Hi I had surgery on left side removed on January 22 2018. I went to my doctor because I felt pressure again and low and behold New growth. I am extremely frustrated and sad. Just wanted to chat.
Bless you. How emotional you must feel. We are all here for you. Your experience will help some of us too so thank you for sharing.
Do you know how much was removed? Did it “reconnect” so to speak?
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It growing from the hyoid bone back up to the temple. It is trying to reconnect my doctor will be checking every 6 months.
Newmadison1,
I’m so sorry to hear your news. How difficult for you to have to be going down that road again!
There are some surgeons who are very conservative when they do surgery to correct ES. The styloid is only partially removed &/or the s-h ligaments as well. The more aggressive surgeons remove the styloid(s) at the skull base & the s-h ligaments at the hyoid bone to help prevent regrowth. If you & your surgeon decide you need to revisit surgery for your case, emphasize to him that you want everything removed - styloid at the skull base & ligament at the hyoid bone so nothing is left that can regrow.
Praying you won’t need surgery & that the regrowth will stop.
Thank you so much for your support. My nerve ending are wrapped extremely tight around the top of the styloid. He was extremely afraid to totally cut. He said he would have paralyzed my face. Hes baffled because it growing from a totally different direction. Thank you Isaiah for checking in. He said the side that he totally removed has made a slight growth as well.
So sorry to here this. I hope you can find a solution. I can understand the consultant being cautious. When my styloid process was removed externally (leaving 7mm), I ended up with facial palsy. I am now on the road to recovery, but it so easily could have been permanent. Take care.
Do you have CT scan? If so, post photos.
I don’t have a copy. I will see if I can get them.
Interesting that both sides are regrowing especially the one he totally removed. My left side was totally removed (styloid & ligament), but my right styloid has my hypoglossal nerve wrapped tightly around it so it only got shortened not totally removed. I totally understand your doctor’s decision & respect his need to be conservative in your situation. I do live w/ some little deep-seated fear that my right styloid might try growing again, but my s-h ligament is gone so at least that can’t be problematic as well.
Again, I’m hoping everything will settle down & you can find therapy to help w/ your current symptoms.
I know this is awful. The Doctors told me I had the most profound cause of Eagle Syndrome they had ever seen or read about. My surgeon said the chunk of growth was on the left side was separated from the hyoid and it was very unusual. Eagle syndrome is very rare and my case seems to be especially rare. I am totally frustrated and depressed. I told my doctor that I feel like a weirdo and I haven’t been able to get out of bed since my new discovery. He told me that I am extremely unusual and to try not call myself a weirdo. It’s been so so hard not to cry so I’m trying to be strong and hold back the tears. I can only pray that the growth stops.Thanks for your support
So sorry this has happened again, I hope that they can find a solution for you. Thinking of yiu & sending you a big hug…
Keep the faith and I’ll pray for you and god bless you and your ohana this to will pass I pray my styloids dont regrow still healing from left and right in the last six months so it’s brutal and the worst thing ever omg but pray and keep your faith don’t tske no for an answer amen buzz eagle aloha dr Hussein Samji seek his knowledge he’s the master and he teaches all the others how to do this procedure so again amen blessings sir buzzzzzzy
Hi Thank you for your prayers. I really doubt if your styloid grow back. My doctors are excellent my cause is just super unusual. I will be fine my doctor are checking me every 6 months. I’m not in any pain so far. Thanks again for your prayer. So happy your surgery has been a success.
It’s so good to hear you’re not in any pain Newmadison1! That’s most excellent news. It’s also good to know your doctor is keeping track of how you’re doing. It sounds like you’ve found a great doctor!
I’ve been praying for you, too.
Hi Thank you for your prayers. I am not in any pain so far. Its noticeable with some pressure but I’m ok. I really appreciate you guys. I’m thinking the growth will stop.
I vote for that, too!! 