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 
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! 
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@Isaiah_40_31
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 
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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!
Dysonsmom,
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. 
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! 
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 
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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 
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!
Courtney
I had my tonsil out about 4 weeks ago and am in the same boat. Definitely made things worse for me too. I also feel like I should be running to the emergency room every day because I feel like such shit and have such scary symptoms but am praying that it all works out and I make it to my 4/22 appt.
Hi CourtneyDM,
Wow, sounds like we have a lot in common regarding our symptoms!!!
I just found out too and find it so relieving that I finally have a word for all this bodily nonsense!! Now, the extra challenge is waiting to be seen and get treated and that’s so hard to do when you feel so crappy!! I must have reached out to Dr. Samji’s office a handful of times to check for cancellations or ask them if I should get squeezed in for an urgent appointment but, like a calm flight attendant they kept me calm and said nope I’ll be just fine until my appointment. I’ll tell ya though, it’s been one of the longest 3 weeks of my life and who knows if I have to wait many more weeks to get the surgery! My Hubby suggested I get a medical alert system to wear because it scares him to death if I don’t respond back from a call or text right away! 
One concern I have is that Dr. Samji may want to hold off a little while until I’m completely healed from my oral surgery. All my swelling is gone but I still have stiffness in my jaw and holes to be filled. I’m just praying that won’t postpone or complicate anything!
You’ll be in my prayers and thoughts and we’ll get through this together! There’s definitely truth in the saying “What Doesn’t Kill You Makes You Stronger “ so, I can see a blessing in that! (((Hugs)))
Good morning! I am new to this site, but so very thankful to have found it. My symptoms began about a year and a half ago, but have been constant for the last 6 weeks. I have been to my family dr numerous times, dentist, oral surgeon etc. I finally went into the ER last week and the Dr. ordered a CT scan (w/ contrast). Here in MN, it looks like there is only 1 Dr. at the U of M who has seen this before, so I am waiting to get into him. First appointment is 4/30/19 if he can’t see me sooner. Dr. Ondreys’ office said he does maybe one per year. Should I be concerned about that? I have also read that some want a CT with no contrast, is this something that I should be looking into? I also called the Mayo clinic in Rochester and they do not see anyone with this condition. The ENT that declined to see me gave me Prednisone but it isn’t really helping. He said they have only seen it in medical books, so they were just guessing on what to give me. Has anyone had gabapentin/Neurontin and has it helped any?
Thanks for any help or input:)
Patty
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Gabapentin etc. can help if you’re getting nerve pain from irritated nerves. If the pain is constant, or maybe electric shock pains then it could be down to nerves. Sometimes it can take a while to get thr right medication & dosage. I take Amitriptyline which helps me, but doesn’t help everyone.
Mayo clinics don’t seem to be up on Eagle’s, surprisingly. If a doctor is on our list then they must have done a successful surgery with at least one member, but unfortunately can’t always give the member’s name, as the list has been going a few years. If the surgeon is experienced in operating on the head/ neck / skull base area & are willing to take as much of the styloid process off as possible then they should be a good bet! I would read up as much as you can on here , & go armed with questions, & see how confident you feel with the doctor.
It’s been suggested on here that you could ask to be put on a cancellation list to get in sooner if a month seems too long to wait!
Hello All,
Well, I’m happy to report that for the first time in seeing more than a dozen Dr.s I walked out of an appointment yesterday with a happy smile on my face instead of a sad one being flooded with tears. I met with Dr.Samji and after his meticulous examination he concluded that I have ES! He also said that out of all the 300+ patients he’s seen I was in his top 5 for having the most elongated and thickest styloid process Wowzers, I’ve always wanted to be in the top 5 for something but never for something like this…LOL!!
So, on April 29th (on my daughter’s b-day) I will get my left side surgically removed first since that side is causing more vascular problems and then hopefully I will have the other side done 3 mths later. I’m very much looking forward to it! I know hard days are ahead with post-op healing but I will exchange that for the daily assault and toll that ES takes on a body!!
After my thorough discussions with Dr.Samji about ES and surgery I have full confidence that he will do a great job! He has a lot of experience and I can tell he is not going to perform a surgery on just anybody if he feels it wouldn’t help! In fact he gave me an example of a patient who was referred by his colleague who came in with bilateral elongated styloid process but her’s grew perfectly straight down and was asymptomatic so, he will not perform surgery in her case unless they start becoming symptomatic! I got the sense that he is very black and white either you got it or you don’t and if you do the only real way to prove it is by having the surgery done to see if your symptoms get better. He doesn’t sugar coat anything like saying “Yes, having surgery will be 100% successful and you’ll be symptom free!” No, he gives you a more realistic outlook and says it varies from one person to another but on average the success rate is high like 90%.
Below, are a few other Q&A questions I thought worth mentioning:
Q: “I’ve gone to multiple Dr.’s and all expect 1 missed seeing this on my x-rays so why don’t more Dr.s know about ES?”
A: “ES is a RARE disorder but I think it’s one that is often underdiagnosed and misdiagnosed do to the fact that symptoms can be bunched in with other Chronic Pain Syndromes like Fibromyalgia and other poorly understood medical conditions. Furthermore, living in chronic pain can lead to anxiety and depression so, oftentimes patients are given multiple medications on a trial and error basis hoping things will get better to ultimately reduce symptoms.”
Q:” Have I had this my whole life? If so, why did I start having symptoms at 38?”
A: “ES is not well studied in the medical science field so, I don’t have an answer for that. However, it is thought that as we get older we have more traumas like accidents, tonsils removed, and wisdom teeth removed that changes the musculature. Also, it appears more problematic in petite facial frames due to having less room.”
Q: “I’ve had chiropractors work on my neck and face to help alleviate my symptoms. Did this in anyway aggravate and/or create a bigger problem for me?”
A: “No, commit, that’s beyond my scope of study. However, once you get the surgery I advise you to never go to a chiropractor again because the manipulation of the neck can put undo strain and unknown harm to nerves and muscles around the incision site.”
Q. “How long will it take to heal after surgery?”
A: “In about 2-3 weeks the swelling will go down and you will feel more comfortable. However, this is a major surgery that takes about 90min so, do expect pain. The prescribed medications will help manage that.”
Q: “Oh, yeah, I’ve just recently developed tingling sensations throughout my body, weakness in my legs, light headed, and feel unbalanced while standing. These are new symptoms for me that occurred after getting my wisdom teeth taken out. Could this be related?”
A: “I can’t say for sure but, once people get an ES diagnosis they’re more prone to blaming all health problems/concerns on it. So, it’s a wait and see process. If the symptoms go away after surgery then you know it was caused by ES.”
I hope this was helpful to those wanting answers to all those burning questions! Feel free to ask me anything else. I had a whole list of questions for Dr. Samji. He knows me well now!! LOL 
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