Both types of surgeries have good and bad points. I think the most important thing is to get more of the styloid out, but there are actually lots of people that do fine with just some of the styloid removed. So maybe go back and read past discussions. There is a lot of information over the past couple years in these discussions. Then make your own decision based on your own personal situation.
I new here just diagnosed and I am still trying to figure things out for myself-a lot of issues. I won't go into that now. I will tell you I believe in miracles and I will be praying for you. Just know you are in my thoughts!!
God bless you sweetheart!!!! Thank you for your prayers & please know that I will do the same for you!!!! I'd love to stay in contact with you in regards to your diagnosis & the entire process on your end. Please do keep me up to date, let me know how its going & please know that I will be coming back on here & sharing in regards to anything I learn over these next few weeks that might be helpful to you or someone else... Once all of this is behind me, i'm going to try my best to do something major to raise awareness about this condition so that nobody else ever has to be clueless about this condition as I was for 7 years... Nobody should EVER have to go through what I & a handful of others have gone through. It could almost bring me to tears knowing that I could have had this resolved nearly 8 years ago had the ENT doctors I saw at the time been aware of the condition. Or maybe they were aware & simply wanted to make money off me from various meds/additional visits/etc LOL... God only knows, but I know all things work together for the good no matter what! Thanks again sweetheart & please keep me updated once again. I'll be checking back in quite often over these next few weeks.
-eaglewontbeatme
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shoppergirl said:
I new here just diagnosed and I am still trying to figure things out for myself-a lot of issues. I won't go into that now. I will tell you I believe in miracles and I will be praying for you. Just know you are in my thoughts!!
You don't have to worry about sharing the names with me; I was thinking that others might be familiar with them. My Dr. was Neal Futran at the UW medical center in Seattle. Great physician. You will have to take a deep breath and just remember how good you will feel when this is over.
I've been looking at Eagles articles and just saw this::
National Journal of Otorhinolaryngology and Head & Neck Surgery, Vol. 1(10) No. 3, December 2013
Conclusion
External trans-cervical approach is better procedure than
intra-oral approach in excising the elongated styloid process
because of better exposure, less operative time, less blood
loss, cost effective, can be operated in high risk patients and
greater length of styloid process can be removed.
However, I'm sure if I continue looking, I'll bet I could find an article that says something different. Just an FYI.
Well, It would be interesting to know details about the study. Going intro-oral allows the dr. to also remove tonsils which harbor a lot of nasty stuff in adults. I am an advocate for intro-oral just from what I have seen. But, it all depends on the individual.
Your words are so comforting... Thank you! So true, that is exactly what I will do... After all of the suffering, this will finally be behind me... What a relief & what a blessing... Took alot of hit & miss experiences with various doctors, but finally here we are!
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Ladygw said:
You don't have to worry about sharing the names with me; I was thinking that others might be familiar with them. My Dr. was Neal Futran at the UW medical center in Seattle. Great physician. You will have to take a deep breath and just remember how good you will feel when this is over.
Thank you soo much for taking the time to look that up!!! It really means a lot, especially with me still being somewhat on the fence about which route to take. I'll be posting an update in a few moments, but as these next couple weeks approach these are the times when I need as much info as I can get so this is extremely helpful. Thank you, thank you, thank you!!!
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heidemt said:
I've been looking at Eagles articles and just saw this::
National Journal of Otorhinolaryngology and Head & Neck Surgery, Vol. 1(10) No. 3, December 2013
Conclusion
External trans-cervical approach is better procedure than
intra-oral approach in excising the elongated styloid process
because of better exposure, less operative time, less blood
loss, cost effective, can be operated in high risk patients and
greater length of styloid process can be removed.
However, I'm sure if I continue looking, I'll bet I could find an article that says something different. Just an FYI.
