Always remember you are dealing with a lot, being kind to yourself and giving yourself the space to adjust is important too. The inner ear is complex and everything is related. Even now, despite successful surgery I have to keep stress in check. Stress goes straight to that ear. I also stopped drinking coffee because caffeine goes straight to that ear, likely because it is raising BP.
Thanks to my PT days and my Hypnotherapy practice, I know how inter-connected the body is, that the body and mind is constantly striving for balance and that it has a tremendous ability to work towards that if we give it some help to.
As for the name of the 3rd tear - I really don’t remember. The Prof said it whilst I was still in the “world spinning” bit post surgery. I don’t remember him calling it 3rd Window syndrome, he had a technical name for it. I had the 3D CT scan too, found it fascinating!
Botox - this wasn’t a conventional treatment. It was a kind doctor who did it for the condition where the facial nerves are very painful, and he said he’d give it go for vertigo (still undiagnosed PLFs at this stage). He basically did a pattern in the side of my head immediately above my right ear and round towards the back of the ear. He was aiming to numb the nerve that runs up the side there. This is the same nerve that Prof Saeed said he would cut as a last resort (we didn’t get to that stage as he found all 3 tears).
Remember most ENTs don’t even know about PLFs. After my sorry story, Prof Saeed was so incensed that he was taking on an intern who would go out to UK ENTs and Neurologists to raise their awareness of PLFs, and get them to understand that the sooner PLF patients are referred for surgery/specialist care at UCLH, the better the outcome.
Ear infections - The Prof told me to put vaseline soaked cotton wool in my ears whenever I wash my hair, or wear the ear protectors if swimming. This has helped massively.
Pressure in that ear is a normal side effect of a PLF, which can be mistaken for ear infection pressure. I still get pressure in that ear, normally it’s my body (which always wants balance) telling me I’m stressed or I’ve over-done it and to rest. Hypnotherapy and NLP techniques work brilliantly with this - luckily I am a hypnotherapist so hypno myself lol! Or it is my ear saying “hmmn, feeling too much pressure on the patches, can we slow down/rest for a bit please?” I’ve learned to listen to the signals.
Flight - If you have open tears, then the flight will have affected these, chewing gum or scuba breathing will be doing very little. Everything you are doing that puts pressure on the system will affect it and continue to until the leak(s) are patched, or heal over on their own if they are able to. Flying, getting on the Tube, going through tunnels at speed, bending forward from the waist to touch your toes, lifting, straining, stress, caffeine etc etc are all stressors of the system. It is meant to be a closed loop system of fluid (a bit like a house plumbing system), so if there is a leak, fluid gets where it shouldn’t which is what gives you the vertigo, the feeling of being on a rocking ship, or like you are being pushed to one side. It’s fluid being where it shouldn’t and affecting those parts of the ear/brain. Just like water flowing out of a plumbing pipe and flooding your kitchen.
Brain Fog - this is a side-effect of PLFs. However; I also think the body is so busy trying to stay upright with a PLF, that the energy it puts in to doing that is borrowed from more non essential areas of the brain, thereby concentration and brain fog results. It’s my own little working theory lol. It has subsided over the last 4 years, so there may be some credence to my theory, who knows.
I don’t know if steroids have any affect on the inner ear (James? @turnitaround have you found this in your research?).
I hope you find the right diagnosis soon and gain some relief. Please remember to also nurture your inner self, your psyche and soul. These are all affected by the upset to their normal balance, and they too require a little TLC. My sister is a Reiki Master and I found Reiki was incredible post op at healping to heal the stress damage from living with PLFs. Hynpotherapy and Neuro Linguistic Programming techniques were and continue to be invaluable on that front too. The mind/body/spirit NEED balance, so when that is off, find ways that work for you to help compensate. Hypno techniques did this for me, find yours.
Trying to live when the world is spinning is one of the toughest things to face, keep the pressure on doctors to find the cause (you deserve to be free of this), have faith in yourself that you will find ways to cope with it until they do and keep talking to James - he was my rock after 4 years of pushing for answers and kept me going until I got to Prof Saeed. I promise you, you are stronger than you know!
Take care
Tx
the headaches have disappeared, so it made sense to me on a cause and effect basis.
