I had an ‘aha’ moment when I pulled an old CTA from 2016 and used a journal article to compare images, noting what looks like carotid impingement in the axial view on my right side (quite clearly) by my styloid. Upon pulling a CT of my tegmen, I found my styloid to be elongated, and then 3d rendered it, finding it to be apparently touching or interwined with my external carotid and my other styloid to be quite close to my left internal carotid.
I tried to measure them myself (not a radiologist here) and get 3.2 or so for my left and 4.3 or so for my right. Though stylocarotid artery syndrome would explain many of my symptoms, it would sadly not explain them all, and I have been since confirmed to have craniocervical instability and atlanto-axial instability, though fairly mild, and suspicion of tethered cord syndrome. I almost certainly DO NOT have EDS as many others would have.
So…I’m at a crossroads. I am close to scheduling with Dr. Samji. My PCP finally got the CT ordered so I can see him and the radiologist noted the measurements of these styloids as “20mm” for the left and “3 cm” for the right. That can’t be true…I’ve looked at them and how they are measured online a bunch of times, but maybe I’m crazy? Can anybody who knows more confirm? The radiologist may have just disqualified me from ES consideration, which may be appropriate, but has me a bit concerned.
Also, anybody on here in a similar boat to me? My life is an utter sh1tstorm of hell. I’m only above ground because I have kids and fight tooth and nail to make it through the pain, dysautonomia, weakness, cognitive issues, GI issues, speech issues, sleep issues, neck issues, spine issues, etc etc to make their lives amazing and survive long enough to do so. I have every symptom of almost all these disorders (IIH, CFS, ES, CCI, AAI) and they can change and worsen, come and go. I’m exhausted. It’s nice to have these leads, but I’m just tired…so tired. And now this radiologist indicates my styloids are normal, but they sure don’t seem it.
I have a similar situation too. Got a CT done to send to Dr. Samji and the report that came with it called bilateral mildly enlarged styloids. Just had an appointment with my regular ENT (non ES specialist) and he measured from that same CT at 5+ cm each.
I’m sorry your struggling so much. Unfortunately I can relate. I’ve got dysautonomia, specifically POTS and elongated styloids. As you know dysautonomia can wax and wane.
I had surgery on my right side last month. My POTS got worse for the first week or two and has since improved a bit. Not enough for me to say the surgery did anything as it could just be a better spell and I’ll get worse again. That is a familiar pattern. I can say that I have done more in the past 3 weeks than in the prior year. I can go for short walks, light shopping trips, entertain company. It’s not a full life, but I’m living and not just existing. I can function and no longer wish to die. So while I said I haven’t improved much I would say the will to live is the biggest blessing I’ve got right now and I pray I just keep getting better.
I had/have so many oddball symptoms and I’m happy to go into more detail of what remains and what has improved. I’m going for a vascular ultrasound next week to see if we can determine any added benefit to removing the left side.
May I ask why you are positive you don’t have EDS? I haven’t been worked up for EDS because I don’t want to know, but everything you have is common with EDS. I am interested to know what you had done to rule it out.
Yes your styloids look long to me, but I have no qualifications to say if they are or not. Just basing it off other images I’ve seen.
I have exactly zero hypermobility of joints or elasticity of skin. Rarer forms as well are not a match for baseline sxs/findings to the point testing has seemed silly.
I have, however, had some tremendous trauma from sports and recreational accidents as well as a terrible car accident when I was young. Elongated styloids are actually fairly common and symptomatic less commonly, but supposedly more likely to become so with changes to spinal architecture (Eg my lordosis and instability).
Additionally, I have been having increasing and concerning sxs typical of tethered cord syndrome, which I understand is comorbid with both ES and CCI/AAI, and could have been present since birth, but presenting its ugly self as I grow in to my dad bod.
Thanks for sharing, and boy can I relate. Living and not just existing is both what I celebrate and hate every day. Have to keep going. Have to. Glad you are, too.
Your right styloid looks very long & your left, moderately long. Dr. Samji will
measure the styloids himself when he gets your CT scan. He doesn’t rely on the radiologists’ measurements to diagnose ES. As Snapple2020 noted in the past, CT slices leave little gaps in the image so often the styloid lengths in a CT scan appears shorter than in reality. Doctors do sometimes find longer styloids than expected once they do ES surgery.
So many of your worst symptoms sound like they could be related to vascular compression & that could be explained by the carotid artery involvement you’ve noted. Styloid removal would definitely help if that’s the case. Sometimes the vessels don’t open fully after surgery so follow up with a vascular specialist is mandated. In most cases, it seems just removing the styloid & getting pressure off the vessels is enough.
Cool, so we agree this radiologist didn’t even try. That has been a theme with radiologists in other areas of my health. It is shocking at times, and I literally sat through gobs of lectures on medical errors in a 20 year healthcare career in administration and medical education. Sigh…
I can imagine how frustrating it is for you to experience medical incompetence after having worked in the medical profession for years. I think sometimes it comes down to “heal thyself” which is what many people on this forum have had to face when diagnosis was evading the medical community. Persistence pays & as you’re doing, getting first, second & even third opinions is a good idea. It allows you to weigh your options & decide which one(s) seem like the best to move you toward healing & provide a long term solution to the symptoms.
I agree with Isaiah…personally (just observations from on here, not a scientific fact!), if you can see the styloids down past the C1 processes, then they’ve got to be elongated- if you look at images online, the styloids are just little nubs from the skull base, not big ole spikes likes yours!
I hope that you get somewhere with Dr Samji; it sounds as though you have lots to deal with. Keep strong & keep fighting!
