MRI scan

[jbradford42]

Hi All, went to my doctors yesterday as my T has been going mad loud. I told him I want to see someone at the hospital that knows about Tinnitus. That will be the audiologist deportment, yes but I need to speak with a consultant, he said you’ve spoken to the consultant before I could not remember so it must of been ages ago way before my T has tripled last January. So I’m putting my foot down now and not doing the softly softly approach anyway got my appointment but as I was leaving the doctors said don’t build your hopes up. Talk about banging your head against a brick wall. Anyway I’ll keep you informed. Cheers guys

[Shellipops]

Hiya,

Ill be taking the same stance with my GP next week....it makes me mad how completely unhelpful even borderline cruel, some can be. Yes, there may or may not be a pot of gold at the end of the investigative rainbow....but at least afford us the opportunity to look for it 😤😡.....good luck.

S

[jbradford42 in reply to Shellipops]

Well said, stay focused and if we stay positive sooner rather than later we will find answers. It’s sad I have to say good luck. Cheers J

[jbradford42 in reply to Shellipops]

Cheers for that. I am a bit fed up with the system nobody seems to know what to do when I mention T. The doctors the hospital every one just hasn’t got a clue. If it was anything else they would have answers so sad

[Ruud1boy]

I'm sorry to say I think you're wasting your time & effort. There's next to nothing that the NHS can or will do for T. I've had a few meetings with the local tinnitus 'expert' here in Leeds - he has certificates on his wall about attendance at T conferences, his name was cropping up everywhere as the man I should be speaking to, he's listed on the London TRT website as being an accredited expert etc - and he's done virtually nothing for me re the T. Largely I suspect because there is nothing he can do, we'll only get to grips with our T if WE do something about it, but that doesn't make it any less frustrating.

They flag on their website that they offer 'tinnitus therapy' and have a big promotional stand in the audiology department trumpeting 'special clinics for complex needs', but what they think of as therapy is very different to what I had in mind. It took me a few sessions with this guy to realise that it was going to be just a brief half hour chat with him occasionally. He's effectively shown me the door some time ago now, saying that by continuing to seek help, even though I'm 2yrs into my travels with Mr T, I'm actually keeping the condition going & delaying the habituation process. He has given me a few good tips, nothing earth-shattering, just signposts to a better life I suppose, but he's never once asked me about how the T affects me. The main plank of his therapy seems to be, if you don't let it affect you, then it won't affect you - if you're having a bad day, just look out of the window and think 'ooh, look there's a bird there' or 'I wonder where that man's walking to'. Needless to say, that isn't useful.

[Shellipops in reply to Ruud1boy]

Hi Ruud,

I know there is no cure for this, but it CAN be a symptom of other body/brain issues. If you can at least get examined properly by that I mean scans, bloodwork etc....any underlying issue can be dealt with.

If nothing presents then at least you dont have the "what if" spectre hanging over you....having said that I think thats when the hard work begins as from then on it is pretty much "your on your own".

[Ruud1boy in reply to Shellipops]

Yeah, that's the point I'm at Shelli - work it out for yourself.

[Shellipops in reply to Ruud1boy]

I think at some point we will all get there......some of the time. Then, at some point we will get there again....if you get what I mean 🙄

[Lynne-H]

Yes I agree that you should have the tests - four years ago I myself had various tests including a hearing test resulting in hearing aids because I`d lost about 40 to 50% of my hearing due to a virus. I also had an MRI Scan and a Doppler Scan (both of which I paid for) and these came back clear.

Then a friend of my son`s who also suffers with tinnitus said "there`s only one way to get through this and that is to accept it." So from then on I joined the BTA, who told me about our local support group (which I still attend every week), I read and re-read endless success stories and I used to tell myself that I didn`t mind this noise - that I actually liked it.

I also saw my GP who prescribed propranolol for the anxiety and panic attacks I was experiencing. These helped me because my main and most troublesome noise is pulsatile - I can hear my heart beating and my circulation - like a generator. The medication helped because being a beta blocker it reduced my heart rate and also calmed me down. Stress plays a big part in making tinnitus worse.

It is true what Ruud1boy says - we have to help ourselves.

Have the tests and hopefully everything will come back clear which will at least put your mind at rest on that score.

It is possible to get your life back on track - it`s not easy and it can take a long time but it can be done.

I still hear my noises but honestly they don`t bother me anymore .

Lynne

[jbradford42 in reply to Lynne-H]

Thanks Lynne.

