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Eagle Syndrome - Online Support Group

Personal responsibility

      We often encourage external surgery as the best way to be cured of Eagles.  We sometimes make it sound easy. Sometimes, many times it works that way. 

I had both the intraoral, a redo of that surgery done externally and the other side externally. I am satisfied that I made the right decision. I am now in recovery and improving. Recovery takes 6 months to 18 months. Sometimes,we even notice improvements happening even longer. Often, we notice some immediate improvements and then a back slide for a few days. Most of the time we notice immediate joyful improvement that just keeps getting better. We are all different. That is what we want for everyone
I think it is important to keep us grounded. Neither surgery is 100 percent reliable. They both have their pros and cons. Intraoral is less risky to nerves and arteries, but not always a permanent answer.
Remember that we try to be encouraging. Please also remember that surgeries can have very serious complications. The skull base doctors are the best, and very brave to operate in very sensitive areas. They never know for sure what they will find. When they work on cancer patients, the decision to operate is often the only chance to live. In our case, the surgery is elective. Make sure you have all the information about the serious complications, rare yet possible. If you cannot accept the possible negative outcomes, please do not choose surgery until and unless you can.
Patients who really need these surgeons depend on them;we depend on them. If you would blame them or try to litigate against anyone trying to help you with Eagles then you have not reached the point of realizing that you have no control over Eagles and that you had the option to live with it.
I say this because I realize we encourage people everyday and I sonetimes feel that we are not clear that the external surgery, though so amazing is also a serious surgery. Please make sure you are a fit for the surgery and the surgeon or move on until you have the right fit.
Always after so much pain and searching, be grateful for those courageous enough to perform delicate surgeries. If you are not a fit, back up, think and wait for the right time. When you are ready, you will feel it.l
I felt it should be said because we always say it is a personal decision. It is. We try to help not harm. We cannot guarantee that our suggestions are right for you,so take what you learn and make sure you find the right answer for you.
We do not know each other, and we do not see the future. We are thrilled to give resources and hope, but occasionally,I fear that our support is seen as a guaranteed solution. We are here to give hope,help locate sources, and help you find your best options. Just know that Eagles cures are not guaranteed.
We walk together on this painful road. I pray for perfect healing for everyone on this road

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Thanks emma; it’s a good reminder that surgery & the recovery has risks & is not simple, & not right for everyone. Wishing you complete healing too- how is your eye?

My eye is seemingly better, today. I was able to suck on a straw today without drooling. I still have to get to the point where I can produce more of the lubrication naturally for my eye, but I see a little progress. Tomorrow is 5 weeks. My smile is still a bit crooked, but I am feeling more like getting out and about. I still need to tape the lid shut if I am going out, just to keep wind and dirt from injuring it, but it hurt less today, so far. Of course, you know that my saying so only means that tomorrow will not be so great. I do not know why I seem to have a bad day after I get excited about a good one, but good ones usually follow soon after. I have a bit of extreme first bite syndrome that almost knocks me over, but it appears to be subsiding. I really want to get back to some physical therapy for my sternocleidomastoid muscles and my neck and shoulders. I now have the muscles working, but they seem very weak. Looking forward to less shoulder pain, I hope. Remembering always 6 months to a year for the conclusion. So thankful for this site and members who were here to guide me over the past 6 years. I have to email about 3 of them because they are no longer on this site. BensFriends is a lifesaver for so many of us.

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I am glad things are getting a bit better. I find that when I have a bad day or two in a row that I get a bit excited as I know a good one is coming! Thinking of you and truly appreciate your sharing the good as well as the bad. It is hard to read about the people who feel great in 1-2 weeks. I am very happy for them, but it gets my mind going that something is wrong with me!

God Bless:)

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Emma,

Thank you for this post. Everything in it needed to be said. It’s easy for me to be overly exuberant & optimistic about the promise of good results from eternal ES surgery because it worked so well for me (albeit it took a year after each surgery to fully recover). Generally, I think people do have outcomes that improve their lives but that improvement does take time. So glad you emphasized that. It is wonderful that some people basically walk away from surgery “cured” in a week or two, but that is the exception not the norm.

I’m happy to read that your eye & face are improving even if there are some backward steps in the process. I do hope you’re able to get the therapy you need for your shoulders & neck ASAP.

