I Need Someone's Kind Help

[Luisa]

Hi everyone, I am having a difficult time understanding how this site works and connecting with someone. Because I had regular T for many years, this past whole year, where major new sounds and hummings were set off led me to Neuro radiologists who did a big cerebral angioram saying I had a fistula in my brain. I need some of you please to just give me some feedback on the very dramatic new noises.
For the past year, there is an increasingly LOUD vibrating engine with a loud hum that I can actually feel the pressure of. I am as if Im next to a loud humming engine, which I can feel as well as hear. The ringing the right ear is more of what they call Tinnitus. The loud humming is of DEEP concern, especially since its growing and growing, no Mask-able, So Im reaching out to you all.
Does anyone have any experience with this kind of motor boat loud humming??? It is not a customary Tinnitus. I need to hear from someone that might be able to shed light.
Also, Im in the long Island area.....is there anyone anywhere in New York that would like to form a group where we can actually contact each other??
Thanks for any feedback.....Luisa

 

[attheedgeofscience]

It is not a customary Tinnitus. I need to hear from someone that might be able to shed light.

The only person I can think of who might be able to help is Professor Jeanmonod in Switzerland. Going down that route is - however - neither going to be cheap or easy (long waiting list). But speaking with the doctor costs nothing; you can start off the process by sending him your latest audiogram and any other relevant information you may have in terms of results. It is a pleasure to speak with him.

http://sonimodul.ch/

However, before contacting him, you should have some kind of conclusion from the physician who referred you to the radiologist - it is that doctor's job to determine if your condition is treatable in some way (and refer you, if so). Professor Jeanmonod is only someone who should be contacted when all other options have failed. He only treats certain specific brain disorders - and his treatment protocol is still relatively new (as I understand it).

The professor can also assist with a diagnosis if you do not reach one within your current medical system.

I haven't met him (yet) - so the above is as much as I know.

 

[Leah]

I experienced this just once and passed. I know exactly what you are talking about, great description too.
Keep us updated.

 

[awbw8]

Hi Luisa,

I have had that feeling before with pressure changes (the physical humming feeling), but it doesn't sound like that would be the cause of yours.

You might try this guy, he is in NYC: http://weillcornell.org/samuelselesnick

Since there is something physically identifiable in your brain, he might be of help.

 

[gary]

Hi everyone, I am having a difficult time understanding how this site works and connecting with someone. Because I had regular T for many years, this past whole year, where major new sounds and hummings were set off led me to Neuro radiologists who did a big cerebral angioram saying I had a fistula in my brain. I need some of you please to just give me some feedback on the very dramatic new noises.
For the past year, there is an increasingly LOUD vibrating engine with a loud hum that I can actually feel the pressure of. I am as if Im next to a loud humming engine, which I can feel as well as hear. The ringing the right ear is more of what they call Tinnitus. The loud humming is of DEEP concern, especially since its growing and growing, no Mask-able, So Im reaching out to you all.
Does anyone have any experience with this kind of motor boat loud humming??? It is not a customary Tinnitus. I need to hear from someone that might be able to shed light.
Also, Im in the long Island area.....is there anyone anywhere in New York that would like to form a group where we can actually contact each other??
Thanks for any feedback.....Luisa

Luisa. I had a lady I was talking to on here that described her T as a loud car engine motor, I'll try and find her and see if I can get you two hooked up. In the mean time remember you are not alone in this, there is a lot of love on this site. You may want to visit "The Positivity Thread" under the support. If you want to email someone just click on that persons name, you will then see a pop up, then you will see 'Start a Conversation" click on that and you can email that person.

 

[Luisa]

Thank you so much Gary. Friends who understand is what I need for sure. I wish there was a way to form a local "in-person" support group. All the best....Luisa

 

[Steve]

Thank you so much Gary. Friends who understand is what I need for sure. I wish there was a way to form a local "in-person" support group. All the best....Luisa

Hi Luisa and welcome.

There is an ATA support group in Long Island, I don't know how the meetings go or what it's made up of but these are the contact details from the ATA site:

Long Island Tinnitus Support Group

Lisa Kennedy & Anthony Mennella T: (516) 486-6746; (516) 379-2534 E: elisabethmatilda@gmail.com

And as Gary said there are plenty of us on here that will happily lend support. If you want a mini tutorial on using any part of the site just message me and I'll help out.

Steve

 

[gary]

Thank you so much Gary. Friends who understand is what I need for sure. I wish there was a way to form a local "in-person" support group. All the best....Luisa

I just wanted to tell you I sent you a message, it will show up in red in your inbox at the upper right.

 

[valeri]

@Luisa

There is a thread called low frequency tinnitus stated by Rachel Murry, there's few of us here with the engine noise.

Your situation could be different and caused by whatever the doctors found on your brain, but all I'm saying is you're not alone.

 

[valeri]

@attheedgeofscience
How successful is Prof. Jeanmonod in treating tinnitus?
Any statistics?

 

[attheedgeofscience]

How successful is Prof. Jeanmonod in treating tinnitus?

It is already half a year ago since I spoke with him. I believe he has treated/cured a few tinnitus patients who also suffered from epilepsy (that was the main reason for their treatment). As a by-product of the intervention, they got rid of their tinnitus also. I don't believe he has cured any patient with tinnitus as primary symptom (yet), but he is expecting to be able to do that (at some point, perhaps already now - don't know).

His website is now fairly informative. But the information is also highly specific and hence somewhat limited - he is a neurosurgeon within a very specific field (I believe there are only two HIFU devices built/operational at this time). He is a world class expert.

When I see him on November 6th, it will be the first time that I get an objective diagnosis for a subjective condition.

Any statistics?

The "only" statistics he keeps is on the interventions themselves (and not the pathologies treated in those cases).

http://sonimodul.ch/home/factsfigures

 

[valeri]

@attheedgeofscience

Thank you for your response!
You're a wealth of information, hope your appt goes well, keep us posted!

 

[Rube]

Thank you so much Gary. Friends who understand is what I need for sure. I wish there was a way to form a local "in-person" support group. All the best....Luisa

@Luisa there is a support group that meets in long island once a month.
contact info is at bottom.

DATE: Monday, Sept 19th, 2014 (This group typically meets the fourth Monday of every month)

TIME: 7:30 pm - 9:30 pm

PLACE: Franklin Hospital/Medical Center (Cafeteria)
900 Franklin Ave
Valley Stream, NY 11580

DIRECTIONS: Franklin Hospital is located on the South Shore of Nassau County in the community of Valley Stream. It is located at 900 Franklin Avenue, immediately south of the Southern State Parkway, north of both Sunrise Highway and Merrick Road, south of Hempstead Turnpike, and east of Cornoa Avenue. Franklin Avenue becomes New Hyde Park Road noth of Hempstead Turnpike. We are just 10 minutes away from JFK. Parking is located just north of the hospital along the Southern State Parkway service road. It extends from Franklin Avenue to Corona Avenue.

For more information contact Lisa Kennedy at (516)486-6746 and Anthony Mennella (516)379-2534

 

[Sailboardman]

Hi Luisa,

Don't have what you do, just regular high pitched T. Just wanted to let you know, the people here are fantastic and if you want and endless wealth of support and knowledge base, it's all here.

I grew up on L.I. North shore, Huntington area. Lived in by the city for many years and now in FL.

God bless,

Sailboardman