Hi all, I had CTA imaging done and it looks like my styloids are compressing my jugular veins and causing the problems and I was advised by that doctor to get them removed. I was able to get a surgical appointment with Dr. Hepworth but not until May 1 (which seems like so far away), and our consult would be the day before. I have a virtual consult with Dr. Constantino this week and one with Dr. Patsilides in Feb. I sent my stuff to Dr. Fargen, but I haven’t heard back from his office yet. I’m really just trying to make sure I am picking the right doctor to hopefully solve this problem. I am hoping to get more information to make sure surgery is definitely needed and if so have the most chance of success. Can anyone offer their recommendation? If Dr. Constantino can see me much quicker would it be better to go with him or should I try to tough it out and wait for Hepworth?
Both Dr. Hepworth & Dr. Costantino are great choices for styloidectomy plus IJV decompression, however, their techniques are different. Dr. Hepworth actually moves the IJV away from C-1 to give it more space to expand once the styloid is out of the way whereas Dr. Costantino works together w/ a neurosurgeon who will shave the transverse process of C-1 after styloidectomy (all in the same surgery) to make more space for the IJV. If you can get an earlier surgery w/ Dr. Costantino, he will most likely do a good job for you.
I hate to say anything negative about the good doctors on our list, but we have several members who’ve had problems w/ Dr. Costantino’s office i.e. they’ve shown up for confirmed appts. & been told he’s out of the office, scans have been read incorrectly, administrative support has been poor. His office is in transition w/ the staffing so hopefully some of these problems will be ironed out over the next month or two. My recommendation is that if you have to travel some distance to see him, call the day before & day of your appointment to confirm that it’s still on so you aren’t disappointed when you get there, & he’s a no show.
Did you ask to be put on a cancellation list when you made your appt. w/ Dr. Hepworth? If not, call back & get your name added. Several of our members have had their appts moved up considerably that way.
Here is my take as I have consulted with all 3. Don’t rush into anything and wait until you have consulted with everyone. Hepworth has done C1 shaves and is willing to do mine. Hepworth also does more testing and picked up on things that Costantino did not. Costantino is going through turnover problems and he just came back himself from surgery. Hepworths office really is no better with communication. Patsalides is doing my venogram ordered by Hepworth. I wouldn’t do any surgery without having that done. I could have had surgery a year ago but am waiting to get more answers and having the right surgeon do it. I recommend getting at least three opinions if possible of the top specialists. Don’t rush into anything. My surgery is scheduled with Hepworth but may be postponed based on what the venogram shows.
Now see I’ve had the opposite happen to me, I can never get a hold of anyone from Hepworths staff, having a hard time confirming things and still don’t know if they take my insurance, whilst Constantine’s office in White Plains seems to be on the ball got all my info, everything scheduled and checked my insurance plus the waiting time is considerably less, and he will do the consultation on line saves me a ton of money in traveling fees, my question is will a C1 shave be depremental if I have possible neck instability? I am hypermobile in some joints so this would be something I need to consider
@Millymay - At the time I wrote my last post (12/23) things were in an upheaval in Dr. Costantino’s ofc & some of our members had very frustrating experiences because of that. I believe that his office staffing issues are resolved & the ofc is working like a “well oiled machine” machine again. Unfortunately, Dr. Hepworth’s ofc is not. Even though his staffing issues have been resolved, it seems (based on our members’ comments) that there is still inconsistent communication, it’s hard to get through to someone, & lab reports/scan results, etc., seem to get lost there even though the labs & other doctors’ offices confirm they were sent, sometimes more than once. Caveat, we do have members who’ve had no problems with Dr. Hepworth’s ofc other than the long waits to see him. I’m not sure why the patient experience w/ Dr. Hepworth’s ofc has been so bad, but I fully acknowledge that when a patient is feeling terrible, difficulty in communication, last minute appt. cancellations, missing labs & documents are not acceptable.
It has also recently been mentioned here that Dr. Hepworth is now doing C-1 shaving to help make more space for a crowded IJV. I suspect he decides what his approach will be when he sees the situation in real time during surgery.
Since you’ve gotten a good response from Dr. Costantino’s office, I think once you’ve met at your consult, if he feels like a good fit for you, stick with him & let Dr. Hepworth go.
Regarding styloidectomy w/ possible cervical instability, there isn’t a clear answer as to whether or not instability symptoms will be worse after the styloids are shortened. Some of our members have had great symptoms relief whereas others either had none or felt worse. I believe that ES can be a symptom of an unstable neck, but the pain caused by the styloids & compressed vascular tissues may not be relieved w/o styloid removal. Follow through w/ PT or surgery for the cervical instability afterward could provide the final relief for a multifaceted problem.
Do you know where specialists have landed on if shaving C1 can worse cervical instability? I have read conflicting things.
@jsisto - Welcome to our forum! Your question does not have a direct answer. We have members with CCI who have fared well w/ styloidectomies & C1 shaves but others who have had symptoms worsen.
I used to think shaving C1 was a bad idea because it seemed to me that it would disturb the balance of the C1 vertebra which subsequently could affect the stability of those vertebrae below it. Then I realized that our spines are fully surrounded & supported by muscles & ligaments which help support and stabilize the spine even if a little is removed from a vertebra.
