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Recovered

#1

Hi everyone! It has been quite a while since Iā€™ve stopped by and updated everyone. I wanted to though because I know how important it is to read success stories. I went through this nightmare really bad for about a year. Suffering from extreme vertigo, constant head swimming, brain fog, vomiting, migraines, visual disturbances, tinnitus. I was practically deaf in my left ear. I felt like I was totally possessed and I felt like I was robbed of my life. I went to doctor after doctor to try to get a diagnosis. MAV was the only thing that fit for a long time. Iā€™m still convinced that I was experiencing vestibular migraine. I think the causes of VM is different for everyone. Iā€™m hoping that if this post helps one person then it will be totally worth it. I canā€™t even count the number of hours that I spent combing over internet forums to try and diagnose the monster inside of me.

My doctor told me that I had ā€œanxietyā€ and it was all in my head. My ENT did vestibular testing and everything was ā€œnormalā€. My neurologist told me that my brain was healthy. My MRI was clear.

I want to say, donā€™t ever stop advocating for yourself. You know yourself better than anyone. Donā€™t stop fighting until you get an answer. I only got an answer when my neurologist suggested that I go back to my ENT to have my ear cleaned out because he couldnā€™t see my eardrum. Only then, 8 months after, did I finally get a lead. My ENT said ā€œYou have something going on with your ear but you need to see someone even more specialized than meā€ that is when he referred me to a neuro-otologist.

I went to this neuro-otologist. Its a doctor that specializes in ears and head/neck based tumors and surgery. Immediately, after scoping my ear he told me what was wrong with me. He said that I have a cholesteatoma in my left ear. My eardrums were retracted and I had a fistula in my right ear. I had to have a high-resolution CT scan to confirm it. It was confirmed and surgery was scheduled.

Surgery was really tough. The surgeon had to drill out my mastoid to remove the cholesteatoma. He rebuilt my hearing bones with a titanium prosthesis because they had been eaten away by the growth. He also rebuilt my ear drum and put a tube in it.

Iā€™m now two months out of surgery. Iā€™m 100% back to myself. No migraines, no vertigo, no neck pain, no rocking on a ship. Iā€™m driving, going to grocery stores, not having to wear sunglasses. Enjoying my life. So very grateful to my surgeon for giving me my life back. I now have normal hearing too.

I just want to give you all some hope. Donā€™t stop fighting for answers and donā€™t ever give up hope. Iā€™m not saying any of you have a cholesteatoma but it was the root of my issues. Tell yourself every day that you will get better. Donā€™t stop advocating for yourself.

Thank you all for your help when I was battling this monster. You really helped me through some very tough times. Iā€™m planning to stop by from time to time to check in.

Wishing you all the best.

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#2

SUPERB! Very well done. Incredible.

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#3

I wanted to thank you especially. You really helped me through some tough times. I hope you are doing well.

#4

Awwww very kind. Least we can do.

Itā€™s a bit tough at the moment but Iā€™m off meds. Went through a few weeks of nightly positional vertigo. Having a break from it at the moment. Hope it stays gone. Imbalance has been nasty lately. Hope itā€™s the last gasp of ā€˜MAVā€™

Has your hearing recovered. Has all the tinnitus gone?

Your story just goes to show that being dismissed with MAV diagnosis may not be good enough. I wasnā€™t satisfied until I got a diagnosis of SEH post PLF. You may have had SEH due to the issue you had. Iā€™ve always said MAV is SEH.

#5

Iā€™m glad youā€™re having a break from it and its wonderful you are off meds!! I hope it stays for you!

My hearing is completely recovered. I still have tinnitus in my left ear but its a consequence of the surgery. Doesnā€™t bother me much since Iā€™ve had it my whole life.

Can you tell me what SEH post PLF means?

Personally, for me and my experience, MAV was a symptom of something else. Cholestetoma changes the makeup of CSF fluid which can cause migraines. You can also leak CSF fluid with a fistula.

#6

Also, the CTOMA was eating away at my skull. I forgot to mention that I also had a cranioplasty to replace that section of my skull to protect my jugular vein.

