Really glad that your pain has eased a bit, & that you have a date for surgery & it’s not too long to wait…will make a note of the doctor’s name, I don’t think he’s on our list, always good to hear about more doctors!
Hi Pindergirl67,
I am finally seeing the head/neck surgeon this Tuesday. I was diagnosed in March 2019. Two weeks ago I heard and felt something crack in my neck, and the pain was pretty bad for awhile, but then the next day the pain when swallowing was much better, but other symptoms remain. I am thinking the bone broke? I am still on prednisone waiting for my appointment with the surgeon. I am worried about having a piece of broken bone floating in my neck, but I am afraid that they won’t do the surgery if the pain is better. I am glad that you are in an area where there is an ENT that is experienced. In MN, the ENT dept has only read about ES in books. There is only 1 surgeon that I could find in the state that has done this surgery. I am wondering if anyone else has had the styloid break? I will be praying for you on surgery day!
There have been other members who’ve had this- sometimes fracturing the SP is what starts their ES symptoms. You can do a search with the magnifying glass icon to find other discussions about this.
Hi Abby4Paige,
I had a popping sound about 4 days before I saw my surgeon. The pain was horrible, but only lasted about 5 minutes. When I saw my surgeon, he did a face CT, it showed the calcified styloid ligament to still be in the same place it had been without any breakage. I am due to have surgery May 14, 2019 in Savannah, GA, Memorial Health University by Guy Petruzzli, ENT, Otolaryngologist. Like you after the initial pain of the popping sound (of course only I could hear that), the pain went back to it’s original level. My surgeon didn’t put me on any kind of meds. If my pain gets really bad I take Tylenol and I was already taking Tramadol at night for cervical and lumbar pain. I don’t WANT surgery, but am looking forward to getting my life back. I am sorry you don’t have ENT’s who are familiar with ES. Even the first ENT I was referred to from my Family Physician knew about ES and did a CT which clearly showed the magnitude of my styloid, but didn’t have enough experience that he felt comfortable doing surgery. Surely the ENT you are going to will perform a CT, it will show the severity of calcification and length of the styloid, that along with your symptoms would surely qualify you for removal. I will be praying for you and that the ENT’s in your area become more familiar with ES. God Bless You!
Abby4Paige,
The intensity of your symptoms should not play a role in a surgeon deciding whether or not to do surgery. If you’re symptomatic at all, & it’s impacting your life, & have the diagnosis of ES i.e. elongated styloid process (es) &/or calcified stylohyoid ligament(s) then you qualify for surgery. I wouldn’t discuss the intensity of your symptoms or lack thereof w/ the doctor. I would just let him/her know you’re symptomatic & want to move forward w/ getting your styloid(s)/calicified ligament(s) removed so you can begin recovering. We have found that an informed & assertive patient can get farther along in the process than one who doesn’t stand up for him/herself. Also, many people have had to travel out of whatever state they live in to have surgery w/ a more experienced ES surgeon. If you don’t feel comfortable w/ the surgeon you’re seeing this week, you might want to get a second opinion from Dr. Cognetti, Dr. Newman (both are in Philadelphia), Dr. Samji (CA) or Dr. Milligan (AZ). This can be done via a phone consult. These doctors & their contact info are on our US ES Doctors’ List. There is a charge for these consults, but health insurance often pays for or helps pay for a phone consult.
Isaiah_40_31
Thank you so much for the reply. This definitely helps me stay focused on what the need is. Sometimes I feel the need to share everything if you are with a dr that understands your condition because I am used to being looked at like I am crazy for the last year and a half. But I will stick to the facts. This is what my CT read: Elongated right and left styloid processes and densely ossified
stylohyoid ligaments. The ossification extends from the skull base to
the hyoid bone.
I have spoken to Dr. Samji’s office in case my MN surgeon visit doesn’t go as planned. I believe he only has done ES surgeries 1 every year or two, but am thankful he has seen some.
Thanks again!
