Normal

Just wanted to know after surgery all is said and done dose life go back to normal ? Do you just pick up get that steak dinner and eat just fine or is there still anixity and being scared and food getting cought?

I felt like a completely different person the moment I woke up from surgery. No life doesn't go back to normal.. it gets better than normal.

I ate steak almost 2 weeks after surgery. Although it didn't hurt my expectation of it hurting kept me from eating more of it. When I didn't hurt, that fear went away.

With food getting stuck - that feeling is gone. lol.. the back of my mouth feels like its the size of a baseball stadium. It does time to get used too swallowing - I think that's because of the space difference.. but that sensation is not felt.

I have a letter that I wrote to my doctor saying thank you. In it I talk about life before and after. Would you like me to share it? its long so I didnt want to post it without it being something you wanted.

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

Thank you for sharing.

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

You will get a whole new meaning to what normal is after your procedure and it will blow your mind! Don't give up trying and never give up your hope for better days. Life is totally different after surgery. Normal will be fantastic. Colors are vivid, sounds are beautiful and everyday you will be blessed with peace.

Thanks for sharing that; so pleased that you've had such a good result, and your faith back. There are times where God seems silent, and we have faith and what we've learnt on our journey to fall back on... but God's hand was clearly at work in your life. As the saying goes 'what doesn't kill you makes you stronger'! You obviously have a lot of life to live now, but it would be lovely for us who are contemplating surgery if you could still come on the site and share your experience of surgery from time to time....

God Bless, I hope Lad's story helps you!

That was so encouraging to read! I have surgery this coming Monday and this gives me so much hope! Thank you. Was it just the styloid that was removed, or did you have anything done to the stylohyoid ligament?

Nice to meet you Jules, and your right. What doesn't kill you will make you stronger! I will definitely continue coming to the site to help however I can, and to share different experiences after surgery. I have more to share as far as after surgery but the feelings are still in trial and error stage.

One being the right side - my worse side - seems to get a tickle when it is going to rain. Nothing that hurts. The sensation isn't nearly as bad as when your about to sneeze. It doesn't alter the mood or change, but it is a sensation that so far only seems to come on when its about to rain.

Also on the right side - my worse side - the cold causes a mild pain on the inside when the ear is cold. This started 3 weeks into recovery and hasn't happened in a few days, since its been warm. I did find that covering the ear resolved this discomfort.

Jules said:

Thanks for sharing that; so pleased that you've had such a good result, and your faith back. There are times where God seems silent, and we have faith and what we've learnt on our journey to fall back on... but God's hand was clearly at work in your life. As the saying goes 'what doesn't kill you makes you stronger'! You obviously have a lot of life to live now, but it would be lovely for us who are contemplating surgery if you could still come on the site and share your experience of surgery from time to time....

God Bless, I hope Lad's story helps you!

They have to leave the styloid because different facial and neck features are connected to it, so removing it isn't possible. They only removed the stylohyoid ligament on both sides, as well as the tonsils.

April E said:

That was so encouraging to read! I have surgery this coming Monday and this gives me so much hope! Thank you. Was it just the styloid that was removed, or did you have anything done to the stylohyoid ligament?

I'm having the extra-oral, so no tonsils removed and only one side being done. I have an elongated styloid wrapped around carotid, so it is being fractured and I just wonder about the highly ossified stylohyoid ligament being a problem with my pain also. I'll ask tomorrow at my pre-op visit.

bout week after surgery I had this weird burning tastebud sensation that lasted about a month.. but it goes away...

My right side was pushing downward where the artery Y's. It also put pressure on both sides whenever I moved. My doctor took my right side out in multiple pieces too. The ligament will be removed all the way down to the styloid without interfering with other ligaments attached to it. I no longer have any pain what so ever.

Did having the stylohyoid ligament make swallowing weird? Or is it such a relief to get rid of the pain that you don't notice?

LAD
". the back of my mouth feels like its the size of a baseball stadium."
I think the space you feel is perhaps of removed tonsil. I feel that since my tonsillectomy(8 months ago). I had no ES op yet.

My right tonsil was being pushed into the middle of my throat. It had already worked through muscle/tissue and was closing in my throat. I could feel it pushing downward on my tongue. I have no doubt that the tonsil removal played part in this feeling but the eagles going into my throat and the restrictions from it are what make it feel so roomy.. that and no longer feeling like I am choking as food goes down. My tonsils did not have any issues at all. They where removed to get to the Eagles.

LAD I read your story, nice to hear your success now!! I have strong dizziness. You had also dizziness, was yours of vascular issues?

Mine effected the cranial nerve and artery. It pushed downward where the artery Y's and cut off blood flow as I moved. I had major dizziness. Sometimes so bad all I could do is lay on the floor.. I'd crawl to get around bc trying to stand would unintentionally throw me into a wall. My husband described me looking like a really drunk sober person (it wasn't this bad all the time though). I ways walked like a car that need an alignment.. kinda straight but not really. It affected my facial features. I added a picture so you can see my left eye. My right side was worse but in various pictures depending on what hurt worse, is what side looked funny. In the past 4 years I have only put 3,000 miles on my car. The three earlier years I put 97,000 on it.

**My nose isn't crooked bc of eagles.. that's because my daughter broke my nose after I got my deviated septum fixed**

137-Me.jpg (16.2 KB)

I have tears from the heartfelt letter from LAD. It is so hard to appear normal on the outside but feel so lousy with pain. I appreciate the sharing of our faith to bring me back to reality that. God is in control, and will guide and help us cope and receive the care and comfort we need…thanks for giving me some hope. Blessings to all. Have a great weekend!

LAD

I added also a picture. I think there is a similarity on the left Eye. (Exept you look a little better). I took my picture a couple weeks after my Tonsillectomy, so i was weak but my left is since than slightly weaker than the right one. First i tought it is the weakness of the tonsillectomy but it isnt. Now It is bot bad as on the picture but in some moments i see/feel it.
136-image.jpg (80.1 KB)

My right ligament was removed when my right styloid was shortened, & I can't tell it's missing. I think it's kind of like your apendix in that it serves a minor function in the body, but you don't miss it when it's gone.

Can't wait to get the left side done. It's become very problematic over the last month. I can feel my styloid now at the back of my mouth on the left side when I run my finger under my tongue to where it attaches near my throat. I think the silly thing is still growing. I've really had the lump in the throat feeling, swallowing issues & a bunch of neck & ear pain to go w/ it. Lucky me! May can't get here soon enough!!