I had a neurosurgy consult today with Dr. Sheng-Fu Larry Lo in New York (Northwell Health). He is a prominent physician with great credentials but I wasn’t impressed with his attitude towards evaluation of Eagles. He yawned several times during the consult and wasn’t very engaged. He never once mentioned the scans I sent. The only thing he said was my symptoms sounded like classic Glossopharyngeal Neuralgia. When I brought up possible Eagles, his response was…“we’re not going down that rabbit hole”. He left me with no suggestions other than to seek evaluation for GPN in my geographical area. The funny thing is…I think ES is one of the major causes of GPN. I’m sure Dr. Lo is very good with CCI and other similar things. But it was a waste of time and money in reference to my needs.
I know many of you have been through similar things. This is such a difficult journey, and it’s hard to believe it’s so difficult to get help.
-Feeling very frustrated.
I had really high hopes of coming away with some answers, only to be really defeated
I hear u on that but you are feeling defeated , you are not defeated, I had some good advice given to me on here and I didn’t take it, thinking that if I kept cool and didn’t push hard my operation dates would arrive, and they didn’t, and still haven’t
This is not an easy journey, I could write s depressing book on the subject, the disappointment you feel after leaving every appointment is awful but try and think what went wrong, and address them issues at your next appointment
The ride is that rough at times it will wear the skin away on your ass so always sit on a seat with a cushion
I would love more information on why Eagles seems “controversial” among doctors, from the perspective of a doctor. Surgery is often cited to be 80% effective. That’s pretty good! Why would doctors think Eagles is just a rabbit hole? If it were not a valid diagnosis, surgery wouldn’t be that helpful.
I’m sorry your appointment was frustrating. How long are your styloids?
And to piggyback off of those statistics that are cited through different websites. It drives me bonkers because I think we all know that if a)more doctors understood or care to understand ES and b) more doctors treated it, instead of labeling it with something different ie, TMJ (had about 6 plus Drs do that with me due to their lack of knowledge on the subject) I think that those statistics would be even higher and better! I just think that 80% is okay but is that really even right?! Lol see here I am up and feeling very frustrated today too. I live in upstateNY. I can’t find one Dr around here there that has done more than a couple of surgeries so am going to be left with traveling when the time comes. Crazy to me that a good majority of us have to travel. Quite frustrating ! But we have to remember we are not alone we here understand one another and are an ES family.
Thanking God that I have all of you! Can’t stress that enough! Honest my own family doesn’t get it at all.
Hi my friend I am so sorry about your experience at your appointment. I don’t have any sounds advice except that I can and totally relate to what you are going through. I really do. And you are not alone with how you feel either. It’s frustrating however as mentioned let it be a learning experience on what to do differently next time. I am looking to go see Dr Hackman next year. Unfortunately I had to have a different surgery that I am recouping from and won’t have any time to take this year to start my appointment journey with a surgeon. Of course will have to travel because there are zero surgeons here in Buffalo/Rochester NY area. Heck I was excited when the 7th Dr ENT figured out what was going on with me around here! Small victories and baby steps we will get there! Just keep pushing you got this better days are ahead !
Thank you for your support. We never even made it to the “how long are the styloids” conversation, unfortunately. My styloids appear to be a little long, but the bigger concern is for angulation and possible calcification.
Thank you for the support, Ddmarie. I wish you well along your journey. It’s crazy it took 7 ENTs to diagnose yours. I kept thinking that getting a diagnosis is 80% of the battle but I’m learning that’s not the case. Because then you have to find a surgeon that will operate. And they all have their own standards of what they’ll operate on. Some will operate if they’re calcified, some won’t. Some say they have to be longer than 3 cm, etc, etc.
So sorry that your time was wasted like that! You are right, ES is a known cause of GPN so why he didn’t acknowledge that idk…Did he offer you any nerve pain meds at all? I think that it’s given a brief mention in med school, that’s all, so not taken seriously, but why it’s seen as controversial I’m not sure- maybe because sometimes doctors in ignorance only remove the tip of the styloid so the surgery doesn’t help, & it reinforces their idea that ES isn’t real?
It’s so hard when you get geared up for an appt & then get no help, I can understand how frustrated you must be…can you get a referral to one of the doctors on our list? Sending you a hug
Thanks for your support, Jules. I know many others have had this same experience, multiple times.
He didn’t offer me anything other than the recommendation to follow up in my geographical area. There were multiple errors in the report. He mentioned medications that I’m not on, mentioned a test that I didn’t have. In one spot he mentions elongation, in another spot he mentions normal length. Never mentioned calcification at all. It was a hot mess.
so difficult…re the elongation/ calcification, it’s not always clear whether the styloids themselves are elongated or if the ligament at the end has calcified & it joins together, so I wouldn’t worry too much about that, unless there’s calcification part way along the ligament or at the hyoid end. Would’ve hoped for some suggestions of any medication depending on whether you’re already taking any at least! Onwards & upwards as they say
I honestly don’t know what I would do without this group ! I really can’t say that enough! I’ve learned everything I know about ES, from here. And I apologize for not being clear that number if doctors I referred to was not just ENTs I saw all kinds of others from orthodontist to a TMJ specialist to a rheumatologist because they thought I had a swollen lymph node in my neck. The was per my first ent dr oy….the immunologist I was then referred to is the one that sent me to my 2nd ent for another opinion and he actually is the one that ordered the ct scans and diagnosed me. I then asked him how often he sees this, ES, he says maybe 1 case every other year. Go figure that would be me. Lol. I have to laugh about some things because If not well You get it I’m sure!
@1speechpick - I am so sorry for your frustration. I went through that as well, I definitely recommend a second opinion. I had both my surgeries done by dr. Yosef krespi out of Northwell Lenox hill location.
Do not give up!
I’m fairly new here, but in 3 months I found out I wasn’t crazy, and experienced the same treatment by 3/4 of the doctors I saw. The worst were neurologists. You need to find a doctor who has done the surgery multiple times. My son was ready to fly me out to the west coast. With this site you can find a good surgeon, my daughter steered me through this site and found a surgeon. One thing a good surgeon will tell you, it may relieve most of your symptoms, but not all. But be patient…Bad pun, my brain does that.
Some members here from what I’ve seen have gone YEARS before they found the right doctor. I could have saved 9 months out of my 2 year nightmare. I’m scheduled for May 17
Do not give up!
So happy that you have an upcoming surgery date!! It will be here soon! I look forward to hearing from you on updates and your brighter future ahead!!!
I’m sorry you are going through this. Many ENTs have never seen ES, let alone the skills to perform this surgery. I was fortunate to have an ENT that attended a surgery inhis residency at John Hopkins. I found a base of the skull surgeon at Stanford university. I flew there and got the surgery there. My ENT said to have the surgery there when I found a surgeon. My ENT also said, the surgery involves going thru “prime real estate”, and you want a surgeon that has this type of experience in the area of the carotid arteries, GPN and facial nerve. To see if your styloids are elongated and calcified, go to a dentist who has a panoramic X-ray machine. That will show them. Good luck
You get it I’m sure!
