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kimberleydust

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Posts: 91
Reply with quote  #1 
Hi Dr J,

I have just recovered 2 of my (separate) posts to you which seem to have 'slipped through the system!'.  If possible could you please answer the following...

Quote:
Yes John is correct - I don't have access to a trained TRT specialist - and I definitely won't be flying anywhere for quite a long time - not till I have to, to have an MRI in October...I am relying on educating myself and others experiences and help...and of course learning what works and doesn't work best for me...So any advice you have would be most welcomed!

I actually wanted to ask you how you felt my brainstem tumour may contribute to my hyperacusis (or just hyperacusis in general).  My tumour sits right where the facial nerve starts in the brainstem along with the abducens nerve to the eye muscles (my eyes are directly affected by the tumour).  So is my balance - my body overbalances - falls to one side or keeps falling frontways...It is in the pontomedullary area and extends into the fourth ventricle - approx 2cm diameter.  As you would understand I have numerous issues because of the tumour and one thing affects the other - I believe hyperacusis is just one of these...

I can give you more info if you like but don't want to take up too much of your time...

 

Quote:
Thank you DrJ for sharing your clinic's treatment protocol with us...I have a question...How would you treat someone like myself who has sound sensitivity in combination with light sensitivity and general stimulation sensitivity due to a brainstem tumour (maybe you have treated someone else not necessarily with a brainstem tumour but with a different brainstem condition with these same/similar symptoms).  Or another condition where the auditory pathways (nerves/nuclei) are irritated/affected from a permanent lesion/constriction/shearing??

 
Since posting these I have been at my lowest point due to over exposure and not being able to escape from ongoing outside noise - waking up to it every day and affecting me on every level...until we 'plugged' up our bedroom window to block out the outside noise and create a 'safe' haven for me to start my day off on the right foot and also a place to rest from outside noise and light and all stimulation when needed.  This has proven extremely beneficial and I have been able to get back a little bit of strength which has enabled me to gain some tolerance and it is improving a little bit each day.  All my tumour symptoms have got worse due to the over exposure.  I put this down to the fatigue created intially from the effects of the sound sensitivity which has exacerbated my symptoms. It is only since breaking the cycle and cutting out the noise first thing in the morning that I have made some improvement. 
 
Thank you in advance for your help Dr J. 


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DrJ

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Reply with quote  #2 
Hi, I did catch this earlier and wanted to think it over a few days.

The first thing I need to be clear about is that I am an audiologist and that is not a physician.  Audiologists do obtain a doctoral degree in our specialty (4 years post undergrad college completion) and we use that term Dr. but it is not a medical doctor.

Issues related to effects of brain tumors that affect the auditory function would be best directed to a neuro otologist.  (ear physician without the nose or throat part).

What I can say is that  I do have patients in treatment who had brain tumors or other injuries to the brainstem areas and lower brain areas and I often make sure to inform them that this is a kind of wild-card area in that no one has really produced much in the way of clinical data that would show how these individuals benefit from the various sound treatments available in the audiology clinic.

Some do very well and make good progress using TRT or other sound therapy programs, others find it more challenging to progress.

The human body is an amazing and resilient organism and is always in a state of recovery, aiming at full health!  This is one wonderful fact we can count on, as long as we are living, our bodies are orienting towards optimal function and health.  We can support that with proper nutrition, rest, mental imaging, calming and nurturing activities, exercise, outdoor times, avoiding too much time on computers or in front of televisions, social activities including making and keeping friends, family gatherings, and offering assistance to some one else, needier than we are.

Pets can be very good therapy as well as gardening.  Any activity that helps us to look outwards, away from our conditions or problems, can be very helpful in speeding recovery of the body. 

Neural synapes can grow and form, new ones take over old functions, we are truly amazing organisms and I do hope that you find slow but steady improvement.

My advice is to find someone, an audiologist trained in TRT, who would offer you a trial period of therapy and be willing to take it very slow and easy, to see if over time, your auditory system would rebound and recover.

Best wishes and sorry to take so long to respond, I like to think things over....

Marsha Johnson



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Marsha Johnson
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Johnloudb

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Reply with quote  #3 

Quote:
Pets can be very good therapy as well as gardening. Any activity that helps us to look outwards, away from our conditions or problems, can be very helpful in speeding recovery of the body.

