Hi all.
Has anyone gone down the cervicogenic dizziness diagnosis route? My ENT has classified my set of symptoms as Cervicogenic Dizziness, based in the process of elimination. Obviously, dizziness is my main symptom accompanied by extreeme shart shooting pain that happens every once and a while when I turn my head too fast. I have a CT scan on file but he hasn’t looked at it. He hasn’t palpated it. He hasn’t done too much really BC he says dizziness isn’t associated with ES. Im ready to stop pushing this diagnosis and start accepting that this is going to be the new me. Wish me luck as I’m going in now to follow up with him and I really want him to just open up the CT scan and review it or at least order another CT with my head in the offending position so I can see for myself if this is/ is not the cause so I can put this issue to rest.
Hi Jenna,
Dizziness can ABSOLUTELY be a symptom of ES. It goes along w/ vascular compression by the styloid or a calcified stylohyoid ligament. The common victims are the internal carotid artery or the jugular vein. A full half of the cranial nerves also run in the area where the styloids & ligaments are & impingement or irritation of any of those are often responsible for the bulk of our ES symptoms.
The specialist you’re seeing is doing you a great disservice by not looking at your CT scan. I will pray that he will be open to ordering you a new one so you can have it done in the offending head position. Doctors can be very stubborn & hard to convince when they’re dealing w/ patients who know more than they do about an obscure health issue. Remember, “the squeaky wheel gets the grease”. If he doesn’t outright reject your request for a CT scan or to at least review your old one, I’d keep after him until he either complies w/ your request or refuses to see you anymore.
Please let us know how your appointment turns out.
How frustrating for you- personally, whether you do have ES or not, I would want another opinion, he has shown his ignorance by saying dizziness is not an ES symptom, when clearly it is with vascular ES! And if he’s not looked at your CT or felt for styloids, I wouldn’t trust him in a diagnosis! It may turn out at some point that he’s correct, but if he’s refusing to even consider other options, are you happy with that? Firstly if it was me I’d take a couple of print outs of research papers which describe vascular ES, and if possible I’d seek another opinion from someone on the list of doctors familiar with ES- you can send CTs etc to some doctors & have phone consults rather than travelling.
Thanks. I’m in the UBER now on my way to the dr. I feel like I’m preparing for battle;) every day that the specialists “pencil” me in for something then get held up with another patient is another day I have to delay traveling back to Zambia. I originally said I’d stay until I have answers but 5 days now in hotel is wearing on me. At least the tests they did yesterday (VNG) has emplified my symptoms so a good stumble and crying session in the office might help him relaize that this is not all in my head? That or they’ll take me away in a straight jacket and throw away the key 
Hi Jenna
Dizziness can DEFINITELY be a symptom of vascular ES. I was constantly dizzy with any head movements making it worse. ALL the dizziness WENT after my second surgery! I have a sneaky suspicion that your ENT hasn’t looked at your CT scan because he wouldn’t be able to read it. I speak from experience. (Cevicogenic dizziness can be caused by the vertebral artery being compressed.) Keep pushing and if they say “it’s highly unlikely”, that doesn’t rule it out. Hope your getting some sensible help today and wish you all the best!
Hi Jenna. My dizziness and slight nausea were on turning my head to the right.
Symptoms in the left were persistent earache with no cause, neck pain and ultimately fake toothache.
No ENT in the Eastern Cape would tackle the surgery, according to Dr Black, head of ENT Eastern Cape, nor Prof Fagin in Cape Town.
An Maxillofacial surgeon in PE took pity on me, and sent me to Dr Hoekstra, who works with him if reconstructive work is required.
Maybe in other provinces there are ENT specialists who will do the surgery, but it is a risky op.
Good luck!
Hi Jenna -
Did the doctor look at your CT scan? If so, what did he say?
It looks to me (I’m not a doctor) like your left styloid is a bit long & maybe your right one more normal length but is pretty angled (which can also cause problems) & also possibly you have some s-h ligament calcification on the right. You might also have a little ligament calcification or a broken styloid on the left as there looks to be a gap between the end of the styloid & the last little bit that can be seen. It’s really hard to tell for sure about any of my suggestions w/ this particular image plus I’m not the best at reading CT scans.
