Today I had an appointment with the ENT speciality surgeon who is local to me.
Encouraging things about this appointment:
the surgeon I saw has done and actually super interested in Eagles & treating Eagles and even has a surgery for one next week.
he is very kind, methodical and wants to do right by the patient.
he has a zero nerve injury rate and answered all the questions you guys gave me here, thank you so much (@Jules and @Isaiah_40_31).
he does extraoral surgery only
We discussed Eagles and he showed me how a case study and very good friend of his had nearly the same styloids as me (kinda uncanny), and the solution was removal of both styloids with complete resolution of symptoms.
Now for the mental and emotional toll of Eagles… he did want me to see a GI doctor to rule out anything else & do a swallow study before he agrees to remove my styloids. This is probably normal and a sign of a good surgeon but it made me feel like this will never end.
I kinda hate that the previous ENT put LPR in my chart, its like every doctor sees’ that and just assumes that is it. I reminded him that with the previous ENT I did do allllll the treatments with zero improvement. I just don’t have LPR and never have. I have been scoped (awake, 3 times) and they just tell me “oh a little irritation”.
I made a GI appointment but I don’t want to spend money and time doing all these extra tests for nothing… Would love to hear your thoughts and how to navigate this….
I’m glad that your doctor was helpful and sounds like he’s done some successful surgeries… so frustrating that he wants you to try seeing a GI doctor when you’ve already had investigations, we’ve had other members who’ve had to ‘jump through hoops’ of unnecessary treatments before being able to get surgery…
Maybe it’s worth seeing the GI doctor on the chance that you can show them the testing & treatments you’ve already had & that more really aren’t needed. Perhaps you’ll be able to get them on your side & they could report back to your ENT that you don’t need any more investigations? If they still want you to go ahead with the swallow study etc then I guess you have a choice to do that or try another doctor on our list?
@lsheep - How great that you found an ENT w/ ES experience local to you. We’re always looking for new names to add to our Doctors List so if you end up having surgery w/ him & all goes well, we’ll add him.
It’s interesting that he said none of his patients have ever had nerve injury from a surgery he’s performed. Did he mention to you if he cuts the styloid back close to the skull base vs. just removing a little of it?
Nerves sometimes need to be moved during a styloidectomy surgery. Just the moving of them irritates them as though they’ve been injured, & there can be new symptoms post op as those nerves heal. I had that experience since I had a nerve wrapped around my right styloid which had to be unwrapped so the styloid could be cut back. That left half of my tongue paralyzed for about 9 months. It did fully recover, but eating & talking were an adventure for a while! Some of our members have also come out of surgery w/ a sore shoulder or a lip droop & first bite syndrome isn’t uncommon. All of these things usually recover well over time. It just depends on the layout of the nerves which doctors can’t know until they’re in the midst of surgery.
Thank you so much for responding. I really do think that maybe my best option is to go in and be honest with the GI doctor. I already have had thyroid ultrasound, dental pano (which now I want to get ahold of to see if I can see my styloids), xrays in my sinuses and both sides of a neck and a CT scan with contrast (full head and down to my heart) so I was hoping for a break from all the testing for abit hah!
You all have been so helpful, and I am definitely considering calling Dr. Cognetti (spelling?), he is about an hour from me so not bad at all. This doc said since we “just met that it may be until the end of the year until I can do surgery”. The anxiety of trying to live another year like this is so awful….
I definitely lucked out there, I believe in reference to the nerve injury rate I think he may have meant like a permanent injury? My brain fog & anxiety was bad so I was trying my best to follow him. My husband thinks that is what he was trying to explain to me.
He does, he said it’s very important to get as close to the skull base as possible. When he showed me my ct scan, he even mentioned that the ligament is calcified as well and that would be removed too.
Oh wow, do you mind if I ask how long ago you had your surgeries and how your recover was?
@lsheep - It does sound like the doctor you saw is very knowledgeable about ES then. Do you mind sharing his name?
Unfortunately, you’ll find that Dr. Cognetti is also booked out quite far into this year because he prioritizes his cancer patients over those with ES. Once you have your consult with him, you’ll get a surgery date that isn’t far off i.e. maybe a month- 6 weeks out from the consult. Since you have vascular symptoms, Dr. Cognetti would be a better choice for you unless the doctor you recently consulted indicated he does IJV decompression surgeries, too.
I had my first surgery in 11/14 & my second in 8/15. I subsequently learned I had IJV compression on the left & had a revision styloidectomy & IJV decompression surgery in 2024. My first surgery recovery was a bit rougher than the others & it was 2 months after surgery before my energy came back & I started feeling a bit more normal, but the symptoms from my remaining styloid kicked up at that point. My second surgery was more straight forward & I healed more quickly. My 2024 surgery was the one I healed from the most quickly. I was able to take a 1.5 mile walk two days after surgery & going forward. I joke that my body knew what to expect by the time I had that surgery so it was in high healing gear pretty quickly post op.
Absolutely! I am seeing Dr. David Brown from Specialty Physician Associates and he works out of offices in Bethlehem Pennsylvania, Quakertown, Pennsylvania, and Wind Gap, Pennsylvania.
That is interesting about Dr. Cognetti, maybe a consult with him would be worth it. Thank you so much for the recommendation.
Wow that amazing you have been able to recover so well from all of those surgeries! I am so looking forward to having my own success story soon!
I also look forward to reading your success story, @lsheep! It will be wonderful for you to have the energy & good health to enjoy your family & your business!
Dr Brown sounds like he knows what he’s doing, but if you could see Dr Cognetti too it wouldn’t hurt to have a second opinion, & if you’ve got to wait a while for any treatment with Dr Brown anyway…
I think it’s crucial you do both. I was told to do the same- although I didn’t get a GI work up I had one 5 years prior. So I knew generally everything was ok. The Barium swallow test was the most important test. For me it showed that when I was choking the food was not even in my throat. Hence passing the test and proving that I had dyshaghia not linked to my esophagus. Yes it’s annoying, like many of us in the group we see countless doctors and do countless tests. It’s important you rule out everything.
That is super interesting about the swallow test, I hadn’t considered that actually being helpful to my situation. Honestly, I think I was worried they’d get stuck on one explanation (like my last ENT) and, when presented with new information and symptoms, refuse to investigate any further. Thankfully, I have had 3 laryngoscopies which showed very minor irritation (I have a long history of sinus allergies) and the CT scan said everything looked great other than my styloids so hopefully I won’t be spending a lot of time at the GI doctor.
