As you know, I'm putting up with the Eagle like most. I want to be sure I'm making the right decision if I move forward with the styloidectomy.
Can any of you who have had the surgery relate your positive and negative outcomes? I'm most afraid of loss of the following functions:
1) swallowing food and liquids
2) speaking normally
3) speaking with raised voice (I'm a classroom teacher)
5) applying suction, like to drink a smoothie through a straw
6) applying pressure, like playing a musical instrument
Right now, when I try to sleep on my left side, I can hear the blood rushing in the right side of my neck and it worries me. I figure I have only limited time before I must find a surgeon and move forward with surgery. I haven't had much pain lately, which is a big plus. But that's because I've stopped doing all things involving negative pressure (suction). That means I don't even drink liquids with a straw anymore. I kinda miss it!
Will I lose function or sensitivity of any kind? Will there be a chronic pain problem afterwards? Have you had any serious complications? Have you had a totally smooth surgery and would you recommend it to me? And if you were very pleased with the result, who and where was your surgeon? I've had bum luck in the past with surgeons thinking they're hot-shots and f'ing everything up.
Fuzz, no guarantees, but most of us don't end up with those problems. That said there is always a chance. I can relate to the bad surgeons. However, the members of this site have posted some surgeons that are really careful and can do the surgery successfully. I have researched every discussion from the beginning of this forum until May 2013. I am going to continue and will be updating my lists.
The surgeons that have successfully operated on several of our members and have been recommended or reported include only a few. Since all we have to go by are the people who we know have had good or bad experiences, I tracked the number of times our members used a certain doctor. So far I can count 5 who have had good surgeries from Dr. Cognetti in Philadelphia and I think several more have seen him or are planning to see him(since May 2013. That is really far for you but one member flew from Alaska for him to do that surgery
The other one closer to you is Dr. Samji.He is in San Jose, CA Check the discussion entitled "Newest Version of My Spreadsheet" and find my excel spreadsheet, if you have excel. If you don't have excel, when I get home in about a week, I may be able to cut and paste some names. I believe if you do your search and read what others say about their doctors, and find one that one of our members has had a good relation with and or an excellent outcome, then you will increase your odds for success. While doing your homework, if you find a surgeon in your area who you are comfortable with and with whom you have your surgery and it is successful, then please let us know.
I've had 3 Eagles surgeries and have had no problems with the areas you mentioned.
I've had one totally smooth external surgery that cured my problems on that side and was a relatively easy recovery. That was with Dr. Samji in San Jose, CA.
I had one external surgery that was a very difficult recovery pain-wise and did not get rid of all my symptoms. That was at the cleveland clinic in cleveland ohio.
My first surgery was not too hard recovery-wise, but it was an intra-oral procedure that I had to eventually have redone because it didn't cure all my symptoms. That was done by a local surgeon here in Hawaii.
I couldn't sing, speak normally, or especially speak with a raised voice- but that was all before surgery. I also had trouble swallowing for a short while before surgery.
I would read a children's book to my kids and have to give up after a page or two, because I'd completely lose my voice. I had to travel for surgery and when I tried to talk to my kids on the phone before surgery, they couldn't hear me and I couldn't muster up a big enough voice to speak on the phone to them.
My surgeon thought there was no chance that my voice problem was related to eagle, but it definitely was. My voice came back completely right after the surgery.
I didn't have any problems with any of the things you listed after my surgeries. My first surgery was a piece of cake (at least compared to my expectations) but my second surgery had a slow recovery. I can't remember, but I think it took about 6 weeks to feel results, but they were great results. 5 months later, I've just today had my first bad day of "eagle" pain. I'm praying that it's just inflammation or the bad weather and that it's not a sign my symptoms are coming back.
Even if my symptoms come back (please, NO!!!!) I would still be grateful for the relief I had. The break has been heavenly. My excellent surgeon was Dr. Cognetti in Philadelphia PA. From what Heidemt says, I think I'd consider Dr. Samji if I needed another surgery. It's really tough to fly from one coast to the other with a painful condition like ES.
From my experience, I'd definitely recommend surgery, but with an experienced surgeon. Best wishes!
I have less painful symptoms when I have any kind of inflammation, like allergies causing sinus issues. I have not had a cold yet. I have been using Flonase regularly for one month in April , now one spray every few days, and it seems to keep the allergies at bay and keeps symptoms from coming back. I only had the intraoral and I believe one day, I will need the external because I still have the ear itching. I know it is probably calcified near the skull base because I can feel the pressure. Will be seeing my ENT in a month or so and ask if there is any other reason for the pain in that area. I don't have any symptoms that would make me want or need surgery at this time, though, more just an annoyance from time to time. Keeping my options open.
Hope you are not getting the pain back again. I will keep you in my prayers. Also, hope your other problems with back and neck , I think? are being resolved.
You're so kind, Emma, thank you. I will pray for you, too. Like you, (I think), my symptoms are not currently bad enough for me to seek out surgery. In fact, I think surgery would be counterproductive, because it's probably scar tissue pressing on my nerves now. But it's really pretty mild right now. I just had one day when it was really bad and gave me a good scare. I'm wondering if I may be provoking it with my neck PT exercises.
I have 8 herniated discs pressing on my spinal cord, but they don't recommend surgery. I am doing about 4 hours of PT per day to keep my pain down. It's working, but unfortunately the improvement seems to have reached it's peak.
Really, I think my back and neck pain together don't compare to Eagle syndrome. I pray that none of us ever has a recurrence, and that those still searching find help quickly.