Need hope? Maybe my story can bring you some. :)

General
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Hi Everyone,


I was a regular on here for a long time as I worked toward a diagnosis, then found a surgeon, then had both sides external surgery done. I traveled from the West coast to the East to Dr. Cognetti in Philadelphia. The trip was tough and I paid for travel out of pocket, and it was all.... WORTH IT! :)

I also came on here a few times during my (seemingly long?) recovery, often with doubts as to the success of my second surgery, or worried my ES was coming back.

From what I've experienced lately, I think it gets better and better. Now I get occasional tiny ES symptoms only after a day of very hard physical work, and even that often doesn't set it off. Maybe I get a tiny reminder about once every two months? It seems less and less frequent still. I think it will eventually go away forever. At least, it's looking very promising.

My scars are also so subtle that I have to point right to them or people can't immediately find them even when they're looking for them. I'll post some pics. Remember, the pics are very close up, and focused right in on the scar. I'm not posting a more distant picture because I'm a freak about online privacy, but I can assure you that from a normal distance they're barely visible. Any doctor who has ever seen them has gone out of their way to point out what a nice incision it was. I think Dr. Cognetti is very skilled in this area, as well. So, in my experience, he'll fix your symptoms and make it hard for anyone to ever guess you'd even had a surgery. Not bad!

Notice that the scar is about the size of the neck creases- very, very subtle.

Not that that is the most important detail when you're in pain and severe discomfort- I remember telling Dr. Cognetti that he was welcome to slice my entire neck wide open if that's what it took to get these evil bones out. Heck, I remember being tempted to "operate" on myself.

Anyway, I wanted to let you all know that I think of you often and that there is hope for you. Hang in there!

Love,

Eagleheart (moniker because I also had "heart" symptoms with my eagle syndrome, including chest pain, POTS and trouble breathing)

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I had my surgeries in November 2012 and March 2013.

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Oh,I also wanted to mention that ever since I started applying lavender oil (diluted in coconut oil) to my scars, the scars seemed to have disappeared even faster.

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Thank you for sharing your experience! I am awaiting my 1st (external left side) styloid removal surgery on 7-22-14. Can you tell me what to expect post op? How much pain? What limitations in neck movement? Neck brace? Did you have a drain in your incision initially? When were you able to return to work, driving, lifting etc? My surgeon is Dr Bumpous, ENT at U of L in Louisville,KY
Thank you!

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Hi Mare,

My two operations (one per side) were totally different as far as recovery, and I think that was my fault. The first surgery had an extremely easy recovery. I immediately felt better right after I came to after surgery. I could tell the evil bone was gone and I felt incredible. For the first time, my symptoms were one-sided. I rested up just in case and took it easy, and I really don't remember much pain at all. I think, if I remember right, that there was pain on the incision, but it just felt like any time you have a deep wound or cut on your skin- sore, no big deal.

Then, with the second surgery (same surgeon- Dr. Cognetti,) I decided that I should use my recovery time to hang out in Philadelphia and do the tourist thing- alone by foot! And, I got lost and ended up walking for miles. I had a very nice time, and I felt fine the whole time I visited the Liberty Bell, ate my Philly sandwich, etc. Then, a few days later, my recovery went south. I had tons of pain, not just incision pain, but "eagle syndrome" pain. It seemed like the surgery hadn't worked. It went on and on like that for a very long time, showing slight improvement little by little. A few times I worried that the surgery had been unsuccessful. I think, looking back, that it was my fault for not taking the recovery seriously. Please take it easy after surgery!

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Thanks for that hope Eagleheart. I had my surgery two weeks ago and was feeling wonderful the first few days then, like you said things went south but its good to know that it'll get better.

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Thanks for the update, glad to hear that you're doing well! I can get over a scar on my neck, but getting over a tombstone is not so easy...and yes, some days it feels like we're dying, right???? I have said the same thing to my doctor, "cut my throat and fix me or I will cut it myself!" I also have had some heart issues, rapid sudden heart racing and occasional pain. Been to heart doctor and it all looked fine!

