I wonder if mine have grown too in 9 months
I get the tongue tingling too and my face actually tingles almost constantly now. I went to the ER last summer at the advice of my doctor for that and they couldnāt figure out why. The whole right side of my face just feels tingly and tight. My vision in my right eye is worse and my lip and eye twitch. I also have swollen nodes that I can feel lower down in my neck. I think itās all connected. A lot of inflammation and our bodies are not happy. I definitely think you will get the diagnosis. It sure sounds like ES. I too had to find this on my own and then basically see someone who is familiar with it for the official diagnosis.
Considering mine are over 3cm and the angle they are its the only thing that makes sense. Although my tongue did get worse after i started feelong my styloid under my jaw so i wonder if i made nerve issues worseā¦and thats why ita worse. But i dont know. Thankfully im nkt in a ton of pain bjt i am severely uncomfortable
I feel the same way. I have always described it as discomfort but really thatās a form of pain anyway. And lately itās becoming down right painful at times. Iāve stated getting shooting pain into the jaw and ear. I notice that arm movements sometimes trigger it. Like washing my hair or holding my arms out to fold laundry etc.
Will you be looking to get surgery?
Yes. Ill do surgery in a heartbeat to have a chance for this to go away. What about you?
Do you have pics of your styloid?
I think so too even though Iāll be terrified once I commit. Right now I say take me in tomorrow lol but when I actually schedule it Iāll be a wreck. I got my CD with contrast and used the 3D tutorial here to get some images. I wish I could get some like yours! I see my styloids but would like to see them in relation to other structures.
I just played around with the imaging view. Some are in angio, some is just bones and skin and some are bones in black and white. I used radiant viewer. But regardless i can definitely see that your right us elongated for sure. And you have a diagnosis?
Do mind running through all your symptoms? Im just gathering as much info to present to my doctor in the 27th
I tried the angio view and couldnāt really tell what I was looking at. Iām mostly interested to know if I have vascular compression.
My symptoms in order of when they presented (not sure if they are related) and the related diagnosis Iāve gotten over the years :
BPPV
Tachycardia
Blood pressure fluctuations with position
Feeling faint (dysautonomia)
Burning mouth syndrome
Tingling in my face on right side with a warm fuzzy sensation as well
Heart palpitations
Fatigue
Sensation of a foreign object in the throat that became constant about 1 year ago and has gotten progressively worse (diagnosed as globus, acid reflux and prescribed multiple rounds of antibiotics)
Twitching eye, lip and tongue (benign fascilation (sp?) syndrome)
Teeth pain on right side
Shooting pain into my ear (canāt identify the trigger/happens randomly)
Intense throat pain when itās cold out or if I cry
Just an overall sense of being very unwell
I have seen regular doctors, cardiologists, neurologists, endocrinologists, dentists and ents and probably more I canāt remember. Iāve been ill for 9 years now and I know it might be not all connected but I think it also may be.
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Wow you have been through the ringer! So did you get your ES diagnosis and just arent sure about vascular compression or still trying to get a diagnosis?
I got the diagnosis last month. Yay!! Not sure about vascular compression. I didnāt ask and regret that. I have a phone consultation with Dr. Samji this coming Friday and will think about asking him. I have heard from other members that he isnāt too concerned with classic vs vascular so I donāt want to irritate him or risk losing the help he can offer me.
Funny enough when I got diagnosed I informed my regular ent who had basically written me off as a psycho and he said he had radiology review my ct and agrees I have bilateral ES. Go figure. I then told my cardiologist and she actually thinks my heart palpitations could very well be related. We have done multiple heart tests which have come back fine thankfully.
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Yeah of course he agreed when thr best ENT in the US for ES says so. So dumb! I took my 3d pics to my dentist cause i had a cleaning and he agreed eith me that its ES so just have to get my ENT on board. Hopefully i can otherwise ill be looking again. Im in idaho and there is one guy on the list here but heās about 6 hours from me. I dont care where id have to travel to as long as insurance approves it! So after your phone consult is the goal to set a surgery date?
