dissapointing docs

hi all. as you know i wear hearing aids to combat the tinnitus(feebly) and 2 weeks ago i noticed when i took them out there was apart missing from the end of one.i thought it had fell out BUT while practicing with the band i tried to insert my ear plugs and got a real pain in ear! turned out after a visit to g.p. that part of the aid was still in my ear!!!!!! anyway on a visit to E.N.T. at livingston which serves edin. as well as e.r.i. they romved the plastic. 2 e.n.t.docs were there and i obviously got on the subject of my T imagine my shock when they didnt really know much aboutT at all!!!!!!!!!!!!!! couldntanswer many of my quiestions and didnt know the basics of T or why you set a sound geberator lower then the T. !!!!!!!!!!!!! what chance have we got when e.n.t.docs are so ignorant of such a debillitating affliction? surely someome somewhere can get these docs up to speed? what a shambles!!!!!!!!. how can anyof us hold on to the hope that someone will find a cure or better help withT when the so called professionals havent got a clue!!!!!!!!!!!!!!!!!

22 Replies

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  • HI Drumcraw,

    I am sorry to hear of that your visit to ENT wasn't what you expected and hope you don't mind, I would like give you my opinion on this which might make you have more confidence in doctors.

    I have always said and vehemently believe that ENT doctors are not tinnitus experts. They know about the anatomy of the ear and are able to treat it medically and surgically and this they do well. However, when it comes to tinnitus, this calls for another set of skills and understanding that most of them haven't got. It was for this reason, my ENT doctor, who is an Audiovestibular consultant, whom I have a lot of respect for, once said to me: I know more about tinnitus than her. Her reason for saying this was because she had never experienced tinnitus.

    In my opinion, the tinnitus experts are the Hearing Therapists and Audiologists that a patient is referred to once their consultant is satisfied there is no underlying medical problem that is causing the tinnitus. Therefore, a referral to Hearing Therapist Audiologist, trained in tinnitus management is usually recommended.

    Not surprisingly, you will find that "most Hearing Therapists and Audiologists" that treat tinnitus patients, how to cope with tinnitus (counselling etc) also have the condition. They were either born with it or acquired it at some time in their life. It is for this reason, they will often have a level of understanding and empathy that person not having tinnitus will not have in the majority of cases.

    Michael

  • thnaks micheal.but ive only met 1 audiologist with tinnitus, he was great but has sadly passed away so the one i see now doesnt have it and all the rest didnt either"

  • In most cases drumcraw, you will find when a person is referred to a Hearing Therapist or Audiologist for tinnitus management. By this I mean: counselling and for treatments such as TRT, CBT and Mindfulness, the health professional will also have tinnitus.

    I visit more than one tinnitus forum. In the majority of cases, people have told me their Hearing Therapist or Audiologist has tinnitus as mine did who was born with it. I want to be clear on this. It is when a person is referred for tinnitus management as I've indicated above, and not just for the fitting of hearing aid or white noise generators.

    Michael

  • hi michael. ive had no referral for any of the things you have listed, things must be different in england than here in scotland ive had hardly any help and my first app. with ent took 6 months they then said i needed counselling as i "shouldnt be hearing it up front now" they said i needed psychologist app. which i waited a year for but was referred to stress management which was no use at all. that took another 6 weeks still no sign of any cbt or trt and there still has not been any to date, i have now waited 6 months for an audiology app. so you can see why im completely dissapointed in all forms of treatment for T in scotland as ive ben to edinburgh and glasgow and i have to struggle with this on my own

  • Hi drumcraw.

    The ear is a very delicate organ. For this reason many ENT Drs prefer to see a tinnitus patient 4 to 6 months from onset of the condition and I agree with this. People often habituate to the tinnitus within 6 months and sometimes it can go away. Starting treatment too early for straightforward tinnitus without any underlying problem causing it, could make matters worse.

    Not all NHS hospitals practice TRT, CBT and Mindfulness as these are expensive treatments. However, most people are usually referred to Audiology where some form of treatment is usually provided, such as the couselling that you mention.

    Treatment for tinnitus throughout England can be variable too. Compared to other countries the NHS offers some of the best help and long term aftercare for tinnitus patients and I have personal experience of that. However, this help needs to improve throughout the UK, so everyone gets a good standard of care for tinnitus.

    Michael

  • thnaks michael my underlying problem is mild to moderate hearing loss,according to ent my ears are not as strong as evreyone elses, but im puzzled as after 50 years of playing drums this only happened recenlty and was told that my hearing loss wasNOT due to loud music????????????????

  • Not all hearing loss is due to loud noise exposure drumcraw. There is a thing called "age related hearing loss", caused as one gets older. In most cases a person is advised that they will benefit from wearing a hearing aid.