I hope you got some good support from this doctor. You’ve certainly spent enough time waiting to see him!
Good information, Pumpkin! Thank you for sharing this. I didn’t know the vertebral artery could also be a victim of ES.
He said the styloid was of insignificant length. I only now just got the images myself. It looks within normal limits. I’m going to walk away from this for a while and stop thinking about it. If my symptoms get worse or my dizziness doesn’t get better, I’ll revisit it. For now, I’m going to try and be business as usual and try and let my neck muscles settle down.
I guess that’s all you can do w/ the information you’ve been given. Please visit us again if things get worse. A second opinion is always worthwhile. You can contact one of the more experienced ES doctors in the US or Great Britain for a second opinion. Dr. Samji & Dr. Cognetti both do telephone consults once they have your CT images & report in hand.
I hope you find your symptoms resolving not getting worse w/ time!
Thanks so much for the support
Hi Jenna
Well done for getting this far. I totally understand your need to take some time out from the great diagnosis hunt. File everything that you’ve learned so far away and come back to it if or when you need it. You might want to file away something I learned during my quest a year or so before my Eagles diagnosis. One of the consultants I was referred to (one of many) was an ENT, as it was thought that my dizziness and passing out was an inner ear problem, i.e. Vertigo or Menniers. I knew it wasn’t, but needed to rule it out, if nothing else. After all the appropriate tests, an inner ear problem was ruled out. The consultant was convinced that my problem was cervicogenic and said that I should see a spinal consultant. After looking it up, I read that cervicogenic dizziness is caused by vertebrobasilar insufficiency and that the vertebral artery is compressed in some way by the cervical spine itself. At the time, this made sense to me, as I have some arthritis etc. in my spine. The more I looked into it, the more it seemed to make sense and I began searching for “vertebrobasilar insufficiency with head turning”, as this is when I would pass out. I found something called “Bow Hunters Syndrome” or “Beauty Parlour Syndrome” or “Rotational Vertebrobasilar Insufficiency “. Although this didn’t explain so many of my other symptoms, it might explain some of it. Anyway, I did see a spinal consultant, who insisted it was an inner ear problem (excuse my silent scream!). He did however arrange for me to have a CT Angio, which was supposed to be done with my head turned. Unfortunately, the radiographer refused to do it with my head turned, because it wasn’t written in the referral letter. I don’t blame her, as she was only doing her job properly, but I knew, once again, that nothing would show up with my head straight. Of course, it didn’t and the story went on and on before, thankfully being diagnosed with bilateral vascular ES and 2 successful surgeries. What I’m trying to say, in a very longwinded way (sorry) is that your dizziness could possibly be cervicogenic and to make sure, if you do have a CTAngio, that it is done with your head in the position that you are symptomatic!
So sorry for the long reply, you must be fed up with it all at the moment. Take good care of yourself!
Pumpkin
Jenna- so sorry that you’ve not got a diagnosis / action plan…I understand the need to take a break, I had a spell of really obsessing about every symptom & looking things up…hopefully you’ll get some help for your neck & that will either ease symptoms or rule out something else. Thinking of you, & let us know how you get on if you’re able?
Thanks so so so much
I hear you and it sounds like I’m traveling a similar path. I managed to get CT images and am going to book for another consult in October (next time I’m in a 1st world country) BUT, I’m hopeful that by then my dizziness has resolved and this is just a distant memory…(inset positive thiughts!!)
Jenna -
I don’t know which 1st world country you’ll be in, but if you go to the UK, try to see Mr. Axon in Cambridge area, if in the US, Dr. Samji in California or Dr. Cognetti in Pennsylvania (Cognetti is harder to get an appt w/ than Samji so plan ahead if that’s were you want to go). There are also some good doctors in Germany (see our Other Countries Doc List).
Hoping the best for you!