[Lynne-H in reply to jbradford42]

One thing I forgot to mention - I also had counselling with an NHS Hearing Therapist who comes to our group occasionally to talk to us and answer any questions we may have. And I remember her saying to me when I first saw her "one day you`ll wake up and tinnitus won`t be the first thing you think of" and I thought yeah !! But she was right - these days I wake up and think about my aches and pains instead he he !!

Love Lynne xx

[Ruud1boy in reply to Lynne-H]

You're becoming my tinnitus guiding light. When I'm having a bad day - like today - I've started telling myself 'think about Lynne!'

[Lynne-H in reply to Ruud1boy]

Thank you. Happy to help but sorry to hear that you`re not good today and hoping that one day you will be where I am now.

I used to do the same thing and think about my tinnitus friends - those who`d cracked it and those who hadn`t. It does give you some comfort to know that you are not alone.

Lynne

[Shellipops in reply to Lynne-H]

Lynne,

These are for you 🌹🌷🌼🌻 x

[Lynne-H in reply to Shellipops]

Thank you Shellipops xx

[Wringing1212]

Hi J,

One of the problems doctors have to cope with is the cognitive model used in the medical sciences. its very compartmentalized. This allows them to divide and concour but it doesn't allow them to go where they've never been before. The same holds true in others sciences.

You're symptoms are apparent to you but the practitioners are limited by their own abilities to imagine what you experience. If they had tinnitus or some of varieties of related hearing disorders, they would themselves use their exceptional intelligence to break down those boundaries between the compartments and demand an answer from the models of science. If they don't find one they would persist much like the sound in their head.

I've had tinnitus for 20 years and had saught help in the beginning. The answers I got from the best back then, were the same or even more advised than those I'm getting today. "Think of it as your friend" eventually you may come to ignore your annoying friends.

Recently as noted in my first two posts here, I had a brain scan(MRI) ordered by my neurosurgeon, to address the increase of Tinnitus I've experienced since I underwent nerve blocking shots in c-5 c-6. The scan ruled out tumors, but immediately after the scan, my tinnitus rifled out of countrol. I could tell by the unusually loud noises that I was subjected to, that I was going to be ruined by this machine. Although I've had 3 MRI on my neck, I'd had no idea the brain scan would be so much louder. No sane person would subject a fellow human to such a thing. I was pissed during the scan and have been pissed ever since. It was Labor Day, when I had the scan at UCSF Parnassus, and I'm ringing now more than then.

Before, I had one simple high pitched constant wringing. Now I have a wide variety of unpredictable sounds that spike up to a point were I melt down. I now have hyper sensitivity to sound and partial deafness. It would be nice if I could forget about it but at this level of interference, it's only a matter of time before my cognative abilities degrade to a debilitating state.

I have no choice but to pursue every avenue, seeking a legitimate remedy. I only hope I can hold it together long enough to see or hear the day when a doctor with severe tinnitus has a break through.

This is not about self pity. I'm a veterin tinnitus surviver. This is about restoring my ability to take care of my family and warning people about the dangers of brain scans.

Don't give up. Push the doctors and industry that have taken your money for treatment and then shunned you. They simply lack empathy or the ability to apply it to science.

[jbradford42 in reply to Wringing1212]

Hi buddy thanks for that, I’m in the same boat it’s just that nobody seems to care. Doctors Hospital ECT. The thing is my T is really really loud I’ve no choice but to live with this for my family because without then I would not be here cheers mate and all the very very best.

[Ruud1boy in reply to Wringing1212]

Pissed in the American or British sense?

[Barbara-C]

I feel the same ..take care x

[Shellipops]

Good days, bad days but please never forget every day is a new one x

[Ruud1boy in reply to Shellipops]

'Good days, bad days' is one of my most often used phrases. When I'm having a bad day, I just tell myself I have to tough it out to get though the day and then go to bed - I thank my lucky stars that I can get away from the racket by sleeping.

[Shellipops in reply to Ruud1boy]

Ruud,

I think if we delve deep enough we all have a lucky star. You dont HAVE to tough it out....you WANT to tough it out, theres a difference. Stick your star in you back pocket and pat your @$se on the bad days to remind yourself its there.......if anything it will take your mind off it......

[Michael8272]

It is a deliberating condition.people don't know how much this affects our life's.awful.

[Wringing1212]

Hi J.

How's it going?...........I still haven't heard back regarding my inquiries with UCSF. Fist regarding my referral into their program and second regarding the cause of what is now Hypoacusis with hyperacusis. This al leads to Meneire's disease. My neurologists said he'd wait and see if it got better in a couple of days. It's been two weeks and it's gotten worse.