Patty
Pindergirl67,
Thank you for the reply. I am not super excited for surgery either, but after surgery for sciatica, I have been pain free for over 6 years now after dealing with it for over 20. So I am very hopeful that surgery for ES will be successful. Both sides are elongated and ligaments are densely ossified all the way to the hyoid. Prayers to you on the 14th.
Thank you,
Patty
Abby4Paige,
You are fortunate to have found a doctor that even knows what ES is let alone has done a few surgeries. My diagnosing doctor was in that boat. He was an older & very experienced ENT w/ many surgeries in that area of the body to his credit, BUT, he had only done a few ES surgeries. I saw Dr. Samji for a second opinion, & decided his surgical strategy & specific ES experience were more in my comfort zone so he did my surgeries.
It sounds like you have pretty extensive calcification. Make sure you have a clear understanding of your doctor’s surgical approach i.e. intraoral vs external (if external, which does give better access) will he monitor nerves; how much styloid & ligament will he remove (all - i.e. skull base to hyoid bone - of both, if possible, would be best in your case); does he do both at once or require separate surgeries (separate is a bit safer); will there be an overnight hospital stay or is the surgery outpatient; will he put in a drain; what is his view of what your recovery will be like.
Good job thinking ahead & reaching out to Dr. Samji’s office. It’s always good to have a second opinion when thinking of having a major surgery.
Please keep us in the loop as to how things progress for you.
Isaiah_40_31
I wanted to give you an update. I met with the surgeon today and he is fantastic! He will be removing the left side styloid (7cm) and the entire ligament down to the hyoid. External surgery with a drain, overnight in hospital. Surgery is scheduled for May 10th at the University of MN. I have my pre-op tomorrow. Please keep me in your thoughts on May 10th! I appreciate your feedback and support.
Patty
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Abby4Paige (Patty) - That is FANTASTIC NEWS! So glad you’re having surgery so soon. Sounds like you’ve found a great surgeon. Please let us know how your surgery goes & share your surgeon’s name w/ us if you feel it’s the right thing to do (you can always ask him for permission). We’re constantly on the lookout for good surgeons who are aware of ES.
I’m so happy for you! Thank you for this wonderful update! I will put you on my calendar & pray for you especially that day.
Exciting!!! That’s so soon! Not long to wait. 
That’s brilliant news, very pleased that you have found a surgeon you feel confident with! Will keep your date in mind & will be praying for you 
Jules, SewMomma, Isaiah_40_31 Hello! Sorry it’s been awhile for any updates. The day after my surgery, my sister in law had news that her cancer returned and spread. She was given 2-4 months, but passed after 3 weeks, so we have been by her side since my surgery.
My surgery was May 10th and recovery went relatively well, my ice packs were definitely my best friend:) My left ear and jaw line are still numb and I have a newly inherited speech problem since the left side of my mouth/tongue are not working. The surgeon had me see a speech therapist and she gave me some exercises to do. Hopefully they will improve my speech and eating abilities. The surgeon said it could take up to 18 months to see what will come back or stay how it is now. I am very thankful that it is done. Hope all is well with everyone!
Patty
Hi wow how tragic about your sister in laws passing. My she rest in eternal peace.
I had the tongue/speech thing too. Two months was my turning point. I am now at 98% with that at 4 months 
So sorry about your sister-in-law, must’ve been a really difficult time for you…puts things into perspective 
. Will be praying for your speech problem to improve 
Hi Abby4Paige,
I replied to another post you made before I saw this one so now I’m clear about your sister-in-law. Again, I’m so sorry for all you’ve been through so close together.
My ES surgeries caused some nerve damage which still seems to be improving after 4 years. Our bodies are amazing in their ability to heal!
Hi Abby4Paige,
I had external Surgery in May this year. I was left with left tongue weakness & speech problems. I was wondering if you had seen a speech therapist. It sounds like our outcomes were similar.
Sorry I just saw where you are in speech therapy. Have you had any difficulty with that?