Is there any way you can do a virtual visit with the guy 6 hours away? As long as he has your scans he should be able to see it. Although when I went in person the dr pressed it through my throat which aggravated me and my pain has been on another level since.
Yeah my goal is to have a date for surgery after this consultation. I assume if I wasnāt a candidate for surgery he wouldnāt waste his time meeting with me, but I could be wrong. Iām super scared to actual go through this procedure but I also canāt imagine living like this for much longer. I think if I knew I had vascular compression it would make the decision easier as that can be dangerous.
See under my jaw it feels close to my throat but because i still have my tonsils i can feel anythibg through my tonsil area butbit is tender. If i open my mouth whwre im pushing under my jaw it lifts up my tonsil area so it maked sense as to why ive felt a tightness pressure in my tonsil area for 9 months. It feels more so now and my tongue now so im curious to know exsctly where its pokibg at so my symptoms would make more sense. But i just cant tell. I dont think he would not do surgery. Others say his standard to operate is at least longer than 2.54cm. You are well over that. Im not sure I havent reached out as this will be my 4th ent bht forst one to discuss my 3d findings so weāll see. I had a panoramic at my dentist in 2019 as well and my styloids were llain as day then but i didnt have symptoms and im not sure of thr length they were back then. Maybe i should see if he can measure for me so i can see if in fact they grew from 2019 to when my symptoms started. Do you know what started your symptoms for you by chance? I think mine just just a ton of stress and tensing up but its crazy to me thats what sparked it.
You should definitely ask if they can measure them from before. Would be interesting to see. I have no idea what started it. I was in a bad accident 3 years prior to my issues starting but a year before my issues started I had a baby and a lot of stress beyond a normal pregnancy. So could be stress or whiplash or something that was triggered by pregnancy. I forgot my most debilitating symptoms is my chronic dizziness. Itās so chronic I forgot to mention it lol. Iām always off balance and feel like Iām rocking or something. Itās definitely worse with head movement. I also have one pupil that is larger than the other and eye lid drooping which I have seen others post about here.
Yes! I have the boat rocking sensation too if im stsnding sometimes or if i stand up too fast it feels like im going to pass out for a minute and then i normalize. Thats why im curious about vascular compression. As for the start of things i was tboned in 2014 and it caused a lot of neck issues and muscle issues and that was on my left side too except of course my c1-c6 is in the middle but the pain was left sided. Ive always had on and off issues left from that but nothing like this. I think the pupil thing is a huge indicator of vascular compression.
Omg I have the exact same thing with rocking while standing. I can walk okay. But I do bump into walls when trying to go into a room or something. I was also diagnosed with degenerative disc disease after an mri but after looking into that more it seems most people have that as it just happens with age. Iām 34 now so Iām ate the perfect age for an eagles diagnosis too lol. The pupil thing is freaky but you can imagine my shock when I ran across it here. Itās called horners syndrome I believe although Iāve not been diagnosed with that.
Im 30 now but symtoms started a few months before when i was 29. And it being almoat 7 years since my car accident leaves plenty of time for my styloids to grow before causeing issues. I dont have previous scans except one thr dentist one to compare it to before my car accident though. My pupils look the same size. But definitely bring that up during your phone consult. Is your insurance paying for that or did you seek him out personally and pay for it?
I have the same theory that it could be caused by the accident and it just took that many years to get bad enough. If you think back can you remember subtle signs?
So for the consult I will be paying $500 out of pocket but if I have surgery they will bill my insurance. Iām from the Chicago area and I have a PPO so luckily I can kinda go wherever although I will need to confirm with them before I actually go through with it. If they wonāt cover it I will find a way. I do have an ent here who agreed to operate but he wants to do it introrally and remove my tonsil too. He only take the tip off and if Iām gonna do this I want it done externally and as much removed as possible. Iāve started having symptoms on my right side now so Iām sure I may need 2 surgeries.
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