Hey all,
I have another update, but first I wanted to say that you guys are really making me feel so much better. I can't thank you enough!!!! Please know that once this is behind me, i'm going to continue coming on this site to encourage/help others just as you all have encouraged & helped me. Some people put certain situations behind them & sadly never think about helping others who might end up going through the same thing, & I definitely don't want to be one of those people. As mentioned, I want to do everything I can to “pay it forward” by helping someone else & more than anything I want to come up with creative ways of raising awareness about this condition so that the next singer/vocalist/lecturer/etc. can be educated about this condition & have it in the forefront of their minds whenever they experience similar symptoms... Can't stress how much I wish I had known about the condition 7 years ago, but maybe that's my purpose in life: To help others be more informed about this condition so that the next person doesn't go through what I went through. Only time will tell, but I truly appreciate you all once again… Thank you all for being so kind/caring/understanding.
With all of that being said, here's the update following the events of this morning. Both schedulers (for the two doctors) called me back today... I'll try not to make this too confusing: It turns out that the doctor who does the procedure EXTRAORALLY can get me in next week for the 1st surgery... The doctor who does the procedure INTRAORALLY says he wants to see me before scheduling surgery (for what I don't know) & the earliest his scheduler claimed he could see me was 12/23... Of course none of this can be easy & there has to be added drama in my case lol but here's some REALLY good news: I checked some info last night & it looks like my insurance will actually carry past Feb... So that makes things a little better... Actually, let me be honest: Thank you JESUS lol huge weight off my shoulders... But I still have the auditions that month, thus i'm still trying not to push it that late if I can avoid it... Either way though, i'm just gonna deal with the cards i'm dealt... Yea the auditions mean alot to me, but more than anything I want to know that my surgeries will be covered via insurance because there's just no way I can pay for them out of pocket... In other words, if I have to miss the auditions because my 1st/2nd surgery ends up being scheduled that month [or right before/after that month & i'm still in recovery mode], i'll find it in myself to be ok with that knowing that at least the surgeries will be covered & [as a result] this thing is still going to be resolved)...
Out of anxiety, I scheduled the 1st surgery for next week (with the doc who does it EXTRAORALLY) over concern that I could be stuck waiting until March/April if I wait until 12/23 to have that final meeting with the other doctor who does it INTRAORALLY... I'm grown thus I am quite used to making my own decisions... Regardless, often times I DO consult with mom when it comes to critical situations I come across & after talking with mom, she convinced me to try & see if the INTRAORAL doctor can possibly squeeze me in to meet with him before next weeks scheduled 1st surgery with the EXTRAORAL doctor (mom, like me, has been concerned with the possible damage to the smile muscles/nerve & she also knows I would rather not have the external scarring)... Bottom line is that the INTRAORAL doctor isn't telling me anything over the phone (only in person), i'm at the mercy of his schedule & i'd like to at least hear what he has to say before finalizing everything with the EXTRAORAL surgery... In the end, I called the INTRAORAL doctors scheduler back to see if they can get me in to meet with him earlier than 12/23... The earliest (as luck would have it) turned out to actually be the day before the date on which the 1st surgery was scheduled with the EXTRAORAL doctor (next week, which is a little too close for comfort as the dates are back to back)... So she put it on that date & now I have a call in to the EXTRAORAL doctors scheduler to see if he can instead schedule the surgery (tentatively) on last day of the month as he's booked the week after next... Would rather not push it that far, but at least that way I still have time to meet with the INTRAORAL doctor one last time & hear what he has to say (so i'm not having the "woulda/coulda/shoulda" syndrome along with the eagle syndrome [one is bad enough lol])...
As mentioned, the INTRAORAL doctor just won't tell me anything over the phone, but here's my guess: I'm no expert, but he very well might tell me that because my styloids are broken in parts, he may not be able to get all of it out & I might need additional surgeries via the EXTRAORAL method in the future (which of course isn't something I want to deal with if I can avoid it)... It could be that, or he could be answering my most recent question I left with his nurse where I had inquired if he does the procedure ENDOSCOPICALLY (which, from what I have read, has the greatest success when it comes down to A. getting out as much of the styloid as possible AND B. offering greater visibility when doing the INTRAORAL approach [which is CRITICAL when going the intraoral route as far as safety is concerned])... I could be wrong on both counts, but that's what i'm guessing (what else could he possibly have to tell me?)... I can't rule out the possibility that he probably hadn't completely looked over the CT scan images until just recently (after his scheduler told him I had called in to schedule surgery) & now he's seeing the separations & having second thoughts about going the INTRAORAL route... If this is the case & he's willing to openly share that with me, I will truly appreciate & respect him for doing that (in addition to the fact that he was the first ENT doctor to advise me of this condition that I never knew existed)... No doctor is perfect, each will have their pros & cons (rushing you out the office, misdiagnosis, etc.), but at the end of the day I feel like i'm so close to the finish line & regardless of which doctor I go with, this thing is FINALLY going to be resolved by February or (worst case) shortly after.