It’s remarkably difficult to find agreement on how to best measure the styloids. There appears to be little agreement scientifically on how to begin the measurement from the temporal bone, which helps explain why common radiologists may be missing the mark. His report ends with “does not meet any CT criteria for further evaluation.” Love that.
@kforssen - I had the same thought as one_day. Have you been evaluated for EDS? There are several types of EDS, not just hypermobility so I encourage you to have that evaluated further and do some more research on the different types. 50% of those with POTS/Dysautonomia have some form of EDS. I have EDS and Eagles. My daughter has POTS and EDS.
I wouldnt give much stock in the radiologist report. When Dr. Samji reviewed my CT scan with me, they were longer than what the radiologist measured. Docs and radiologist all have their different ways to measure. Leave that to the experts who know ES. Those styloids look pretty narly to me!
As Snapple says, quite a few members have found that their styloids when removed were quite a bit longer than they were measured at. If they were UK I’d say they probably grew extra with the really long waiting times
I’ve looked in to every type of EDS and not one matches or has any overlap with anything I experience. The closest things that could maybe overlap are that I’ve torn two shoulders maybe a little too readily and have some unexplained lung damage.
Sorry, I missed this reply. I have ruled out nearly every overlapping condition over time through the hell of fighting through a PCP office that does not believe a single word I say, and neuro groups in the PNW who know absolutely nothing about any of these conditions and just fed off my PCP office’s notes of “anxiety” and needing to “listen to my specialists that nothing is wrong.” After five years I have had enough imaging and progression of symptoms and loss of quality of life to put the pieces together almost conclusively. I’m either nuts (unlikely given the very clear pathophysiology of my issues) or I have something rare. Nowhere left to turn, so this was it. Saw a couple specialists in two different states to my PCP’s protest. Both confirmed; one directly via imaging (both MRI and CT).
No relief at all now. Things are getting worse quite quickly, which is why I have gotten more vocal and advocated more. This is my end game. Cranial CSF leak worsening, high ICP, incomprehensible back pain, cognitive dysfunction, career ended, running out of money, family’s future on the line, haven’t slept properly in over five years, fighting to make it from one hour to the next and getting worse. Neurosurgeon wants me to just try PT for a year or so first, and another year of this is unbearable and financially untenable. Considering surgery with the other NS for lack of options, even though outcome could be worse. I have hardly anything left, but my family, and less and less to offer.
I believe ES has been a problem for me since late middle school, honestly. I have had a sort of syncope issue, swallowing issues, brain fog with certain extreme head movements, etc. Unexplainable sore throat and changes in voice, bizarre unexplainable post nasal drip that never ended. The CCI appears to have been brought on by my terrible bike accident in 2012 at more than 40mph, where I was never the same and able to exercise properly afterwards. Exacerbated severely with a bad traction injury when my wife was stretching my neck one night and a snap happened and it all started. The beginning of the end of who I was. The beginning of my new fight.
Onwards and upwards. Lumbar MRI tomorrow to assess for tethered cord due to increasing bladder issues. Invasive testing for CCI surgical candidacy in Sept and for intracranial hypertension to assess severity so I can get treatment finally. Consult for ES/stylocarotid artery syndrome with Dr. Samji next month. Found a PT who is aware of CCI and works with CCI patients in the PNW (miracle, because I inspired another CCI patient who shared it with me), and also found a PRP/prolotherapy doc here who will do stem cell/prp treatments to try to improve my CCI and avoid or improve surgical outcomes.
So tough, kforssen. You’ve been through a lot but for advocating for yourself & pushing to see who you want to see & doing the research, connecting the dots, & slowly progressing toward solutions. I will be praying for you to begin to see a light at the end of this tunnel you’ve been wandering through for so long.
You are very articulate, brain fog or no. You’re a fighter & hopefully approaching the final round before solutions start appearing & recovery can begin.
Sounds like a terrible journey for you…I hope that you can finally get those doctors to listen to you, & I second what Isaiah said! Keep strong & keep fighting for your family
kforssen,
Im curious where you are in the PNW. I am just outside of Seattle myself and have had mixed levels of doctor competency in this region. I lived in Oregon too for 10 years and found the same there in that state. My daughter has an excellent neurologist for dysautonomia in Kirkland. It is an excellent group next to Evergreen Hospital area. I do have an excellent neurologist in Tacoma where I get injections. He is the one who put me on the path of eagles diagnosis. I ended up flying down to CA to have consult with Dr. Samji after 5 years+ of worsening symptoms. I have previously had prolotherapy and considered PRP. In the past when I lived in southern ca, I found the neurosurgery department at UCLA was excellent and very progressive. A close friend of mine just had a cfs leak from a prior chiari surgery and just had a repair there. I went there in extreme pain back in 1997 after 3 years of going to doctors who after much imaging said I was just drug seeking. They figured it out at UCLA.
We have all walked this path of feeling like we are crazy and doctors that dont listen and cant figure out what is wrong. You know something is wrong and this pain wears us down. Stay the path, you will endure as you are a survivor and will get your answers. Dont ever give up is my motto. Wishing you a fast path to diagnosis and recovery.
Hi kforssen & Snapple2020,
I am new to ES and also from the Seattle area. I am having similar issues with doctors/specialists in the area who have even heard of ES. I had an appointment yesterday with a pain management doc (probably the same one you saw for PRP/prolotherapy) who I have been seeing for a while. I brought up ES with him because he has it listed as a condition that he treats on his website. He completely disregarded it as a possibility and wants to look at other issues. Finding someone who can even refer me for a CT has proven difficult. Any recommendations you have for docs in the area that might refer for a CT would be greatly appreciated. I have only been following this community for a couple of days, but it is amazing how many people are following similar paths because of this crazy condition. Hang in there!
