@JGont If you don’t have it on your list for consults already don’t forget to bring up the Ponticulus Posticus / Arcuate Foramen that @Isaiah_40_31 pointed out earlier in the thread when you go for your Eagle consults.
@avarj had pointed out earlier that your vertebral arteries appear kinked in that area and a ponticulus Posticus/arcuate foramen directly involves the vertebral artery pathway.
I had some overlapping symptoms with Eagle Syndrome, some of which improved or resolved after my bilateral styloidectomy, but not all. The arcuate foramen / C1 area is now one of the things being looked at as a possible contributor to my remaining symptoms, along with soft-tissue involvement / likely fascial banding around C1.
I wish I had already had the bridge removed so I could give more detail on which symptoms improved afterward, but I do think it is worth asking about during your consults, especially since the vertebral artery and suboccipital nerve run through that region. If looking up or certain head positions worsen symptoms, I would definitely mention that too, not only in reference to the styloids but the Ponticulus Posticus as well.
Thanks @MGORNEAU, appreciate the insight and reminder. I will bring it up at my next meeting with Hepworth, and ask on the next consults if they would review.
Not even sure how to go about addressing it if it is an issue. All my radiology reports indicate that there was no problem with the vertebral arteries, but unsure who I trust at this point.
@JGont I completely understand not knowing who to trust at this point. My reports failed to acknowledge findings that should have been noted. Ironically, my CTA/CTV specifically ordered for Eagle did not even measure the elongated styloids or note them as elongated for that matter. Their assessment was “normal study.”
I also cannot imagine Dr. Hepworth would be insulted if you bring it up with him directly. From what I have read on the forum, he is used to looking beyond the standard radiology report.
None of them should be insulted if you ask; it is a legitimate finding to question based on symptoms. I would also have the 3D image handy as a visual reference, depending on whether the appointment is in person or remote, so they can see exactly what you are referring to.
I think even the specialists who already think outside the box may still get focused on the part they treat most often, so it is worth asking directly whether a related finding could also be contributing.
I’m doing okay, thank you. Still working through the next steps, but at least pieces are finally being looked at more closely and the years of head and nerve pain are starting to make sense.
Thanks @Isaiah_40_31, I have reached out to Osborne to see if I can get a second opinion. As mentioned by @MGORNEAU, I will see if they can determine any issues with the vertebral arteries. Hoping it’s an easy “this is the problem”.
Had the second opinion today with Dr. Osborne. Based on imaging (he does not review Ultrasounds), he is not saying that it is a slam dunk. He does think all the symptoms align with Eagles, and based on everything I have tried in the past and the risk/reward would recommend I move forward with the surgery. This has gotten me slightly spooked, anyone else have a similar situation?
He has been honest with another member recently and told them he believed the surgery wouldn’t help, so is honest when needed (no doctor will guarantee the surgery will be a complete cure though) so if he’s suggesting that you do have surgery then he must feel it’s worth that chance… It is so hard to make the decision though, praying that you make the right choice
@JGont Since the ponticulus posticus and the vertebral artery issue have already been pointed out, by @avarj I would be cautious about treating the styloids as the only possible cause. Dr. Osborne performed my bilateral styloidectomies, but my known soft-tissue lesion at C1 was not addressed. Some symptoms improved, but my head and eye pressure, facial pain, and lightheadedness remain, although the lightheadedness is less aggressive than before surgery. He is an ENT/skull-base surgeon, so he would not be able to address the C1 anatomy itself.
Based on my own experience, it would have been beneficial to have either a neurosurgeon performing the surgery who acknowledged the potential contributing anomalies, or an ENT who worked closely with a neurosurgeon and took those anomalies into consideration. I also have a complete bridged ponticulus posticus on my symptomatic side, which Dr. Aghayev identified. I would want the C1 anatomy and vertebral arteries evaluated by an appropriate neurosurgeon before deciding whether styloid surgery alone is the right move.
Thanks @MGORNEAU, I did bring up the vetebral arteties in thr conversation. Dr. Osborne did not believe they were an issue. My thought is to contact Dr. Constantino and get his opinion.
@JGont That sounds like a good additional opinion. Since Dr. Costantino is also an ENT, although he does appear to work with a neurosurgeon based on what has been shared on the forum, I would still want a neurosurgeon experienced with the craniovertebral junction and vertebral arteries involved before deciding whether styloid surgery alone is appropriate.
Dr. James Liu, who has recently been mentioned actively on the forum, is a highly respected, top-tier neurosurgeon who specializes specifically in this territory, brain/skull base. His consultation fee is $500, and in my experience, he is very open to having a meaningful dialogue with the patient, particularly once he realizes you are informed about your own anatomy and imaging.
@JGont - To back up what @MGORNEAU said about Dr. Liu, I had a conversation w/ one of our members earlier today who is considering surgery w/ Dr. Liu post bilateral styloidectomy where existing bilateral IJV compression wasn’t addressed. He feels Dr. Liu would be a very good option in his case because he is also adept with vascular surgeries. He also described him as very “down to earth” as opposed to other specialists he’s consulted.
So had a call from Dr. Nakaji after sending over imaging. He does not review ultrasounds, and due to the fact they did not capture the IJV’s in the CTA he could not comment further on IJV compression.
He did say he did not recommend surgery and to continue discussing with other neurologists on how to proceed.
Have another second opinion (4th) set with Dr. Constantino in September. But honestly getting really discouraged.
Dr. Hepworth and team seemed very confident when I have originally discussed these issues. And they were additionally confident after the IJV results. I don’t really want a CTV if I can avoid the radiation,
Any advice, really unsure what to do at this point.
Thanks @Snapple2020 , I’ll ask Hepworth if that’s something he can order when I see him next. Don’t want to have the wrong thing done if I can avoid it.
Dr Nakaji has declined to do surgery on some other members too, which Dr Hepworth &/or Dr Costantino have thought surgery would help- it’s so hard when you get different opinions! I understand the radiation concerns but with the extra imaging hopefully you’ll get a clearer picture?
Thanks @Jules , we’ll see if Dr. Hepworth agrees. Have a follow-up with Dr. Constantino in September so hoping to hear from aomeone who reviews the ultrasound as well. If CTV is available, that too.
