Hope Again

[Weezie65]

I am so grateful to have stumbled across this site, I have hope again!

I have been suffering from various symptoms since having a really bad cold, almost 4 years ago now. I have seen a neurologist, ENT, dentist - I am undiagnosed, actually correction, my ENT was my last contact, she says I must have trigeminal nerve damage and had to learn to live with the pain and symptoms. I have had numerous CT’s, MRI’s, hearing tests, nerve tests, and oral radiology scans. My now constant symptoms are neck pain, feeling of a lump in my throat, non-stop tinnitus in both ears, dizziness, constant headache. I have a burning throbbing pain in my left ear, jaw, I get electric shock like pains in my left temple and teeth. Sometimes the left side of my face feels numb but it isn’t if that makes sense? My throat isn’t so much sore as it always feels dry and a little raw. My Dr’s originally thought it was MS, then ear problems, then TMD, here’s the thing…I had a 3D oral x-ray done and the Dr’s radiologist report noted nothing wrong with my TMJ’s but did note that I had elongated styloid processes; I made a note to point this out to my neurologist who dismissed it and said there was nothing else he could do for me. It’s been 4 years of daily suffering in pain and feeling like my head would explode from the pressure; it has severely affected my life and that of my family. Stumbling across this website has given me hope again. Reading other people’s stories has convinced me that this is what I have, and there is hope if I can only find a Dr who knows about the disease and how to diagnose it. I am obtaining my scans on CD and taking them to a new Dr. next week along with all my research, fingers crossed he will listen.

[Isaiah_40_31]

Good morning, Weezie65!

One of the best things you can take with you to a doctor’s appt is published research about ES. There are links to many articles in the Newbies’ Guide. Finding research that more specifically identifies at least part of your symptoms as belonging to ES in addition to the definition of ES will be helpful.

ES is defined as elongation of the styloid processes OR calcification of the stylohyoid ligaments OR a combination of both. This definition is easily available by doing a Google search of ES. Since you have been noted as having elongated styloid processes, any doctor that would deny you have ES would simply be ignoring the facts.

Trigeminal nerve impingement is very common w/ ES & often having the styloids removed will alleviate the symptoms to a great degree or completely. Our nerves do recover but extremely slowly & sometimes not completely. Even a reduction in symptoms can be a huge relief. All of your other symptoms have been noted by other ES sufferers over the course of the years I’ve been on this forum. ES displays itself differently in each of us though there are some symptoms that seem pretty common - throat/mouth issues (of all varieties), vocal loss, ear pain/tinnitus, eye pain/pressure, facial/neck/skull pain, shoulder pain, gastrointestinal issues, intracranial hypertension/migraines/vertigo (often caused by compression of jugular vein or carotid artery), & heart palpitation/blood pressure increase/decrease. Many of the symptoms are caused by irritation of cranial nerves that run through the area where the styloids are & removing the styloids allows those nerves to recover.

Please let us know how your appointment goes next week & keep posting questions.

We’re here for you!

[Weezie65]

Thank you, Isaiah, I literally just burst into tears reading your post. Having hope & knowing that I am not crazy and I do not have to live with this gives me immense relief already; I now have some tools in my chest to fight. Thank you so much for the advise, I have been digging and digging to find as much info on ES as possible, I have found so much on this site to help me and I will keep digging until I feel I have enough for a Dr to listen to me. Thank you again for your support, it means the world to me.

[BrooklynGirl]

Hi Weezie56,
My symptoms started with a cold too and have many of the symptoms you describe. I have had a neurologist tell me that under no circumstance were my symptoms due to ES. It was like he was telling me I was crazy.

Understanding what could be causing all of this is a big hurdle but you are now moving in the right direction.

All the best to you on your journey forward.
BG

[SewMomma]

More support coming from Georgia in the US!

One member from Canada recently struggled to find an ENT in the Toronto area who was experienced with the actual operation so be sure to keep us posted on your experience with finding a doctor so that your story can help others!

[Weezie65]

Thank you for your support!

[Jules]

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…

[Weezie65]

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,

Cheers,

Louise

[Isaiah_40_31]

Hi Weezie,

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.

[Jules]

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…

[Weezie65]

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.
Cheers, Louise

[Jules]

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.

[Swoo]

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

[Weezie65]

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.

[Jules]

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…

[Weezie65]

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.

[Jules]

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!
Keep strong!

[Isaiah_40_31]

Hi Weezie65!

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.

[Weezie65]

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.

[Weezie65]

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.