Thanks guys and yeah forsure it’s hard with the insurance situation I been having but I’ll find someone soon. I might try to consult with dr.nalwa soon if things don’t go well and see he knows about es. Also I think sometimes caffeine triggers a lot of symptoms if a es can do that…?
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Yes, caffeine can trigger some ES symptoms especially tinnitus related symptoms.
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caffeine affects my throat too, also citrusy acidic things like orange juice too, so I avoid them.
But I found it so weird that it does affect me, because pre injury (elbow to throat while playing sports) I was completely fine to eat and drink whatever. I figure it’s down to nerve sensitivity after the injury. But I could well be wrong. There may be scarring and those drinks sort of irritate it.
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That does make sense! But yeah everything is taking a while I might go back to my local ent he said comeback whenever you need to get some tests done when I mentioned the lightheadness I forgot the type he wanted me to do. He also did offer to do the surgery but I haven’t seen him on the doc list, not sure how experienced with ES he is. Dr. Gruleich in Milwaukee Wisconsin. He didn’t belive my es causes my vascular symptoms, but he did say it will help relieve the pain. Idk where to start any appointments I make out state something gets in the way or takes time… thanks guys for listening always
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My first surgeon didn’t believe ES caused vascular problems & I was left w/ left IJV compression which I just had taken care of in Oct. nearly 10 years later.
It’s best to see a doctor who is experienced w/ vascular ES if you have symptoms that indicate that might be part of your problem. In most cases whether with VES or just ES, it can take a number of months to get a surgery date. The sooner you get the scans that help show the situation in your neck, the sooner you’ll be able to get a consult & surgery date with a surgeon who can help you.
I suspect your ENT would order a CT scan with contrast to start off. If you can request to have it be a dynamic CT scan with contrast that is best to show if your styloids are squashing any vascular structures. Dynamic means the scan is taken w/ your head in different positions like turned L & R & looking up & down.
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Hey everyone so I went to dr. Nalwa (3 hours away from me) and he seemed cool. He said he’s been doing stylodlectomies for over 20 years. Although he did say eagle syndrome only causes pain and when I told them all the symptoms that I’m having that comes and goes he said it shouldn’t be related to eagle syndrome… really confused me. I’m gonna have to get a new scan he said because the radiologists didn’t label how long my styloids was. Idk what to do rn I’m lost again. My symptoms come and go but when they
comeback I feel confused, hopeless. Idk what is what anymore. I did have alright week last week but when it comes back the cycle repeats it’s self if that make sense. I’m trying my best everyday. I forgot to mention to him that sometimes when I lay down I feel this awful pressure( not sure if he could be sinus) back of my head sometimes forehead. When the doc asks me for my symptoms idk where to start lol.
And apparently I also have have a tele health appointment with dr. Costatinoi on the 9th so he might have something to say. I didn’t even remeber booking this appointment months ago lol
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And if told some people my symptoms and some told me something about Pots and it doesn’t sound very similar to what I been experiencing. I also feel like ES and cause symptoms similar to pots maybe in mild or moderate forms and it correlates.
We do see doctors dismissing symptoms all the time as not being caused by ES, so don’t let that put you off! For that reason sometimes it’s better to concentrate more on the well known symptoms, like the pain when swallowing. When you speak to Dr Costantino, then you could mention the light headed feeling & the dizziness, as he’s more up on the vascular symptoms. I’d hold off getting another CT for the time being until you see what Dr C says, as he may want you to do further testing to see what vascular issues you have…alot of the doctors don’t worry about getting the styloids measured & measure them themselves, plus you don’t really need a new CT, the ones you’ve posted on here could be re-evaluated & the styloids measured from those 
It’s more than clear that they’re significantly elongated!
Quite a few members have had POTS & ES, the symptoms are similar with vascular ES, I don’t know a huge amount about POTS but I believe you would notice the symptoms particularly when getting up from sitting or laying down, there have been some discussions about how this is tested for you could have a search for if you were concerned…
I hope that your appointment with Dr C goes well!
