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?