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Update from my ENT appt today


#21

Hi
No the ENT appt yesterday was very rushed so there was no time to discuss how my sinus have gotten the way they are. There is however a possible explanation in my history - in 2013 I went to my dentist with a “lump” inside my LEFT cheek it wasn’t visible, I had a bit of tenderness and when I rummaged around I could feel a soft lump. Dentist referred me to an oral maxillofacial surgeon, he diagnosed me with a very common facial lymph node and said not to worry unless it got bigge which it hasn’t. However he wrote back to the dentist and in that report he wrote that I have mild facial asymmetry with orbital dystopia on the RIGHT side that wasn’t causing me any trouble. Orbital dystopia means that one eye socket is slightly lower down than the other. He neglected to say that that if this got worse it could be an indicator of an underlying condition.so fast forward to yest, when I mentioned this to the ENT before she looked at my scan, she immediately said that orbital dystopia can be a sign of an a particular sinus condition and she would know when she looked at the scan. Immediately she said that the orbital dystopia was very evident and coupled with the enlarged turbinate and bony remodeling of the drainage pathways she diagnosed silent sinus syndrome of which orbital dystopia is a hallmark feature.


#22

Bingo … all fitting into place.

I wish you the very best with sorting this out and hope you are not too uncomfortable in the meantime.

Thank goodness you weren’t deterred and you and the doctor who arranged the CT deserve a pat on the back!


#23

Yes I am beginning to wonder if there is a cascade of symptoms at play here. Symptomless orbital dystopia in 2013 which may have been an indicator of the start of sinus malforming which slowly deteriorated over time and culminated in the events of Sept 2016…think straw - camel’s back…


#24

Yep, and btw I think a lot of “co-morbidity” they talk about seems rubbish.

Most people with MAV have BPPV, usually when lying down in bed. Some doctors will claim this is a co-morbidity “You have migraine and BPPV” as if you were so unlucky as to get both at the same time

But to me it’s obvious there is an issue causing the migraine & the BPPV which is common.

I guess its a different language, where ‘co-morbidity’ is coming from a diagnosis angle, and diagnosis is NOT the same as an aetiology which is a distinction I feel a lot of people miss.


#25

You are so right…isn’t it amazing the total rubbish that gets thrown at you as possible explanation…it honestly makes my blood boil.

Before I registered on this forum, I lurked here for a long time with a friend of mine (who had registered) and who is in the same boat but unlike me she has a prior migraine history. We always read your posts (and those of Onandon) with great interest and had several discussions about them and how you looked at things. And so I wanted to say a massive thank you to you for taking the time to share your experiences in particular for the logic you apply to what is happening to you and others - it has truly made me look back over the last 2yrs and it has prompted me to really question what I have been told and to look for more plausible explanations for what is happening to me, in order that I may get better. Without this forum and the shared stories and wisdom of all of the folks who post on here, I most certainly would still be floundering.

Thanks so much
Mav


#26

Gosh, that’s great to hear Mav thank you!

It’s not been easy at times, because people get very attached to their own concept of why they are ill and this can cause a lot of friction. But I truly believe we should not take anything for granted and not accept suspiciously over-simplistic explanations for things. The body is incredibly complex and interconnected. It is clear to me that an upset in one part of the body can have a detrimental impact on another. Medicine struggles with this it seems.

It’s wonderful to hear that someone appreciates the debate.


#27

A very wise former boss of mine used to say “God gave us two ears and one mouth, which means use them in that order ie listen more than you speak, you will learn a lot more about the situation you face and the conclusions you come to”. This is a lesson that many specialists should learn, LISTEN to the patient in front of you, their history provides valuable clues as to what is happening to them.

Mav


#28

So true!

Anyway, Mav, please keep us updated on your progress and thanks for sharing some very personal diagnostics.

Given the open nature of this site it is true public service when people talk about and detail their troubles for the benefit of others, regardless of anonymity.


#29

Absolutely…I will post next week after my Prof appt.
Look after yourself, keep battling
Mav


#30

The vet I once worked for always said , when diagnosing, ‘Common things is common’. Lots of people experience migraine, millions worldwide, so they’ve an increased chance of being right? They most certainly don’t hear horses and think zebras! That’s for sure, Helen


#31

So true Helen…I wish I could get into a room with both an ENT and a neurologist, lock the door and give them my history and scans and make them fight it out until a plausible explanation is found and a treatment plan is reached with a timeframe attached and success criteria outlined!! I guess I might as well dream here as in bed…
Mav


#32

Hi

When I first got ill with MAV i was put in touch with a friend of a friend who had had a very severe dizziness-related problem (nausea/vomiting/vertigo 24/7). i spoke to her and she had a severe (but hidden) sinus infection which she finally had surgery for and was COMPLETELY CURED of the dizziness after surgery.

(a) i don’t know if she had the same as you have
(b) i obviously can’t promise miracles

but you may be heartened to know that some people with some severe dizziness symptoms caused by sinus infections/complications have been cured by surgery.

But of course your Dr is not going to guarantee that surgery will get rid of all your symptoms - how could he possibly guarantee that? a surgeon doing a hip replacement will never guarantee all the pain will go away and that you’ll be able to walk perfectly.

FYI i didn’t have the same problem as this person, and mine does definitely seem to be migraine and nothing sinus-related.