Up until this morning (following last night’s realization that my insurance would still be active past Feb.), I had all but made a FINAL/last-minute decision that I would have the procedure done INTRAORALLY (preferably both sides at once), see how it goes, then if problems arise in the future we go the EXTRAORAL route... Baby steps, as they say, going the least invasive/traumatic route with crossed fingers: Now it’s basically up in the air due to the INTRAORAL doctor wanting to meet with me before scheduling surgery (for an unknown reason) & my decision is pretty much dependent on what he shares with me on next week... Unless someone comes on here & shares some additional enlightening information, that meeting next week will most likely be the deciding factor as far as which one I go with... I'll keep you all updated, & please feel free to share any thoughts/suggestions as next week approaches... Thanks so much again guys/story developing...
-eaglewontbeatme
This is good news...a lot of news but your are moving in the right direction. I am excited for you it appears doors are being opened. As I stated before, I can not offer a lot of input as I am just going through this myself but I lifted you up in prayer and yes it does work!!!! I wish you all the best and will continue to look for all the good news you will be sharing with us!!
Hi all,
Had very little sleep last night, so i’m exhausted… Nonetheless, the dramatic saga continues & I wanted to make sure I posted this update in regards to where things finally stand as of today... I had one final pre-surgery "follow-up" appointment with the INTRAORAL doctor last week (who, mind you, was the first doctor to bring this condition to my attention)... In summary, the appointment didn't go so well & i'll try to explain why, in hopes that this can help someone else going forward...
As you all probably already know (after reading my initial post/novel), I was undecided on which surgical approach to take (intraoral vs extraoral).... In addition, I had quite a difficult time speaking with the INTRAORAL doctor following our ONE "post-ct scan" phone call, & getting some basic questions answered seemed to be very difficult as his nurse was not relaying my messages or returning my calls. As anyone facing a major surgery would do (especially when facing TWO of them), I decided to get a second opinion (which came from a doctor outside of that practice) in addition to a THIRD opinion (which came from a doctor HE highly recommended who A. happens to work within the same practice as the 1st doctor and B. has successfully performed the ES surgery several times EXTRAORALLY [which was not the method I preferred but ultimately seemed to be the most successful method as far as getting out ALL of the styloid]): I didn't want the external scarring (that would surely come with the extraoral approach), but I also didn't want to take a chance on either styloid growing back (which would be possible if the intraoral approach didn't remove enough of the styloid). So as one might imagine, all of the above made things quite complicated & stressful for me in regards to making a final decision (which played a major role in my decision to get additional opinions)...