Nice post Dr. J!!! Hope you both don't mind me thowing in my 2 cents here.

Lou, I've made my best progress by doing things I enjoy that involve sound.

I'm building a loudspeaker which involves the use of power tools. This requires ear protection (muffs), though, anyone should probably use ear  protection when using loud power tools like the router I use to cut wood. Still I can only listen so long, and have to stop. But, I keep at it gradually increasing the time I can work on this project I want to do.

I've also been doing some gardening, and using a hedge trimmer as much as I can tolerate. I take things very slow, and try to listen longer to sounds that I tolerate well, say every week or two.

And if my ears get tweaked, I just take it easy for awhile, think good thoughts, work my way back, and try to do more.

John

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kimberleydust

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Reply with quote  #4 
Thank you very much Dr J for your reply,

Quote:
What I can say is that  I do have patients in treatment who had brain tumors or other injuries to the brainstem areas and lower brain areas and I often make sure to inform them that this is a kind of wild-card area in that no one has really produced much in the way of clinical data that would show how these individuals benefit from the various sound treatments available in the audiology clinic.


Yes, that is the difficult thing - the brainstem area is a very unchartered area and little is understood - that is why I am very interested to know if others with brainstem disorders (any disorder where there is brainstem involvement) have Hyperacusis.  The difficulty here even then of course is that because H isn't a specific symptom the question still arises "Is it due to the brainstem disorder or not?"  Especially when H seems to be related to anxiety, depression, PTSD etc.  Are these then the cause of it or do they just make it worse (where it could be a symptom of a particular disorder).  One then has to stop being too concerned about the cause of it and concentrate on healing...

Quote:
The human body is an amazing and resilient organism and is always in a state of recovery, aiming at full health!  This is one wonderful fact we can count on, as long as we are living, our bodies are orienting towards optimal function and health.  We can support that with proper nutrition, rest, mental imaging, calming and nurturing activities, exercise, outdoor times, avoiding too much time on computers or in front of televisions, social activities including making and keeping friends, family gatherings, and offering assistance to some one else, needier than we are.


Yes I totally agree Marsha,  I am a total believer in the body being able to heal itself given the right tools...I am doing this as much as in my ability and knowledge.  I have extensively studied nutrition and fully support my body with this.  This came about due to having a life threatening illness...(amazing how it can do that hey!)  I have no choice but to provide my body with good nutrition as it lets me know in several ways if I abuse it now.  I have never smoked or drunk but ate a lot of sugar and simple carbohydrate foods, preservatives, artifical colours, white flour....it all took its toll.  High levels of stress most of my life...this totally drains the adrenals.  I am working on the stress factors which is really difficult when you have H!!  It stresses you on every level...so first step here has been to minimise exposure so I can gradually build up my tolerances again...working on this...

As I have said in previous posts I don't have access to an audiologist where I live and it is out of the question to fly anywhere to see one.  I would love to see a Neuro-otoligist but that isn't an option either right now.  They also seem hard to find here in Australia...but will look into it further - maybe a Neurologist would be able to recommend one I could at least talk to over the phone. 

I love gardening and I love animals....At the moment my balance and fatigue levels don't allow me to garden...I sit out and hand water after everyone has gone home and the traffic has quietened down.  We have an old border collie dog who is a real gem.  I would love a little indoors companion dog (I had one but we had to get her put down last year) but at the moment I can't risk having one in the house because of balance/falling risk and also can't risk having one that will bark as little dogs are prone to do, even when you train them otherwise. 

I am enjoying doing jigsaw puzzles at the moment as it is a quiet, low stimulating activity. 
I enjoy company which at the moment has to be very limited due to my fatigue levels - even just one on one interaction leaves me very fatigued.  But I am trying to gradually build this up...
I am unable to drive so am not in a position to help anyone else...at this stage I am not well enough myself but I am always free with a listening ear!! 

So you can see I am challenged on many levels and yes progress is slow - some days are better and I make the most of them...