It has a profound affect on memory and the perception of time. At this stage these problems are intermittent. Basically the MRI brain scan added a low pitched frequency to my tinnitus that sounds like a deisel engine about two blocks away and a chorus of high pitched wringing, whistling. Some oscillate and some are constant. One seems to wave from ear to ear. This is very characteristic of what a soldier experiences after being exposed to the sound waves from grenades.

I've filed a formal report with patient services and have been assured they will address my concerns. Meanwhile I'm walking around useless while my 5 year old twins are asking me why I'm acting this way. My wife can't discuss it. She just cries and moves on.

I've had the tinnitus most people talk about for twenty years. This new level is something different and requires more than a chat. I'm 55 and have had a number of serious illnesses that I've overcome. That's just life but this is different.

My journey is leading me to lots of people who suffer from it. Most of them have developed ways of coping and learning to still be positive. There is a clarity that comes with this. I now don't take my time or abilities for granted but rather, try to make the most of them.

[jbradford42 in reply to Wringing1212]

Hi Mate do you think I should not have the mri scan.not read your full message yet as I’m in the Dominican Republic at the moment sitting in the sun but my T is going crazy at the moment. Il read the full message if or when it settles maybe it was that nine hour flight not sure cheers John

[Wringing1212 in reply to jbradford42]

Hi John, if I were you, I wouldn't subject my ears to an MRI scanner. Brain scans and chest scans are done at a higher decibel level than other scans. Safe is supposedly 110 for no kore than 20 minutes. That's safe for someone with healthy ears. My brain scan was definitely on the higher end. It produced various frequencies, so damage has occur in multiple frequencies. The Tesla machine trashed my head. No doubt about it. The only question I have is, are there other "much quieter scanners that can get the same result?

Although its likely you have damage to the little hairs in the inner ear, I'm not a doctor and can't say what other health problems would have caused your tinnitus. I went for the screening and regret doing so. I have two appointments tomorrow. One to test my hearing and the other to begin in the UCSF tinnitus program. They will be reviewing the issue of the scanner and the volume it puts out for my scan setting.

They are dismissive but they've given me something I won't forget, so I'll be on their case for a while.

If your doctor thinks you may have a treatable problem that could be detected by the scan, then by all means do it. If you are just pushing them to it, remember they make a lot of money from those scanners and like to keep them busy. They are already poised to fend off your comlpliants if things go wrong.

[jbradford42 in reply to Wringing1212]

Hi Bud, well I definitely did push the doctor for a appointment but maybe I’m just looking for something that is not there. I’ll carry on with my appointment and see what they say not keeping up much hope though. But we Have soldiers on right cheers bud

[Shellipops in reply to jbradford42]

Just a suggestion. Newcastle have an open MRI scanner which is 85bd apparently....thats the same as my hoover (I measured it). They take referrals for folks from other areas if obesity or claustrophobia are a problem....Id argue noise reactive T would also fall under that umberella. Privately its the same cost as a normal MRI so in theory shouldnt cost your NHS area (if outwith)...any extra money than if they did it. Just a thought and hope you relax into your holiday.

Take care,

S

[Wringing1212 in reply to jbradford42]

Hi J,

I just got home and can focus on my response to your last note.

I’m being seen by an ent at UCSF tinnitus clinic and she said deffinately don’t have an MRI if you have tinnitus. It will make it worse. I’m also talking with the head of radiology regarding this. 3deparment heads in one day, of one of the top hospitals in the states. They think the brain scan was a mistake. GE is sending out a rep to inspect the scanner. Tomorrow. My tinnitus is off the charts.

[jbradford42 in reply to Wringing1212]

Thanks for that W1212 I’ve an appointment with the hospital and I will tell them I don’t want the scan. Please keep me informed on how you get on. PS mine is proper loud and it does my head in at times but we must never give up cheers mate.

[Momoko79 in reply to Wringing1212]

can you not wear ear plugs during a mri???

[Shellipops in reply to Momoko79]

Yes you can, they usually give you some. You can have music played into them if you wish.....I have peltor earmuffs which reduce external high pitched noise by 35db. They are quite bulky and Im unsure if they would fit in the scanner.

[Wringing1212 in reply to Momoko79]

Yes, but those little foam plugs offer very little defense against the magnitude of noise and resonance directed at your ears. USDA estimates a 30 decibel reduction but sound waves and such travel through all tissue in your head not just the ear canal. The image is produced by getting the sound in.

These machines are cash cows. They can claim whatever they like and get away with it if it’s earning enough money to keep the lawyers on its defense. After a number of discussions with the head of radiology, I realize how little they know about sound engineering. It’s plug and play on campus.