Hello everyone I am new here, and I am so happy I found this forum! I recently went from a functioning RN in the emergency room. To being stuck on the couch. I have many neurological issues. And have been to many doctors over the past 3 months and many of them dismissed me and most tried to shove anti anxiety medication at me. But I finally found the right one with Dr Hauser in Fort Myers. He listened to me and did a digital motion x ray that showed elongated styloids. He then ordered a 3D ct Venogram and it showed compressing of my IJV and elongated styloid. I can’t wait to chat and learn a lot from y’all and anyway I can help y’all just ask and I will try and help as much as possible.
Welcome! I’m really glad to know you’ve found a doctor who knows about ES & especially vascular ES & has done the right tests to give you some answers. Dr. Hauser is known because of his alternative approach to ES i.e. prolotherapy. For situations such as yours, prolotherapy is really not an option as it may help reduce symptoms caused by irritated nerves, but it won’t help with your vascular symptoms - only styloid removal will do that. Dr. Anthony Bunnell has recently done successful ES surgeries for several of our members. Some of the other doctors on our list in your area have inconsistent in their willingness to treat ES patients, but we haven’t removed their names because we have members who have benefited from their medical help.
If you use the search tool (magnifying glass icon upper right) & type in Dr. Hauser’s name, there are some posts that will come up for you to read about others’ experiences with him.
hello, thank for the info, yeah I know the surgery is what is going to help me. And Dr Hauser is a super nice guy and only interested in helping people get better. He has never pushed any of his products or procedures on me. He even told me I don’t need prolotherapy and it would be a waste of my money right now.
But I am looking right now for a physician that is rehearsed on the vascular version. I am willing to drive really any distance. I am so miserable with everything going on. But do y’all have people that have the surgery with collateral veins present? And how do I upload a few photos of my ct scans on here? Sorry still learning
Nice job 3D images! I have annotated 2 of the images & am including them in this post. Not being a doctor, I can only give my layman’s (woman’s ) opinion.
I’m glad Dr. Hauser was up front with you & didn’t try to convince you prolotherapy would help. I’m sorry he doesn’t have the names of colleagues to whom he can refer his patients who need surgery. Perhaps you can suggest someone to him once you’ve found the right fit for you. I think w/ your vascular compression situation, external surgery would be the course you should choose for safety reasons.
It looks like your right IJV is compressed by the styloid process in the front & the left one is possibly compressed by both the styloid & the transverse process of your C-1 vertebra from behind. Additional to your elongated styloids, you have a section of calcified stylohyoid ligament on the right which will also need to be removed for you to get the best results from surgery.
I don’t believe we have any particular surgeons that specialize in operating on vascular ES on our list. Our most experienced ENT skull based surgeons often operate in that area for cancer & other problems so are very familiar with vascular & other soft tissues that “live” there. During external (& maybe intraoral) surgery, nerves are monitored to help protect them from danger during surgery. Vascular tissues are moved out of the way though I believe some get cut because I’ve recently learned that people who’ve had external ES surgery generally have surgical clips permanently placed in their necks on the surgical side(s).
Some very experienced surgeons on our list are Dr. Hepworth in Denver, CO (he seems to have quite a number of patients w/ vascular ES & has helped them a lot); Dr. Samji in San Jose, CA; Dr. Cognetti in Philadelphia, PA; Dr. Nuss in Baton Rouge, LA; Dr. Milligan in Phoenix, AZ, Dr. Annino in Boston, MA, & Dr. Hackman in Charlotte, NC. We know that Drs. Samji & Cognetti do phone consults for a fee after reviewing your scans & radiology report. My suggestion would be to contact a couple of doctors with good ES surgical experience & try to get an “interview” appointment to ask the questions you have about vascular ES & how they would address that surgically. Unfortunately, some of the doctors I mentioned will require that you see them in person for a consult.
Which is your more symptomatic side?
Thank you so much for the detailed response you are awesome! But my left side is definitely the more symptomatic side IE : headache, pain in throat, clicking in my throat. But most of my symptoms are neurological Dizziness, vision disturbances, fatigue, orthostatic tachycardia and swallowing difficulty. But I have pain on both sides and it radiates down my throat into my upper chest.
My brain is actually being pulled and pushed down a little due to the intracranial hypertension and my spine has lost its natural curve, I guess do to my body trying to compensate and move my head forward to keep pressure off my IJV. Which has caused spinal cord tension.
But I’m going to start today calling people about this. I’m just happy to find other people that are going through similar situations and are willing to help each other out. I plan to help out anyway I can in here, even after I get through this.
Glad I could help. I expect there are others who will have good input for you, too.
The symptoms you listed for your left side are definitely those seen w/ IJV compression from ES. Having the styloids removed has helped many of our members recover from that. I can see that you no longer have the kyphotic cervical spine curve. You can regain that to some extent w/ gentle neck exercises once you’re recovered from surgery.
It seems that the clicking sound/sensation is most often noted when there is calcification on the stylohyoid ligament. It should stop once that is removed. Some of our members also have the POTS issue & some have found it resolves to a great degree once the styloids are removed, but unfortunately, not in every case. Swallowing difficulty is a typical ES symptom. Several years before my pain started, I periodically choked on my food when eating. That was my first ES symptom.
The pain that radiates from throat to chest is likely being caused by your vagus nerve. I recommend you watch this video 2-Minute Neuroscience: Vagus Nerve (Cranial Nerve X) - YouTube as it will help explain that. I had some pretty bad ES symptoms from vagal irritation.
I hope your phone calls today are very productive. Please keep us posted. We would love to have your help and support going forward! “Many hands make light work.”
Hi calebp, & welcome to the site!
