The Vestibular Migraine & Secondary Hydrops Community
Read our welcome post, user support wiki & visit our member recommended products page

Update from my ENT appt today


#1

Hi everyone
You may have seen from my previous post that I have been suffering for 2yrs with headache, facial pain, ear pressure, dizziness and have tried a number of meds from my neuro with little success which made me question if I truly have migraine.
I recently had a CT sinus scan (basically begged my GP for a scan when I cud not stick the nasal pressure any longer) which prompted an ENT appt today. I have now been diagnosed with chronic maxillary atelectasis/silent sinus syndrome…basically on my right side I have an enlarged ethmoid air cell, an enlarged air filled middle turbinate, complete blockage of the maxillary sinus and drainage pathways due to bony remodeling and and orbital floor involvement (my right eye socket has partially collapsed downward from negative pressure). This will require surgery to fix. However the ENT could not commit to the surgery fixing ALL of my symptoms- she said I may have migraine AND this issue. So while I feel that I may finally be getting somewhere…there is no guarantee…aaarrrghhhhh
Has anyone come across this before or had similar surgery? I do have another appt with a different ENT next week for a 2nd opinion - he is a professor and therefore may have more experience of this. I also feel after the appt today that I will have more informed questions for him…the appt today was quite rushed as she had other patients waiting!!!

@Jojo65 - you mentioned to me before about your nasal pain and that you had 2 endoscopies which were clear. The ENT told me today that you cannot diagnose sinus disease/nasal anomalies by endoscope alone - A CT scan is needed also to see areas that the endoscope cannot see. Hope this helps…

Best wishes
Mav


#2

Thank you so much for reporting back…much appreciated. Nose pressure and pain has always been one my biggest problems ( hence the investigations) after dizziness and ear pressure. You seem to have ALOT going on with your sinuses. My Neuro is convinced mine is indeed migraine. I have just started Venlafaxine and my symptoms have improved a little. Im excited to hear what this professor has to add…it could well be possible you may be very unlucky and have all this and migraine going on…
Jo x


#3

Or it’s causing migraine, which is also possible.

Migraine has to have a cause, right? Don’t just accept ‘migraine’. (Appreciate for most the cause is illusive - in my case it was trauma).

That’s sounds really trying Mav, take your time but follow that to its logical conclusion and see if you can get relief.


#4

I think it far more likely the sinus issues are causing the MAV`-like symptoms. Why should anybody be that unlucky to get two different balance problems. @mav can probably work it out by pattern/timing, family history or lack if, etc What fits is most probably what it is.

@mav Glad you are getting some answers at last. With my friend who always get relief from Sudafed always suspected that was the cause of her vertigo. Would seem so logical. She’ll be interested in your findings too. Hope your research pays dividends with eventual relief. Strange really my friends always been told by doctor and VRT her sinuses are nothing to do with it yet the wife of one of my nephews who is a Community Nurse suddenly had severe dizzy spells and had a nasal operation to remove a bony spur pressing on one sinus, and she’s been dizzy-free ever since. Helen


#5

head … nail … on it.


#6

Thanks so much for your replies…they keep me going as my head is literally melted from all of this!!! To think that the very first expert I went in to in 2016 was an ENT and he didn’t do nasal endoscopy or sinus CT - he was so sure it was labryinthitis and he sent me for ENG/VNG/Caloric testing and when those tests were clear he basically washed his hands of me and told me in a phone call probably vestibular migraine and posted me out a prescription for Ami. I learnt from the ENT today that those particular tests ONLY test the semi-circular canals, they do not test Eustachian tube dysfunction so ET dysfunction as a cause of dizziness and pressure has also not yet been ruled out in my case…what is wrong with these people!! If migraine is a diagnosis of exclusion, you would think that these experts would do all the tests to actually exclude everything first, particularly if the patient isn’t getting better despite trying different meds


#7

Trouble is I think it’s not Terminal so with most consultants it just doesn’t rate.


#8

Hi Onandon03
You might like to tell your friend that my ENT told me today that VRT will only work if your balance issues are caused by semi-circular canal problems. As my ENG/VNG tests were normal, she said that’s why the VRT didn’t work for me…so something else is causing the dizziness - ET dysfunction, sinus disease, migraine.
Mav


#9

My ENT said it may be helpful for me even though they could find nothing wrong with my ENG/VNG tests (granted we couldn’t complete the caloric because I threw up though).