I sympathize w/ your First Bite Syndrome situation. I was there & still am some days as that is my one post op reminder of ES surgery that is now my forever companion. It’s a small price to pay to have my ES symptoms mostly resolved & to be able to live my life normally.

I, too, am thankful for this site. It provided me w/ the name of the surgeon who did my surgeries & all the support I needed during my ordeal w/ ES. That’s why I’m still here - hoping to offer the same support, information & compassion that I received, to other ES sufferers & those looking for diagnosis.

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Thank you Emma for your insight I do hope you feel better soon and I am thankful for this group x

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Emma, thank you so much for saying everything in your post. It really made me feel better about walking away. I just saw a doctor yesterday and left not feeling good. Everything he said was the opposite of what I have read here and on Face Book support group. When I asked how many ES surgeries he had done, he looked at me funny and said, “several”. I have phone calls to make next week and try to find someone else.

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I hope that no one is totally discouraged. I do feel that we need to have a certain confidence in the doctor and or just absolutely feel that we have to take the plunge. Also, we are trying to recommend doctors that have been helpful,so I feel a responsibility to clarify that even the best surgeons cannot predict the outcomes.
You are right to continue your search if you feel you can. You may even turn around and choose the first surgeon, but it would not be a hasty decision.

Welcome to this site TerriEllen3.
Check out the Doctors Discussions, we have a spreadsheet that you might find useful of names of doctors we have found. That is what my Personal Responsibility discussion is speaking to: The Doctors are discussions titled " Latest Doctors list 2017" and “US Doctors Familiar with Eagles Syndrome” If you choose the discussions in the Doctors category, you may find some options
These doctors have had some success. You can use the list to help guide you. As you read discussions, you will notice that some have done multiple surgeries on our members. You could say they are favored. They are favored only because they were found early in the start of this forum and we only had a handful of doctors to recommend. They are also very good at what they do. They are not the only ones and no matter who you choose, all of these doctors are not God. I have had contact with some of them. My doctor is a personal friend of one of them and I want us to respect their skills and their limitations. I feel that because I like to match people with a doctor near them that I must always make it clear that these doctors are good but we need be responsible in understanding the risks, which most of us have suffered through willingly with our downsides being far less detrimental than the Eagles, The most serious downsides are rare and I believe that most doctors will not agree to surgery if they feel that you would not be healthy enough or they see a problem, but they still have no crystal ball.
I see you are in Roanoke,VA. I would like anyone who may be located in this area to help TerriEllen3 and welcome her to our discussions

Also, as you will find surgery is the only cure. You may find that some of us have used medications such as Gabapentin, Amitriptylene (exscuse my spelling, I did not spell check) and other things that have helped us along the way, but these calcified bones and ligaments are taking up space and crowding serious nerves and arteries and the medications help but cannot bring a cure. Also you may find that you can only discuss Eagles with certain doctors specifically ENT’s, Head and Neck surgeons and perhaps Oral Surgeons and orthodontists. Even then, many of them may be clueless. Do not get discouraged, we have all been there. Welcome, If you have any questions after reading these posts. Just post a new topic and your discussion will hit the top of the discussion board.

@TerriEllen3 good for you for listening to your gut! I also walked away from a surgeon in Houston. I was to have a January surgery and cancelled 2 days before. He also had not done very many and seemed to have a backward understanding of ES and even the anatomy. I asked him what he would do if he found a nerve wrapped around the styloid and he said that wouldn’t happen…he had never seen that, although it’s pretty common. He also refused to have a vascular surgeon present in the operating room, but claimed he was going to do an intraoral surgery and get the entire styloid out. Said he would have better visibility than by extraoral access (not true). Many red flags like that, so I went in search of a very experienced ES surgeon because I couldn’t waste anymore time and didn’t want to acquire unnecessary nerve or vascular damage. I sent my CT to Drs. Cognetti in Philadelphia and Samji in San Jose and also called Drs. Milligan in Phoenix and DelGaudio (sp?) in Atlanta. Of these 4, Samji could get me in first since he devotes the most time to Eagles patients. He does ES surgery every Monday. I had surgery with him earlier this month on my first side. Cognetti only talks to ES patients once a month, so it was going to be 2-3 months before I could even talk to him and another surgeon, but I know both of them have done hundreds of these. It was a 4 month wait for the guy in Atlanta, but he has also done quite a few. Cognetti and a Samji will do phone consults, which is nice if you’re not in their area. I’m not saying you shouldn’t look for someone in your hometown…I just got tired of looking and wasting time and chose a surgeon that didn’t make we worry about their level of understanding or capability. It was pretty refreshing after several bad experiences with other ENTs :slight_smile: Best of luck to you in your search for a new doctor. Keep trusting your gut. Let us know how things go!