I’d like to add something to Isaiah’s info but she’s covered it all I think! I had bilateral jugular vein compression by the styloids, which caused IH symptoms, so I can sympathise with how you feel…I had the worst side removed first which really helped & I felt loads better, had a gap of a year before the 2nd side was done (UK waiting list!) & that eliminated pretty much all of the vascular symptoms. So I hope that you’re able to see an experienced doctor sson!
-So contacted Dr Hackman office I have to confirm with insurance that I’m in network with them, before they will schedule me with him. Or call the billing department and get a out of pocket estimate.
-Dr Nuss is closed right now due to the Hurricane we have down here right now.
-Contacted Dr Samji office they said I have to email them all of my images and chart. Apparently with Samji they have a different process for Eagles patients.
-Contacted Dr Anthony Bunnell office in Jacksonville and they apparently only take referrals for new patients.
-About to contact Dr Hepworth and Dr Cognetti
- Do yall have any hints on getting in quicker or any other doctors I havnt listed yet? Im willing to travel
- And do y’all know of round about prices out of pocket for removal of one styloid? If I can save money overall out of pocket I would love to do that.
Hi Nice to meet you Jules! I’m happy that you were able to get relief from this awful syndrome. Do you know how compressed you IJV’s were, and what symptoms did you have with it? How long did you have the IH? And did it ever scare you knowing you had extra pressure in your head? Im sorry to ask so many questions, im just curious and happy to find other people that understand.
Dr Hepworth is extremely experienced & thorough, but that does mean the process can take a bit longer as he does extra vascular testing- there’s been lots of discussions about him on here you can search for, he is very highly thought of…
There’s also info about what to send Dr Samji, in this discussion:
CT neck non-contrast “styloid protocol”? - General - Living with Eagle
Dr Samji does more styloidectomies than DR Cognetti, so if travelling’s not an issue he might be a better bet for speed, although further for you. There’s info about where to stay for surgery if you did decide on that in the discussions.
As for cost, Isaiah gave some info in this discussion, but hopefully others will have info too:
Cost for Canadian to travel to US for surgery? - General / Eagle Canada - Living with Eagle
Some members have asked to be put on a cancellation list & it’s been suggested to ring them regularly too if you want to get in quicker.
Re the IH, I felt off balance, drunk all the time, had dizzy spells, feeling like I was falling, weird sensations like my brain being rolled up & feeling closer to the floor/ shorter than I was! Head & ear pressure, headaches, brain fog, tiredness…
I never had the pressure measured but the worst side was nearly completely closed, the other side not as bad. Yes it was scary! I was starting to feel really quite ill, & the last couple of months before surgery seemed very long. Sleeping propped up does help quite a bit if you’re not already. I stopped exercise as that made the head pressure a lot worse.
Thank you for the info. I am down to drive anywhere at anytime to get this devils toothpick out of my neck. But I understand it takes time to get these things done. I went from exercising everyday and working in the ER to feeling drunk (without the good effect ) on the couch nauseous and figuring out which head position gives me relief. Did you have any vision/eye issues or sound sensitivity?
No vision problems, although some members have, the worry is if the head pressure compresses the optic nerve as I’m sure you know! I lost some hearing one side, but was also over sensitive to sounds. I did get to the point where I thought I’d have to give up driving because of the dizziness, are you still finding that okay?
I stopped drinking- can’t bear the feeling any more now, it reminds me too much of the IH!
I currently cant drive because of my dizziness, I am lucky to get up and walk outside some days without feeling awful. My optic sheaths are dilated and my eyes are kind of squished (not very circular).
I just got off the phone with Dr Cognetti office they have an appointment Dec 1st and Dr Hepworth can get me in October 4th, But he requires me see a NP before he see’s me. And I have to be there in person. But Idc as long as it gets me going to get this thing out. Did you ever have problems with Altitude or pressure from airplanes when you had your problems?
I don’t understand the request from Dr. Samji’s office for your “chart”. That’s kind of weird unless it’s the e-medical chart Dr. Hauser set up for the scan & venogram results. It used to be he only required a copy of the CT scan & the radiology report. You can usually get an appt w/in a couple of weeks of the time he receives the required info, & surgery is usually scheduled 2-3 weeks after that. His appt process is very efficient once the wheels get rolling. That said, two trips to CA in short order might be a bit much time/cost-wise for you.
Dr. Hepworth is certainly worthy of a visit. Since you’ve already had the venogram done, the process of getting an appointment w/ him might be quicker. I’m wondering if he/his ofc knew you were coming from out of state if he would be willing to change his appt. protocol & see you at your first appt. rather than you seeing his NP. Did you by chance ask about that? It’s always good to share the details when you’re making a heroic effort (distance-wise) to see a doctor.
Also, it would be beneficial to take a friend or family member with you both to help w/ the driving since you have vertigo & to be a second set of ears during your appt. You should confirm what the ofc policy is regarding having a second person in an appt. w/ you.
Yeah I told them I was out of state I might try and see if I can get an appointment with him a day or so after seeing the np or maybe he will just see me. But I just got back my official rad report of my Venogram and they measured my left styloid at 4.2 cm. But they only talk about my arteries and not my veins, my IJV that’s super compressed.
Im going to ask them to read the venous flow, because it was ordered as a Venogram
Pretty crazy that they only commented on your arteries in a venogram . This is why so many of our members have a hard time getting confirmation of ES & related problems. A number of our members had CT scans to look for ES, & the radiologists either declined to comment on the styloids & s-h ligaments, or they mis-measured them & mis-diagnosed no to ES. It takes perseverance & persistence to get what you need sometimes. Keep at it until you are satisfied that the report is complete. Having that in hand will expedite your appt. w/ Dr. Hepworth.
They did mention the length and the calcification on the styloid closer to my hyoid in the report. They just failed to say something about my IJV that clearly being compressed.