First Timer Questions

@Christy, thank you for the prayers!! I’m starting to get some butterflies…one more day at home before leaving for CA.

My styloids both measure just under 4 cm. I’m not sure what angle they measured from so it’s possible that it’s actually longer. I guess they just recently started bothering me because they are skinny and not particularly curvy. I had many CTs and not one of the 4 radiologists commented on the styloids, despite the fact that they have grown down to the corner of my jaw. Their software should allow them to measure it after the fact though since they should have your images saved.

Regarding the do-it-yourself 2D to 3D conversion, it just took me some time fiddling with all of the options and adjustable sliding buttons to get a decent looking image. Both contrast and non-contrast can be converted. Since the styloid is dense bone, it shows up well without contrast. I never figured out how to measure the styloids for myself but there is supposed to be a way to do that also…although Jules and others say it’s not accurate anyway, even if done by a professional.

Hi Isaiah,

Your encouraging words helped make it a great day! It’s good to know that some of the post op surgery symptoms could be reduced and/or go away with time. If I can eliminate some of my symptoms I think surgery would be worth it!

Also, I’m so happy that I met a fellow ES person today! It was at my daughters routine dental appointment. I mentioned to the Dr. about my elongated styloids and asked if she can screen my daughters for that in the future and then the dental hygienist piped up and said “Hey, I have that too!” She said she gets severe head pressure just like I do! :open_mouth: She found out during dental school at 29 years old during an in class assignment to exam your own panoramic X-rays and the professor pointed it out to her. She said it’s not causing a big problem for her now as her head pain is in remission. She’s 33 and said she’ll keep an eye on it when it starts causing problems again. Also, the Dr. who looked fresh out of college said she studied this in medical school, knows all about it, and said “Yep, those are some long styloids” I showed her a pic of my panoramic x-rays. :wink:
It really helped personify this condition and made me feel like I’m not some weird alien :alien: talking to Martian’s!! LOL :rofl:

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How about that! A little “God wink” as I like to call it. Put those fears behind you and keep truckin’ along!!!

I love the expression: “Anticipation is often worse than realization”. The drive to Atlanta about did me in! I wanted to be there instantly!!! Once I got in that pre-op area I actually enjoyed the banter with the techs and nurses. Which side are you having done first?

Hi Redbird,

Wow, your day is getting close! I bet it’s such a mix set of emotions. I will definitely be praying for you! You got this! And welcome to California!
Wish you we’re coming here on better terms but hopefully you’ll be back on better ones soaking up the sun, sand, & surf :surfing_woman: :beach_umbrella: :sunny: :sunglasses:

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Christy - You can message SnappleofDiscord who put the original info on this site about making 2D images into 3D images. Here’s a recent post from SoD offering to help people who get stuck in the conversion process - Back From the Void: Successful Surgery Patient. Ask me anything!

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@SewMomma, I’m having the left side done first. Right side already causing issues so I may have to have it taken out soon also.

@Christy Thanks so much!!! It will be my third visit to the SF area. I’ve never felt like my time there was long enough. I need to go more often and stay longer…when feeling better:)

@Isaiah_40_31 Do you mind sending me pictures of your 3D scans that you mentioned to Christy? I have a CT scan but they did it with contrast. But nobody in my area says they can do any 3D imaging that goes below the jaw. My styloid process measured like 3.5 or something on the CT with contrast. Will that possibly change anything with the different image showing it better? I see my doctor tomorrow and we are discussing treatment/surgery from this point. So any info would be great.

Dysonsmom ~
Even though 3.5 cm isn’t terribly long, a very angled, thick or pointed styloid process can cause just as much problem as a longer one. The contrast shows the soft tissues as well as the bony tissues so there’s a lot more to look at in a CT w/ contrast & perhaps it will be harder to get a good look at the styloid depending on its position w/in the vascular tissues, muscles & ligaments in that area.

Don’t let your doctor put you off because your styloid “isn’t long enough.” Also, have him/her look for calcification of your stylohyoid ligaments. Calcified ligaments w/ or w/o elongated styloids can cause all the same problems as elongated styloids. There are many factors that play into ES symptoms & styloid length is just the tip of the iceberg…

Well Folks,

I think I’m one step further in getting an ES diagnosis! I requested more information on my CT scan like measurements and here’s what came back. Have a look :slightly_smiling_face: I can’t wait for my appointment with Dr. Samji on Tuesday to see what he thinks and discuss my options!! I’m hoping he’ll say I’m a candidate for surgery and can get these things out real soon because I’m in PAIN! :weary:

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I have been diagnosed with Dysautonomia/POTS for a little over six years. I have been unable to work as a nurse due to one of the many symptoms being that I have syncope… it used to be frequent but as the years progressed, I learned what my triggers were so I knew what not to do in order to keep me from feeling worse. My nurse practitioner/friend actually found a case study of a lady that had similar issues and was being treated for her cardiac issues and then also being treated for all the pain in her neck and head. The study stated that when they discovered ES, they removed the styloid and it actually fixed all her other issues as well.
I know that is not highly likely to happen the exact way with me- but we are thinking that ES could possibly be the cause of the Dys/POTS (I never had a cause- it just was always unknown). She actually went with me to my appt with my ENT and suggested ES, and when he said that it was unlikely because it was rare- she made him listen to why I fit the need for the criteria. The ENT literally has apologized a ton for not seeing it and he has gotten so excited about each thing discussed that matches along with ES. He is completely on board that it is ES and has been so intrigued by my case. I can hyperextend my neck (like when standing and loooking at the stars) and if I do that, after less than a minute or two, I will get severe pain into my head and I will slowly try to bring my head back up, but every time I will pass out. And I have done it for years and all other doctors have chose to ignore it. I have knots under my jaw that hurt when I am looking down and have to turn my head to one side. It will make like a “pop” feeling but every time I begged my old doctor to try to figure it out, he just claimed that he had that too and that it was a lymphnode… I can’t bend forward or over without being dizzy due to so much pressure in my head. There are so many things… does any of this sound like my styloid would be causing it? I have been saying for years that it had to be something in my neck causing all the issues because my head always felt too heavy for it and so I just assumed it was cutting off blood flow. But the Drs ignored that too. I’m so blessed that a childhood friend got her nurse practitioner license and took me as her patient! I feel like I am finally possibly going to see a little relief with SOME of my symptoms at least!

