How many ppl with ES had surgery, and stylods grew back?

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 :hugs: 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 :bouquet:

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~ :pray:

It has only been 9 months but the pain is too much this time.Thank you for you care and concern

Umiamigirl,

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.

Hi Nanners,

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 :bouquet:

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.

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Thank you Emma. God Bless you - that looks like a gum ball! Glad it is gone and you are healing:)

Hi Emma,

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!!

:sparkling_heart:

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 :crossed_fingers:t2:

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So sorry to hear that, but pleased that your doctor sounds good & that you have confidence in him…thinking of you :hugs:

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Hi LoriW,

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. :crossed_fingers: :crossed_fingers: :four_leaf_clover:

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Just found regrowth mentioned in an interesting article:

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Hi! Thanks for your kind response. I’ve had too many surgeries (and some incompetent doctors performing them unfortunately).
It all started with Chiari Decompression surgery (with a syrinx). Then a cranioplasty two years later which has been revised 4 times!

Then came the stenting of my right IJV which was a disaster which wound up being not jugular compression but in fact Eagles. Unfortunately the jugular dr decided when ballooning the stent in the right, that he should stent the left :grimacing:, which went horribly wrong and I developed a blood clot and then the need for a second styloidectomy and ballooning again. Now both are fractured and clotted over. Im seeing a vascular doctor tomorrow because they keep getting worse!

Also have had a fusion and an intralabrynthine hemorrhage in between. I have EDS which of course plays a part in everything. Hoping to have some answers tomorrow and with my Eagles doctor ASAP. Saw an ENT yesterday about my sinus issues and we looked at the offending styloid and it is not huge but definitely right up against my jugular.

WOW, LoriW! You do have your share of health challenges. Please keep us posted as to what you learn from the vascular doctor. Do you mind sharing who did your ES surgery i.e. is it someone from our list or someone we should add to our list?

I hope you get answers that make sense for you & a path forward so you can fully recover.

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So sorry to read about all your struggle with health and doctors. That’s nothing someone should have to go through. Many positive thoughts from me to you. Wishing you successful therapy and full and quick recovery!

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Oh Lori, that sounds terrible, so hard for you…I hope that you can get some answers & some treatment. Sending you a hug :hugs:

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Well, the vascular surgeon was incredibly helpful. I’m attaching a medical publication because this is exactly what is going on and explains it so much better than I could even attempt to! He’s going to do ultrasound and Doppler testing next month to check all my veins and arteries to check my carotid arteries and to also check for thoracic outlet syndrome. As usual everything always leads back to my wonderful maddening EDS. Hope you all find this helpful. Please feel free to ask any questions. In laymen’s terms, my left jugular vein is being squeezed by both my styloid and my C1-2 process. Which is why although my right side, although more narrowed, does not hurt like the left :grimacing:!

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I’m glad that he’s helpful & you’re getting some answers…just hope that it can be treated!
Thanks for the article, very interesting! I’ve put it in the research papers section too.