#7

A fistula causes perilymph leakage. Secondary Hydrops develops which is where the Endolymph portion of the inner ear distends and takes up the space of the missing perilymph. Until the fistula is closed there is no chance to resolve this. Now that your fistula is closed any Hydrops may now calm down and you should see further improvement. But sounds like you have made an excellent recovery so far!

At my last meeting with my oto neuro surgeon we agreed to continue medical therapy in the hope my fistula continues to heal. My hearing has stabilised so Iā€™m off the emergency list. Lol. Surgery is very tempting though!!!

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#8

Iā€™m really glad you have a good neuro-otologist and have made improvements. Hopefully, your fistula continues to heal on its own! Do you think you got the fistula from the water from the shower?

#9

Yes. Confirmed with surgeon. I must have thumped the middle ear bones and the stapes footplate may have fractured or the oval window may have been punctured. Unfortunately neither of these injuries show up on clinical CT or MRI so itā€™s a wait and see. My leak used to audibly glug glug and now doesnā€™t do this. Feeling of fluid in middle ear has also decreased slowly. So itā€™s definitely closing. There are probably many MAVers with fistulas and SEH.

My ear drums donā€™t show any sign of damage and there is no evidence or otitis media. I think the damage is all mechanical and plumbing.

#10

Wow!!! Thank goodness you pressed for more detail!!!

#11

Truly blows my mind that, that could have happened! Did you have a perforated eardrum? or did the water bust through? Sorry to ask so many questions! Just curious and Iā€™m glad you have answers!

One of the things that surprised me was how tiny the bones in our ears are. The stapes is the smallest in the entire body. Luckily, I still have my original stapes and just need a partial prosthesis to replace my malleus and incus. So far so good. Iā€™m hearing better than I have in 10 years.

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#12

Yes, I have no doubts that it saved my life!

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#13

No damage to ear drums. Just a transfer of force. The inner ear windows are the thinnest membranes in the body. I suspect this is by design to allow them to breach if pressure in the inner ear gets too high. Unfortunately it makes them very easy to damage.

I initially recovered completely from the injury but SEH slowly developed from the leakage which only seemed to occur at night (when head pressure is highest as you are reclined)

SEH can be asymptomatic or just affect balance only. Eventually if left to develop it starts to impact hearing.

If Iā€™m very lucky it might be fully reversible. Who knows.

#14

I hope so! Very interesting. Thank you for sharing with me! Hope you continue to improve. I have no doubts that you will! :slight_smile:

#15

Thanks Carrie!

Do drop in again and give us an update in few months.

Wish you best with remaining recovery and tinnitus.

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#16

PS perilymph IS CSF.

#17

Not trying to hijack here, but @turnitaround, since Iā€™m new to these forums, Iā€™m curious as to what happened to you (in the shower) to cause your problem?

Also, how is a fistula diagnosed? Is it something the doctor can see visually, or on an MRI, or ???

#18

No problem at all. I had some significantly compacted wax in my left ear. I thought Iā€™d self syringe with the shower. Stupid stupid idea. I turned the heat and the power down but it appears the water pressure and the slug of wax must have hit the ear drum and caused my injury. The ear drum itself was fine. I had no hearing issues initially. I started to get dizzy within 15 minutes and became very dizzy and nauseous following day. Stayed this way for 5 weeks then spontaneously recovered. However I clearly had fluid in my middle ear every morning from then on (to almost this day 2.5 years later.). 5 months later I was hit with ā€˜MAVā€™.

I saw a number of doctors who dismissed the possibility of injury causing my MAV until I came across my current doctor. He is convinced I created a fistula. Probably a fractured stapes footplate or oval window puncture. Itā€™s almost impossible to be sure without surgery. We have chosen a wait and see approach as hearing loss is stable. Weirdly I didnā€™t have hearing loss until 5 months after the injury.

#19

Btw I think this story goes to show that MAV will go away if you treat the underlying condition if that can be identified or if the underlying condition resolves itself spontaneously.

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#20

Well done, but you had an excellent doctor too. All, too rare.

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