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Thanks Jules for the feedback. Yeah he might have more knowledge and maybe run up some tests to know what’s going on. Emotionally I been hurt but I’m positive I tend to let things flow by. My parents are really upset and days the days bedridden I get yelled at and screamed on for being lazy… it’s harder to do this than actually get a job like anybody else. I tell him “ you think I don’t want a better life just like anyone else.” Sometimes I just want to run away then deal this BS…
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@Khalil5oo - It is a fact that ES symptoms come & go so you aren’t alone in noticing that. I’m really sorry your parents aren’t being more understanding. Can you give them some of the information from this forum to read like some of the research papers or posts @Jules made in the Newbies Guide that discuss symptoms? Would that help them to better understand that you’re not being lazy or “faking it”? You could also encourage them read posts on this forum so they can see how many other people suffer like you are!
I hope your appt. w/ Dr. Costantino is VERY helpful. I’m glad it’s coming up soon. Please let us know how it goes. I’m sorry Dr. Nalwa wasn’t more encouraging.
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It’s so tough dealing with ES, especially at your age & when you’re family don’t understand 
Maybe as @Isaiah_40_31 says, show them research papers or some posts on the forum?
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Hell guys been a while. I had the consultation with dr. Constantino a month ago and he’s seems like an amazing doctor! He was very understanding and listening. He preferred a ctv that will I be doing on the 28th maybe to find more answers. Those symptoms got a lil better but then comeback with vengeance randomly. I think workin out is a trigger for me but I love it so much hard not to do. I been noticing me legs especially left side pain shooting down to my foot even more. He mentioned something about venous outflow obstruction so hopefully I’ll find more answers. I noticed a low dose of vyvanse kinda helps me focus more for a bit only took it a couple times but idk… one week I can kinda work and do deliveries and other weeks I just lay down in bed hard to do anything it’s so wierd. Hard to tell if it’s all in my head sometimes like anxiety but obviously it could be the vascular symptoms also.
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When I’m in the moment there are so many symptoms I forgot about all of them or they’re just simply not happening but I know there is a root to everything.
@Khalil5oo - I hope the CTV provides the needed answers for you to proceed w/ Dr. Costantino. I’m so glad you had a good appt. w/ him. Frustrating about symptoms coming & going but that is the way of ES. I’m glad you have some good, productive days between the bad times.
I totally understand not wanting to stop working out even if it causes ES symptoms flares. I had the same problem when I was where you are now. Surgery to reduce my styloid lengths basically gave me my life back. I hope you can get a surgery date soon after your CTV.
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That makes complete sense! working out just distracts me in the moment gives me a lil purpose. I did have shoulder surgery years ago but hard to tell if the es is wants causing my shoulder pain to come back. I can almost feel my shoulder blade pulling and tingling and also some weakness in my left shoulder at times and chest after a workout regarding the chest and shoulder muscles. I do notice when I do back workouts and just weight lifting I feel this wierd dull headache pressure either on the right side or left side head above the neck. I do get pressure headaches as well all over but they come and go.
Is it also possible or you ever heard es pain travel down to the foot or leg
It shouldn’t be possible anatomically for ES to affect the legs, but it has been mentioned by several members! Whether it’s because your posture is affected by pain/ tense muscles etc & that then transfers down the back & to the legs ( @TheDude did an interesting post about working on posture & muscles after surgery & how all the body was affected, & @vdm has a post of a list of his favourite resources which also mentions effects all through the body), or whether vagus nerve compression can have any effects on the legs , it does appear it can cause pain in the limbs, this article is interesting:
Wandering Pains: Causes, Vagus Nerve, and Relief Options
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Had my ctv scan done guys mailed my cd over to dr.constantino I think I’m one more step in the the process.
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Good to know, keep us informed!