Hi all - I have been diagnosed with Cookie Bite loss (I have Mod-Severe High and Low Frequency Loss diagnosed privately earlier this year).
Today I had an appointment with the NHS who pretty much told me that the devices that they could offer me are not suitable for my kind of hearing loss as it will amplify all frequencies (even Low frequencies which are intact). It will do nothing for the tinnitus, nothing for the background noise and will amplify even my good frequency so that is is uncomfortably loud! I suggested that offering me a hearing aid that was not for my hearing condition was not acceptable. He kind of shrugged! I can't really afford to buy privately but have briefly tested Resound aids that help with the tintus and reduce background noise, and due to the complexity of my loss - the large amount of channels that can be programmed are amazing.
My appointment today comes over 22 weeks after my initial GP referral and the next appointment which I don't have yet is with the department that will issue me with the devices to try. As I understand, the NHS has a duty to have provided me with hearing devices within 18 weeks of the initial GP referral and if they have not done so, they must provide alternative options. My guess is that I am still several months from getting devices.
I cant hear on the telephone, I can't hear in the car or a crowded room, I cant hear my young children crying for me - I am desperate to get some help but it seems that firstly the NHS are not delivering in an adequate timescale and also, may not actually be able to provide me with anything that can actually make my life easier.
Can anyone offer any glimmers of hope?
Thank you so much for reading!
Wow thank you! So much amazing advice. They gave me Phonak and programmed them with just three channels - tv, telephone, normal. All they do is amplify the sounds I don’t want to hear. There is no benefit to my hearing unless I’m listening to one person in a silent room!
I have a cookie bite loss too, though it's not so much a bite as someone has been at my audiogram with a knife and cut out the middle! These losses are notoriously difficult to fit for a few reasons. The majority of hearing aid users are going to have a high frequency slope, the second largest number will have low frequency slope, the third largest group have a flat loss and those of us left over are the cookie biters. Manufacturers don't target the technology to this group and audiologists get little practice fitting this group. We do tend to demand more channels of sound, as someone who has a "ski slope" loss will start to have a drop off and then it all goes, so from the point of loss and onwards there's nothing, which is easier to cover with a few channels. If the loss pattern goes up and down, zig zagging its way all over the audiogram, you need a markedly different input at 800Hz to 1000Hz to 1250Hz, etc. There is also sometimes a problem that hearing aids themselves make a small amount of noise just ticking over, and if you have high frequency hearing intact then you can actually hear the circuit noise. That's less of a problem than it used to be, but a few years back I had an NHS aid that sounded like it had a very angry wasp trapped inside! The next problem is picking a vent/dome type, as the usual rules about closed for low frequency and open for high frequency don't really work with people who have mid frequency losses - close in the low end too much and it's boomy and echoey. Open it up too much and you get feedback on the mid frequency amplification. This can take some trial and error, and since the NHS doesn't really like to give many appointments, ask if you can take away all the vent sizes which will physically work with your loss and try them out so you can get them to tailor the programming to the vent size which works for you.
So those are the bad news, on to the good news: I have worked together with my audiology to get a satisfactory solution. It took a while, as with my "difficult" loss they wanted to give me to the most experienced audiologist, but he was quite fixed in his "I'm the expert, you're the recipient of my expertise" kind of a place and wasn't a good fit. I asked to see someone else and she was very open to learning. I also went online on a site for audiologists and found out all about the fitting software they use (in my case that was Phonak Target) and found out what my aids could do and precisely how they should achieve that. I went in with screenshots saying "Can you do this please?" and if they said it wasn't possible, I taught them! Sometimes the training given by the NHS isn't as thorough as they get as private providers because they are not looking to make you super happy in order to make a sale of thousands of pounds, they are looking to get you fit up to the minimum performance guidelines and criteria of the NHS. When I was able to say "Go to this screen, put atick in this box" they were much more able to help. They still got to agree whether or not that was an appopriate prescription, I got to tell them how to make it happen.
Since you have had some level of success trying out private aids, ask them for a full fitting report. There are several levels of data, the one they print off for us mere patients, which tell you little more than how to operate a volume button, and the one for the audiologist which shows absolutely everything - the gain, the venting, the tubing, the max output, the frequencies, the programs, the preferences of performance in different conditions. The NHS will not be able to match everything on there because of differences in technology (NHS a bit more basic) and in brand performance, but they can get close if you are able to take the information to them.
