Dr. Annino gave me the proximity of my styloids to C1. Left is 2.4 mm and Right is 3mm. Does anyone have knowledge on how close this really is? I heard normal is anywhere from 8-10 mm . Is this based on my anatomy, genetics? I also have a narrow palate and micro-retrognathia. Thanks!
Those spaces you mentioned are very small. The measurements put your styloids close enough to your C-1 to be causing IJV compression for sure. Since you’ve been diagnosed w/ ES, I’m guessing your styloids are enough elongated to be causing this problem, & it’s not coming from the angle the styloids have grown, alone.
If there was no elongation of your styloids &/or calcification of your stylohyoid ligaments, & it was only the angle of the styloids causing the problems, a greater argument could be made for genetics/heredity. Generally, styloids elongate due to some internal or external stress in/on the neck. Styloid elongation/s-h ligament calcification is the body’s response to a perceived need that a weak area needs to be strengthened, & so calcium is laid down in an attempt to achieve that. Unfortunately, our bodies don’t consider the problems that extra calcification might cause before the process occurs. They merely compensate for the trouble & then we experience pain & many other symptoms.
My styloids are quite short. Less than 2cm in length. No calcification either. I do believe it’s my anatomy/genetic makeup. All genetic testing at MA General was normal. Oy vey!
You mentioned your styloid lengths earlier thus, in the absence of other factors, the only conclusion I can draw is that your styloids are angled toward C-1 & sandwiching your IJVs inbetween. I guess in that case, it could be hereditary or it could be an individual uniqueness in your physical makeup.
Yep! That’s me…unique!!
Unique is good! We are each made a little differently. That’s what makes you special!!
Certainly narrow! Did Dr Annino give you any more info?
Not really. Seems like this must be a genetic thing. Thank God I kept pushing for answers. I have a feeling surgery will be with Hepworth. It won’t be easy though since I am single and live in Connecticut.
If you’re interested in seeing Dr. Hepworth, @Brandy, start working on getting an appt. ASAP. His office is hard to get through to & he is booked out many months. Make sure to ask to be added to his cancellation list as well.
It would be worth your while to get an appt. w/ Dr. Costantino in NYC as he also does vascular ES surgery & works w/ a neurosurgeon, Dr. Lo, who can shave the C-1 vertebra if necessary. Dr. Hepworth doesn’t do that, though he does operate w/ a vascular surgeon on hand who can do a venoplasty if the IJV doesn’t open up once the styloid is removed. Dr. Costantino doesn’t seem to book as far ahead as Dr. Hepworth, too, so proximity to you & a shorter wait time would make seeing Dr. Costantino appealing to me.
I am seeing Hepworth in July. I reached out to Constatino’s office but he doesn’t take my insurance. I live in Connecticut. I think my options are Annino and Hepworth. Unless, there is another I have not thought of……?
Quite a few members have had good results with Dr Hackman in North Carolina, but if you suspect VES then I’d stick with Dr Hepworth for now, July isn’t that long away…
I think you’re right. However, I have no idea how people manage having surgery away. Traveling and then what if there are issues? You cannot go to a local Dr. My ear Dr. said have surgery locally as he’s seen far too many people who travel for surgery and then want him to help when there are issues. I may have to move to Denver!
I woke up this morning & thought about my reply to you yesterday & suddenly remembered we’d had the insurance conversation before. Sorry for being forgetful.
I’m glad you have an appt. set up at Dr. Hepworth’s ofc. as soon as July. I’d heard he was booking into Aug/Sept. at this point so you were wise to get your appt. ASAP once you decided to see him.
It would be worthwhile contacting your insurance company to ask about the appeals process to have them pay for out-of-network specialist who’s more local to you. Some insurance companies offer flexibility in that arena for rare conditions. It doesn’t make sense for you to fly more than half way across the country if you could just hop over to NYC.
As far as traveling for surgery goes, we’ve had only a very few members who had post op problems. The best plan would be to stay in Denver for a week post op. Most doctors want a face-to-face 1 week post op ofc visit anyway. If anything major goes wrong, it’s most likely to happen w/in those first 5-7 days so you’d be close to Dr. Hepworth & the hospital. It’s also wise to take a family member or friend w/ you to help you post op as you’ll be a bit out of it for several days. Flying hasn’t seemed to be a problem for anyone. Post op, we recommend requesting a wheelchair both at the departing & arriving airports, upgrading your seat if possible, to business or first class so you have more leg room & ability to recline your seat. Flight attendants have been reported to be wonderful about providing bags of ice for icing the surgical area during flights, as well.
Thank you so much!
I cannot say enough regarding the valuable information I have learned from this group. It is so refreshing to finally be understood and have answers. It’s hard for even friends and family to understand this syndrome.
Thanks again for your valuable advice and words.
I can understand your local doctor’s frustration that they’ve seen patients when things have gone wrong, but if you’re travelling to see a very experienced doctor and as @Isaiah_40_31 says, can stay for a week post surgery, then the risks are minimised. Unfortunately with ES if members hadn’t travelled for surgery then very few would have it!
There are lots of posts about travelling & advice post surgery, what to bring with you etc, & @Isaiah_40_31 has given you some tips as well…
Thanks! Once again, you both have been extremely helpful!
You’re most welcome, @Brandy!