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Beautiful. Just beautiful!

LAD said:

I am going to go ahead and share it because I don't know when I'll be on again. If its something you want deleted.. just say so..

Sorry about grammar and spelling errors, I wrote this during a release of emotional excitement. I have not yet sent this to my doctor because I think its too honest.. or to much information period.

I am blown away that this was inside me and even more so at what it did to me. I pray for blessings to you all each and every time I pray. What has been done for me is nothing short of a miracle in my eyes and Dr. Gillespie is the Angel that saved me.

I expected to feel better but never imagined I’d be brought back to life! This gift that has been given will never be forgotten. It could all go downhill right now this very moment in time and I’d still feel blessed for this opportunity and grateful for the hope and faith that he has installed in my heart. What he has given me never goes away.

I cannot thank you all enough for helping me. Surely everyone says the same as me because they feel better but when I came to you what you saw was a million pieces of a single person. Each and every day I felt lost and empty inside. My faith in god diminished and felt like I did something wrong because everything the bible explains about hell – fire, burning, unspeakable pain, loneliness, helplessness, being insignificant to life, not worthy of happiness and a burden that kept family from what they deserve, a mother and wife – is what was going on inside of me. Thankfully I was not ever mad or hateful nor would I have ever looked for “a way out” (I was desperate, not stupid) but I was about to give up seeking help. I seriously battled giving up by no longer seeking help and getting help. I felt helpless as it was. If nothing could be done I would have rather stopped trying to find help and make the best of what I did have. I lost my faith and hope. I needed to get it back so living with what was going on meant I no longer had to install hope that this time will be different and loose it when the doctor makes me feel like the suffering was created by my own will. But like a pestering nat I kept hearing go to the ENT.. Call the ENT.. Go to the ENT.. Do what needs to be done just GO.

I was on a mission to find hope because I needed it, so I gave in.. did what needed to be done and got an appointment at Cornerstone with Dr. Gillespie. On the day of my appointment I struggled to keep the million pieces of me together. I wanted so badly to not just leave but to run out of the office but like a dead weight, my feet could not move. I remember seeing Dr. Gillespie but have no clue what he said. The image and voice of him wrapping up the appointment and touching the door was burned in my head as the sound of shattering glass inside me.. as if every bit of china on the titanic hit the floor at one time.. so painfully loud that you can barely tell that the sound is indeed glass the only confirmation was the last few pieces bouncing off what shattered on the ground.. My strength diminished, my hope disappeared and for the first time my faith became resented.

Just as fast as this came on Dr. Gillespie turned back around and said, “let me just check one thing” after that everything he said was muffled because my head started going wild. Hope slammed into me like a ton of bricks, and my heart felt amazingly weird.. the feeling is not one that I can explain. The point that I did start to hear Dr. Gillespie was when I directly asked what it was. Then I only heard a few words then my mind went off in la la land. What was happening did not seem real and I did not believe it. Then Dr. Gillespie started to talk with me about school and the Alien laptop he got for Christmas, and reality struck. This is real! The peace I felt was complete, as if I was resting in gods hand – that peace. The next few days I didn’t talk much because I was mentally in another world and my only thought was.. This Is Real! This Is Really Real!

Things started getting extremely worse after the 13th. I have no clue what caused it to happen but all my emotions with hope began to toggle as they did before. My heart hurt from beating so hard. Every second was dedicated to keeping my breathing, neck and heart stable (this is probably why my neck was so stiff) because moving it made my vision go, my heart hurt to beat and it felt as if I was being beaten in the head with a bat. The fear I had in me was the fear of losing this fight.

The last visit before surgery my fear showed. Faith and hope where not even a thought.. I just wanted to live. It felt like what was left of my life was being taken.. crazy or not I felt like I had to fight to get my vision back or for my heart speed up or slow down.. I had a couple times that the distance between beats where so long that I thought I was gone. My body felt incredibly strange when it slowed down everything tingled and breathing felt like an option because I wasn’t just doing it.. I don’t know if I even felt the pain because I was so focused on getting my heart to beat. My husband would panic because something was wrong and I couldn’t tell him and I refused to go to the hospital and said I would leave if he called 911 (not verbally – child tantrum like fleeing and waving the hand). I didn’t know what was happening to me the last thing I wanted was to explain it too someone else. I needed my focus to be on getting back in my shoes. Fast forward..

