Week 9-10 – Brain scans, sudden hearing loss and the NHS

By now I had got myself a Sonido Listener to get by in the world. This is a handheld electronic device which amplifies sound. It has an inbuilt microphone at one end which you point at people to make them feel important, and a headphone connection the other end which you hear them through. Whilst it no way makes up for lost hearing, it definitely improved my ability to hear others in a one-on-one situation; saving them from having to shout. The downside is that you are constantly connected to a machine and wires so its not a long-term solution. I can really see the value for people who have mild-moderate hearing loss and haven’t yet got aids, as they could simply use this in difficult situations, maybe even without hearing aids. However for those with aids it can also connect through the T-setting, which might when you’re in noisy environments and want to hear the person next .

At my next appointment my darling ENT (who as you now know I love very much!), notified me that the MRI had identified a 1.6 cm ‘something’ on the left side of my brain. He said it could be a benign growth but that he needs more scans done to identify what it is and if it’s causing the problems. The jaws of me and my mother dropped to the floor while we both skimmed over all the potential horrors that a brain tumor could bring.

I asked him for a referral to vestibular rehabilitation (physio) but he said he doesn’t offer it and I should go to my GP. I thought this was a bit strange and momentarily felt sad for all the poor people in my region with vestibular issues who have been abandoned without the physio they need because the NHS doesn’t provide it!

I asked him for antivirals and gave him copies of scientific studies showing how they can help in limiting hearing loss in inner ear conditions. Quite a few people had told me on Menieres Disease Forums that antivirals had had a noticeable effect on reducing their hearing loss so I was keen to follow this route (will post studies here soon). But he dismissed my papers and said he didn’t ‘believe’ in antivirals. Hmph! since when is medical science based on ‘belief’ and not on controlled scientific testing? I do agree that ‘belief’ has an important role to play in healing and that’s why doctors should be banned from telling patients they won’t recover. But in this case he was simply closed to considering new developments or stepping outside of his routine procedure. But he did at least agree to refer me for hearing aids (Hallelujah!).

So me and my family were then left to stew in our worries of cancers and brain tumors for a few weeks. At first I dismissed the worries floating through my mind, remaining mindful that nothing was confirmed and that MRI’s can pick up on all sorts of harmless things. But given my natural inclination to research, I soon learnt enough about brain tumors and the major risks and impacts associated with their growth or removal that I had shaken myself up into a state of terror.

We lived in that state of terror for the next two weeks and my family and friends suddenly become much more spiritual. We bought a lot of candles and said a lot of prayers. I really do feel that all these prayers eventually helped me. I let go of my worry and got into a state of genuine peace with the now I was in and nurtured a sense of faith in positive outcomes whatever might take place. I put my efforts into continuing my natural practices and diet (will post info soon) and feeling as good as I can. I pushed ahead in every path I could. I went for CT and MRI scans (with dye this time) and finally I got an appointment with Audiology who tested my hearing and took molds of my ears for hearing aids. I also decided I couldn’t wait 2 weeks with such poor hearing and went to Boots where I was quickly seen, hearing tested and fitted for high spec hearing aids.

I also went to see my favorite GP to see if I could get him to help me.I’m lucky to have found him as he is the rare breed of GP that seems to still have compassion, listen to his patients and remain open to suggestion. I highly recommend scouring your area for a GP like this who you feel affiliated with and who you trust will help you when you need it. I asked him for antivirals and antifungals and gave him the scientific papers justifying my request. Since the drugs weren’t harmful he agreed to prescribe them. He said no-one had ever asked for VRT before as this is normally the role of the specialist to refer to, but that he would look into it.

So all in all, things hadn’t improved but they were definitely moving forward at least and I was feeling really positive about that. So then why do bad things happen to happy people? That’s what I don’t understand. The day of my audiology appointment I’d been on the phone to a few friends. My right ear had more hearing so at least I was able to speak on the phone or listen to headphones through that ear. But that evening, when I picked up a surprise call (from my ex-boyfriend incidentally), suddenly there was only a buzzing. The hearing had dropped in my GOOD ear.

Knowing that sudden hearing loss needs to be treated as a medical emergency, I made contact the next day with my ENT, my GP and the local Audiology Department to seek advice about what I should do and who I should go to. Nobody new what to do. The ENT wasn’t in so they took a message for him. I went to the audiology department and spoke to 3 nurses/audiologists who didn’t know what I should do. They called up an A&E department to ask and they didn’t know either. They told me to go to my GP so I popped in (its now 4:30 pm Friday) and he advised waiting to see the ENT for my scheduled appointment the next week. Basically, all of these medical professionals failed to give me the correct advice – which is to get straight to an A&E in a hospital with an ENT department, where I can get my hearing tested and immediate steroids.

Instead, following their advice, I rested and waited. It was confirmed the next week that my hearing had dropped in my good ear. By then off course it was too late to try to treat it with steroids.

If a patient has bloody wounds they’ll be rushed to hospital and treated. Their wounds, limbs, scars, organs will heal over. I came with a problem which if not addressed could permanently disable me and deteriorate the quality of my life …forever! and it was ignored by everyone.

I felt like my world had crashed again. The small remaining joys of speaking to friends and loved ones on the phone or learning and entertaining myself by watching films and YouTube had been taken away from me and it felt totally unfair. I hadn’t for one moment considered I would lose more hearing.