25 days left, today I laid all day because when I get up I feel like my head is not right with my neck. Symptoms; neck stiff on right side only, misaligned jaw, creputis behind jaw under neath jaw, dizzy, vision impairment, when I walk and look up and down vertigo, clicking on TMD joint but no pain. Prayer and meditation with some yoga for today and then positive thinking while taking my 3 important meals of the day. Research is all done, sometimes I look up cervical stenosis on the forum or misaligned jaw just so I can read the positive reports from people with similar situation. October 15th Dr Mike Smith who diagnosed eagles syndrome is going to do a medical study of my jaw and teeth. Stem cell therapy for missing cartilage and splint therapy after styloid 2 months of LLT w/ PT. Then back to work and let the doctors worry about my symptoms I hope you ladies are having a good day.
Sorry that youāre having a difficult time while you wait & having to rest so muchā¦but good that youāre using your time productively & are doing lots of reading to encourage yourself.
Hope that all the treatments tie in together & all to their bit to cure you!
Perhaps a bit of encouragenent. Six months after the external surgery on the second side and one year after first side, my cervical spine issues are calming down, misaligned jaw will still be there, but with my splint at night and physical therapy for all the unused an tight muscles, I am feeling almost normal again. I wish you the best.
Thank you ladies
Day 24, I sit in bed and play memories of happiness and what Iām going to do after this. My bottom molars feel so heavy on the right bottom where my elongated styloid is locates. I tell my mind to pull my teeth upwards, imagination is key. When I turn to my left I look at my vision board a picture of a perfect jaw and smile stare back at me. I can feel god, mediation and yoga is what only helps while I close my eyes and feel the off balance of my body. My right arm twitches, my chest feels bloated and my neck muscles are stuck. Once again I read the stories of so many success stories so day 24 becomes less depression. Meal two feels warm and a little tear breaks free from my right eyeā¦
You are very poetic, Supersayianrulis! I hope you can continue to do those positive visualizations & let them carry you like a gentle stream to your surgery day.
Iām a free lance writer, the symptoms change the trajectory of my life. I suffered from anxiety all my life but in the summer of 2017 I had almost the same symptoms. A simple toothache occurred on my upper molar that broke this year. I got a root canal but I suffered from weak neck muscles and anxiety, it made me think of life. My life was challenging and so is everyone elseās but Iām so amazed how long people suffer. Our minds challenge us, sorry about my typos but at the moment my mind canāt seems to be blocked. I believe that our symptoms are meant to tell us a story, I thought hmmm maybe Iāve had eagles syndrome my whole life. I thought of all the soccer games Iāve ever played, all the punches in the jaw from bullies, the punishment from my parents. The times I fell and got back up, my car accidents, I thought of all the foods that might caused me harmed. To say that this started with a simple toothache and changed the way I live now. In the mornings fruit becomes my major choice with two cups of spring water. Then my vitamin D with a little bit of stretching and happy thoughts after Iām done I lay down. I listen to my breathing and imagine my jaw straight as well as my neck being straight. This also goes for my tongue I simply try to keep it as high as I can to my upper palate. Then I repeat my magical words āI love you God.ā I get up and jog in place so i can burn my dinner from last night. When Iām finished I try to clean up the room and house while researching similar cases of people who have the same symptoms. I keep these positive so I can embrace my faith, good or bad I know Iām going to get through this. A couple of hours past by and I try to ignore the time and date because I hate panic attacks. The sense of feeling stuck is worse then drowning in the ocean, those thoughts trigger my oxygen reaction to my body. Time seems to be my enemy at the moment so Iāll make it my best friend. When lunch time comes I keep it simple, vegetables (no tomatoes, no onions, no inflammation food) a cup of spring water. I pray and lay down because I try to keep my mouth shut or not moving so I wonāt feel as if something is pulling my jaw down. Crying is my medication, itās okay to let out emotions then taking chemicals. Once eight oāclock comes around thatās when I say thank you for today and repeat the exact same thing the next day. Thank you ladies for your words.
Not too long now until your surgery, hang in thereā¦will be praying for you
Routines are good especially when struggling w/ pain. Iām glad you have a healthy routine! Youāll be able to establish a different & hopefully more varied routine once your styloid(s) are removed.
