I’m sorry you didn’t get helped at the ER today. Maybe try some drama when you go in on Thurs. Hold your neck & tell them you can’t swallow because your throat is so sore & it feels like a bone is stuck in there. That is a true ES symptom & might get you seen sooner.
It is still worthwhile calling Dr. Cognetti to schedule a consult. I believe his office keeps a cancellation list which you can ask to be added to. Getting to fill an appointment that someone else cancels on short notice can get your appointment moved up to a sooner date.
@Val7426’s answer: [quote=“Val7426, post:46, topic:17250”]
He’s $8000 USD per side. It’s another ~12,000k if you need a vein decompression. I’ve heard to budget $20-25k per side. Someone from this site is Canadian and just had surgery with him, but I can’t remember who that is.
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The CA member who just had surgery w/ Dr. Cognetti is @Carrie68.
I don’t think your Canadian medical insurance will cover US surgeries without you doing a huge battle w/ the Canadian health system. I know some of our CA members have tried to get reimbursements but I think all requests have in been in process for quite some time without resolution. Maybe one of our other Canadian members who sees this can give you an answer.
Hello!!
The recent cost of Cognetti is $8500 for styloid
Dr Heller (neurosurgeon) is $12,500 for C1 shave
I am still battling with billing and trying to get a complete breakdown seems very difficult!!
Hi Val, the Dr. from Turkey is asking for my photo ID to send me an invoice for pre-authorization. Manitiba Blue Cross said they would need it to determine whether I am eligible for any coverage or not.
Is it safe to send an ID photo to that clinic ? Just wondering. Thank you.
It’s doubtful Blue Cross will cover anything without provincial consent for out of province, or out of country surgery. You can try. I am in touch with Sunlife (my employer insurance) and they won’t cover any of it.
Dr. Kamran is a trusted doctor. I know of several people from this forum who had surgery with him already. I had to send JC’s passport photo too. It’s for the clinic and the hospital intake form. When you book Airbnb you need to send ID too. Everywhere you go in Turkey they will check your passport.
Hello.
Yours is my story is well, all except I have not had surgery, but have had a consult with Dr. Hackman. Says I’m a candidate for surgery. The pain right now in my neck is high as I just had a “thump” of my Vagus nerve that sent tremors down my chest into my digestive system. Now my neck is killing me. Unfortunately my C1 and C2 are out and pressing on the nerves and veins on the left side. Anyway I look forward to reading more of the posts here. I’m supposed to get an MR angiogram to find out just how back the veinal compression is in the neck. It’ll be another two days before I can see my AO who will adjust my neck and get me some relief. Take care.
@MisterFrodo - Thank you for the update. I’m really sorry you’re in pain at the moment but hope your AO chiropractor helps. I’m glad Dr. Hackman confirmed you need surgery & even more so that you’re going to have an angio/venogram to check out your IJV compression to see how bad it is. Good to know that before jumping into surgery.
Jules -
Do we have a recommendation for the most experiences Vagal Nerve ES specialist. I have already consulted a very experienced ES specialist but now want to get a second opinion specifically on my ES related vagal nerve involvement. I am in Toronto Canada but will travel anywhere in the US for such a consultation. Thanks
@ESnerves2025 & @jobby99 - You posted this question in a thread started by @GrnyAny who had severe vagus nerve compression. Dr. Trevor Hackman in North Carolina did her surgery which has been very successful. If you scroll back to the top of this discussion thread, you can read her story. Based on her surgical results, I would recommend Dr. Hackman if you have concerns about vagal compression or damage.
•Dr. Trevor Hackman, UNC Ear, Nose and Throat Oncology Clinic – in the N.C. Cancer Hospital, 101 Manning Drive, Chapel Hill, NC 27514, (984) 974-6484
Unfortunately we don’t don’t know of anyone specifically treating vagus nerve symptoms, as @Isaiah_40_31 says Dr Hackman did the surgery mentioned, & several of our Canadian members have travelled for surgery with him…
I believe that Dr Jian in CA , a Neuro, has been spoken highly of by members- you can search in the discussions for what people have said, here’s his details:
Dr. Brian Jian (Neurosurgeon) & Dr. Balough (Neurotologist) & Dr. Ji (Neurosurgeon/Neurointerventional Radiologist) - KAISER SACRAMENTO, 6600 Bruceville Rd, Sacramento, CA, 916-688-2000
I’m sorry to say that Kaiser doctors & hospitals are HMO (Health Maintenance Organizations) & unlike other doctors & hospitals not affiliated w/ Kaiser, will only see patients who specifically have Kaiser Insurance. It’s not a flexible system like it is for doctors & hospitals outside of the Kaiser system.
Thanks as I have already seen a top notch Otolaryngologist, I do now think I need a neurologist. To speed things up I am aiming to do a Fiesta MRI of the cranial nerves privately in Canada. There is an outfit in Toronto that says they can do it. I will need to get my Family Doctor to sign-off on this but he knows nothing about ES. Can you or any member provide clarity on what exactly the Fiesta MRI should scan besides saying the “cranial nerves”. What are the more precise specifications I should ask for in ordering the Fiesta MRI for my ES.
@ESnerves2025 - The cranial nerves most often affected by ES are the facial, trigeminal, glossopharyngeal, vagus, spinal accessory, hypoglossal, vestubulocochlear, & occipital. You would want to choose the nerves which are most likely causing the symptoms that are most bothersome.
There is a lot of info on our forum about the symptoms caused by the first 6 nerves in the list which you can search for, or you can Google the nerves, or watch the Two Minute Neuroscience videos on YouTube (1 video for each nerve).
Thank you so so much for sharing your story! I currently have many symptoms in common with you. I have suspected vagal nerve involvement and felt nuts until now. You’ve helped me so much! My left styloid is around 5cm and right 4.5. Left is thicker than a pencil and going through my tonsil cavity into my throat causing me to need a feeding tube, right styloid is thin but still causing pain. I have VES with compression on both sides. Surgery is less than a month away with Dr Peter Najaki and I am so excited for a possibility of relief. I have been chair/bed/housebound for over a year and I am 37. I had a whiplash/impact injury in 2023.
Thank you from the bottom of my heart again for sharing your story. I plan to share mine as soon as I can.
