Hey there,
I’ve just got done with my second appointment with Dr Costantino here in NYC. My imaging doesn’t appear to show jugular constriction. I’m curious because he implied that doesn’t make me a candidate for surgery. So all the other symptoms are not enough to qualify for surgery? Very disheartening.
He wants me to buy a ($200) ‘Q collar’ and see another doctor about a jugular stent to see if cranial outflow would help with symptoms.
I’m not sure what to do next.
He also said that arm numbness and tingling as well as a years long sore throat are not symptoms of eagle syndrome.
Interesting that he thinks sore throat not part of eagle syndrome.
I looked up the Q collar. I did see people say it helped them with headaches. It seems to be made to help athletes. Not sure how it is suppose to help with just daily living. Here is a NYT review
If you haven’t been checked for TOS you might want to investigate since you have arm numbness and tingling.
I think the Q collar is meant to be provocative for Dr. Costantino…increasing symptoms by adding additional constriction. Also, he sees mostly VES cases and not so much classic eagles.
We’ve had a few discussions about the collar, you can use the search function for more information about that…
It is strange how lots of doctors seem to have their ‘favourite’ few ES symptoms & then ignore the others! It varies between doctors, some ignore even the well-known ones! As @Chrickychricky says, he is doing more surgeries for vascular ES rather than classic ES…
It may be that if you did have IJV constriction it is positional so didn’t show up with a standard CT. Have you got copies of any of your images? If you feel that your symptoms are bad enough that you want to have surgery regardless of whether you have IJV compression, then it’s worth thinking about a consultation with another doctor from the list.
I like the idea from a previous thread of trying one on in the store. Although, I shudder at the idea of going through the symptoms. It might cause me to have another stroke
So I will pass on it but can see the value of trying it if you are on the fence about the issue of whether surgery would help.
@JugularEagle - It is designed to create IH in athletes as a way of putting extra “cushion” in their brains to help prevent concussions. It’s an interesting theory, but we’re not sure it’s a good idea.
@Chrickychricky is correct in what she said about Dr. Costantino’s reason for having his patients try it out. One of our members saved herself the $200 & just went to Big5 sporting goods & tried one on for size. It only took a few min in the store for it to cause her symptoms to ramp up so she hd the evidence Dr. Costantino wanted & was able to report it to him.
Just looking at it and thinking about it pressuring my neck ramps up my symptoms!
I think Dr Hauser talks about doing something similar with your fingers to see if it ramps up. I believe I saw a video where he did something similar and had the Ultrasound tech check him.
I am not overly fond of Dr. Costantino. Please do not rush into any stents. I also would not purchase any collar as of yet. I hope you get multiple opinions to see what is going on, even if you have to travel.
I totally agree. I had three consultations with three of the top surgeons. This is surgery. Multiple opinions should be a given. I finally have a surgery date with Hepworth in December after waiting 2 years after my diagnosis. I am not a fan of rushing into anything without knowing the full picture. I have had pretty much every test, imaging and procedure imaginable to try to get as much knowledge as possible. We typically get 3 quotes on any home improvement projects, but when it comes to surgery, I often see patients rush into scheduling surgery as they are so excited some one is actually listening and has a diagnosis. Minimum 2 if not 3 other opinions should be gotten.
Was there anything else (perhaps outside of the Q collar) that you found to be questionable with him? I have had two visits (was sort of rushed off the second one), & I have some hang-ups as well. Am about 15 months since my first surgeon consult (Dr. Lo), so I’m trying to gauge other people’s opinions/experiences with the candidates I’ve seen.
I am a big advocate of getting multiple opinions. I simply do not like the guy. His demeanor and attitude. I, personally, do not want that in a surgeon who will be with me for the long ride. If you have not gotten other opinions from the recommended specialists, I strongly urge you to do so. I found him not thorough in my case.
Seconding this regarding TOS. Just like with Eagles related stuff, make sure you see a surgeon who regularly deals with TOS patients and has done 50+ surgeries.
I can understand the demeanor part, I’ll say he definitely is different from most of the surgeons I’ve met with over the years. I will say I have become more interested in the final product (after many brain surgeries), however being agreeable & confident with the provider is also very important. I have another consult with him soon (& separately with Dr. Lo as well). If I don’t find his answers on dysautonomia/scarring/vagus nerve/etc. satisfactory, I will likely try & pursue consults with Dr. Nakaji and/or Dr. Hepworth, although I’m not entirely sure how to go about the latter given the inundation their office is facing.
I have consulted with Dr. Lo as well. I will say, getting other opinions is always good. However, Costantino took offense that I went to see Hepworth. Right then and there, I knew he was not a good fit for me. Ultimately, Hepworth was much more detailed, ran more tests and uncovered things that Costantino failed to. I think its his engineering background. I got the sense, Costantino did not like to be questioned on things. He also sent me on a wild goose chase to see his personal cardiologist and had me do an un necessary brain MRI as he suspected MS. A total waste of time and resources.
@dreamliner - Getting in contact w/ Dr. Hepworth’s office is a matter of patience & tenacity. You just keep calling or emailing until you get a response. I’ve been fortunate & have had the phone answered most of the time when I call. Others have been more successful in getting a reply to an email or emails. I’d try both if I were you bearing in mind the time difference between where you are & CO which is on mountain time.