Surgery went very well. I didn’t expect to feel what I felt right after or even now. I didn’t expect to emotionally or spiritually to be on solid ground. I did assume that it would take time for me to repair the hurt I felt inside regarding hope and faith.. but Dr. Gillespie fixed that too. I’m no longer battling myself to be who I want to be because I am who I want to be and there is no more of my voice off in the distance (in my head) screaming don’t stop, it’s just a hurtle, jump it, if you can’t jump it don’t waste energy knocking it down just go around it, .. whatever you do just keep going!

True I did not say some of these things during the visits. After so many doctors and them implying I am crazy, bi polor depressed.. whatever.. I learned to leave that stuff out because realistically how I did feel sounds absolutely insane. However, no matter what happened health wise I never lost the image of who I am, therefore there was no logical explanation or reasoning as to why that made sense. I would have gladly taken that diagnoses “if” I believed that was the slightest chance it could be true because I wanted desperately to know what was happening to me.

Now, I am all better.. COMPLETELY!! I knew it would be better and I also knew everything else would have to be worked toward. The self goal I had for myself to achieve did not result in me feeling this good. It’s like saying my 10 year goal is to pay off our home from my dad, but I strike the lottery a week later and win just enough to pay him back, pay for tuition at my sons school and pay off my school loans. One way or another it was going to be done but the time in which it is done and the struggles that are endured to get it done are gone.

By my example, I am not implying what comes easy is best. It’s the holly cow that outcome was not expected I was aiming for J If given the choice I would prefer a bumpy road over a smooth one. I have been at rock bottom long ago and will never go back. Hard times creates character, teaches lessons, earns wisdom, generates appreciation, installs compassion and strengthens trust, faith, happiness and most of all hope and belief in god.

I have learned so much during the eagle syndrome experience and I’m grateful for all of it. No matter how horrible it was, there is always something good to be pulled out of everything. A learning experience is always appreciated in my book.

Sorry for rambling but thank you does not even touch what I am thankful for or even what has been done with and in my life. Pre surgery there wasn’t anything that brought me comfort like when you sat and talked to me. It made me feel human. Doctors don’t normally have that effect.. ever. You have impacted my life in a way that has and will forever bless me. I really needed exactly what you gave.. someone to listen and not make me feel bad because what I felt wasn’t normal. Someone (being a doctor) to care about what I was experiencing. I needed help. Thank you tremendously for doing exactly that! You are a true blessing and a healer of the soul. Thank you for helping me!

Forever Grateful,

Leigh

Lad - I know this is an old post but I have had 20 years of symptoms that I am just now feeling like I have answers to. And so many doctors that have been dismissive, even scolding me sometimes for pursuing the true source of this thing. My symptoms seem quite similar to yours and then I saw your picture! My face looks the same! I will upload one at some point. I can feel my left styloid through my tonsil and the left side of my face is just sort of hiked up similar to your pic. Vertigo is getting worse and worse for me and have days that I only feel well if I am laying down, which I cannot afford to do. I am still trying to find a DR. Can I ask, did your ENT do the vascular type surgery ? And how are you now…three years out of surgery? Thanks, Stephanie

Hello Stephanie, my surgery was through my throat/tonsils. I’m not sure if vascular is through the neck but that was am option.
Three years after surgery life if still beyond amazing. I give thanks to Dr, Gillespie at cornerstone ent everyday. Life is better than I’ve ever known it to be.
I would highly… HIGHLY recommend talking to Dr Gillespie. He is an honest man and does everything possible to help. I swear he saved my life. I no longer suffer everyday because of him.
I’m actually heading out the door for roller derby practice. I’m happy to talk anytime and lend an ear and help you through as you go through your healing process.

So glad to hear you are recovered! I can’t imagine being able to do roller derby…I hope I can sometime soon be able to do such a thing! I guess I would ask a couple of questions… Did your Dr take all of the styloid or part of it? And do you have any problems with swallowing etc due to the surgery? Had DR. Gillespie done this surgery before doing surgery for you? I am up on the coast of Maine so NC is too far to travel but I am sure I will find someone nearby…so far I have just had a lot of discouraging experiences with Drs, like so many of us. Uploaded a pic of me with my eye that is so similar to your pic. My eye is better on some days etc. I guess it’s affirmation for me when I saw you pic. Thanks again!