I hope you get relief with your treatments and I am looking forward to hearing from you as treatments progress.
Can someone explain removal all the way to the skull base? It doesnāt make sense to me, Iāve seen some good outcomes and not so good ones. I had a vision dr Milligan removed almost all of it and left 1cm. Then I woke up and had my normal life again But this time I knew what I wanted in life.
I wish for dr Milligan to remove what is causing harm.
The styloids are boney processes which come out from the bottom of your skull- your skull has a base to it with several openings for all the blood vessels & nerves- the styloids are located about behind your tonsils. When theyāre removed the ligaments which are attached to them are scraped off, & then the styloid cut off. If itās not all removed then the tip should be smoothed off. The ligaments are often left in if theyāre not calcified, but donāt seem to affect anything!
Does that help?
Hey @jules did you get your full styloids removed? If not did they grow back?
Whether or not the styloids are fully removed, they can grow back. We have both cases recorded on this forum. There are more people whoāve had long-term resolution of ES after surgery than there are cases of regrowth, but regrowth does happen. We donāt know exactly why. There seems to be less of a problem w/ it when more of the styloid is removed i.e. when just a small amount is removed, there is more likely to be regrowth. Dr. Milligan does leave 1 cm of the styloid behind to protect the facial nerve. As far as I know, only one forum member for whom he did surgery has come back to say regrowth was experienced. Thatās a great track record on Dr. Milliganās part. A forum member who had Dr. Samji do ES surgery has also had regrowth. The surgery for this is not perfect, but for the majority of people, it is life restoring.
You can ask Dr. Milligan if he ever sees cases where regrowth has occurred, & if so, how often. Heās been in practice a long time so has likely experienced some cases of regrowth.
Mine were removed back to skull base, no regrowth so far!
Iām in the same category as Jules. I had ES surgeries in 2014 & 2015 & have had no regrowth. 
I havenāt been on this site for over a year but I had my first (left) styloidectomy in Dec. 2019, with Dr. Samji. He reported complete styloid removal, including some surrounding skull base, as well as removal of both of the calcified corresponding ligaments. I was then scheduled for my right side styloidectomy on March 30, 2020, but it was canceled due to Covid. This past year has been horrific with my symptoms, both from nerve compression but also significant jugular compression and the whole host of nightmare symptoms that accompany both of these. I have been able to get fully vaccinated and have rescheduled my right styloidectomy for mid-May. However, I recently had new CT imaging and was shocked to see that I still have bilateral elongated styloid bones!
My issue is with what my operative report and pathology report say vs. what my imaging shows post-operativelyā¦both canāt be true. My styloid bone on my left side IS shorter now, but the shape of the smaller styloid is exactly as it was before, so there is no way this is regrowth. This is a shortened styloid bone.
I donāt know how to reconcile this lack of accurate reporting with trusting Dr. Samji again. I trust he has extensive surgical experience with ES, which is why I have traveled to him for my surgical care in the past, but I expect to be told the truth about what is done inside my body when Iām unconscious. His medical assistant has come back with āunfortunatly, we have now seen a couple of cases of calcification of scar tissue that can look just like styloid.ā There is NO way that is what I am seeing.
Anyone have advice or a way to reassure me that getting on a plane in one week to go back to him is what I should do? The thought of trying to get in with another experienced surgeon and waiting much longer for relief on my right side is overwhelming. I am barely functioning at this point.
So sorry, Adogmom, Iāve replied to your other postā¦
Hello adogman I am sorry you are going through this. Unfortunately, you are not alone. I have ad the same issue happened to me.
Dr. Samji removed my two styloids from skull base. He told me there was only .5mm left. However, I had a ctscan done 3 months after surgery and both of my styloids were over 3.2 still. Post op does not coincide with the images. He claims it is regrowth, but so soon on both sides?? I have had the worst year ever and continue to be in severe pain. I hope that you make the right choice and have a successful surgery this time.
I donāt know if anybody else has had the same experience as both of us.
Wow, Cali, I am so sorry to hear that you have had such a rough year and that you also have found discrepancies with what Dr. Samji said was done in surgery vs. what your post-op imaging shows. This is worrisome and disappointing as Dr. Samji is such an experienced and much-sought-after surgeron for ES.
I wish you only the best and look forward to hearing how your situation progressesā¦hopefully all for the better.