Consult with Dr. Costantino

General
65

@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.

3 Likes
66

[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:

2 Likes
67

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

2 Likes
68

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?

4 Likes
69

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:

2 Likes
70
71

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.

2 Likes
72

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:

3 Likes
73

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.

4 Likes
74

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…

4 Likes
75

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.

3 Likes
76

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.

3 Likes
77

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…

3 Likes
78

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.

3 Likes
79

@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.

5 Likes
80

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.

81

The float tanks (there is more than one now) also offer the same “package” as you mentioned for the i-sopod. I’ll look that one up since you mentioned it.
:blush:

82

I saw Dr. C today and asked me to get the q collar as well. I am waiting to hear from his office to schedule another appointment with Dr C & Dr Tobias together to get a game plan.

4 Likes
83

Thank you for letting me know. It’s so odd that he was unprepared for two appts then suddenly jumped on things for you. Perhaps this interest is good timing because it may give you a better idea of whom to see for surgery. I would still make an appt w/ Dr. Hackman unless he’s scheduling next week :laughing: (I’ve read it’ll be Dec or Jan) - so you have a solid surgery commitment if for some reason Dr. C doesn’t work out.

2 Likes
84

I have still not gotten the q collar. I plan to go try one on hopefully Monday morning. It took me an entire week to move, and I wanted to get that out of the way first. I am scheduled for another appointment with Dr. Costantino this Wednesday. His office called last week and asked me to make sure that I’d tried the collar before the next appointment. I want to believe that, at this juncture, Dr. Costantino should be able to tell me whether he thinks I’m a candidate for surgery or not.

2 Likes