I had surgery on my left side 4 yrs ago, and after a couple of weeks I felt great! I thought ES was behind me! Well, lately I’ve been getting the same symptoms as before again on my left side. I don’t have the mental strength to do this again! For all of us who have, or are going through this, you know this is not an easy journey. Especially since doctors don’t have a lot of experience in Eagles. The one symptom that is more prevalent is that constant poking feeling, in my throat and my voice is starting to go in and out again, neck pain and headache, light headedness. I’m starting to withdrawal from from family and friends. Has this happened to anyone else in only a couple of years of having surgery?
It was my understanding that growing back was really rare. Recently I read about someone who had regrowth after 20 years. Also read about the young man who had them removed before puberty and they grew back as he grew - within a couple years he had had 4 surgeries. If they have grown back, I am so sorry.
When I had the surgery, I also read they grew back, but I tried not to think about that too much. Psychologically, I didn’t want to jinx myself. Do you by chance remember where you read about them growing back. Was it on this site, or another thread? I would really like to read up on it. Thanks so much for your reply~
First off, I’m so sorry for what you’re going through. I can imagine how discouraged you must be. There have actually been several people who’s styloids have grown back w/in a couple of years of surgery. Usually this happens when the styloids have only been shortened, not removed back to the skull base though we do have one forum member (can’t remember who) who had hers removed at the skull base, & they still grew back. Currently, you could try privately emailing KCannady as she has begun having symptoms again after 3 or 4 years & has confirmed w/ a CT scan that there is new styloid growth. She is feeling the same way you are about this & her symptoms are similar as well. Using the magnifying glass icon in the upper right, you can search for other posts that discuss regrowth as well.
sjlash is referring to Ear_Mom’s son. Here’s a link to a discussion in which she participated. You can click on her screen name to privately email her if you want to ask her questions: SO scared and no docs help. She actually wrote a book which covers the details of her son’s ES journey. It’s called “Connecting the Dots” by Sheri Jonas & is available on Amazon. Here’s the link to it: https://www.amazon.com/s?k=Connecting+the+dots+by+Sherri+Jonas&ref=nb_sb_noss
Regarding doctors having lack of experience w/ ES, there are several on our doctors’ list who are very experienced w/ ES & ES surgery: Dr. Samji (San Jose, CA) & Dr. Milligan (Phoenix, AZ) have each done over 300 ES surgeries. Dr. Cognetti (Philadelphia, PA) has done close to that number & Dr. Newman who did Ear_Mom’s son’s surgeries is also experience but also in Philadelphia. I realize none of these doctors are near where you live, but many people have traveled long distances to see one of these more experienced ES doctors for surgery.
I’m glad you shared your current concerns & frustration with us. Please know we’re here for you no matter what. I’ll be praying that you have the fortitude to pursue getting yourself taken care of again.
Nanners- so sorry that you’re getting symptoms again, this is too bad. We are seeing a few people coming back now; I wonder if now that ES is getting recognised & treated more that we’ll hear of more people having regrowth? Are you going to have a CT to see what’s happening? Thinking of you…
I too have had mine grow back for a 3rd time now. I am actually going in for surgery on the 10th of June. The pain I feel this time is so much more intense than it has ever been. Just hang in there, I found this support system to help mentally as I feel sometimes like an oddity with this rare condition. I will keep everyone posted on my recovery
I really appreciate your support~ Do you have any new references that I can look up?
I’m in the process of getting a referral to have another scan. Before I had surgery some of my symptoms were not as bad as what I’m experiencing now. Mine are more vascular only on my left side. Though, occasionally I do feel something is poking into my right side. As most here have those symptoms. I really can’t express my gratitude that you have committed yourself to this cause. You have been a beacon for many of us!
Dr. Milligan did my first surgery. He was very good but he only removed a portion of my stylod. I think because I barely qualified for Eagles. So, he felt their wasn’t that much to remove. It’s was just the angle it was growing it that Started pressing on my carotid artery.
Now, every time I turn my neck to the left I get light headed, weak, and I feel my heart racing and a headache usually follows. Just like the first time but some things are worse. I appreciate that you took the time to listen, and reply. I don’t feel like a lonely island! It really helps. I’m sure everyone with Eagles knows what that feels like at times. Again thank you, I’m feeling a wozy me, & the support really helps~🌻
I’m so sorry! How are you dealing with this?
How long between surgeries? I wish you the best~ Giving you a virtual hug Did your symptoms come back all at once, or was it gradual? Do you have a good Doctor? I had to travel out of state. NM was very behind on Eagles. I went to almost every ENT here. I’m not looking forward going through the whole process again~ please keep me posted, Good luck
I’m so overwhelmed, and sincerely grateful that so many ppl have taken the time to give me advice. I will follow up on your reference. Thank you~
It has only been 9 months but the pain is too much this time.Thank you for you care and concern
WOW! I believe you’re the first person who’s posted a 2nd regrowth & need for a 3rd surgery. I hope the surgeon you’re seeing is able to cut the styloid back to the skull base so this NEVER EVER happens to you again. I know even that is not a guarantee but it gives a better chance of regrowth not occurring.
Please stay in touch & let us know how it goes. I’ll be praying for you especially on 6/10.
Sometimes, even the most experienced ES doctors won’t cut a styloid process back to the skull base if the facial nerve or others that affect the tongue & face are too entangled w/ the styloid or exit the skull too close to the base of the styloid. Even the best doctors won’t take a chance of causing permanent nerve damage. Unfortunately that leaves the patient in a position for possible regrowth though it doesn’t happen in every case. There are many forum members who’ve only had their styloids shortened & the result have good & long lasting.
It would be good for you to find out why Dr. Milligan didn’t fully remove your styloid process. You can request the surgical notes from your first surgery from his office. Reading them will give you a better understanding of what was done & perhaps the reasoning behind his leaving part of the styloid process behind. If there is nothing obvious in them regarding his surgical decision, you may want to request a phone consult to clarify. Knowing whether or not he left part of your styloid because of nerve involvement or because that’s his normal ES surgical procedure will help you going forward whether you see him or another ES surgeon.
Really sorry to read that! Poor you, facing a 3rd surgery…hope this ends it forever, a big hug to you too
Sometimes afer intraoral or even external, they may not grow back, but what is left becomes problematic. I had intraoral on the left side. It took good 9 months to feel better and about 2 years after that I got so much worse. The remaining styloid was very thick and had a huge lump in the middle like the bone had grown outward. My throat hurt and I felt something sticking up and in my throat. That was the leftover stylohyoid. All of this was irritating my nerves again. That side hurt so bad that I needed it redone again before going for the side that was still 5.1 cm and had more calcified stohyoid.
picture of what remained after intraoral.
My prayers are with you all. I am hoping that my full surgeries from skull base to hyoid will be the end of it for ES, at least.
Thank you Emma. God Bless you - that looks like a gum ball! Glad it is gone and you are healing:)
That is quite a chunk of bone you had in there. YIKES!! Glad it & your 5.1 cm side are both gone now! HOORAY! Now onward & upward to complete healing!!
Hi all! I just found out that I too have regrown my left styloid which is now interfering with my left jugular vein and mangled stent. I’m waiting to hear back from my amazing doctor. Adore him and he was amazingly responsive as usual. Will keep you all posted with what I find out. Fingers crossed
So sorry to hear that, but pleased that your doctor sounds good & that you have confidence in him…thinking of you
I’m sorry to hear about the regrowth but thank you for telling.
That’s what concerns me sometimes too. Would you tell us what kind of surgery you had before?
Wishing you all the best.