Thank you for your support!
It certainly sounds as if you have common ES symptoms, & given that you’ve had elongated styloids noted on your test results…I would hope that a doctor would listen to you!
Unfortunately there aren’t many Canadian doctors that we know of- there’s a list in the Doctors Info section- but otherwise Skull base surgeons, Otolaryngologists or head and neck cancer doctors are worth trying to get referred to as they operate in the area the styloids are.
Has your neurologist tried you on any nerve pain medications?
Hope that you can get a doctor to help you, best wishes…
Hi Jules, thanks for your comments. I know I am in for a struggle being here in Canada; having said that, I will travel to wherever I need to travel if I can finally get a diagnosis.
For pain meds, yes a long list of them Gabapentin, Teva Pregabalin, Carbamazepine, Lyrica, Lamotrigine, Tegretol, I think that’s all of them. Nothing really seemed to help, in fact, the side effects of some of these were as bad as the symptoms; I became unable to describe all my symptoms because I didn’t know which ones the meds were causing. I eventually weaned off everything to get an understanding of what my symptoms were; my family also commented on the meds actually making me worse. I then turned to cannabis oil (CBD) for pain management, against my neurologist’s advice; I found some relief for a while, but things have gotten bad again lately.
I’ve been reading through a lot of the threads on here, I’m starting to realize that I think I have had symptoms all my life, or at least from the age of 16 that I can remember (I’m 54 now). I have always had a very sensitive left ear, earaches, tinnitus off and on. I also suffered from classic migraines since 16 with aura, vomiting, numbness always on the left side.
I’d been to multiple Dr’s before and no one could or would come up with a diagnosis; I was often just told “the symptoms will eventually go away.” I honestly believe all these Dr’s didn’t believe me and thought I was nuts - funny, as I think about my experience with the medical profession, I really have only ever gone to them with symptoms that now appear to be ES. My symptoms have simply been progressing all my life and I had no idea.
It is becoming apparent to me that far more people are suffering with ES undiagnosed or misdiagnosed; we certainly need to shout out and get this disease recognized. There are probably many, many more out there suffering and being told nothing can be done you have to live with it. It is a devastating disease, I know how it has affected my life and my family; I am basically housebound, cannot enjoy even the basic activity because of the dizziness and balance issues, and pain.
Sorry for the long-windedness, I am just so very thankful to have stumbled across this site, reading through your experiences has given me hope for a brighter, hopefully, pain-free future. This disease isolates you; I have struggled with anger, depression, and despair. I am hopeful again. Thanks, everyone for your support,
We’re glad you found this site, too, & that you’re finally getting some long needed validation. We don’t mind people being long-winded! We are here for you to get things off your chest, share what you learn, celebrate with you when you have victories, and commiserate with you when the going is tough.
There is life after ES! Seeing an experienced surgeon (in one of the fields Jules mentioned) & having the elongated styloids & the stylohyoid ligaments fully removed provides the best long-term results. Some people do get good results w/ just having them shortened. If you don’t find anyone you’re comfortable w/ to do your surgery in Canada, there are 4 (that we know of) very experienced ES surgeons in the US ranging in location from California to Pennsylvania and many others who’ve done successful ES surgeries in many states in between.
I’m so glad you’ve found a “breath of fresh air” here.
I think alot of us find we’ve had symptoms for years without realising! I put the earache & jaw pain down to wisdom teeth! And I agree that ES is probably not that rare, just undiagnosed…
And very sorry that you’ve tried so many medications that haven’t helped…
I’m wondering if anyone else experienced an increase in symptoms in weather changes? The last week and a half or so I have increased symptoms, the vertigo is back and I have tingling in my extremities along with a substantial increase in facial pain, along with all the other symptoms I have.
Definitely some members have, I remember it in discussions before- you could use the search function to see if you could find anything mentioned?
For me, hot weather I think affected the Intracranial hypertension symptoms I had from vascular ES, & cold weather I think made all the muscles tense, which worsened symptoms.
