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keith

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Posts: 45
Reply with quote  #1 
Is anyone receiving full TRT in the UK?

I have tried a number of the email addresses listed on the forum for my area (North West) but they are just returned undelivered.

I have been using the pink noise cd and a course of CBT but not made much progress. My LDL's were measued a couple of weeks ago at around 55 - 60dB. Similar to what I was over a year ago.

I now think it is time to see a TRT specialist who knows about hyperacusis and get some professional help.

If anybody has any recommendations are they NHS or private?

Thanks

Keith.

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DrNagler

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Posts: 218
Reply with quote  #2 
Keith, I guess the first thing you should know is that there are a whole lot of people who "use the pink noise cd" but are not using it correctly or to their best advantage.  So in my opinion before you abandon that approach, you really need to have a good idea regarding what you expect to accomplish and the best way to get there with pink noise.  And an accurate diagnosis really helps as well.  In terms of CBT, in my opinion if you are going to use that approach, you ought to have a clear idea of what you wish to accomplish and then how to apply the principles of CBT to get there.  (Sound familiar?)  Again, an accurate diagnosis is very helpful.  In fact, without an accurate diagnosis the success of any approach (TRT included) depends on luck more than anything else.  And I would want luck to have as little to do as possible with any aspect of my health care.  (I assume the same is true for you.)

All that said, if I lived in the UK - anywhere in the UK - and I decided to do TRT, I would go to one person and one person only (NHS or no NHS).  That's because in my opinion more than anything else the success of TRT depends on the knowledge and experience of your TRT clinician.  And in that regard there is one person in the UK who towers above all others.  That person is Jacqui Sheldrake.  (Yes, your relationship with the clinician is very important as well - but everybody gets along with Jacqui.)

Jacqui Sheldrake
Tinnitus and Hyperacusis Centre
32 Devonshire Place
London W1G 6JL
United Kingdom
44 207 487 2701 tel

Hope this helps.

smn
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keith

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Posts: 45
Reply with quote  #3 
DrNagler,
I made contact today with Jacqui Sheldrakes office. I was quoted £350 for an initial consultation and a total cost of £2500 over 18 months plus around another £2000 for sound generators if needed.
Are you suggesting getting the accurate diagnosis from Jacqui and persuing the treatment elsewhere as that would probably be possible. But getting the entire treatment from her would not be as her clinic is VERY expensive.
I totally agree with you that being treated by the subject expert would be the best way forward but with prices that high it limits what I can do.
Thanks for your advice.
Keith.


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DrNagler

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Posts: 218
Reply with quote  #4 
Keith, I can only present my own experience.

Back in 1994 when I decided to do TRT here in the US, I traveled seven hundred miles to see Dr. Jastreboff in Baltimore - because it was important to me to be treated by somebody with both knowledge and experience.  The cost was several thousand dollars, none of it covered by my insurance.  I couldn't really afford it at the time - so my wife and I rearranged our priorities in order to make sure I could afford it.

As far as I am concerned, what I got out of it was worth more than ten times that much.

smn

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aQuieterBreeze

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Posts: 2,083
Reply with quote  #5 
Is there any way to get your employers to help with your treatment?
Considering where you have mentioned that you work,
and that you are around loud noise
it seems that treatment for your condition (and the best available if possible) would be very important.
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Rob

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Posts: 4,049
Reply with quote  #6 
Keith -

Good for you for seeking out Jacqui. 

You can do something about your challenge with hyperacusis.  At the moment, it sounds like you could use some reliable direction.  I think you said it all in your first post in this thread.  You can get much, much further with some help.  Please do what it takes, whatever is required. 

Rob
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RJ

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Posts: 17
Reply with quote  #7 
Keith, are you sure about the 2500+2000 pounds? I also contacted her office some time ago and thought (or maybe assumed?) that the 2500 pounds covered both the consultation costs and the WSG's..
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Jackie169

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Posts: 16
Reply with quote  #8 
Thanks Keith & DrNagler and others for the comments above - I was just about to put up a plea for the same info. I have just 2 weeks ago contacted Jacqui Sheldrake for prices. I would love to go and see her but didnt get the full costs so will do this. She emailed me the initial consultation fees and sounds very friendly and helpful. I cannot afford £4500 but am so desperate to get a better quality of life I and she has proven success.
Jackie
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keith