I was my doctors first procedure. He only knew about eagles because it was discovered at Duke where he went to school. He removed all of it.
Swallowing did take time to get used too. Sometimes it would take several attempts to get food or water down. This is only because my throat went from being near closed to having a ton of room. It wasn’t hard or difficult to adjust. It just took time.

Hi LAD, I was so happy to hear that you are feeling so good after surgery a few years ago! Gives us all hope to get through the pre surgery stage. I’m looking at having intraoral surgery as soon as I can take that step (still scared) but finding it harder as each day goes by to tolaraye the pain and to put off surgery.

Would you mind sharing what you symptoms were before surgery, did you experience pain in your ear, jaw, neck etc especially with head movements? Also, how long did you find that it took for you to get through the recovery following surgery? Thank you so much and loved reading your update! :slightly_smiling_face:

I will never forget the fear of surgery. The fear of more pain and no resolution. The amount of hope that goes into having the procedure done was torture.
I may not remember all my symptoms but I will list all I remember. I had high pitched squealing in my eyes that went on 24/7. It was sheer pain being around those I loved. The deal would cause dizziness, nausea and vomiting. My eye sight was horrible. If loose vision frequently. This ended up being because my jugular was pinched so if loose sight. Things would melt until my vision was gone. After a few moments of being still sight would come back, but I couldn’t drive because of this. The left side of my throat was pushing in towards my tongue. This also caused extreme soreness in my jaw. I had constant discomfort eating, drinking, talking… doing anything really.
I remember waking up from surgery in the greatest mood. I could breathe, see, all sounds had the most impacting peace and beautiful effect. The recovery was great. I was so wrapped up in how much better everything was that the pain from surgery didn’t bother me at all. That feeling hasn’t worn off any yet.
The days I remember after surgery are day 4 and then 7 to 11. This might be because I got into a car accident exactly one week after. Day 4 was rough because I got itchy in my throat. I was able to take less medicine (got off narcotics) after day 5. After my accident all I had to take was Motrin until day 12. Then I stopped mess all together.
If you do surgery through the mouth I HIGHLY recommend getting a lot of frozen yogurt and take small bites all through the day. That was a life saver. Also… when you sleep your throat will get dry. Take multiple small bites of frozen yogurt. That works faster than any liquid.
Small bites are important so you don’t have t9 swallow hard

Thank you LAD for taking the time to go through your experience. It is really helpful to know of your experience in having this surgery and comforting to know you that you also had the very same fears of surgery. Not easy either way.

I can relate to so much of what you described in terms of your symptoms and just feeling off balance and struggling with doing normal activities. You vision issues though sounded quite scary.

Really appreciate the tip about having frozen yogurt and taking small bites, as I anticipate that it will be painful to have normal food for a while!

Did your surgeon also remove the stylohyoid ligament, as mine is proposing to leave that in tact as I do not have any classification issues. Could I also ask how much of your styloid he removed as some members have advised that they have experienced some ongoing issues following surgery as not enough of the styloid was removed.

Thank you once again for sharing your experience and offering your support, I know that other members will also benefit from hearing your journey, and really happy to know you are doing so well!

Hi, can you please explain about your heart symptoms. Was it connected to es? I have heart pain spasms which started after my es symptoms. Doctors say its not related. Thanks

Heart & gastrointestinal symptoms caused by ES are not uncommon as the elongated styloids can tangle w/ the vegas nerve which helps to control heart rate & digestion. I had an interesting heart issue before my ES surgery where my blood pressure would drop very low when I exercised hard especially if I strained my neck at all. I would get very winded & light-headed - feeling like I was going to pass out - & wouldn’t recover quickly like I should have for my level of fitness. That said, I don’t know if the issue was vegas nerve compression or compression of carotid or jugular tissues, but regardless, my heart was affected.

Here’s a quick definition of vegas nerve function from the internet:

The vagus nerve is one of 12 cranial nerves. … Also known as cranial nerve X, the vagus forms part of the involuntary nervous system and commands unconscious body procedures, such as keeping the heart rate constant and controlling food digestion.Apr 15, 2015

I hope this helps!