What medications have been most helpful for everyone? Least side effects. I didn’t feel as much of the nerve pain symptoms when I was on cymbalta, but I couldn’t stay on it for other reasons. Worried about fatigue, more vision changes, and weight gain with the other nerve pain meds… but I need something! Bonus if it helps with the severe depression this syndrome brings
It’s been a long while since I’ve been on here, just needed to vent a little. My new neurologist referred me to a neurosurgeon, I thought “fantastic, this could be the right track for me to get the help I need”; had my appointment yesterday. Drove 2.5 hours each way to spend 10 minutes in front of a guy that did not exam me, did not look at my medical history, asked a couple questions about my pain, told me to not talk about other symptoms in the past and present and proceeded to tell me he believes I have damaged nerves from a bad cold that involved my sinuses and there is no fix. I begged him to take a look at my previous scans and my elongated SP’s and the report I got pointing to ES, he reluctantly agreed, I think mostly to get me out of his office. I am frustrated beyond belief. I will continue to push forward until I get someone that knows about ES and can tell me for sure if this is my problem or not. To date none of the medical professionals I have seen seem to believe ES exists, so very frustrating. Sorry for the negative rant; I guess my point is to keep pushing forward even when no-one seems to want to listen.
Beyond frustrating, especially when you’ve waited a while for an appt & travelled a way…can understand how you must be feeling & feel free to rant, we’re happy to listen!
So where do you go from here? It’s so strange & infuriating that there seems to be such lack of interest & denial of ES in Canada! Are you able to travel to the US? It is possible to do phone consults, it would be good to get an experienced doctor to evaluate your original xray.
Thinking of you & sending you hugs…
Thanks Jules, I am still waiting on an ENT referral, this particular ENT is familiar with ES and has done surgeries; it’s been 5 months since the referral was sent in, I’ve been told by his office 6-12 months to get a consult…still hope. I just booked an appt. with my family dr to get an updated 3D CT specifically looking at my SP’s, that’s towards the end of November. I will not give up, I cannot live the rest of my life like this, the last 4 1/2 years have been hell, I had all but convinced myself that I was actually crazy, thank goodness I found this forum, you’ve all confirmed I’m not. Thank you for all your support.
I’m glad that you have that ENT appt. to work towards at least, hope it’s nearer the 6 months than 12! Maybe if the new scan shows any changes they can get you in earlier? I know that US members have asked to go on a cancellation list & got earlier appts that way- do they do that in Canada? And in the UK lots of consultants do private work outside of the free NHS, so if you pay for a consultation you can jump the queue a bit- is that a possibility? Here we can then still have the rest of the treatment on our NHS. Interestibg all the different systems…until yiu’re stuck in the middle of it!
Your story is tragic & unfortunately mirrors the journeys of many people on this forum. I’m so glad to read you have an appointment w/ a doctor who “has a clue”. We have had some recent members from Canada who’ve had successful ES surgeries, but I think they’ve all live further east than you are. If your next appointment doesn’t provide you with help & answers, please let us know & I’ll try to find some of those posts so I can give you the surgeon’s names (though they are probably already on the ES Doctors List for Countries outside the US.
Thanks @Jules, I will continue to push on, it is frustrating, but I will not give up, I have considered the US but am hopeful on my ENT referral coming through sooner rather than later.
Hi @Isaiah_40_31, Yes, very frustrating, at the end of the day I’m hopeful I will get my ENT referral soon. I’ll update when I have more to share. Thanks for your support.
Finally, after red tape and kidney function tests, I have a private CT scan with contrast scheduled for next week. They are looking specifically at my SP’s measurements and angle. Is there anything else I should be requesting them to look at in the scan? Any advice I can get to get as much info for the ENT is greatly appreciated. I desperately need a diagnosis and a path to resolution. Thanks everyone.
I’m so glad you finally have your CT appt scheduled! Please make sure they also check for any calcification on your stylohyoid ligaments. Sometimes there’s only a small amount in addition to elongated styloids & sometimes the styloids are fine & only the ligament(s) are calcified & sometimes the styloids are elongated & there is significant calcification of the ligaments as well. Checking both styloids & s-h ligaments is critical.
If they’re elongated, then if they could look at the angle & gap between the styloids & cervical bone processes too, there have been members with a narrowed gap, which can squeeze structures.
Thank you for your input, I appreciate it.