew, not because I expect better results elsewhere, but because I refuse to give the current insurance company any more of my precious time, energy, and money.

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[quote=“CoHDa, post:64, topic:13699”]
He was not tactful at all, @Jules. You should’ve seen the look on his face when I showed him the report from the CT scans. He was absolutely giddy.

@CoHDa - When I saw the ENT who guessed I had ES, he noted it is rare then sent me off for a CT scan. When I returned a week later for the results, he was as you described Dr. Chen after he learned about ES from you. I had bilateral ES & he was beside himself w/ excitement. He was in his 60s & had seen it before & had even done several ES surgeries. I was a bit shocked by the diagnosis but entertained that seeing a case of bilateral ES made him so happy. :joy:

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Fingers crossed we can get good outcomes. Wishing the best for you

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Hello Forum Friends,

It’s been a minute since I’ve been here. I’m in the process of moving into a new home that needs a lot of work, so I’ve been focused on that. I also thought I’d wait to post anything else until after my follow-up appointment today with Dr. Costantino. Despite the fact that the email from his NP stated we’d be talking about treatment (meaning let’s schedule surgery), we didn’t. And unfortunately, he didn’t have the report from my CT imaging. However, we did review the imaging that confirmed not only significant compression of my left jugular, but surprisingly my right jugular as well. It also appears that the left styloid is pretty thick, the right no so much. So there’s that.

Here’s what I wasn’t expecting (aside from not scheduling surgery)…being asked to purchase a Q Collar. I was told that, although the collar was designed to help reduce the incidence of brain injury in athletes, Dr. Costantino is using the collar to help confirm a diagnosis of venous outflow obstruction. If the collar causes pain, that is confirmation. If not, then there is likely another cause and surgery therefore is not likely to resolve the symptoms. The collar is FDA approved, but that does not cover the cost of $200. But I suppose that is far less costly than surgery that doesn’t provide relief. Okay, so I’ll try on the magic sorting collar and hope for Gryffindor.

I told Dr. Costantino I’d ask my brother if he has a Q Collar and borrow his (retired pro athlete) or one from friends who were on the football team at Notre Dame. I was so caught off guard when he asked what position my brother played that all I could say was defensive line. No matter, because then Dr. Costantino said he went to Notre Dame as did I, so we got to talking about that. Eventually, he said I would have to be measured for a Q Collar, which makes sense given that my 6’3" 280 lbs brother’s neck is definitely not the same size as mine.

Dr. Costantino said we’d be in touch in a week’s time. In the meantime, he’ll get the imaging report, and I’ll try on a Q Collar. Before the appointment concluded, I asked him when he was going to begin teaching other doctors around the country not only how to perform surgery to treat V/ES, but how to recognize and diagnose it. He said he has about another year before he gets to that point. He wants to collect more data going forward about his surgical technique and its efficacy. As far as he knows, he is the only surgeon who, in addition to cutting back the styloid, also removes the digastric muscle, the IJV fascia, and immobilizes the spinal accessory nerve. In addition, he said too many doctors focus on styloid length as being the culprit where compression is an issue when in fact a styloid doesn’t have to be long at all for a patient to be symptomatic. Dr. Costantino went on to say, “Maybe I should do a podcast,” to dispel some of the misconceptions that doctors with little or no experience with V/ES have about the disease. I told him he should, but again he’d prefer to first gather more data about his technique.

Before I conclude this long post, I’d like to ask has anyone else heard of the Q Collar or purchased one for the above mentioned reason?

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Frustrating that Dr C didn’t have the imaging report, but it sounds as if enough was seen on the images…
There has been a discussion on this which you might find interesting, here’s a link:
Q-Collar jugular compression device to protect from brain injuries in sports :exploding_head: - General - Living with Eagle
It seems as though the science is debatable with these collars?
Well done for asking if Dr C will do any teaching! His surgical technique does sound quite different to others’, so good that he’s being cautious and wanting to gather more data, but a shame he didn’t agree to surgery straight away!
Take it easy doing the work on your new home :hugs:

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In theory the Q collar seems like a great idea to save athletes who play aggressive sports from getting serious neck injuries, but in practice, I’m a bit skeptical. I totally agree w/ you, @CoHDa, nothing ventured nothing gained. If the Q collar test (you made me laugh w/ your comment about it being a “sorting Q collar” - I’d go for Griffindor, too! :partying_face:) proves to be accurate, then it may have a future for our VES members as they decide how to manage symptoms.

I will say that I disagree that if the Q collar doesn’t cause pain, surgery won’t help you. Elongated or even normal length styloids (as Dr. Costantino so astutely noted) can cause ES symptoms which won’t subside until the styloids are removed. Vascular compression combined w/ elongated styloids also won’t disappear on its own.

As far as I know, the only mention of the Q collar so far on our forum has been in the link @Jules sent to you.

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I’m gonna agree with @Isaiah_40_31 about hesitation with using Q collar for diagnosis. Something seems off with that. If you already have compression then how would we even know how much more the collar is compressing?

Does the collar cause the same amount of compression for everyone? What if one person’s IJVs, styloid and it’s relationship to your muscles is structured slightly differently than someone else, how does that work?

This would only really make sense in a healthy population where they have optimal flow and then we can cause an exact amount of pressure and measure the results.

Using that as a basis for whether your IJVS is responsible for your symptoms seems like guesswork.

Not questioning his skills or knowledge as a Dr, but I would push back a little on using this device to decide your medical status.