Hoping you keep doing well! That's very encouraging as I wait on my surgery.

lizajane

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I'm so sorry to hear that you're going through a lot of the same things I did, Lizajane. It was horrible. I really hope and think that there is a light at the end of the tunnel. I'm doing so much better now, and I hope you will soon feel the same.

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Hi Eagleheart,

I am in about the same place you were a year ago when did everything really start to feel “normal” again? I had surgeries in March left and April right felt great for awhile then started with flareups at about 4 months now feeling better still but getting all those sinus ear issues progressing and the fatigue is returning not to the point of weakness but to the point I just want to lay down and not move!

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@Lifelongeagle how are you doing now?
@eagleheart how are you doing now?

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Hi Cupcake, wanted to see how you are feeling now after your two surgeries with Dr C? I truly hope you are feeling better and you stomach issues have lessened.

As Im considering having surgery with Dr C and also have severe teeth clenching issues over last few years with stress, I would be grateful to know if surgery has helped with your pain and clenching?

I am finding by the end of the day, I feel a strong aching in my jaw on both sides, the sides of my neck also hurt and now finding I am having migraines. Any feedback or advice you could provide would be really appreciated. xx

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@Vkossa hi! I am so sorry u are going thro this too! Make sure to treat ur teetth clenching tmj issues as well. I got am orthotic appliacne and no longer have any jaw issues. I did that before eagles surgery. I am hanging in. A lot better since surgery. My stomach has been up and down. Since surgery 1 month i had 3 good days. Next month i had 2 weeks good days. Going onto 3rd month now. Before surgery i had no good stomach days. So im hoping its improving. My migranes were caused by eagles. Was having daily severe migranes. Since surgery ive had 2 headaches since surgery in june right side. So its an improvement. Ive had some nerve pains come and go in neck head and face. Im praying its just healing pains. I hope this eagles never comes back. I highly recommend surgery. Lmk how u make out. Hugs and prayers xoxox

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That’s wonderful news, Cupcake, so glad that you’ve seen such big improvements! God Bless :grinning:

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Thank you so much for your response and advice Cupcakes. Really happy that you are improving. Hang in there, this is trying but you are now on your way to healing.

I’m getting an orthotic appliance made over next few weeks as it seems I have both tmj and ES. I’m it good to know that it helped you too.

It has been a real struggle over last year and a half both physically and emotionally through this but trying to keep positive. This site and sharing has been a blessing.

Sending you all my well wishes xx

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I’m so glad you’re finding the support you need here, Vkossa! We’re always available for you - good days or bad!

:hugs:

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Thank you so much Isaiah, you are an amazing person and have found great comfort reading your posts to members. :pray::heart:

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God has given me this opportunity to help people even if it’s “from afar”. I’m so thankful to be able to do this!! Your input & support of others has been wonderful as well, Vkossa!
:sunflower::tulip::rose:

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@Vkossa u are not alone. Ive been going thro similar experience. It is very depressing. But when u are going thro hell- dont stop. keep going. Better days are ahead. :two_hearts::pray:t2::sparkles:

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Thank you so much Cupcakes. I have good days but also some quite emotional. You are right, we need to keep pushing forward.

I found your journey inspirational. I felt for you too. I know how you have felt and had similar events leading to onset.

I hope you feel better and better each day, hang in there too and give time for your anxiety also to heal.

Sending you all my blessings and prayers xx​:relieved::pray:

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Vkossa
I got TMJ symptoms about the time I was diagnosed with Eagles. I got a TMJ, splint and it really helped with the facial pain. Now 7 years later and 3 months after my second surgery for Eagles, I have not needed the TMJ splint since the night of my second surgery. So, get the TMJ Splint, it can give you a lot of relief, but do not be surprised that if you have external surgery, you will not need the splint. After my first surgery, my splint did not work and I needed a second splint. However, my jaw and ear never got completely well and a lot of other stuff got worse. My styloid started to grow back. Once I had the external surgery, I do not suffer from TMJ pain. It must have been the Eagles. I can also chew on that side. Could not do that for years.