#33

Thanks gidlabu for telling me about your friend…it gives me hope that perhaps I am on the right track. And what you say is true, no surgeon will give guarantees. I think the view that I have to take at this stage is if the surgeon says to me he is not sure if the sinus is causing my symptoms but that I will need surgery anyway to prevent my sinus malformation getting worse over time, I will just have to hope that the surgery will address many issues - perhaps the only way I will know it isn’t migraine is if I have the surgery and my symptoms disappear. He also said that ONLY the sinuses in forehead are visible on a Brain MRI - and so my neuro was incorrect in telling me that my sinuses were clear - unbelievable! Had I been given the correct info on this, I would have pushed for a sinus ct scan then 1.5 yrs ago.
Do you know if your friend had a tough time recovering from the surgery - I have read reports where people sailed thru it and others who were still recovering even 6/8 weeks post op.

Thanks so much
Mav


#34

Hi
Just back from my appt with the Prof. It was only a 20 minute appt but it was the best 20 minutes of this nightmare - he is truly a diagnostician. He sat me down and said I know you have been around the houses and have loads of reports and info but with my patients I start with a detailed history of the symptoms you are currently having and then we work backwards. X number of questions about head pain, then ears, then nose, then face, then dizziness - it was so structured and methodical. Then he examined ears, nasal endoscopy, checked me for BPPV and then then looked at ct scan. He concluded that the ENT I went to last week is correct - I have sinus disease that has been many years in the making - an enlarged middle turbinate which is in contact with my septum, ostiomeatal complex obstruction, complete block of the right maxillary sinus due to negative pressure - this is filled with mucus and inflammation, and my right orbital floor has been displaced downwards (orbital dystopia) as a result. All of this is also causing my ears to be blocked - hence the foggy woolly head underwater feeling. He explained that the relief I am getting from sudafed is two fold - it’s opening up my ears and shrinking inflamed nasal tissue. He said that migraine and sinus disease cause similar symptoms but in the face of the ct scan it is more likely my problem is sinus/ear related. He said I could be unlucky and also have migraine but as ear/sinus issues can both trigger migraine (I nearly fell off the chair at that news), it is more plausible in my case to say that my sinus disease is at the root of my problems. He said I do need surgery and he expects I will get a huge improvement in my symptoms ( draining the maxillary sinus piece of the surgery should provide a big change in symptoms). He said the only wrinkle is the dizziness piece - he is concerned about that because while I do have a 16% balance weakness in one ear which showed on prior ENG/VNG it is not statistically significant. He recommended the previous ENT to carry out the surgery and said to go back to him after if the dizziness/imbalance is still present. He also told me that ONLY the sinuses in the forehead are visible on a brain mri - this means that my neuro was not correct in telling me that my sinuses were clear as the brain mri does not look at the ethmoids or maxillary sinuses where my problem actually is. Only a SINUS ct or Mri can assess this
I think finally after 2 yrs of hell I am getting somewhere and now haves treatment plan - fingers x it works.
I have said it before and will say it again - keep digging for answers.
Trust your gut instincts
Mav


#35

I don’t think migraine exists on its own, personally. it’s caused by some other issue imho. He’s only saying that to cover himself from the unknown (fair enough).

This IS your issue.

I also think that ‘migraine’ in MAV might be an issue caused for some by intermittent blockage of the eustachian tube due to, for example, inflammation of the tube or the middle ear space which causes an increase in mucus production. It appears that this might cause ETD and even mild versions of this might negatively influence inner ear fluid homeostasis.

I injured my middle ear (and possibly inner ear). MAV came on after months of middle ear fluid sensations that came first and were no doubt blocking my poor ear and possibly slowly messing up the inner ear pressure.

Anyone who has used cotton buds could be at risk of a similar injury (mine was caused by a slug of wax hitting my ear drum when I stupidly pointed a shower into my ear).

We have already had someone with MAV later identified with a middle ear cholesteatoma that would no doubt have had a simllar impact (fluid, inflammation, blockage, ETD, inner ear pressure upset).

It never ceases to amaze me how interconnected all these systems are and how dysfunction in one will eventually impact another.

Get your sinuses sorted and you may be able to get rid of this extra junk!

Good luck Mav (!) and keep us posted!!


#36

Hi T
After today I agree that migraine is a symptom of something else going on - food sensitivities, ear issues, sinus issues, hormones, genetics, injury, structural abnormalities that develop over time. Dig deep enough and you will find it, only then can you ever possibly get a treatment plan that will work. Hopefully this is my issue otherwise I am faced with trying more migraine meds like a lab rat.
I will keep you posted.
Take care
Mav


#37

You may need those for the time being to keep you comfortable. But you need to resolve the root cause to be free of it.


#38

T,
I know that you were on AMI for a time and that now you are off it - are you 100% better or do you still have symptoms? Are you facing surgery in the future for the trauma or is it healed?
Mav


#39

So glad you’re getting answers at last. Well done. Oh, and thanks for the forum appreciation too. Kind words, much appreciated and I’ve only just found them somehow. It’s good to know we aren’t talking to ourselves on here, well not all the time anyway! Do hope it all goes well for you. All this MAV must have a root cause somewhere. Certainly looks like yours at least may be relatively easily fixed. Thanks for sharing. Your detailed descriptions and info will surely help others too in the future which is great, That’s what we try to do. Best Wishes Helen


#40

Yes, it’s more than coincidence that the neuro-otologist who finally diagnosed me with MAV was the First and Only medic ever to actually manually (with pen and paper) take a full medical history of my case. Helen