Your ICAs will naturally be decompressed once the pressure of the styloids are off of them. The more difficult part of your surgery is the IJV decompression because that problem is so close to the skull base where several of your cranial nerves exit your skull. That’s why it’s vital to see a surgeon who’s very experienced with surgery doing styloidectomies alongside IJV decompressions. Dr. Cognetti in Philadelphia & Dr. Hepworth in Denver are the two closest to you. Dr. Nakaji in Scottsdale, AZ, & Dr. Costantino in White Plains, NY, are a bit further away.
•Dr David Cognetti, Thomas Jefferson University Hospital, Philadelphia 215- 955- 6760 (Has done many successful surgeries on members). Only removes ligaments if calcified. Works with Dr Heller now to do C1 shaves https://hospitals.jefferson.edu/find-a-doctor/c/cognetti-david-m.html Does do online or phone consults.
•Dr. Peter Nakaji, https://www.scottsdaleclinic.com
Scottsdale Neurosurgery Specialists - 602-313-7772
Works w/ vascular ES, has also done a research paper about shaving C1 process as well as styloidectomy. Will do phone consults for out of state patients.
I know it’s not easy for anyone to travel, but as you do have IJV compression it’s important to get the styloids cut back as much as possible, so that’s something you should check if you see a doctor close to you.
Thank you; I’ll definitely look further into this. Im hoping my family doctor will take this issue seriously now and will refer me somewhere. If not, I might have to take matters into my own hands. So far, my sleep has been a major issue, along with visual issues, dizziness and feeling detached almost. Ive got 2 to 3 days left on site at the hospital and then at least I can work remote:) Thank you for all the information.
Finally made it through my 2 weeks at the hospital, barely! It was definitely rough, but I did it. I noticed tonight Im hearing my heart beat in that right ear and a whooshing noise, same side as the elongated styloid. I really want to tell my boss/other transcriptionists whats going on, but I dont want them to believe Im incapable of performing my job either. Im not feeling too great tonight and just wish my neck was better already Thankful for this forum.
@Lynny43 - Just being able to work from home may help reduce your symptoms as you won’t have the stress of a commute nor the fear of being “watched” by your boss & other employees. Hopefully you’re able to take breaks as needed while working from home.
Moving your computer screen up to eye level & using your cell phone at eye level are two things that can help reduce ES symptoms to some degree. A few members have tried a soft neck collar (Amazon sells a variety) to both provide support & a reminder to keep the head out of positions that flare symptoms (if there are any for you). You can also ice your neck when working from home - 15 min. on & 2 hrs off. Use a thin towel between ice pack & skin to prevent ice burns.
I hope things settle down when you can work from home…I can’t see in the previous posts if we’ve suggested sleeping propped up a bit? That can help if there’s vascular compression, the pulsatile tinnitus is common with IJV compression. Sending you a hug & hoping you feel better over the weekend
Is it the IJV compression that causes the visual issues? I have an appointment with my pcp this coming Thursday and I’m taking a lot of the information that I got off this site, as well as my previous scans with me. My chiropractor told me I had a large pannus also that could be impeding my brainstem as well. Ugh. My head has just been feeling like it’s in a vice lately and am not sleeping at all. I may try sleeping upright tonight and see if that helps. Thank you guys
Yes, IJV compression causes the visual disturbances usually due to eye pressure. An eye pressure exam could be helpful. Sometimes if the styloid or hyoid bone is irritating a carotid artery it can irritate the sympathetic plexus and result in eye issues, particularly horners syndrome.
And I would personally be weary about seeing a chiro - particularly when it comes to upper neck manipulations. Neck adjustments can temporarily loosen cervical ligaments and result in worsening compression of IJVs between C1 and styloid. My first hospital visit last year was after chiro for this reason.
Same! I used to go to chiropractors who would manually manipulate my neck in the past, maybe why I am like I am today, but I have been seeing an atlas orthogonal practitioner who does not perform manual manipulations. I get about 2 days of relief going to her, but Im not planning on going back anytime soon.
I ended up talking to my pcp today. He has agreed to send me to a vascular surgeon in Michigan, Dr. Bays. Has anyone ever heard of him and would a vascular surgeon help with elongated styloids, as I am having vascular issues from this issue. TIA
I’ve not heard of him, but if he’s experienced with head & neck vascular surgery, then hopefully he’ll be helpful- some members have had successful surgeries with head & neck surgeons, as often they’re used to removing the styloids to access the area better. Have you got an appointment yet, will it be a long wait?
That’s good to know! No, I don’t have an appointment set up yet. In fact, I guess the vascular surgeon has to agree to accept a consultation with me first based on the prior images I had done about 2 to 3 years ago, so hopefully he’ll see something. I know the only image that showed my elongated styloid was that one that was 3D rendered by Jeffrey Middleton from Florida, but maybe the radiologist missed something on my CT scan too from 2022, hopefully! I know neurologists even around here are booking out for many months in advanced, upwards of 6 months, which is sad. I’m not sure about this vascular surgeon though.
I hope the vascular surgeon recognizes the gravity of your need for a styloidectomy since your styloid is affecting your carotid arter(ies) on that side. Getting the pressure off that artery should go far toward stopping the TIAs. It is critical for the styloid to be removed as close to the skull base as possible so that’s another topic to discuss if he says he is willing to operate.
Here’s a post about surgery that @Jules wrote that has a lot of helpful information including questions to ask a doctor you may be considering to do your surgery:
Thank you for the advice on what to potentially tell this surgeon
Did you notice extreme fatigue, blood pressure fluctuations, GI disturbances prior to having your styloids removed? I just seem to have so many random symptoms and before even knowing about my styloid, my doctor has me taking a steroid to keep my blood pressure up, progesterone to help with sleep, etc..I just wonder if the compression of my IJV and/or vagus nerve is causing all these symptoms now.
Thankful for this forum.
Thank you 