Even though I got a second and third opinion, it yet still was my hope to go with the first doctor since HE was the one who told me about the condition to begin with and HE was the one who would perform the surgery using the INTRAORAL method I had preferred (assuming that this method would be effective): That was my hope, but when you're sitting here not having answers to important questions &/or not knowing if you'll still have medical insurance by the time he has schedule availability (because his nurse is slow to return calls &/or because he only wants to communicate face-to-face/during a scheduled appointment), you set up a "backup" plan just in case (at least when you think like me)... So in my case, I scheduled the 1st of 2 surgeries for the end of the month (as mentioned) with the EXTRAORAL doctor & the outcome of the final appointment with the INTRAORAL doctor on last week would ultimately determine whether I A. keep the scheduled surgery date with the EXTRAORAL doctor or B. cancel it & instead schedule surgery with the INTRAORAL doctor: That was the game plan, but sadly things fell apart…
On the day of the final appointment with the INTRAORAL doctor (which was scheduled for 12/9/14 around 3PM), one of the nurses (from the practice that both doctors work in) called me VERY early in the morning while I was still asleep. She left a message & in short, she stated that she saw in the system that I had surgery scheduled with the EXTRAORAL doctor, & for this reason she would take it upon herself to cancel my 12/9/14 appointment with the INTRAORAL doctor... As mentioned, I was asleep when she called, so she basically canceled the appointment without even speaking to me. I happened to wake up about 30 minutes after she called & upon hearing the message, I called in & the office wasn't even open yet (which meant I had to speak to their "answering service" staff). I explained to the phone rep that I did NOT want the appointment canceled with the INTRAORAL doctor. She said she would let them know & to make matters worse, I had a meeting already scheduled that morning which would make it a hassle for me to drive to the office to straighten all of this out in person: For this reason, I had mom head to the office on my behalf, but in the end I STILL had to go there because they supposedly didn't have a signed "HEPA" release form from me that would be needed in order to release any info to my mom.
Before going to the office, I spoke to the nurse for the INTRAORAL doctor as my mother handed her cellphone to her. The nurse walked off with my mother’s phone (to a place where my mother could not hear the conversation) & basically told me that the appointment was canceled because they saw that I already had a surgery scheduled with one of the other doctors later in the month. I told her that things were still up in the air & despite the EXTRAORAL surgery being scheduled, I still was unsure that I wanted to go that route because I still had UNANSWERED questions from the INTRAORAL doctor that he refused to answer over the phone (questions that presumably would be answered during the appointment that one of her co-workers had just canceled). In the end, she became belligerent & advised that the INTRAORAL doctor would gladly meet with me, but he would no longer be willing to do the surgery... WOW (yes, she really said that :-/)… As you might imagine, I was livid & despite the fact that leaving home would all but ruin a face-to-face meeting I had already planned for that morning at my complex, I made my way to the doctor’s office to sign this "HEPA" authorization form & speak to this nurse face-to-face.
In the end, I brought in the signed "HEPA" form, I advised the nurse that I did not appreciate the way I was being treated, I reiterated my reasoning for scheduling a surgery with the other doctor (while STILL wishing to have this appointment with the INTRAORAL doctor) & my mother & I sat in that waiting room for roughly 3 hours waiting to be "penciled" back into the schedule to see the INTRAORAL doctor (a process that could have been easily avoided had the staff not taken it upon themselves to cancel my appointment without even speaking to me)...
When I finally got in to see the doctor, he began grilling me in regards to the doctors I saw after him, stating that it's "not normal" to get a 2nd & 3rd opinion & advising me that he saw this as "red flags". While trying my best to keep my composure (at a point when my patience is all but gone), I explained to him that doctor #2 was my second opinion, he HIGHLY recommended doctor #3 for this procedure & despite his recommendation (in addition to me scheduling surgery #1 with doctor #3) I still wanted to hear what HE had to say because A. he was the first one to tell me about this condition B. I preferred HIS approach for styloid removal above doctor #3's approach (depending on the answers to my unanswered questions) & C. This would be the deciding factor once & for all as to which direction I go... I explained to him that despite how much it might look like "red flags" &/or "doctor hopping" (his words), i'm taking what I feel are all necessary steps (especially as a SINGER) so that I know i'm making the right decision because at the end of the day, whichever route I choose will be a decision that I have to live with for the rest of my life: In other words, the DOCTOR doesn't have to live with the end result, the PATIENT does, so don’t blame your patients for wanting to get a second (or sometimes even a THIRD) opinion… At this point, I was 99% sure that I wasn't going to let him get anywhere near my throat, but I wanted to at least clear the air which is pretty much the only reason why I sat in that lobby for 3 hours after he became so sensitive & all but told his nurse that he was now REFUSING to do the surgery…
In my opinion, i'm strongly convinced at this point that in MANY cases, there is at least ONE "downside" to dealing with doctors who have been practicing for a longer period of time: Judging by this experience (along with others i've had in the past), it seems to me that the longer a doctor has been practicing, the greater a chance that they will take it personal if you take it upon yourself to get a second opinion instead of just making final decisions based on their INITIAL opinion... In his case, we're talking 30+ years of practice here, so I get it, but I yet still did not appreciate how my situation was handled & I truly did not appreciate someone canceling my appointment without even speaking with me: The surgery was scheduled with the other doctor at least two weeks prior, so if there were questions, all his nurse had to do was call me (a few days BEFORE that appointment date) & all of this drama (on the DAY OF) could have been avoided.
