I know that is probably the route I should take, but right now just can’t stomach shelling out even more money and time for this. I’m just worn out.
I really feel for you- of course you couldn’t bring someone with you, stupid me, how could I forget Covid?! And I agree to have another angiogram would be madness! It does sound as if you’ve had plenty of testing, & enough to get a diagnosis, but that maybe there’s some crossed wires with the results… If you’re seeing Dr Hepworth at the next appt., then maybe if you can face calling check all the results are together in your notes & ready for him, & go armed with the questions, push him on next steps & why not if he’s suggesting anything else. Easier said than done, I know! But hopefully if you’re seeing him & not anyone else, he’ll be ready to make a decision. Don’t give up, you’ve found something that works for now, but if you feel it’s not a permanent solution then you know your body better than anyone & unfortunately you’re the only one who can advocate for yourself…thinking of you & sending you a hug 
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Definitely understand the time & financial issues. It is so frustrating to get the runaround though. I agree w/ Jules, you may just need to press Dr. H for a decision one way or the other - ES or not? & Surgery or not? Having copies of all your lab results & other tests in hand would be a good idea, too. Hopefully you’ve collected those along the way.
Wish we could help you in a more meaningful way, blossom! Here’s a hug to let you know I care.
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I just realized I accidentally posted this update from today on my old thread. So I’m posting it again here.
I had my appointment today. I expressed frustration that I’d been recommended to have pressure testing done again when I already did it and finally the nurse pulled my angiogram results. They showed that the pressure was high (10) at the torcula. Dr H said that was more the back of my head and the pressures in my jugulars were not as high. No one ever told me this. The doctor that did the angiogram never said anything about it , he seemed to think nothing was wrong except my small brain aneurysm that was found. Dr H said the solution may be a stent in my brain veins or just staying on plavix but he didn’t know for sure. He doesn’t know if I have eagle syndrome for sure. And he’s not 100 percent positive a styloidectomy will help me, but he’s somewhat sure — he put it at 70 percent or so — and I guess that’s kind of all that’s left to try beyond a stent or just staying on the drugs I’m on forever, which don’t help fully anyway. So the next step is surgery to remove my right styloid and they will call me to schedule. I’m feeling scared now that it’s more real, and there’s uncertainty if it will even help, but I don’t know what else to do? The vascular surgeon he wants to do the surgery with is a different one than I saw and so I’ll have an appointment with him at some point to establish care. I am leaning toward doing it because without these meds, I’d be so miserable. The only reason I’m questioning is because I’m feeling moderately better and it’s not a for sure thing that it will help. But is it ever for sure that it will help with surgeries? I also feel it’s unlikely this will get better with time, it’ll probably get worse considering that’s been the trajectory. I don’t know. What would you all do with these same circumstances?
It’s often a difficult decision whether to have surgery or not, but I do agree that things aren’t likely to improve with time. But then there are some risk with surgery! Would you have to stay on the plavix anyway because of the brain aneurysm, or is it just for the jugular compression? If just for the ES, then I guess it’s not ideal to be on it forever? Would the aneurysm pose any risk during surgery? Is it a good time in your life to be able to take time off, & is your insurance okay to cover it? Just a couple of things to consider…
Personally, I’m so glad that I had surgery & I feel loads better since the jugular compression has been removed. I wasn’t sure whether to have the second side done as it wasn’t as bad but in the end decided to because:
- I wanted to have surgery while I was able to see a good surgeon, in case he moved on/ retired etc. Good surgeons are hard to find!
- I wanted to take the chance to be as good as I could possibly be.
- I was worried with a styloid still there & compressing the blood vessel that maybe if I had a car accident for example that the impact with a seat belt could potentially really damage the blood vessel & that made me nervous- not that I’ve ever heard of that happening to anyone, but…
I hope that this helps!
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Thanks so much Jules. You make so many good points. It is a decent time to take time off for surgery, and so far my new insurance has been pretty good. The nurse said they were booking into the summer for surgeries but that would be fine. You make a good point about the surgeon. I do trust Dr H to do it and I feel confident he is unlikely to cause me more damage. I don’t think he’d recommend it if he didn’t feel it was the best next course. From what he said, if my symptoms do not go away after surgery, then I may need to continue taking plavix (assuming it helps.) or I could consider a stent at that point. I think I’d lean toward having the Eagles taken care of before going that route though (stent). I also want to try to take care of this problem, whatever it is, before I may want to get pregnant and have kids someday… my partner and I just got engaged. I am 30. I don’t want kids now but I might in a few years, and don’t want to be in this same boat then.
I do keep thinking of something that I’ve read on this site, that scans don’t show everything and sometimes they don’t fully know the scope of the problem until they operate. But I know my styloid is longer than normal and calcified on that side. My symptoms match up with the Eagles symptoms. With that in mind I am leaning toward doing it. Even today my neck and shoulder is really sore, a great reminder of why I’ve been on this road. Sometimes I forget how bad it actually was because the meds are masking it.
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blossom,
You make good, well thought out arguments for surgery. I, like Jules, had surgery because my symptoms were impacting my life in such a way that I couldn’t be active because of the symptoms I would get when I was. I was never diagnosed w/ vascular ES but suspect I may have had it to some extent. I had my right side done first at the doctor’s suggestion & after surgery many symptoms subsided. However, I had bilateral ES so the remaining styloid ramped up its efforts to make life difficult & it wasn’t until after my second surgery that I was finally freed (for the most part) from my ES symptoms. I am able to be active at my former level & am so thankful that I made the choice to have the surgeries. I have some slight nerve damage leftover from surgery but it doesn’t impact my life in a significant way.
Looking forward to starting a family in the future is a good reason to take care of this problem now. Kiddos are a great challenge in themselves. Having good health at that time in your life will make having surgery now so worthwhile.
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I certainly think it’s best to at least try with the styloid removed first rather than a stent, & very sensible to get this sorted before you think about starting a family! Congratulations on your engagement ! 
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Hi @blossom
It is always more difficult to decide about interventions when the answer isn’t super obvious. From my experience with ES all of the testing pointed to doing the right side first and indeed the styloid was found to be compressing the IJV when in certain positions however it turned out the left side was much more severe compressing both the IJV and carotid artery - this did NOT show in my imaging. The other part that was not found until the surgery was done was both styloids had grown attached to my mandible resulting in severe compression any time i opened my mouth or chewed… a great surprise that made 100% sense when i look back (eating popcorn was a terrible experience for me and I stopped chewing gum completely).
There are are things they just can’t know until they are inside and looking directly at your anatomy. You have to balance the risk of the intervention with all of your individual puzzle pieces and your quality of life. It is hard. You have the best surgeon for this, he is your advocate and understands the delicate balance.
I hope this is helpful, thinking of you!
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Thank you @JustBreathe it is very helpful. I am definitely leaning toward doing the surgery, but I’d like to enjoy part of my summer so may not schedule it until end of summer or early fall. My symptoms have been a lot worse the past few weeks which makes it an easier decision. I am hopeful that once they get in there Dr. H will be able to see the problem and fix it. Fingers crossed!
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I’m not happy for you that your symptoms have worsened recently, but it does make the decision about surgery easier! I hope that there are no Covid resurgences & that you can have a good summer first! That might be one thing to consider though, if it did come back in the fall like the flu season?
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