Most NHS aids have a private equivalent which you can research, so long as you can match them up to their disguises. The aids are likely to be long since superceded on the private market, my Phonak NHS aids are 2-3 generations behind the private ones, but the documentation is still on the Phonak website for the older ones. Finding out their trading names can give you access to many more places you can read up about them.
And most of all, don't give up if your first experience is not good, go back, try again, ask for better fitting, stay in the system. Every 3-5 years you are entitled to new aids, as technology catches up they will become better able to cope with even the most demanding of ears. The more you wear them and the more accurate you can be with what does and doesn't work for you and in exactly which situations, the better you are able to inform the audiologist. And you never know, you might just get someone with less of a stick up their backside next time! What a misery guts that first one was.
You are not boring me senseless at all. It is encouraging that the private hearing aids that you trialed helped you because at least that gives some hope. I would have thought that the NHS is obligated to provide adequate aids. I wouldn't be surprised if it was the programming rather than the actual hearing aids that were at fault with the NHS. My understanding is that the NHS aids are pretty much the same as those you can get privately (minus a few bells and whistles). Do you know what make and model the private ones were that you tried? If you can find out you can then find the model most like it available on the NHS. My type of hearing loss is atypical too and I have read so many stories of people that give up on their hearing aids as they do not gain any benefit with them and in many of the cases, it is likely down to poor programming by inexperienced audiologists rather than anything else.
Hi there - I questioned the cookie bite diagnosis as it confused me. I have now had 4 separate tests with 4 separate audiologists and all say the same - Cookie Bite, Mod to Sev mid and high frequency with low frequency in tact. The reading still makes the bite shape on the graph but its a different way around apparently. It is equal in both ears. I can't hear a bloody thing in a crowded room apart from all the annoying background noise which is in the low frequency range. The private audiologists I have seen have let me try hearing aids that sound amazing - they can reduce my severe tinnitus, reduce background noise, zoom in on precisely the people I want to hear and they don't amplify all frequencies at the same level. They are amazing but are almost £3k which i'd really rather not spend. Last weeks NHS audiologist suggested that it was tough luck really that I have such a loss as they just don't have the devices to help. I am under the impression that if they can't provide me with something suitable for my condition they have to refer me to an outside provider. Otherwise aren't they prescribing me hearing aids for someone else's prescription, not mine. It's really causing me stress at the moment. Im struggling with everything I do and I'm avoiding any social situation. I'm dreading parents evening next week. At the moment I also have a cold and my hearing is (hopefully temporarily) worse and the tinnitus is pretty bad too so it's making me feel rather sorry for myself. The more I read the more I understand that cookie bite loss needs to be dealt with by someone who is specifically competent in that area as its just not understood by everyone. I could rant on about this forever at the moment - it's literally taking over my life. My loss has deteriorated since April and i'm so scared that it's going to get worse because the NHS are not acting quickly enough. Thanks for taking the time to write. Sorry for probably boring you senseless!)
Out of interest, did you get a copy of your audiogram? A cookie bite hearing loss pattern is where low and high frequencies are intact and just the mid frequencies are affected. If your low frequencies are fine and your mid and high are bad then this is the normal and most common ski slope hearing loss pattern. Perhaps what your audiologist meant was that your hearing loss is so profound in certain frequencies that hearing aids will not help (I am profoundly deaf in all frequencies in my right ear for example so a hearing aid cannot help at all for that ear). Whatever the reason, your audiologist has done a terrible job at explaining him or herself. I am lucky that although my bad ear is completely deaf, my other ear only has a mild hearing loss but I still have had to fight for any assistance and to get hearing aids on the NHS. It is shocking how low priority heating loss is treated not just in the UK with the NHS but in America with insurance where many policies consider hearing aids 'cosmetic' enhancements.
I keep telling people who are unsympathetic to stick some earplugs in their ears for a few days and see how they get on.
We have to be our own champions and be relentless in our fight for what is best for us. You certainly sound like you've had a battle this far. Make sure you write down plenty of questions ahead of your next appointment. I plan to do the same for my hearing aid fitting next week. I have waited so long and don't want to have to wait a further three months to have my next follow up.