If VRT is gentle, you can think of it as sort of “exposure therapy”, then I think it can be helpful and tighten up your balance a bit from day-to-day. Not a silver bullet, but relatively good return on investment for <15min per day I think, provided it doesn’t make you worse.


#10

I think the issue is the more advanced exercises can make a lot of people worse.

Also I was seeing a PT charging £170 a session. Not a good return on investment in my case.

But really you can get the sheets and do these things at home without a PT.


#11

Yep, it is expensive, but after a few sessions you get the hang of it and I feel that you don’t need to go anymore. I mean, I can basically just write the best exercises in a few sentances: Act like you are walking on a tightrope, close your eyes and stand for 5-10 seconds, open your eyes and look at a spot on the wall, repeat. Repeat with fast and slow head turns. Then take 3 steps eyes close, eyes open, repeat etc… Very basic stuff but it can help a bit. So can walking though :grinning:


#12

After the last two years of hell, my experience is that these experts don’t really LISTEN, they are so busy and their clinics are full to the brim, (even the private ones although they are in control of the amount of time allotted to each patient which is not enough given the fees charged), they hear headache and immediately it’s a migraine diagnosis once you have a clear brain MRI…they don’t stop to think there might be comorbidities that are contributing to the patients nightmare and then you are put on a path of meds that may never fix the problem given that you are expected to trial each med for at least 3 months. In my case, in hindsight, the first person I went to should have done a tympanogram on my ears for the ear pressure symptoms, ENG/VNG for the semicircular canals for the dizzies and a sinus CT scan for the face/nose pain - 3 simple tests, that’s it 3 simple tests!! And then if they were clear he should have referred me to Neuro. Instead I have gone from Billy to Jack myself trying to figure this out, I haven’t worked or driven for past 2 yrs and the impact on my long suffering family is unquantifiable…I honestly can’t comprehend this…and to think I was also told this could be menopause - unbelievable.
Keep digging for answers everyone…especially if you don’t have a prior headache history
Mav


#13

I really feel for you…i have never experienced anything like the nose pressure and pain i get. Many times ive posted how i cant believe my nose and ears havnt burst open…its quite subdued at the minute but when it starts i find it very difficult to cope with.
I always thought my brain scan would have picked any sinus issues up…how wrong was i???
Lets hope the professor gives some answers…im very interested to find out
Jo x


#14

I will definitely have a long list of questions for the professor next week - he will prob need to lie down for a rest after my appt…lol
It’s on Fri morn 26 Oct so I will let you know what he says

I would greatly welcome any suggestions/inputs that any of you may have, stuff to ask the Prof., it’s very hard to think straight when you feel so bad every day. I really want to make this appt count, I want to walk away from it and not be kicking myself for forgetting to ask something. I really want to pin him down for answers instead of the vague stuff I have been getting up to now.

Thanks so much
Mav


#15

Absolutely. And everybody need a diagnosis that makes sense and that they can believe in. I do know the neuro-oto I saw took very detailed medical history and I wouldn’t have got a MAV diagnosis without a headache history from him for sure.

MAV can be activated by fluctuating hormones at menopause. Mine which had been in remission since menarche was. Common pattern. They don’t go in much though for ‘root cause’.

Thanks for the advice but she dropped VRT after two sessions. Her first grandchild arrived and new mother too ill to cope. Helen


#16

Word!

Speaking from someone who got MAV through trauma, I totally agree … my first consultant completely ignored my ear trauma (with severe imbalance & nausea) ~6 months prior to my MAV symptom constellation and instead jumped on the fact that I had reported one migraine I had had several years earlier (the only migraine I had had in my life and was nothing like the MAV migraines). Not that there was probably much they could do about the trauma at this stage because my MAV is probably Secondary Hydrops post PLF (picked up by my 4th consultant!), but at least she could have acknowledged the likelihood of the trauma having been the cause of my condition so I didn’t then get annoyed and spend £££££££ going to 3 further consultants with further anxiety and lack of answers.

Another quote worthy of a pin! Thanks Mav!


