I started the process with Dr. Nakaji back in September after receiving my Eagle’s diagnosis.
I reached out to a handful of doctors, mainly Nakaji and Hackman, after having a consult with a local doctor who was less familiar and wanted to take a transoral route.
Nakaji’s office was the fastest moving and most focused. I had a phone call with him the week I submitted my CT scans with elongated styloids. We talked on the phone and he walked me through the surgery, what he does, C1 shave, etc. He wanted me to pursue the standard dynamic catheter veno/angiogram that he sends most people to do. I followed up with his assistant and was let known that if the angio/venogram doesn’t show what’s expected, we’re not doing surgery.
I’ve had serious symptoms and it’s been a long struggle to get here, short list include:
Brain fog: severe mornings, slowly improves throughout day and with walking/exercise
Pulsatile tinnitus: When bending over, also laying→standing transition - sounds like an ultrasound of baby’s heart, typically on the left side.
Mild Memory loss: Forgetting names/facts (previously excellent memory). It’s a bit hard for me to tell what element of this comes from lack of sleep vs any sort of connection with eagle’s.
Heart racing: Positional (laying down, neck turned), wake with racing heart pre-cervical pillow
Head pressure: Major when bending over
Neck thumping: Hard thumping sensation “forcing through” - occurs seated at computer with head turn
Night sweats, strange HRV - Oura ring reports significant HRV leading it to thinking I’m sick or something is wrong for a significant period of time.
Immediate exhaustion from alcohol: No buzz, just tired (past 5yrs), gave up alcohol
Severe ear ache: Initially left, now right.
Constant, severe tinnitus: High pitched, pulsing ringing all the time, similar to the sound of an electric generator.
Throat: Feeling of something stuck, throat pain
Voice issues: Vibrating/tickling when talking extended periods, complete voice loss after prolonged speaking
Past swallowing difficulty: 2-3yrs ago, somewhat subsided. Felt difficult to swallow and choking sensation.
Very poor sleep: Difficulty falling asleep
Strange sleep episodes: Aware but asleep, light sleep with jolting awake
Exercise helps temporarily: Weightlifting notably improves symptoms day-of despite being difficult / causing lightheadedness when doing the lifting.
Jaw pain/TMJ symptoms
Crunching/clicking: When moving tongue to right floor of mouth
Shortness of breath: With talking for extended periods, light movement (stairs)
Exercise intolerance: Easily winded, lightheaded
IBS-like symptoms
General malaise: Feeling balloon headed, achy without illness for extended period
Neck/shoulder pain
Overall, I’m pretty sure I have vascular eagle’s. I’m extremely concerned about false negatives and not having surgery though. There’s really no other solution, and other surgeons are scheduling so far out.
The tentative timeline:
Fly from PA to Phoenix tomorrow
Angio/venogram with Dr. Mehta on wednesday.
Depending on the outcome, consult and pre-surgical with Nakaji & co on Thursday
Surgery on the following Monday
I desperately want this to be figured out and to come home safely without a styloid.
Hi @jalexy12, I wish you all the luck with the venogram/angiogram on Wednesday! Thank you also for listing your symptoms, they seem to align really well with what I have been experiencing. One other potentially relevant thing I forgot to add in my other post last week about my venogram experience with Dr Mehta is that I also made sure to discuss with him at length immediately before the procedure what head positions are worst for me in terms of symptoms, and how to best recreate them during the venogram. In a similar fashion to what you report, my head and cervical pressure symptoms are worse when seated or walking. My theory for this is that when my back neck muscles contract to keep my head up, they compress the collateral veins at the back of my head, which seem to be one of my main venous drainage routes. Given this, Dr Mehta and I worked together in the first part of the venogram, after I was laid on the table, to identify the “worst” head position we could achieve. This involved using a 30° wedge under my neck, and me pressing my neck slightly in the wedge to compress the vasculature at the back of my head, which recreated reasonably well the sensations I get during my day-to-day life. Indeed, when he took the wedge away and allowed my head to rest naturally on the table, the pressure gradient dropped significantly. Maybe worth discussing with him about your specifics.
