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.