Does anyone know of any experienced Md in Orlando, Florida or close by? I have been to a Dr. Tippernini in Altamonte,Springs who says he has done all the ES patients that come to the office which has several doctors but that doesn’t mean he has alot of experience. Very scared!
Hi Miria, I live in Florida as well. Although, I have never heard of Dr. Tippenini, he may be a very good surgeon. Surgeons who even know what ES is much less see it in their offices are uncommon.
I live in Cape Coral,Fl , and my ENT, did my surgery and after a long healing process, I am feeling well. I was my doctor's second patient. I don't recommend going to an inexperienced doctor, but I had one advantage. My ENT also has/ had Eagles himself and allowed his partner, no longer operating, to operate on him. I tried to find a more experienced doctor, but did not know about this site and went to a SKULL BASE doctor in LA, my original home state and was treated very arrogantly by a doctor who had never done the surgery. All doctors start somewhere and a lot of us have had to allow ourselves to be the first or second patient for that particular surgery because of our pain and not knowing anyone else. A few of us have not had great results, but some have been wonderfully relieved.
The members on this site have been reporting for about 3 or 4 years now and we are slowly adding experienced doctors to our list. We have only about 3 that we know are truly experienced. Dr.Cognetti in PA, Dr. Samji in CA, and Dr Forrest in OH. That does not mean that your surgeon is not experienced. If your surgeon has done several successful surgeries, then you might want to inquire of him about the successes of the surgeries, the pain recurrance rate, does he do intra oral or external. What of those options would he recommend for you. There are several other physicans around the country that have done well for their patients in other states. Check out the discussion , "Newest Version of Spreadsheet September 18.2013. I uploaded an excel spreadsheet with several names of surgeons. There are even a couple more on that discussion that have been recommended and I have not yet added them to the spreadsheet.
In Florida,if you want more opinions, Dr. Howard Barrow in Cape Coral, Fl is 3 hours from Orlando( in Cape Coral across the river from Ft. Myers). He was my surgeon. He only does intra oral and you could consult with him. Also. Dr Alemar at Cleveland Clinic in Weston, Fl on the east coast just north of Miami. I have also consulted with him after my surgery because I did not feel like I was recovering successfully. He was very pleasant and examined my throat and read the surgical report and concurred that my surgery seemed to have been performed well, with no jagged bone ends etc. He told me that the healing takes up to 9 months. I am doing well, now 9 months out. I am pleased with my results.
You have options depending on your ability to travel, insurance and other personal matters. Usually the surgery is not an emergency and most of us live in pain for awhile or years before getting surgery, so get as much info as you can from the doctor in Altamonte Springs and I recommend more consults before you decide. I will friend you and we can talk privately.
I saw Dr.Raam Lakhani at Watson Clinic in Lakeland. He is wonderful!
Thank you Happy1030…I googled him and will call and get some more info Monday 
Did he do surgery on you and if so how did it go?
Thank you so much Emma for sharing all that info I am newly diagnosed and probably would not have been for a long time if it weren’t for a maxillofacial doctor who originally thought I had trigeminal nerve disorder until I went back with horrible sharp pain on one side of my throat. He sent me to the ENT office that very day to r/o ES (the one I had been to before seeing him due to new tinnitus,ear & face pain,etc) and that ENT said he new very little about it and if I wanted to come back & see his associate he said had had a few patients with ES. He didn’t order any tests and the earliest appt was a month later. Meanwhile I ended up in the ER with palpitations and lightheadedness and when I asked the ARNP to do the CT to see if I had ES and if that could be the cause, he said no. My husband insisted on talking with the Doctor and he agreed to do the 3D CT & it was confirmed. No one in the hospital had ever heard of ES and still no one has been able to tell me if that can cause those symptoms of palpitations. I feel so dysfunctional right now I keep getting them and Dr. Tippernini doesn’t seem to be in any rush to do my surgery as it is such a busy time. I have been waiting 5 days for his scheduler to call me and I am feeling very scared. It seems like if one were having palpitations that maybe it should be addressed quickly. Thanks again for the info, I really appreciate it! I googled them and found the spreadsheet you posted
Hi Miria
It sounds like you may have the vascular form of Eagles. If that is the case the styloid can put pressure on the carotid causing lightheadedness and palpitations. There have been others on this site that have suffered with those symptoms too. I’m sorry that you are going through this. I hope you find a surgeon and get relief soon.
If you go to the main discussion page and search palpitations you will find others with these symptoms
I am not sure but maybe a neck collar could help position your neck and keep the pressure of the styloid off whatever it is pressing on. I have worn one when my symptoms have gotten bad but it was more neck discomfort for me
Polly
You may want to try consulting with Dr. Alemar at Cleveland Clinic in Weston, Fl if you can't find a way to Philadelphia, PA. My first choice would be Dr. Cognetti in PA or Dr Samji in San Jose. We have more information on them.