Also- @Christy I just realized that I hijacked your post. I’m so sorry :woman_facepalming:t2:

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Wow, what a thorough report!!! Sounds like a no-brainer to me!!! Tuesday is so soon!!! You’re almost there!!!

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Congratulations, Christy, you have all you need for your ES diagnosis! I must say you have a whopper of a styloid/calcified ligament on the right & your left has elongation plus s-h ligament calcification as well, just not as much - totally the definition of ES. The fact the left one is toying w/ your glossopharyngeal & vagus nerves explains some of your symptoms & that it’s also affecting your internal jugular vein & carotid artery is most likely the cause of your vascular symptoms.

I’m very excited for you getting this info practically on the eve of your appt w/ Dr. Samji. Please let us know what he says. Don’t be disappointed if he’s dismissive of some of your symptoms being related to ES. Just smile & nod & know, if they disappear post op, that you were right!

HOORAY! You’re nearly on your way to feeling better!



Never worry about “hijacking” a conversation on this forum. It’s a free for all here & no one has exclusive rights to a given page. :upside_down_face:

I’m sorry you’ve suffered w/ the likes of syncope & Dysautonomia/POTS for so long. It must be very frustrating to have such unpredictability w/ your body. Good to know that you’ve discovered triggers & now head positions that seem to predispose you toward some of those problems. That aspect of your symptoms does sound a lot like vascular ES to me. A CT scan w/ contrast w/ your head in one of the “irritating” positions would show more specifically what’s being compressed although a CT w/o contrast will show enough for a practiced radiologist/doctor to be able to predict what might be affected (as you can see in Christy’s post above). I believe her report is based on a CT w/o contrast as that’s what Dr. Samji requires.

I’m very pleased about the support you’re getting from your friend & that she’s done research & found information that gives you hope for complete resolution of your symptoms. That would be very wonderful, indeed, & is a possibility. I will say, that since you’ve been symptomatic for a long time, it will also take time for all the affected nerves & vascular tissues to recover. As a nurse you probably know that nerves can take up to a year to heal. Now comes the greater challenge, getting a “for sure” ES diagnosis & choosing a surgeon to do your surgery(ies).

Please keep posting updates so we can encourage you & keep up with how everything is going.


Hello Isaiah,

Yes, I was quite shocked to see my styloid process measurements and that I have vascular compression! It really does help my psyche while dealing with all my symptoms! It could definitely explain a lot! I’m all ready for my appointment on Tuesday and hope I’ll still be alive by then! Haha, I’m halfway kidding but halfway not! :open_mouth: It’s just that more than ever I feel pretty lousy!! Having my wisdom teeth extracted 3 weeks ago REALLY woke things up and agitated the area. It made everything worse and created new symptoms like feeling unsteady as if I’m slightly swaying side-to-side but, when I lay down I feel stationary. Also, my legs feel weak and fatigue like they can’t support me. I’m also getting tingly sensations in my arms, hands, and feet. If I didn’t know about ES I’d be freakin out right now! But, I’m sure the sum of all this equals up to ES so, I can just go to bed now and call it a day :sleeping:

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Hi Dysonsmom,

I second with Isaiah by saying no worries about posting anything on anyone’s topics! I’m new to this forum but I’m quickly learning that that’s what it’s here for! Support, advice, tips, encouragement, coping strategies and etc!!! So, ask away!! Wish I could help more with the clinical questions but I’m still a newbie with all this :wink:

Hi Christy,

Having your wisdom teeth out would have added more inflammation to the area already irritated by your styloids so it makes sense your symptoms would get worse after that type of oral surgery. I’m sorry that happened though! No fun!

You’ll still be fine by Tues.! Vascular symptoms are scary but almost never terminal. Even though your right styloid is longer, Dr. Samji will probably opt to remove your left styloid first since it’s the one most likely causing your more aggressive & scary symptoms. He removed my right one first for those reasons even though my left side was causing a lot more pain & was much longer.

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@Christy- wow, an amazingly thorough report! That’s pretty much the most comprehensive one I’ve ever read on here! Hope that Dr Samji can help you!
@Dysonsmom- what a brilliant friend you have, using her training & advocating for you! We’ve had a couple of members with POTS as well, but not sure if it was caused by ES or not- hope that this is the answer for you …

Hi Christy,

I am new here too, and my experience sounds a lot like yours, except I have been experiencing more dizziness, equilibrium off, ears popping, feeling of something in throat for 3 years. I have been to 3 ENTs, 2 oral surgeons, 3 GPS, 1 infectious disease dr and I have had an enlarged lymph node removed, a wisdom tooth removed, and a tonsil removed trying to get to the bottom of this. I was just about to have a second wisdom tooth removed when my ENT ordered me a catscan which showed that I have ES. I am so thankful that I know the cause of this now but am eager to start feeling better and get the quality of my life back too.
Wishing you all the best!