    However, the tinnitus and hyperacusis that you experience and say that it has become more intrusive, I believe was caused by exposure to loud sound.

    Michael

  • Drumcraw,

    Glad the plastic tip was removed from your ear .

    Some ENT doctors are really nice and do understand about tinnitus but they deal with ear problems and ops.

    A hearing specialist or audiology would know more and give advice and some support .

    Lets hope you get better support if need to go ENT again at your hospital...lots of love glynis

  • thanks glynis

  • Hi Drumcraw,

    When I got T (2001), it was Livingston that I was referred to and when they issued me with a WNG (which they called a "retrainer") I was told to set it's volume to just below the level of T. It was however the hearing therapist that I saw. I know that she was based at the ERI and only came out to St. Johns once a week / month or whatever. However, like you I would expect an ENT doctor to have a fair knowledge of T.

  • hi kc. ive never been issued with anything at all and only have a noise generator cause i bought one, help in edinburgh was terrible and they said i shoudmt be hearing it up front now so decided i needed psychological help for stress, that took 1 year and then he sent me to stress classes which took 6 weeks and then tried to tell me how to relax thinkibng of a garden or on the beach. most of it had nothing to do with managing my Tive struggled with it on my own really and still do and where playing comes in well thats another stressfull thing now where i used to enjoy evry gig, dont know where all this treatment and therapy is i know its never been offered to me take care crawford

  • Hi Drumclaw,

    I don't know how NHS Lothian deal with T cases nowadays but back then I feel that they were pretty helpful. I went to see GP, "I've got this noise in my ear", referred to ENT. Went to ENT, hearing tests and MRI scan and referred to hearing therapist. Saw her 2 or 3 times a year for about 3 years, this was very helpful. I felt that she really understood how much I struggled at times but she was always able to send me away feeling much more positive about the situation. She gave me an over-ear WNG then later on an in-ear WNG and she also gave me an under pillow speaker and the WNG box that powered it. It may be worth contacting your GP again to see what help is currently available.

  • thanks kc i am trying all the avenues forT sadly none seem to give me the help i need even after 4 years and my gp sems to have given up as she doesnt really understand it and my apps. are all in glasgow now as edin was terrible. even then 2 in 6 months isnt great so what help is there?????????????????????????

  • Hi Drumcraw sorry of your experience which was as I put on here much the same as me when I saw a doctor ( I don't know what nationality he was but certainly no english) in my ENT I came away disgusted and could have used the time I took to travel to the clinic to have spent the time for doing other things thank god we have each other on the forums to draw on how to handle tinnitus to support one another. D

  • thnaks davy i totally agree

  • I think the ENT professionals (doctors) diagnose and treat mostly other problems. To get info and help on tinnitus, specialist audiologists are the best bet.

  • You are correct Slipware. Some people do not realize tinnitus is a specialist condition all by itself. I did not realize this until later on in my tinnitus experience. I believe most ENT doctors do their best to help tinnitus patients, although some could do with improving their knowledge about it and bedside manner towards patients.

    ENT doctors treat: Ear, Nose and Throat so it's quite a wide field of knowledge that is expected of them. They are "Physicians" and not tinnitus specialists, this is the role of the Hearing Therapist Audiologist trained in tinnitus management and treatment for it. As I've previously said, it's not unusual to find they also have tinnitus.

    Michael

  • Ent were awesome with me with i went there to have ear plugs removed, i noticed that there was one doctor for the whole dept on duty and several nurses, they were great at getting stuff done removals and all but i suspect these days you have to see some sort of speciaist on T - i might be wrong but i sensed that after speaking to a nurse - they seem to be trained these days in not saying much out on the floor and they are very busy generally but if you make an appointment then that ref point and its number should guide you to the right person with knowledge, totally agree these days i might be wrong but thats how it appeared to me after having two silicone ear plugs removed ..

  • Agree with you Crawford - the ENT consultant (for which I paid privately as I was desperate and the waiting list was 4 months) was of no use. He told me it was tinnitus and there's no cure. He even joked about one male patient who felt like cutting off his own head as the noise was so bad! Not what you need to hear when you yourself can't see being able to live with this awful condition. Thankfully he did refer me to audiology- NHS - who may have saved my life. Love, Angela xx

  • Sorry to hear of your experience with the consultant that you saw Angela. I have heard of some stories about comments people with tinnitus get from ENT doctors. However, your experience beats theirs by a mile and more. The doctor was flippant and devoid of any understanding or sympathy and to think you were paying for his professional expertise, it's a disgrace.

    All the best

    Michael

  • I had no horrible or funny comments, just a general lack of knowledge and understanding. Shame, but I now accept no cure, and life goes on, albeit a different life.

  • Thanks Michael. Yes, audiologists save us ! Angela xx

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