Fascinating! I had 3 surgeries just last year with no noticeable effects, but who knows what is going on long term. I did have Propofol (the Michael Jackson Drug) for all of them. I am 64. I want to get everything done before I am 68. After 70 I will not have surgery unless it is life threatening.
Was there a medical reason for using that drug or did you tell them that is what you wanted. I think that is what i want for this surgery.
I hope that you get somewhere with one of the two doctors youâre seeing! Alot of phone calls to find them! Let us know how you get onâŚ
I have had several conversations with anesthesiologist who have done my procedures. Propofol seems to be the go to drug for surgeries that are relatively short in duration ( like up to an hour or hour and a half). The rest for this is it is relatively fast acting, but also faster recovery times with less problems than inhaled gases.
I have been continuing my never ending search for a doctor in florida and have found some information which might help some here in the sunshine state. According to the MAYO Clinic, â˘Dr. Phillip Pirgousis, Mayo Clinic, 4500 San Pablo Rd S, Jacksonville, FL, (904) 953-2000 is no longer seeing patients for ES. I actually scheduled an appointment with them and at the appointed time, they told me they no longer see ES Patients. Thankfully it was a Tele appointment.
On the GOOD side. University of Miami is has a really cool page where you key in the ailment/illness and it lets you know which doctors at UofM treat it. I was shocked they had Eagle Syndrome listed and have two doctors listed who treat the ailment. When I called they had a third choice available, Dr. Larissa Sweeny also of UofM. eagle syndrome - Find a Doctor | University of Miami Health System
Thanks for that info @tjrusure , Iâve made a note by his name. Are the other doctors on the list for FL not any good for you?
They either do not accept my insurance or require internal referrals from within their system. I will be visiting Doctor Sweeny in November, once I return from visiting with the doctors in Atlanta. Based on those appointments I will determine if and with whom I will be using. (Or going on to someone else)
There is the Hauser neck clinic that can help diagnose and perhaps treat any neck issue. He has a lot of info about Eagle syndrome on his site. He also may know of good people for a referral. He may not take insurance but he does list his prices.
I read about his clinic. He is into Prolotherapy, which in multiple studies have not proven to be useful for virtually any of the ailments it is intended to treat other than the shrinking of veins. My research has led me to believe that it would be less useful than chiropractic or many other alternative medicines which are more natural in their approach.
The advantage to his clinic is that you can get tests with him that are hard to get elsewhere like Transcranial Doppler. Various Dynamic testing. I donât know if he can do the elusive 3d ciss MRI or knows where to order it.
For those in Florida that are looking for vagus nerve testing he does do it.
For example, I did see this in his list of items
âVagus nerve and carotid measurements/Internal jugular vein positional study*â
You donât have to believe in a particular method of treatment to use him for other purposes.
If a person has Christian Health sharing plan they would likely cover some of the testing he does.
Yes, the prolotherapy doesnât seem to help many with ES, the plus is that as @JugularEagle says they sound like they do well with diagnostics⌠if you do go the chiropractic route make sure that they are aware of ES & are careful with that as otherwise quite a bit of damage can be done, although you sound as if youâve done plenty of research yourself so Iâm sure you know thatâŚa pain about the FL docs, will you let us know how you get on in Atlanta please?
Update: So I traveled to Atlanta to meet with Dr. Nelson May with the Wellstar Group and Dr. Delgaudio at Emory University School of Medicine.
The appointment with Dr. May did not go off because he was ill. However, they did get me in with the ANP who would do the exam for Dr. May and then once Dr. May is back on his feet I will do a tele-appointment with him. The exam was very thorough and we talked about the options for ES treatment that Dr. May like to go (either conservative or surgical). Again, I did not meet the doctor but the staff was very nice and the ANP seemed to be very familiar with the condition which was nice.
The next day I had an appointment with Dr. Delgaudio of Emory. This was an interesting appointment for me. I spoke with his PA who did an initial assessment and then took the CT and MRI disc to the doctor. A few minutes later, Dr. Delgaudio walked in and said he was not sure I had ES and that my styloids did not look as big to him as the radiologist said they were. He then went about the task of dismissing all my symptoms as not being ES. To be honest I was feeling a bit disheartened while he was describing the only symptom he considered ES was the pain on either side of my neck. He then said he want to see if he could âeven feelâ my syloids. He gloved up and stuck his finger in my mouth and palpated for it. He had a slightly different tone in his voice after that. He said something like âwell, there it is.â His PA asked if he could âfeel itâ and he replied yes. He transitioned to my left side and seemed equally as shocked that he was able to palpate the styloid there as well. The conversation then changed to what kind of surgery he would preform. He does a trans-oral approach. He stated he would do both sides at the same time and that I would have discomfort, like a tonsillectomy, for the recovery period. He stated he was going to put in the order for surgery and that his office would call me in a week of so to schedule. He said said he could probably do it in 2 to 3 weeks. Talking with his staff, he does a lot of these. I am wondering if they do them so they can let their resident students see the procedure. I confess I was a little put off by the comment that the only symptom of ES is pain. But I do know each doctor has there on basis for making diagnosis of ailments.
Have you looked at your CT scan via a 3 d viewer like Radiant? Personally, i wouldnt let that guy operate on me until i was sure that i didnt have Vascular Eagle syndrome. Maybe yours is an easy case that can be done via his method but i am not sure he is equipped to recognize a complicated case since he only recognizes pain in neck as a symptom.
Yours are longer than mine. My local Ent surgeon who does this surgery declared i didnt have eagle syndrome without even examining me or even making an appointment with me even after the neuroradiologist pointed to the issue.
I have an another appointment schedule in a couple of weeks with the University of Miami. I will see what they have to say. I am amazed that some doctor seem to dismiss ES so easily and do not appear to have even read the studies posted in the medical journals. My search continues.
One of the weird statements made to me that i pushed back on was that the Ent surgeon had done many intraoral surgeries and had discovered surgery didnt help the symptoms and so i dont have Eagle Syndrome. I was literally stunned into speechlessness and took a few moments to recover. I still am not over the ridiculousness of that statement.
I meet the classic definition. And I most certainly have a styloid compressing my jugular as pointed out by neuroradiologist
The amount of ignorance about this disease astounds me with every story.
Iâm sorry that you didnât get to see Dr May, I hope that you do get to speak to him on a telehealth appointment soonâŚ
Lots of doctors donât do bilateral surgery as there can be alot of swelling, I would think that doing both sides intra-orally would be a really grim recovery! I think youâre wise to get some other opinionsâŚ
An interesting note from my visit yesterday: âEagleâs syndrome is a very specific condition where the pain is right under the jaw laterally below the ear made worse with chewing, tongue protrusion, head turn, and swallowing. Reason due to stylohyoid ligament loss of elasticity that produces pain with these particular activities.â I guess to this doctor, that is all the Eagle Syndrome is, nothing more, nothing less.
That is very specific Shame he doesnât read everyoneâs experiences on here!
I totally agree with these statements. Weâve found there are a number of doctors who are highly opinionated about particular symptoms needing to be present if an ES diagnosis is to be made. Iâm really glad Dr. Delgaudio had to eat his words after so confidently pronouncing he didnât think you have ES. I do agree w/ @Jules that bilateral intraoral surgery would cause quite a painful/miserable recovery probably for a month or so. Iâm also glad youâll have a telehealth w/ Dr. May & an upcoming appt at University of Miami.
Without looking back, I donât recall what your primary symptoms are. Would you please share them again.