A Chat with Dr. We may have an answer

I talked with the Doctor on the internet today and He said he was not able to diagnose over state lines but he could talk a little about my scans and I could decided if I wanted to come in for an appointment and if I wanted to I could schedule a surgery date with the appointment in case I wanted surgery after we talked in person. He said my Styloid is prominent and it was up against my spine. Can your styloid be up against your spine and not cause troubles? If your styloid is up against spine can it be poking into throat as well? I guess I am worried to pursue this only to find out I was born with long styloids and they are not causing my problems. The only thing that was a bummer about the appointment is that he was not sure that it could be causing singing problems but he said it was not out of the possibility that it was. He said he had not dealt a lot with singers. Not sure if I should schedule appointment or get a second opinion? I am so afraid of doing anything that would hurt my singing voice of course I cannot sing now because of the pain so what would it hurt.

Hi Agirl,

Vocal impairment is a somewhat common symptom of ES. There have been a number of vocalists who’ve lost their ability to sing as part of their ES symptoms. There have even been articles written about voice loss from ES w/ vocal recovery occurring after surgery. I’ll try to find a link to the specific article I have in mind.
If you want a second opinion, you could try doing a consultation phone call w/ Dr. Samji in CA. He himself is a musician, & he specializes not only in ES but in vocal & throat disorders. He is an ENT skull-based surgeon. You would need to schedule an appointment by emailing his med assistant Kim Elliot. He does charge a fee for phone consults but not sure how much. I’ll send you a private msg to see if I can give you the email so you don’t have to look it up.

Agirl -

Here is the link to the ES article I mentioned:

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There have been a few members who have had elongated , angled or wide styloid processes which have then been close to the vertebral processes, & nerves or blood vessels can be compressed in that gap. But that would generally mean a posterior angled process, in which case I would think it would be less likely to poke into the throat. Unless it was growing backwards & then with a jointed bit angling towards the throat… Have you seen you CT images? Some SPs to grow in like joints which change the angle. Also not sure if you do actually feel it in your throat, or if it’s the feeling that something’s there? That ‘bone in the throat’ sensation doesn’t always mean that something is sticking in it, it can be a sensation from an irritated nerve giving that feeling.
Isaiah is right about the vocal changes, & we’ve had quite a few members on here who have had problems like you.

I looked at the CT before I sent it to Dr Cognetti, but I was not able to see the styloids on it by myself and he was unable to show me the Ct over the computer. So I have not seen where my SPs are on the CT.

There was a lady I talked to that taught music and she sang. If my memory is correct, I don’t think she had any residual postoperative issues.

I got a call from Dr. Cognetti’s Office today. He had received my scans and wanted to set up an appointment. It will be a telemedicine appointment. Is that what you had? Is it like a FaceTime appointment? Your experience was that he would not have scheduled the appointment unless there was a reason to, correct? I haven’t been officially diagnosed yet. I just want this fixed…and if I do need the surgery I think I would like it done by him. He seems to be like a rock star of ES - at least from what I’ve read on this site and others. Please let me know how things go for you. My appointment isn’t until 5/9. They said he does ES appointments one Wednesday per month.

Yes it is like FaceTime except you set up a mychart and see him through that. It is really easy. They will contact you with the info and set that up for you when you get closer to the appointment. I don’t know for sure if he contacts everyone who sends him CT’s or if he only sees the patients he thinks have an issue. I assume that because he is a busy surgeon that he wouldn’t waste his time unless something was up. I will keep you updated.

Agirl - Thank you! I am looking forward to my appointment. I appreciate you writing back. #ready4cognetti

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Good luck with it!

Agirl - it’s getting close to your appointment. How are you doing?

jg77 I have been very anxious. If all goes as planned I will have the surgery this coming Friday after my Thursday appointment. However my insurance has not approved it yet, this is causing some anxiety. I am trying to stay hopeful and positive but this has been going on so long I am so afraid nothing will come of this and I will remain in pain. My pain levels have been really bad this last month. I think it has gotten worse.

If your insurance is foot dragging, Dr. Cognetti’s office might be able to help give them a little push. They can probably give further justification for surgery if your insurance is “on the fence.” Sadly, insurance companies are as bad as doctors who don’t know about ES. It probably seems like some sort of whacky diagnosis that for all they know is a fancy term for a face lift (in spite of the other info they receive).
You can contact them, as well, to let them know your surgery date is Friday & you need to know their decision.
I will say a prayer that your insurance approves this surgery so you can go ahead w/ it. Clearly you need it if Dr. Cognetti has you scheduled.


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The only ‘good’ thing about having increasing pain/ symptoms in the lead up to surgery, is that it reassures you that you’re making the right decision in having surgery!
I’ll be praying that the insurance gets sorted for you too, keep strong! :hugs:


Agirl - I wish you the best of luck with the appointment, possible procedure and dealings with insurance. I second Isaiah_40_31 in saying that if Dr. Cognetti thinks this will help you then it most likely will. That should help reassure you that you’re headed in the right direction. The pain from the condition is just awful and I’m counting the days until my telemedicine appointment with Dr. Cognetti. All the best to you! Please keep us posted.

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My appointment went well. Today. He is a very caring Dr. My surgery is tomorrow. He said that there are 3 different levels of people, people who don’t need the surgery, people who it could go either way and then top tier is people who definitely have it and would benefit from surgery. He said I was closer to the top tier. However he was not sure it would help my throat pain bc he thinks that is maybe just acid reflux. I found this discouraging bc it’s my throat problems that are affecting my singing and I already went the acid reflux route and got no relief. So I have mixed emotions. We will just have to see. I am suprisingly not too nervous about tomorrow but I think that is bc I am so tired of pain and willing to try anything.

Glad that you’re booked in for surgery, & of course hope all goes well! I would just focus on the surgery for now, & don’t get despondent about what might not get fixed- the vagus nerve can be compressed by styloids, & can cause gastric issues, so that might get resolved, or your throat pain could be caused by the inflammation of the styloids, & then it should get resolved! But you will need to be patient… Doctors don’t like to say what symptoms will be improved just to cover their own backs!
Praying for you that all goes well & you heal swiftly, God bless, Jules.
PS let us know how you get on when you’re up to it! :hugs:

Good luck today! It’s going to be just fine.

Let us know how it goes!

Surgery is done. The staff were amazing. I’m having more pain From having the tube in than pain from surgery. I am having trouble with lots of mucus in my throat. Dr said it went well. Said my styloid was very thick at top of skull, I am not sure the Length. Dr talked with husband but I will know more during follow up appointment. Also the ligament was calcified, so he took it out. It was good to know I needed the surgery. They gave me pain pills right after surgery but no prescription bc of my sensitivity to meds, so I’m just taking Tylenol and pain is very bearable. I puked several times last night but feel better now. Sleeping was tough. I don’t notice anything different withy symptoms but it’s only been 24 hrs and having such a sore throat and nausea I’m sure I’ll have to wait and see.