John - no problem chipping in at all....I am also using that approach - gradually adding in more sounds, louder and for longer as I am able....some days I feel like I am back to square one then other days my family are surprised at what I can tolerate...so many factors involved...
The best example I have at the moment of my top level of tolerance is the coffee machine.  I can use it with my 5+ grade ear muffs on - long enough to make 2 cappacinos.  That's my upper limit.  inside the house.  I can tolerate the leaf blower or the lawn mower, if I am inside,  for s long as it takes.  Any power tools I have to be inside with protection on at this stage. 

I am trying to use this approach to build up not only sound tolerances but fatigue and all stimulation levels/tolerances as well...this makes it all al little more challenging and slower.  Meanwhile we have to deal with the emotional and mental aspects of having to live with reduced quality of life and the isolation that this all brings...maybe that could be another discussion....

regards
Lou










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DrJ

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Posts: 222
Reply with quote  #5 
Lou you are doing so many things well, I compliment you.

Injuries to that area do produce hyperacusis, that I can aver to.  Actually there are many people with whiplash injuries from car accidents who developed auditory conditions including hyperacusis.  So I hope you feel well supported in the fact that your lesion most likely caused this problem.

I really myself do not think people acquire hyperacusis because they are worried or feel bad about something that happened.....we can certainly feel bad about having hyperacusis!  But I do think this is a physiological-based condition and not just an 'emotional' one....

I hope most people feel that way. 

BTW There are very good audiologists down under and I hope you can find one.  Surely there might be one who will be willing to help you even long distance...

We used to have a mixed dingo-border collie dog.  Dee was a hard working animal and kept up with 3 growing kids, she was so busy being on alert with them on bikes or wherever.  A great animal.

Ok, glad to hear you have the other pieces in place.  Patience is a virtue and also can be a bit of a tiresome master but we need to remember that fable of the turtle and the rabbit...

MJ

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Marsha Johnson
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LynnMcLaren

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Posts: 7,990
Reply with quote  #6 
Interesting, (((( Smiles ))))

Injuries to the brainstem areas and lower brain areas can be seen in Chairi and there are many scholary articles written about Chairi and hyperacusis and tinnitus.
I bet there is alot of people in the world that have this and don't know whats bothering them until they find it on an MRI most likely lower brain MRI and brain swelling could be a cause of this too aquired Chairi 1 because with brain swelling there is nowhere for the brain to expand too, but drop downward.
Plus virus read a case of aquired chairi of a little boy because of the epstein bar virus and read also about toxins like lead and skeletal flourosis causing this and people in car accidents been reading up alot on this subject and that got me to thinking about gravity and high impact rides like rollercoaster ect.. 
on the brain that go fast and rise upward and plunge downward and the brain is bouncing around in ones skull and there is the gravity and force of a possible brain swelling and a downward plunge.
Things to think about whats not natural in nature and humans were designed to walk on the earth not plunge up and down and spin around at high speeds and about in the air and hit objects in cars at 40 60 70 80 90 ect miles per hour either. 
All which could lead to a case of tinnitus of Hyperacusis.
Just food for thought..... ((((( Smiles ))))))

This puts pressure on the brain stem and spinal cord.
(compression)
Could cause damage.

http://www.co-cure.org/chiari.htm        

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Take Care

Lynn
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kimberleydust

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Reply with quote  #7 
Thank you DrJ for your reply

Quote:
Injuries to that area do produce hyperacusis, that I can aver to.  Actually there are many people with whiplash injuries from car accidents who developed auditory conditions including hyperacusis.  So I hope you feel well supported in the fact that your lesion most likely caused this problem.


Thank you for that comment - all my own personal study tells me that the tumour/surgery/radiotherapy is most likely the cause as what I essentially have (even apart from the tumour itself) is acquired brain injury - the cause matters little really - the end result is ongoing neural and structural damage with inflammation which all create the given symptoms....that is why I find myself with such similar symptoms to various different conditions even though I don't have those actual conditions themselves.

Lynne - Chiari is actually a good example - even though I don't have Chiari malformation I do have some of the same symptoms as (very recently acquired) a friend who does have chiari.  We both have the startle reflex response to noise as well as hyperacusis - we both have balance issues and hypersensitivity to  stimulation...our nervous systems get hyper very easily leading to meltdowns. 
I also find myself being able to relate with certain aspects of autism spectrum disorders, ADHD, migraine sufferers, CFS/ME, etc.  One of the common factors here is brainstem involvement - inflammation - pressure on areas within and outside of the brainstem affecting the same cranial nerves, neural pathways etc.