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Posts: 45
Reply with quote  #9 
Hi Jackie,
If you do get the full costs can you confirm them to me as RJ who posted before you thought the £2500 was an all in price.
I am going to get in touch and make an appointment but it won't be for a month as work is to busy at the moment.
Good luck with the treatment.
Keith

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keith

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Posts: 45
Reply with quote  #10 
I hope to get to London next month to see Jaqui Sheldrake but In the mean time I had an appointment come through yesterday with a local ENT so I thought I would go and see what he had to say. It was just like I have read many times on these posts. He did not seem to understand what my problems were and said there was nothing he could do. He gave me anti-depresants to try that may help my symptoms a little, seroxat I think it is. Has anyone any experience of this.

His closing comment to me which was unbeleivable was "The best thing you can do is grow old because your ears won't hear as good then anyway".

I then left thinking what a wasted afternoon.

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Jackie169

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Posts: 16
Reply with quote  #11 
Hi Keith
I am sorry you had such an experience -it seems many specialists do not seem to want to help those in such distressing situations. I dont know why they think we need anti-depressents when its the condition that gives us the stress not the other way round  and THEM in thier lack of clarity and how they treat Hyperacusis & Tinnitus patients - if only they understood like DrN :-) .
I rang Nick at Jacqui Sheldrake's office and he gave me the full costs(he has promised to email them but not had them yet. he said £350 initial consultation, £2500 plus extra £500 for sound generators over max of 2 years treatment for around 8 sessions and support!!!! Its so expensive !!!! but she is so well regarded and has been so nice when I emailed her. She offers hope where there appears none at the moment.
I am at the moment awaiting to be referred to a Tinnitus clinic in Guildford Surrey by my specialist but have been told its for my tinnitus but I need help so badly treating Hyperacusis?? I was at work today when the fire alarm went of and it was horrendous and left me in tears (takes a lot for me to do that)
I also tried to get my private health to pay for the treatment you are going to London for but they turned it down as they pay for initial diagnosis but this was done in Oct so they now call my condition chronic and so no cover

Please let me know how you get on at the clinic
Jackie169
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Ed

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Posts: 112
Reply with quote  #12 
I'm currently waiting on sound generators from the NHS - Completely free. Just thought I'd add that.
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aQuieterBreeze

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Posts: 2,083
Reply with quote  #13 
Hi Keith.

At one time i thought it would be preferable to be deaf, because everything sounded so loud -
but there are ways through these challenges, and among other things to be able to hear all the beautiful nuances in the music I listen to, is absolutely wonderful.

I'm glad to hear that you will be getting help!
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aQuieterBreeze

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Posts: 2,083
Reply with quote  #14 
Hi Jackie,

Sorry to hear about what happened to you at work.
Sometimes it can help to remember that after loud sound exposure it can help to take it a bit easy around sound for awhile.
That's not the time i push my limits ....
(Or try to do things that would likely be difficult for me soundwise on other days)
Please do take care, and if necessary allow your hearing/ears a bit of time to recover. Sometimes i have had setbacks that do not make their full presence known right away, and i think it can help, after loud noise exposure to use a bit of caution - and avoid louder environments, and take it easy around sound - especially until one knows the extent of things.

Whereas for the most part and overall - what i am able to tolerate in the way of sound keeps improving,  (because I keep working on it in ways I have found to be helpful)
After loud sound/noise exposure i find my hearing/ears become more sensitive for awhile
and  I find what i am able to tolerate in the way of sound changes for awhile, and some things I was able to tolerate before may be either a little or a lot more difficult.
So I think that taking it easy around sound,  for awhile, after loud sound/noise exposure like you mentioned, can be helpful......

you mentioned -
I was at work today when the fire alarm went of and it was horrendous and left me in tears (takes a lot for me to do that)

Take care and please  let us know how you are doing.

Hi Ed,

you mentioned-
I'm currently waiting on sound generators from the NHS - Completely free. Just thought I'd add that.

Are  you getting the wearable  generators for treatment -to treat tinnitus or hyperacusis?
(and do you know if it would it make a difference, as to whether they may be available for free? )
Also do you know what brand and model of wearable sound generator they supply, or did you get a choice?

