I visited this ENT and he ordered this CT with contrast. I was initially hopeful because he listened to my concerns and ordered the correct imaging. When it came time to review the scan with him, he made no mention of IJV compression which is pretty clear on the scans. he said it could be “eagles syndrome” and yes he did air quotes with his fingers while he said it condescendingly. When I asked him about it, he said he does not see how its “relevant” and even if it was happening, there was “0 that can be done” and “no surgeon in the world would remove the styloid close to the skull base” then went on to show me that my CAROTIDS were clear and not a problem. He then laughed me out of his office. Feeling very embarrassed I just went along with his referral of the surgeon in his practice, who I’m 99% sure will give me the same shpeel, on Monday.
I want to see Dr. Patel in Portland, but I called and his practice is Referral Only. How can I go about getting a referral? do I call and cancel my current appt and ask for the referral outright? Do i go to the appointment and ask for the referral there? I’ve already spent hundreds of dollars, I don’t want to spend more just to get dismissed.
Did your report measure the styloids? I downloaded Radiant and created images. I fought back because mine clearly showed a problem . My report did measure styloids . Radiologist did catch the problem but ENT surgeon tried to claim I dont have it and wouldnt see me. That was the final straw for me with the sheer incompetence.
My approach was to find the closest surgeon who deals with vascular Eagles and then I asked the local ENT office to refer me. Then I will move to try to get an insurance exemption and it gets it on record. You can tell him there are specialists who do operate on this and you want a second opinion.
If you download Radiant, create the images, you can then send that to your ENT and ask for a referral to the Doctor you want to see.
I also used the word malpractice in getting to the bottom of why the neuroradiologist said i have a problem…and i meet the definition…etc. while the idiot ENT was putting a note in my file that hindered my treatment.
I am not messing around anymore with the gaslighting.
While you wait for the experts to chime in here you could ask for a reread in order to officially measure and address the apparent trapped jugular.
If your doctor is part of a hospital group they may have a patient advocate to help navigate the issue.
The way you were treated is infuriating. DONT BE EMBARASSED. Your ENT should be ashamed of the way he treated you. In my humble opinion you stand a good chance of wasting your money with the monday appointment. If the Doctor you want to see does handle this type of surgery I would just move to get the ENT to refer you based on imaging. It takes a very specialist surgeon to handle this. Your ENT doesnt even know they exist.
As a side note, i had another visit with the PT who teaches. We tried the towel thing under neck in various positions and my body rebelled. I had to get up and I was gagging after swinging up. Felt sort of like being strangled.
We are going to work on other issues to see if it can provide relief. Traction of my neck with his hands did help instantly as did pushing down on my shoulders while laying on the table. I am doing door frame exercises to perhaps help TOS symptoms. I am also going to try traction on their table.
Its unbelievable how many people with valid concerns are turn away when theres plain evidence on their side… Im so glad we have this forum!
Related to the traction devices, This was not reccomended to me by a PT, but I’ve found this one to be helpful, BUT BE AWARE sometimes to get that extra bit of traction, it can definetly get too tight, I WOULD NOT use it unless I had someone else in the room watching me, due to strangling risk, and it is also potentially dangerous due to the amount of traction it does provide, maybe something to bring up with your PT and see what they say
That thing gives me the heebie jeebies just looking at it. I can feel it strangling me
I laughed at the girl trying to look sexy with the off the shoulder shirt holding her drinking cup. So relaxed. Meanwhile, i know i am going to look like a deer in the headlight while trying to figure out how not to smash my jugulars even more.
He did make the comment that whenever you try a medical device like a cervical collar like you see for whiplash dont use it every day if using it for a long period. Your muscles will atrophy. So use it on a really bad day but dont use it the next day. I am going to get one to see if it will help but probably wont be able to stand it.
Hi Aluminum, sorry to hear about that, plenty of Drs just don’t know. The better ES surgeons do try to remove at base of skull or as close as possible. Many Drs will be referral only, so you have to have a Dr willing to do that, but it can be anyone, perhaps your primary. It wouldn’t hurt to ask the dismissive ENT for one, but follow through and make sure it is sent in a timely manner. Its up to you if you cancel the Monday appt, but it doesn’t seem like it would be beneficial.
I will say, if the imaging is pretty clear about IJV compression and your symptoms line up with it then Dr. Patel is probably not the Dr to see. There are about 6-8 Drs nationwide that can remove styloids, decompress the IVJ, and shave the C1 if needed. So, you could go for an opinion, but you might also reach out to like Dr. Constantino in NY that does telehealth and is a VES doctor. Or Nakaji is in AZ, or Damrose in CA; but I know Nakaji is in person consult. Hepworth in CO is probably the best, but his waitlist reflects that
I would cancel the appointment on Monday, @aluminum and either ask your PCP or the ENT who gave you the referral to Monday’s doctor for a referral specifically to Dr. Patel. Unfortunately, I believe Dr. Patel does intraoral styloidectomies & since you have IJV compression, that approach will not give you relief from your VES symptoms. A better doctor for you to see would be Dr. Nakaji in Phoenix. I recognize that’s a bit further for you to travel but he specifically deals with IJV compression associated w/ ES. I think he may also require a referral. @Chrickychricky has had both her surgeries with him & has posted a lot of good information. You can search her posts to learn more.
Thank you both for the information, I think it would be awesome to see Dr. Nakaji, but the distance does throw a wrench in the mix. Luckily round-trip tickets to PHX are under $200! I will continue looking into this to see if Dr. Nakaji will do a video consult. and hope my ENT is willing and able to refer out of state.
Thanks again! this forum is always so spot on and helpful
@aluminum Dr. Nakaji does not do video consults. You can find out from the office exactly what testing they are requiring these days prior to the first appointment. For me it was the IR angiogram with manometry showing pressure gradients across the stenosis. His office is only about 15 mins from the airport. I referred myself but that requirement may have changed, just call and check. Best of luck to you.
Thank you for all the info it has been a great help.
Going to put this here in case anyone else stumbles upon this thread.
Called Dr. Nakajis office today(11/19/24) and the following imaging is required:
MRV brain thru C2 in neck flexion
CTV brain thru C2 in neck flexion
Dynamic cerebral angiogram/venogram w/ rotation and neck flexion
He requires ALL three or just one of the three? What about the Manometry that one of the posters had to get or is that included in one of those procedures?
I wonder if there is some kind of exception for those that might be at risk for a stroke for some of them.
Those are all pretty serious tests & all require contrast which will limit those who are allergic or sensitive to contrast from seeing Dr. Nakaji. I wonder if he makes exceptions? (Don’t expect you to answer @aluminum - just thinking outloud).
I asked the PT about traction and he pulled up devices on Amazon. We talked about one like this so I am going to give it a try.
I asked for trigger point therapy and watched what happened to my body as he did it. There were very tight areas that sent weird sensations up my neck into my head. He gave me a technical reason why which I dont remember.
It is possible that dealing with this issue may lessen the severity of my overall symptoms. So I am going to buy the Theracane and give it a try. He also mentioned Body Back.
There is one move he did that I think is going to be a NO from me. I was laying down and he was pushing down on my shoulder/clavicle area into the table. I felt the globus sensation get worse and felt like my throat was getting crushed. While I do think that move did help below the neck it was too disturbing above the neck. I am still feeling weirded out in my throat area several hours later.