In any event, by the end of the appointment, I accomplished what I had been trying to accomplish for weeks: He confirmed that he does NOT do the intraoral procedure ENDOSCOPICALLY (a question I had left on his nurses voicemail weeks ago), he confirmed that his approach would get out most (but not ALL) of the styloid, he confirmed that the EXTRAORAL approach is preferred when dealing with longer styloids like mine, & everything he mentioned (in addition to the actions of his nurse) made my decision easy. I truly wish that things had been handled in a more professional manner, but as the appointment came to a close, I thanked him (in tears) for being the FIRST doctor to bring this condition to my attention, I told him that he changed my life as a result (since I have been suffering with this for so long), I shook his hand & mom & I left the office (mom was also in tears).
So there you have it... You live & learn & clearly i'm still learning alot, but I think the moral of the story here is that when you're dealing with doctors (especially ones that have been doing what they do for a considerable amount of years), it is probably better to just let them know IN ADVANCE that you're going to get a 2nd/3rd/etc. opinion AND if you schedule a surgery with another doctor who works within the same practice, make sure that the original doctor knows EXACTLY what is going on & why (even if you have to go there in person & explain it to him/her in person because messages aren't being delivered). Last but not least, be PROACTIVE in asking for the "HEPA RELEASE FORM" on day one so that a parent/relative/close friend can help you out along the way in the event that you cannot make it to the office yourself.
After this 7+ year journey of SUFFERING that I will NEVER forget (especially as far as what took place in these last few weeks), my 1st surgery for EAGLE SYNDROME is scheduled for 12/31/2014 (5:30AM arrival, 7:30AM surgery)... One of the styloid bones will be removed extraorally, followed by a post-op on 1/12/14 & then sometime after that (hopefully sooner than later) a second extraoral surgery will take place in order to remove the other styloid... I think it is natural to be a little nervous, but i'm honestly so eager to get this BEHIND ME once & for all that i'm probably more excited above anything else... WORDS CANNOT DESCRIBE how eager I am to start LIVING again instead of just existing... I have been absolutely miserable with this condition (especially over the last 4 months or so as symptoms have worsened), & I am finally nearing the finish line (God-willing)… Thanks again to everyone for all the well-wishes/support/prayers & please keep them coming! I’m praying that I have minimal scarring, a quick recovery & no complications following the two surgeries as it seems that complications are not unheard of (especially when getting the surgery done extraorally)... I'll report back either on/shortly after my 1st surgery & keep you all 100% in the loop in regards to what I experience during the recovery process & afterwards... STORY DEVELOPING...
-eaglewontbeatme
Wow, sorry that you have had to endure all of this to arrive where you are. I am glad that at least you have your surgery finally scheduled. I am hoping the best for you and you will be in my thoughts and prayers. I appreciate the fact that you will be sharing your information as many of us still don't know how this goes.
Hope you have a Merry Christmas!!!
Take care!!
What a rollercoaster- and that's before any op! It's bad enough being in pain for so long, worried for your future and your insurance without all that extra hassle!
Best wishes for your operation, hope that you have a good Christmas, keep us posted,
God Bless
Hey all,
Posted an update in another thread (had my 1st of 2 surgeries yesterday AM [12/31/14] & it went VERY well)... Here's the link: Bilateral Eagle Syndrome Extraoral Surgery #1 of 2: My day 1 experience/post-op recovery/tips (I put some info in there that some of you may find useful). Thanks again for your helpful advice/prayers/well-wishes & i'll keep you all in the loop between now & surgery #2 (my post-op appointment is scheduled for 1/12/15). Happy New Year & God bless/story developing...
-eaglewonbeatme