So yes I do feel well supported here - the big question I have is WHY doesn't my neurologist support it?  The only answer I feel to this is that it isn't a text book case - the position of my tumour is very rare in an adult and so perhaps some of the symptoms I have they just don't connect even though they are the experts in this field one would think they would relate it these other conditions and be able to at least say Yes it is possible...
When they say No it's got nothing to do with it and send you to a psychiatrist that really causes you to feel invalidated by and frustrated with the very ones you look to for your main source of help.  So I am very grateful when a professional does acknowledge it is a real problem and not just anxiety or stress...which of course I acknowledge affects our bodies in the strangest of ways too...

Quote:
I really myself do not think people acquire hyperacusis because they are worried or feel bad about something that happened.....we can certainly feel bad about having hyperacusis!  But I do think this is a physiological-based condition and not just an 'emotional' one....


Yes I do feel the same - I believe that whatever the cause it is first physiological (and there are a few).  The mental/emotional aspects come in to play later due to the effects of living with such a debilitating condition...

Quote:
BTW There are very good audiologists down under and I hope you can find one.  Surely there might be one who will be willing to help you even long distance...


I have actually been in contact with Myriam  from Dineen & Westcott.  She was really helpful as well and also put my mind at ease that the tumour could certainly cause H in my case - and after talking for a little while she also wanted me to know that TRT would probably be of little help (she said that so as not to get my hopes up that it would). She didn't say it wouldn't help at all but that in my case be of little help.  She felt that prevention management was the best way for me to deal with my situation.  That is what I am finding to be most helpful at this time.
So now I have had 2 audiologists validate my own reasonings and what I have felt for some time and what my own personal study is backing up...

Oh Yes, Patience is a virtue and I need plenty of it!! Patience, Persistance, Perseverance!!

Lou

 




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DrJ

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Reply with quote  #8 
Lou, I would encourage you to try to have a hyperacusis evaluation by one of the audiologists and measure your LDLs.  I have had myself some very good outcomes with hyperacusics with brain injuries (accidents, cancer, benign growths, etc) and while they are on the edgier side of things, there is good possibility. 

Dr J

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Marsha Johnson
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kimberleydust

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Posts: 91
Reply with quote  #9 
Thanks Dr J for that info on your own patient successes - I have to go to Perth end of Sept. for my 6 monthly MRI - if I can cope with going - it is a 3 hour plane trip. There is an audiologist close by there whom Myriam has recommended.  If I can get down there I will definitely make an appointment.  Would one appointment be enough to find out what I need to know and get some treatment rolling which could perhaps be continued by phone?  We usually only get to stay down there 2 days as the whole trip (including accommodation) is paid by the Government Patient Travel Scheme and so they just fly you down for your appointments then fly straight back...I might be able to get my Dr to write a letter on the grounds of the Audiologist appointment being connected with the cancer appointments.

Thanks
Lou
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DrJ

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Reply with quote  #10 
You should send a letter ahead of time and inquire about how many visits, etc. are needed for treatment.  Usually a single visit is able to suffice for a full assessment and an evaluation of how best to proceed.  It is hard to know exactly which options or programs are best until we have the person in the clinic and complete all the various tests.  Most often, one program will stand out as the best option after all the interviewing and evaluating is completed.

Dr J

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Marsha Johnson
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aQuieterBreeze

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Reply with quote  #11 
Hi DrJ,

You mentioned-
"It is hard to know exactly which options or programs are best until we have the person in the clinic and complete all the various tests. Most often, one program will stand out as the best option after all the interviewing and evaluating is completed."


Some people with hyperacusis are not able to tolerate the wearable sound generators -
what do you suggest in such cases? What other forms of sound therapy do you think may be appropriate in a case like Lou's, IF she was not able to tolerate the wearable sound generators, or if for whatever reason they would not be appropriate in her situation?

Just curious, as I wonder if it may be beneficial for her to have some idea what other options may be available and appropriate.
(To be able to discuss the options with the clinician she does see.)
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