#17

I had the same issue I had one previous episode of headache the previous year that was present for a few weeks because I was under pressure in work and my poor Mam had suffered a brain bleed a couple of months prior and I was under a LOT of strain - this was then taken as evidence of a prior headache history. Thinking back to when this started I kept saying to the GP and latterly to the neuro that it felt like a sinus infection with dizziness but without congestion - the response was always the statistic that 80% of people who think they have sinus headache actually have migraine,BUT what about the remaining 20% that’s a big number to potentially be given an incorrect migraine diagnosis…

Anyway it remains to be seen what the Prof says next week, perhaps he will be able to give me a greater indication if I have two issues or if my symptoms are one or the other. Hopefully by then I will have gotten over the desire to throw myself on the ground and scream and flail around like a toddler having a tantrum in total frustration…

Mav


#18

What does that even mean? Migraine still has to have a driver, a cause. If you wake up one day with MAV there has to be a reason why today you have a chronic dizzy condition but a year before you didn’t. ‘Migraine’ explains nothing except perhaps the doctor can’t explain it, which is the real truth.

It’s a bit like witnessing a car accident, and someone says ‘there’s been had an accident’ … well, gee, thanks for the scoop! That doesn’t explain why the accident occurred!

If you have an identified condition which is the source of your MAV you are in some ways one of the lucky ones because:

  • if they successfully treat that condition MAV might go away
  • you can stop searching for answers

Being diagnosed with ‘migraine’ simply means they don’t have an answer imho.

Worse, ask ‘what is migraine?’, ‘how come I’m having specifically “dizzy” migraines?’ There is no answer.

(Given sufferers of secondary hydrops get identical symptoms I suspect it’s related to instability of response of the inner ear, but then one needs to ask, why is that happening?)

The other thing which isn’t explained and speaks volumes is how many people end up being able to go without medication and feeling ‘alright’. At least mostly recovered then. That suggests to me there was some kind of disease process which stopped or at least to some extent resolved or an injury which to some extent healed. What’s the difference between those people and those who have to remain on medication? What explains that difference? Is the first group just braver? Have they compensated? If so, compensated for what change and why the change?

In short, ‘migraine’ is not an explanation, it’s a bucket of patients. But I suppose they can take solace in knowing the doctors have ruled out all other ‘known’ causes, though clearly there’s got to be a lot of unknown causes out there!


#19

Hi turnitaround
I agree with you that there has to be a cause and since my ENT appt yesterday I have been running various scenarios thru my mind and I thought of it like this…
Let’s say 2 yrs ago when I had my initial symptoms of intense dizziness, nausea, head pain (more intense at back of head), head pressure and facial nose pain, brain fog and these didn’t respond to Serc and I had clear brain MRI so no tumor, aneurysm etc. let’s then say I had a Sinus CT scan and it showed the anomalies that mine has showed. Let’s say I then went to the Prof that I am going to next week, Would the conclusion at the time have been that the CT findings were irrelevant and would I still have been told that my symptoms are migraine even tho there is no test for migraine? this is where the rubber hits the road as far as I am concerned…so my questions for the Prof will be based on this thinking. I will ask him that if I had presented to him in Sept 2016 with my symptoms and my sinus CT scan how much weight would he have put on the findings of the scan in coming to the diagnosis, would the diagnosis of migraine have entered his head in the face of the CT findings? Would he have been confident that my symptoms were as a result of what the scan showed and treated me for sinus disease or would he have recommended a 2yr “experiment” of various meds in case it was migraine?. I hope that asking him in this way rather than asking if I have both migraine and sinus disease will yield greater clarity ie it forces a discussion about tangible visible evidence (the scan) and it prompts a discussion about why that evidence would be discounted in favor of a migraine diagnosis (which is essentially a “suspicion” based on symptoms and exclusion of other likely causes). I think this might be like the principle of Occam’s Razor - in the face of two competing hypothesis, the simplest explanation is often the most likely.

The Prof is an otolaryngologist and a neuro-otologist and has been practicing forever so I am hoping he can put many things into perspective for me.

Mav


#20

Haha. love it. My only issue here is that I don’t feel ‘migraine’ is an explanation at all, it just raises more questions.

I would say this though - you have very obvious issues that need to be addressed and until they are there is probably not much point speculating too much.

My hunch is that things will get as lot better if you resolve your sinus issues.

Sorry if you’ve mentioned this before, but do you or your doc have any idea how it got that way?