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Just to add the Doctors List has been updated, it’s the 2019 one in the Doctors Info section. If there’s no-one near you, as as emma says a head and neck surgeon could help, otherwise lots of members are now seeing Otolaryngologists/ skull base surgeons. Good luck!

Hi TerriEllen3~

Welcome to our awesome forum. We’re glad you’ve already seen benefit & encouragement from what you’ve learned on here. I second what Emma, redbird773, & Jules have all said. There is great wisdom from experience here.

I have done some research on Dr. Cognetti. He is in my insurance network, and I have heard GREAT things both about his expertise and bedside manner. Now, I see there is a possible doctor in Maryland… which is a little closer to me, but I haven’t heard their names over and over like Dr. Cognetti. Does anyone have any first hand information about Dr. Guardiani in Baltimore?

So, I assume since no one has mentioned Dr.Guardiani, she hasn’t treated any of you guys? I guess I can still meet with her and then make my decision. Thanks for any help anyone has to give!

Hi TerriEllen3,

That is a good assumption. I’d guess about 95-98% of our forum members over the last several years have had their surgeries done by doctors who’s names are on the doctor’s list. Often, when someone has surgery done by a doc not on the list & has good results, that doctor’s name & contact info get added. As far as I know, we only have one female doctor on the list, & she’s in Texas - Dr. Chan-Leveno.

Yes, it’s worth it for you to see her & see what you think about her approach, how she treats you, how knowledgeable she is about ES, how many ES surgeries she’s done & how she would approach ES surgery if she’s willing to do it.

I’m sorry you didn’t get any help w/ your question.

Hi TerriEllen3
I had a video conference with Dr. C and right out of the gate I felt comfortable with him and his approach. He looked at my scan and mentioned details that other surgeons didn’t see. He said that he believes in ES and that surgery would help. He answered all of my questions thoughtfully and with will real compassion.

Dr C. is two hours away from me. Not so bad, but considering I had to ask for help getting back I checked out another doctor closer to me in NYC. After poking and prodding the inside of my throat he said that he was “beginning to believe” that I had ES. He has done many ES surgeries in his career, mostly through the throat (intraoral). His intraloral approach is to take snap the tip off. I asked if he smooths out the broken end. He almost laughed at me - he said its so small that its not needed. The laughter continued when I said that Dr. C has done hundreds of ES surgeries - a laughter backed by doubt that made my skin crawl.

Before the ES diagnosis, I started with a head/neck surgeon in NYC recommended by the ENT - to find a diagnosis. Once the scans were done and ES was possibility he wasn’t convinced until I saw 6 or so other doctors to rule out other possibilities. Once everything else was ruled out he ironically said that he was “beginning to believe” that I had ES. (Is this the standard refrain from surgeons?!?) He said he could do the surgery but he had only done 2-3 in his career intraorally.

My take on all of this is that surgeons don’t like to do ES surgeries. They will do it but their indifference is not comforting. There may be other doctors not on the list that understand what ES is and have a real willing to help - I hope that Dr.Guardiani is one of them!!

All the best to you on your journey.

Thanks! When I asked the ENT I saw in Roanoke ,VA how many ES surgeries he had done, he looked at me funny and said, “Several” I almost RAN out of there. Also, almost everything he mentioned, I had read the opposite. He didn’t like me asking questions; I would have thought that doctors would like well-educated patients; oh well. He also wrote in his doctor notes that if I went to the “specialist” in PA, he would not do my follow up visits. The attitude and the quotes around specialist told me everything I needed to know! I have sent my CT scan and doctors’ notes to Dr. C and am waiting on a reply. I will definitely let everyone know what happens. Thank you everyone for listening

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Yuck. The surgeon I finally found after searching said, “Your husband and you are obviously well educated people who have done a lot research so that’s great.” That gave me great reinforcement for being my own advocate. Do the right thing and be picky. Good ones are out there.

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Good choice, TerriEllen3! Go w/ your gut. Sounds like the doctor closer to home was subtly condescending (or maybe not so subtly!). I hope Dr. C supports you as he has so many others who suffer from ES!!

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