CCI/AAI are more complicated issues which likely put more stress on the supporting muscles & ligaments of the spine thus there could be a chance of greater instability when C1 is shaved. It may also be worse if only one side of C1 is shaved.
The styloids themselves aren’t a significant help with cervical spine stability, but when the neck is unstable, one of the body’s responses seems to be to elongate the styloids to try to help increase neck stability. Elongated styloids themselves cause symptoms & can be disabling so it’s a vicious circle.
Hi Brandy,
Not sure if you are still on this forum. I was wondering if you have had your surgery and if so which physician did you decide on. Also, where is Dr. Hepworth located? I have a virtual visit with Dr. Costantino but now after reading some of these posts, I’m hesitant.
Thank you,
Lydia
Hi @lydiah,
I can probably help you. He started his own practice in Denver. Here is the website: https://www.denversinuscare.com/
I am actually scheduled to have my right styloid removed in June with Dr. Hepworth. I also had multiple consults, including constantino and decided Hepworth treated me best when it came to our in person consult. I’m still pretty scared to have the surgery, but I think its necessary.
Paul
@pauld1635 - I’m glad you’ve got surgery coming up somewhat soon. It can be a bit scary anticipating what’s coming but the nurses at Presbyterian St. Lukes are great & will help to put you at ease once you’re there. Dr. Hepworth will come see you before the surgery so you can ask questions & he’ll go over what he plans to do which is also reassuring. Getting your IJV decompressed & styloid shortened should help you feel much better once you’re healed.
I redirected your post to @lydiah as she’s the one who was asking about Brandy’s doctor. @Brandy already had surgery w/ Dr. Hepworth.
Dr. Hepworth in Denver did my surgery. I am a big advocate of getting multiple opinions. It’s a must with surgery. I got three. I would disregard any recent posts regarding surgery with Costantino. I am not a fan of his but think people have unreal expectations with surgery. Anyone posting with pain who just had surgery have unreal expectations. That’s a pet peeve of mine.
@Brandy - Thank you for reinforcing that those who complain of pain soon after surgery have unrealistic expectations regarding immediate symptoms relief soon after surgery. This is something we try to make sure our members know going into surgery - recovery is a long, slow process & requires much patience. I appreciate you supporting that idea.
Yes, of course.
It’s one of my pet peeves along with not vetting your surgeon. I understand the complexity and rarity of our issues and not everyone can afford to travel near and far for opinions. I see people get 3 quotes for a new roof or painting their home, but not when it comes to surgery. It’s mind boggling. Surgery is a big deal especially this surgery with still many unknowns.
Thank you Brandy, Paul and Isaiah for your feedback! Paul, I totally understand how you are feeling. I sometimes spend too much time ruminating about the outcome of surgery (typically at 2 am in the morning, Ugh). It’s so difficult to give up control of oneself and that is exactly what we have to do when having surgery. We are all behind you for your upcoming surgery and feel for you. I will look forward to your post surgery feedback.
Best,
Lydia
@lydiah It seems like there are so few surgeons in the US who have a good amount of experience performing this delicate surgery and even fewer who are trying to understand venous congestion and communicate with each other in hopes of developing something that resembles a ‘best practices’ approach. I consulted with both Dr. Samji and Dr. Osbourne who have a lot of styloidectomy experience but aren’t at all focused on venous congestion. Then I moved on and consulted with Dr. Costantino/Tobias, Dr. Hepworth and Dr Nakaji. With their equivalent level of skill and understanding it came down to a gut feeling for me. I chose Dr. Nakaji because of his personality, sort of a personable, methodical engineer, who has done hundreds of cadaver disections and 3-D modeling to perfect the skull base portion of the surgery. He uses nerve monitoring and he is in close communication with the other surgeons who are trying to understand what is happening with all of us and sharing information. Based on that he has developed quite a checklist of structures to look for that may be contributing to the venous congestion bedsides C-1 and elongated styloids.
Dear Chricky,
You certainly have done your homework on Eagle syndrome. At this time I have not had the opportunity to have a discussion with a surgeon regarding my symptoms, prognosis, and treatment. I am meeting with a head and neck surgeon in Boston, Ma. on March 17. I haven’t really grasped what exactly are symptoms regarding venous congestion except that on the CT scan it looks like I have compression of the IJV on the left. Most of my discomfort, inner ear pain, jaw pain, neck pain, shoulder and scapula pain are on the right. Where is Dr. Nakaji located? When will you be having your surgery?
Thank you for reaching out.
Best,
Lydia
Can you send his information? I’d like to look into him as well just in case. I have pretty much spoken to everyone else so might as well get his opinion if I can.
Is this him? Peter Nakaji, MD | GT Medical Technologies
@pauld1635 Dr. Nakaji is now in Scottsdale. I had both my venous decompression surgeries with him last year. An IR Angiogram with manometry would identify whether there is a significant pressure gradient across your stenosis. Maybe you have classic Eagle’s and not venous Eagle’s
@lydiah , there’s info in this section about symptoms, vascular & classic so you can see which ones you have:
[ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle]
(ES Information: Common Symptoms And Possible Explanations For Them)
Briefly the most common symptoms if there’s IJV compression are dizziness/ off-balance feeling, head and ear pressure, headaches…The right side symptoms you mention sound more like ‘classic’ ES…