Hello everyone! I’m new to the group and newly diagnosed as of Dec 27th 2023, I’m a 51 y/o female I was diagnosed with ES after going to the ER with stroke like symptoms.
Just to put a few things into prospective I have been diagnosed with psuedo tumor cerebri since 1995 and fibromyalsia for the last 20 yrs.
March 10th 2023 I was diagnosed with suspected temporal arteritis from a vascular surgeon due to me telling him that I was having severe pain to the right side of my head, face jaw, teeth and neck plus I was having chest pains for about 4 months.
March 13th 2023 I was scheduled for a biopsy done in the hospital and was released the March 16th 2023 I passed out in the shower and broke my L1, I was basically told that my blood pressure was so low 86/54 which may have contributed to me passing out. However since March 16th I suffer with low blood pressure, right side weakness plus I’m always dizzy and passing out with no reason as to why.
So what brought me to the emergency room was I was getting what felt like electric shocks on the right side of my head to my toe, while also feeling like I was being poked with a hot poker, this all started on November 24th 2023 and was progressively getting worse going from once a week to every other day while having setbacks of feeling confused on not recalling memories or what happened just a few minutes ago and trying to find words when speaking because you can’t remember the word.
Mind you I am on so much medication including Gabapentin, Dilaudid just to name two. The pain from this is so debilitating I am unable to speak or make sense when I can talk, based on what my husband told the doctors he thought I was having a stroke.
I have made numerous appointments with doctors in the area of where I live, to be disappointed because the doctor’s are not familiar with ES. I did however have an appointment with an Surgical Oncologist on January 16th 2024 he sent me for a Cat scan with contrast and I follow up 2/7/24.
The Cat scan results were sent to my phone and it states:
Mild elongation of the bilateral styloid processes measuring 3.2 cm on right s and 3.0 cm on left.
Endodontal disease with periapical lucency associated with the right maidibular molar.
I am scared to say the least but I want to know why I feel this way, and is my life going to be a prolonged life of constant pain.
All help will be very much appreciated.
Hi & welcome to the site!
So sorry that you’ve been in so much pain and passing out, it must be really tough…
Your styloids don’t seem as long as some, but it’s not just the length of styloids which can cause symptoms, the angle which they’re growing can cause symptoms too. It sounds like you could have neuralgia with the facial or trigeminal nerve, both commonly affected by ES; have the medications helped at all with that?
It sounds as if there could be some carotid artery compression or irritation- do the stroke/ passing out episodes happen when your head’s in certain positions? Hopefully the CT with contrast will show if there’s compression by the styloids.
The vagus nerve is also often affected, and this can affect blood pressure, and could possibly cause you to pass out, so that might be the issue.
If you’ve not seen our doctors list, here’s a link:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
Dr Constantino in NY would be a good surgeon to see as he’s experienced with vascular ES, so I’d suggest that you get a referral to him.
I hope that you’re able to get some treatment soon!
Hi Jules,
Thank you for responding so quickly.
Medication hasn’t helped sad to say, and yes the movement of my head either bending forward or even turning from left to right can cause me dizziness or the feeling of passing out.
I also notice when laying down and my head is in a certain position the bed feels like its spinning and I get dizzy and I can’t get off the bed or speak, so I sleep in either in a recliner or I have 3-4 pillows to keep me upright.
When this happens I’m so fatigued for days or even weeks at a time.
I contacted Dr. Constantino office and made an appointment for 2/22/24, this is nothing more than a blessing.
Based on the fact you notice increased symptoms with certain head positions, I’d definitely say your styloids or stylohyoid ligaments if calcified are pressing on your internal carotid artery(ies). Please ask for your CT w/ contrast to be done dynamically i.e. especially with your head in the positions that cause symptoms as that will help to better show what is being compressed. Sometimes having the head in neutral (i.e. face toward the ceiling) doesn’t show the compression & so a misdiagnosis is possible.
I’m really glad you’ve gotten an appt. w/ Dr. Costantino so soon. That’s really great!
Horrible when you get dizziness that badly 
Great that you have an appt with Dr C that quickly though, that is good news!
My styloid processes are 3.5cm on the right and 3.2cm on the left and they were classed as “normal”. I was told that with such small elongation they are unlikely to be causing symptoms. Hope you get some answers.
@Skatkat - the problem w/ a cut & dried answer like you received is that it doesn’t take into consideration other features of the styloids which can make them symptomatic no matter what their length i.e. how thick they are, how curved, the angle of growth, are they twisted/spiraled, super pointed like needles, etc. People w/ “normal” length styloids can absolutely have ES symptoms due to other features than length. We also have members whose styloids have measured what yours did who are symptomatic even at that “end of normal” length range.
That’s what worries me, i still have lots of symptoms, I’m wondering whether to get a second opinion on it.