Hi @jalexy12 just wanted to give a vote of confidence for Dr. Nakaji – I met with him back in the spring and he was extremely knowledgeable and very easy to be around in-person. I didn’t end up going with him for mostly travel-related reasons, but I would definitely have been confident in his surgical ability. Best wishes for you week ahead!
I’m happy that you have these next steps in place @jalexy12! I expect that Dr. Nakaji will do your surgery & you will come home feeling better. The journey to surgery is long for many of our members but the outcome is the payoff for enduring all the hoops, twists & turns along the way.
I’ll be rooting & praying for you next Mon. unless we hear from you otherwise.
@jalexy12 , praying that the venogram shows enough to have the surgery- I don’t know how others have felt but flying for me increased the head pressure lots, & for a few days afterwards, so hope you don’t feel too grim… @crumblecookie thank you for all the info about the venogram with Dr Mehta, very helpful for members I’m sure! @Bmmac how are you doing after your surgery? I hope it helps, & safe journey home
Doing well post surgery. No pain meds since surgery but lots of icing and walking daily. Also doing 400 mg of Ibuprofen 2x daily to reduce swelling. It will take time to see if this has been successful. Have somewhat of a Crooked smile but no other areas of numbness. I can’t speak highly enough of Dr.s Nakaji and Mehta….and Honor Health hospital facility.
Stayed next door at Courtyard Marriott 7 minute walk to Dr. Nakaji ‘s office and the hospital. Staff have been so great. Feels like home.
I have CCI so lots of work yet. But not until the inflammation settles down
Thank you for giving this update, @Bmmac. I’m so glad you’re doing very well post op. I hope that with more healing time you’ll notice a definite positive change in how you’re feeling.
Thanks all! @Bmmac@crumblecookie did you all have to stay for a night at the hospital? When I was talking on the phone with him I think he mentioned this.
Good you’re not in much pain, hopefully the facial nerve will settle- others have mentioned doing things like stroking your face with a feather to wake the nerve up later if it doesn’t heal by itself, it usually resolves okay though… Take care & make sure you get plenty of rest along with the walks
Yes, I spent the first night in the hospital after surgery, with the possibility to extend if needed, but I was luckily feeling great by the next morning, so I was discharged.
So I just got out of the appointment with Mehta, and he seemed to not have a clear indicator on if it’s the styloids. He mentioned the jugulars are likely compressed but other veins are compensating etc, and that it seems like I have a thoracic outlet issue.
It’s not looking good based on what I’ve read from Nakaji and him being extremely conservative on the surgery. I’m really disappointed but I guess I won’t know until tomorrow. I’m hoping I can explain to him what’s going on, because there’s clearly some compression not surfaced in the tests.
@jalexy12 - I’m sorry to hear you’ve not received a strong vote of confidence from Dr. Mehta regarding what he found appealing to Dr. Nakaji as surgery worthy. As you said, though it’s best to wait to hear from Dr. Nakaji himself tomorrow. You traveled a long way to see him so I hope his answer is yes to surgery so you can go home starting with recovery vs needing to do another doctor consult.
So he agreed to do it. His opinion is that it’s likely majority classic eagles, and there isn’t a significant vascular component.
The interesting part about my case is that there is almost complete blockage of my jugular positionally, but they both contend it’s not a huge issue because I have a fairly enormous collateral network of veins doing drainage outside of that.
My discussion with him revolved around the fact that it does seem like in many cases this collateral network is being blocked and not compensating - bending over and sleeping.
So it’s by definition not a classical vascular situation, even though it’s likely my jugular will be unblocked and I won’t have to worry about that collateral network as much anymore. He made/is making no promises regarding any of the symptoms, which is reasonable.
A little confusing, but I’m set for Monday. I’m both very nervous and very excited to get this thing out of my throat.