If you have vascular then you would probably want a doctor familiar with the external surgery. I cannot definitely recommend Dr. Alemar but I do know that he does the external surgery which allows him to get a better look at the styloid and closer to the skull and can see what is going on around the carotid. I do know that one of our members had surgery with him. His was a second surgery and he had many symptoms, but he still has one crushing headache pain left. His eagles was brought on by injury so he could just have a permanently damaged nerve.
I do know that the word is that Dr. Alemar has done more than 30 Eagles surgeries, which we can't verify. I can verify that he is nice to deal with and that his staff were also nice when I went for a consult after my surgery.
Yes, I had surgery in February. I am much better now but still have some nerve issues on that side of my face. I notice it seems worse when I am tired. Other than that I feel so much better. My styloid was 2.5 inches long and pressing into my tonsil. I could feel it in the back of my throat with my finger. That pressure and pain are gone.
Dr. Lakhani listens very well and did not treat me like I was crazy which also happened to me. I also have a thyroid issue
other Doctors assumed that was the problem. I also have a friend that had Eagles and he did her surgery about 3 years before mine. I would recommend him to anyone. He is an ENT Plastic Surgeon. Everyone in his office is just like he is and he has seen some other friends for different issues and everyone trusts him. He makes you feel secure without sounding
conceited.
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I read Emma recommended going to the EAST side of FL. Is there a good doctor there? I'm at Southwest FL, my ENT is not an expert with this syndrome, he's more like a guesser, that's it. Pain is unbearable and when Chronic Migraine attacks pain has no mercy on my. MY LIFE IS MISERABLE DURING THOSE PAIN EPISODES.
Called Dr. Alemar’s office to set up a consultation…earliest is Jan 20th but they are going to call me if something comes up sooner. Only problem is it’s out of network so likely big $$$ if he does my surgery…it will be worth it though. I like that he has done that many surgeries Emma if that is correct. Ronnie I would try to see someone else if you can…this is too important to be guessing…maybe Alemar???
good luck to you Miria. and Ronnie and Happy1030. Happy, I will list your doctor on the next spreadsheet if you think he is good.
Ronnie, Badeagle had a re do surgery by Dr. Alemar, he is a skull base physician. Badeagle still has a nerve damage issue, but his first surgery left him with lots of pain. Dr. Alemar helped him a lot, unfortunately, not 100%. He is the only member with a report. I did go see Dr. Alemar about 10 weeks after my surgery and he was very thorough and told me that my doctor had done everything correctly(no rough edges left to my styloid, taken a large enough part etc). He took time to examine me and completely look at the file I gave him, He and his staff were pleasant. He told me that healing takes up to 9 months but he would be available to me if I needed further help. I am now 9 months post op and I found out that the rest of my pain was due to my TMJ bite guard needing an adjustment since my styloid was removed. He is reported to have done many ES surgeries but I cannot verify.
Ronnie, You live in Cape Coral. You can easily see Dr. Howard Barrow. He had Eagles and he did my surgery. I was his second patient and his partner(no longer operating did his.) Dr. Barrow KNOWS Eagles and does not dismiss your pain. He is a start. He will only do intra oral and he will defer to someone else if your surgery is not successful, but he will not dump you and say too bad. He told me that he will help me with any referral or tests I need if I need another surgeon. 9 months out and I am good. Dr. Barrow is right in Cape Coral, my home as well as yours.
This is so helpful. He'll be on my to do list first thing in the morning and I'll let u know. Thank you so much. Got his address through Google, right on Viscaya, know exactly the place.
Happy1030 hey I’m just seeing your post about your surgery. I hope you keep recovering and your nerve issues get resolved :)) I need to call dr. Lakhani too maybe he is in my network & he is fairly close. I know what you mean about the dr’s thinking your crazy they have been blaming my palpitations,migraines & pain on anxiety & that only gives me anxiety. Now I have a diagnosis and I am really ready to try & get my life back & that’s another struggle :(( I thank all of you for your help and sharing your experiences. I hope at some point I will be able to help someone.
It is all about us helping each other. We know our bodies better than anyone else and know when something is wrong. Follow your gut! I believe my friend having it before me was a message to let me know what was going on. She led me to my Doctor, without her I don’t know what would have happened. The irony is we are both nurses. It also made me realize how a patient can be treated…and some Doctors like to medicate. In this situation that won’t help very much! Good luck to you. Keep in touch.
Dr. Lakhani is awesome. Very understanding and attentive. I would recommend him highly!
Happy1030, where is Dr Lakhani, how are you doing, I am preparing to update my list of doctors.
Ronnie, How are you doing? Did you find someone.
Dr. Lakhani is in Watson Clinic in Lakeland. I am doing pretty well…still have some nerve issues and TMJ issues on that side. So much better after surgery!
okay keep us posted.
Hey @emma, did you mean that Dr Barrow is both a patient of Eagle’s and also a surgeon or did I misread that?