And will they provide any counseling? If not I wonder if it would be possible for someone, who may not be able to afford them otherwise -  to get the wearable generators, in whatever manner you have managed, and go to someone else for treatment?
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Ed

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Posts: 112
Reply with quote  #15 
Quote:
Originally Posted by aQuieterBreeze

Hi Ed,

you mentioned-
I'm currently waiting on sound generators from the NHS - Completely free. Just thought I'd add that.

Are  you getting the wearable  generators for treatment -to treat tinnitus or hyperacusis?
(and do you know if it would it make a difference, as to whether they may be available for free? )
Also do you know what brand and model of wearable sound generator they supply, or did you get a choice?

And will they provide any counseling? If not I wonder if it would be possible for someone, who may not be able to afford them otherwise -  to get the wearable generators, in whatever manner you have managed, and go to someone else for treatment?

They did the whole thing, I explained the problem to the audiologist, he told me that firstly, the medical community does know about hyperacusis, and then proceeded to explain TRT. He referred me for councilling and for sound generators for the Hyperacusis. I do not know what brand or model, but he told me they are white noise generators, and that the volume will be set according to the LDL's I took, and the volume will be changed accordingly as I go back for further checkups. He told me that it would not be quick, and that the the length of time varies from person to person, but he said 7 months or so.

Personally, for a free healthcare service, in a very minor city (some consider it a town) I felt this was brilliant. I did not have to do any persuading that the condition was real, nor did I have to inform him in any way, he even told me of other aspects such as the role of stress, drugs, caffeine, and also the importance of not overprotecting and continuing exposure to safe levels of sound.

No being sent away with a shrug, no useless drug prescriptions, no referral for dangerous MRI's. Just TRT. For this reason, I do not feel it is necessary to go private in the UK and face huge bills.
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aQuieterBreeze

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Posts: 2,083
Reply with quote  #16 
HI Ed,

Thanks for the reply.

 you mentioned -
I do not know what brand or model, but he told me they are white noise generators, and that the volume will be set according to the LDL's I took, and the volume will be changed accordingly as I go back for further checkups.

Are you sure they mean the volume? And not the frequency?
I may be wrong, as I do not know a lot about the wearable noise generators , but i was under the impression that the volume is set, perhaps on a daily basis -  by the person who is using them..
(And hopefully someone will correct me if I am wrong about that.)
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Ed

Registered:
Posts: 112
Reply with quote  #17 
Quote:
Originally Posted by aQuieterBreeze
HI Ed,

Thanks for the reply you mentioned -
I do not know what brand or model, but he told me they are white noise generators, and that the volume will be set according to the LDL's I took, and the volume will be changed accordingly as I go back for further checkups.

Are you sure they mean the volume? And not the frequency?
I may be wrong, as I do not know a lot about the wearable generators , but i was under the impression that the volume is set, perhaps on a daily basis -  by the person who is using them..
(Hopefully someone will correct me if I am wrong about that.)

I'm not really quoting word for word sorry I can't remember exactly what he said, just trying to get across what he mainly said! He did say they were adjustable volume though.
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aQuieterBreeze

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Posts: 2,083
Reply with quote  #18 
HI Ed,

You mentioned-
He did say they were adjustable volume though.

That's good -
having the sound adjustable is necessary from what i understand,
and though others know more about this than i do - I think it should be able to go Very low in volume as well.

It would be interesting to know if it IS the freq that they will adjust - if so that sounds good!
Someone else around here  mentioned having wearable gens that are adjustable for freq-
and if I remember right she mentioned they were adjusted for her, when she got them ....

I hope you will keep us posted, on what type of generators you wind up with and what your therapy consists of.
It is nice to know that you have this option available.
(As no matter how much some may want to go for the very best treatment, i know that in some cases - there are very real limitations as to what someone can afford )
 
If I was going to go through TRT, I would wish to go to the best clinician, i could afford, (someone who is Very knowledgeable and experienced in treating these challenges) even if another option was free -
As I have heard that the clinician one goes through can at times make a big difference ....and in my view that would be a good reason for some to seek out other options, like a top notch clinician, in the field of treating hyperacusis and tinnitus,  - if they are able to do so.
But that is just my view.....
And I am very glad to know the option you mentioned is available for you, and hopefully others in the UK.
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