Hey y’all! I know I’ve posted several times this week, but this process (from diagnosis to consult) has been fast and dirty for me due to the severity of my symptoms.
Last night, I got desperate. The ES started blurring my vision and causing tinnitus and I am concerned I am suffering irreversible damage as time goes on. So, I called the on-call ENT Surgeon at Duke in order to connect with Dr. Ellison, one of the listed specialists here on the forum. I had booked with him virtually using the Duke portal and that appointment was not until August 29th. I knew I could not wait that long. I also had calls and messages left for Dr. Hackman at UNC Chapel Hill, but haven’t heard back yet.
The on-call last night was so kind. She immediately put in a message for Dr. Ellison to explain my case and request an earlier appointment. The scheduler just called me (less than 12 hours later!) and I am BOOKED for NEXT WEDNESDAY, June 7th, at 8:15 am! Additionally, since it’s a 3 hour drive and I cannot currently drive because of vascular involvement, it’s virtual! They made a great exception for me (new patient appointments and surgical consults generally are not able to be virtual). They are getting my CTA from my local hospital and the ultimately diagnostic x-ray from my dentist in the next week to prep for the consult.
I am so relieved. This makes me less anxious, already. I am sure Dr. Ellison will see the urgency in my case and hopefully I’ll finish that appointment with a surgery date.
I will keep everyone here posted! I just feel like this is a prime example of self advocacy. If I had done things the way I was “supposed to” I would be waiting until August for a consult. That might have killed me. Please - do not hesitate to get loud if you know something is wrong and you need help. I know not everyone feels capable of doing that - but you can ask for help, too, from friends and family, and even us, here!
Well done for not giving up and for pushing for an earlier appt, so pleased for you that they agreed to do a virtual one for you…
Tinnitus is quite a common symptoms of ES, and quite a few members have had vision problems too. Rarely it’s caused by compression of the optic nerve because of Intracranial Hypertension (caused by jugular compression), so given your symptoms this seems unlikely. Vision problems can also be caused by pressure on the Internal Carotid Artery, and then the Ophthalmic Artery, so this might have been the issue for you. I think too the Trigeminal nerve does have some role in tear production so possibly compression of this nerve might cause dry eyes.
I hope too that you do hear back from Dr Hackman as well
Thank you! Do you think for some reason I’d be better off with Dr. Hackman? I want what’s best for me, but I also want this taken care of quickly. Duke is a wonderful hospital and I got Dr. Ellison’s name from this forum, but if Dr. Hackman is my best bet I’ll push hard for a consult. Chapel Hill and Durham are almost exactly the same distance from me - BUT I have family in Durham and not anybody in Chapel Hill, which would make surgery day more complicated.
If you have time, it’s good to meet with a couple of different doctors to see who you feel most comfortable with…I think more members have seen Dr Hackman in recent times, but if you’re able it’s worth using the search function on the forum to read up on members’ experiences with both doctors.
I’m so happy for your success in getting the earlier appointment! It’s important we do our research. I also think meeting the doctor is a good way to know more about their approach and expertise related to you specifically. Good job!
I am not giving up on Dr. Hepworth, as I was told I would be one of the last they schedule for some time. I just hope something makes it happen sooner than later. I have also reached out to Dr. Hackman and Dr. Costantino. I look forward to meeting either of them, in case my first path doesn’t work out.
@EaglesWin - We have recently learned that Dr. Costantino doesn’t define elongated styloids as ES unless they’re growing into the the throat & causing throat pain & swallowing issues. He’s not the first ES surgeon on our list to define ES this way. When elongated styloids are combined w/ vascular compression, his name of preference is Vascular Outflow Obstruction caused by elongated styloids. In the opinion of this moderator, vES & VOO are one and the same.
That is interesting to hear. Does Dr. Costantino’s definition affect whether or not he performs surgery? I actually have the throat pain and swallowing issues as well as the vascular. The vascular are definitely much more severe. @Isaiah_40_31 , Among other symptoms, my head pain and pressure have become so intense on most days, that I am really getting scared. It used to be that I could recover and work, but I just can’t do it. I called Dr. Hepworth’s office to let them know on voicemail. It is just unbearable. If it gets worse, I know I’ll need to go to the ER. And what will they be able to do? I am not yet on Dr. H’s schedule. He is definitely who I need. But I am not sure what to do.
Yes, Dr. C will do surgery if IJVs are obstructed w/ elongated styloids even if he doesn’t call it ES. He & his associate Dr. Lo work together so C-1 can be shaved a bit if it’s the primary culprit causing the IJV compression. Dr. Hepworth doesn’t attend to C-1 in that manner if it’s a problem, but I’ve heard he does other things to try to alleviate C-1 pressure if he can. Do you know if your C-1 vertebra is playing a role in your IJV compression?
Are you taking a blood thinner? That’s Dr. Hepworth’s first line of defense for his patients while they wait for surgery w/ him.Honestly, I’d say get in to see whomever you can see the soonest.
Thanks for your reply. Dr. Hepworth does have me on Brilinta. I don’t know if my C-1 is also compressing the IJV. Dr. H did say the CTV shows my cervical vertebrae are rotated 10 degrees, which may be creating more pressure on the IJV by the right styloid. If surgery doesn’t resolve the issue, he would refer me to spine specialist.
Hanging on and trying to keep my faith. God is with each of us.
I still haven’t heard back from Dr. Hackman. The first message I got from his nurse let me know that they would need a referral in order to get me in, which makes zero sense to me. I can get the referral no issue, but I’m going to see how my consult goes on Wednesday. I truly don’t think that I have time to see more than one surgeon unless for some reason my first appointment gives me a bad feeling. I know it might sound dramatic, but I can feel this slowly killing me. I can’t eat. I can’t sleep. I’ve already fallen and given myself a concussion, and with my vEDS, I am at imminent risk for dissection. Paired with the fact that I have gastroparesis and was already supposed to get a feeding tube surgically placed in coming weeks, I’m just very sick.
I’m sorry Dr. Hackman’s office hasn’t been very helpful. Many of the doctors on our forum do require a referral. I’m not sure if it’s the policy of the medical group or hospital they work for, or if it’s for personal reasons. I suppose it’s one way of helping sort out the patients w/ a legitimate diagnosis from those who may be incorrectly self diagnosing & just taking up the specialist’s time.
I completely understand that, truly. But they were sent my scans and official diagnosis—and we played phone tag for over a week before they left a VM stating they needed a referral before they’d talk to me. I’m sure it’s because he’s such a sought after surgeon and I can appreciate it! But I don’t have time for the back and forth. I just genuinely can’t do it with how severe I am. So, with the reputation Dr. Ellison seems to have I’m hopeful he’s my first and last stop.