You could be sent to space and see if the zero gravity induced IIH causes pain, but I’d imagine that’s hard to arrange :slight_smile:

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Funny enough, but I was thinking whether 0g would help me figure out what the “neutral” neck curvature is when all the muscles are relaxed. One of the options is 0g plane (price tag of regular session is roughly 10k, with a few sessions of different levels of gravity, e.g. simulating Moon’s, Mars’ gravity etc.) so a bit above the budget). But the other option was… Some people who had a chance to jump into the “dead-sea” reported surrealistic experience, telling they felt as if they were in 0g. Maybe this “afloat” sensation sends some fake signal to the brain inducing body’s muscular response similar to the one people experience in real 0g? It would be interesting to learn if anyone felt “more clarity in their heads” while floating atop of the hypersalty pond of water.

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I actually noticed that when I was in a pool relaxing my jaw pain would get much better and I just assumed it was because my muscular skeletor system was finally able to relax and perhaps “fall” into good posture. If only we can do an CT scan under water…

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Have you ever tried lying flat on a large bean bag with a soft (flannel) cover? I used to have one about seven years ago and it felt akin to being in a tub.

While perhaps nobody will put a CT doughnut around the bean bag, some muscular stretches/massage/trigger point release might be easier to perform while on the bean bag than in the water.

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I have not tried a beanbag but next time I see one I will. Right now, Botox and gabapentin seem to be reducing my pain so I’m happy with that.

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I am blown away by all the amazing replies!

First of all, thank you, @Jules, for the link letting me know that the Q Collar is on the forum’s radar. Dr. Costantino did refer me to the Q30 website where I read about the development of the product to help mitigate the potential for brain injury. As a brain injury survivor and member of the Brain Injury Association of America, I greatly appreciate the work of the team behind the Q Collar and any team diligently working to create equipment that has the potential to prevent or mitigate injury to the brain. The collars might not prevent concussions, and helmets don’t either, but I wouldn’t recommend not wearing one to any athlete about to run out onto the field of play.

I can’t claim to understand how Dr. Costantino is using the collar as a diagnostic tool and more specifically as a tool to help him predict surgical outcomes for VES patients, but I appreciate what he is trying to do and why. I presume use of the collar will be or already is part of the data set that he is collecting. Also, I did forget to mention that he intends to reach out directly to the Q Collar team to inform them about how he is using the collar and presumably to establish some kind of collaboration.

Moving beyond the question of whether the collar accomplishes its intended goal, I discovered that I can walk into a local sporting goods shop and simply try the darn thing on without opening my wallet.
After I’ve gotten all of my belongings moved into my new place on Monday, I’ll take a short ride to the shop to try on the collar. Hopefully, it won’t take longer than 5 or 10 minutes of wear while I browse around to determine if the thing exacerbates my symptoms or not.

On another note, it’s undeniably clear to Dr. Costantino that I do have severe bilateral compression of the IJVs. That’s not in dispute at all. When looking at the CT imaging together, we could see the left IJV was almost completely flattened between the styloid and transverse process, because the styloid is so thick. The same could be seen on the right side, though not to the same degree, because the styloid is not quite as thick.

But in addition to VES, I have other health conditions that present their own problems, like many other members of this forum. Folks may or may not recall that I’ve previously mentioned POTS/IST as well as the brain injury. And so, as I’ve had more time to think about my recent conversation with Dr. Costantino, I understand, even more so now, the need to be absolutely certain about which symptoms are attributed to which disorder and going forward what treatment(s) will provide me with the best outcome.

Along with the Q Collar, I’ve been asked to have posturography testing to better assess what’s going on with my central nervous system and why my universe leans to the left. He’s not 100% certain that is a function of V/ES, because, after all, a person can have more than one diagnosis at a time, which I do. In short, Dr. Costantino doesn’t want to schedule surgery without first being aware of all the moving parts. At least, I presume that’s why he didn’t move on Thursday to schedule surgery. I can’t be mad at him for that, and if that means trying on a Q Collar, then why not? But if all the boxes are checked and our next conversation isn’t about surgery, I’m going to be pretty upset.

I was hoping maybe someone on the forum had already tried on a collar and could provide some insight, but I guess I’ll be the guinea pig. @vdm and @Elijah can report back regarding the benefits of 0g and swimming pools. Personally, I fully endorse the benefits of aqua therapy and floating in water, which I will resume next week after I get through this move. And on that note, I’ve got to sign off.

Thanks again to all for the truly thoughtful, informed feedback! You’ve really helped me to stay positive and keep moving forward…

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As I said earlier - nothing ventured, nothing gained. You make a good point @CoHDa - doctors have to start somewhere to gain knowledge about what works & what doesn’t over the course of their medical practices. Being a guinea pig for a non-invasive therapy such as the Q collar provides is certainly an easy task, & if your results add an important data point to Dr. C’s research then all the better.

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@elijah & @vdm - I love the conversation about floating & the possible positive effects of temporary 0 G on the human body. I think we don’t consider the toll gravity takes on us (in spite of its benefits) over the years of our lives.

A float tank opened up in our area several years ago & a couple people I know went in for a few sessions & said it made their bodies feel amazing. It’s a bit pricy/session in my area so I never investigated the therapy for myself.

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I just googled about it, so one of the brands is i-sopod. In their marketing material they are very promising, as the goal is to achieve full sensory deprivation - total darkness, silence and body-warm Epsom salt tub “where it’s impossible to tell where the skin ends and water begins”.

Might do the trick.