Further Investigation Possibilities?

[Jamclem]

Hello everyone,

Just wondering if anyone knows of any further investigation or therapies that would be good for pulsatile tinnitus (unilateral)?

I have had an MRI and now an CT scan, both found nothing unusual. The doctor now seems reluctant to try anything else.

Are they any clinics actually speciallising in PT around? Has anyone had any success with further investigatng?

Cheers

James

 

[billy43]

Hi James.there are some other test you can have done .One of which is very invasive and has some risk of complications.Is your Pulsatile Tinnitus Objective?That is That a doctor can hear it by placing his stethoscope in the area of the ear in which you hear your PT.Also I did hear of a center in California that was scheduled to open and was gonna specialize in Pulsatile Tinnitus

 

[Jamclem]

Hi @billy43

Thanks for your reply.. What sort of invasive tests do you mean? Do you also have PT? I think I have read about some clinic opening up in US but probably is not much use when I live in Europe.

 

[glynis]

A friend of mine has PTt who comes along to our support group and been put on a low Betta blocker and uses a hearing aid.
She was suicidal at the start of her PT but now feeling a lot better and coping well and enjoying life again and got her smile back....lots of love glynis

 

[billy43]

Hi James.Yes I have PT.just over 3 years.Early on I had several tests/scans.MRI,MRA CT.The one I didnt have done is called a Cerebral Angiogram.One specialist recommended it and two others strongly recommended not having it done.It's invasive and there's a small risk of a stroke and some other bad stuff.And looking back I'm glad I did not have the test done .That's because I'm doing very well ,Thank God .

 

[James]

Hi @Jamclem,

My further investigations led me from one doctor to another, then emails. I tired. Then medication. That's a good thing. I hope you find something that helps your t.

 

[Jamclem]

Thank you for your replies. I guess I would rather find the cause and a solution for it before I consider any medication. I just cannot believe that more cannot be done after a MRT and CT showing nothing unusual.

Do anyone know anything about http://thetinnitusclinic.co.uk and if there is anything for PT?

Also https://radiology.ucsf.edu/patient-care/services/pulsatile-tinnitus-clinic
The university of CF state on their site that their diagnosis rate is 90% for PT. Used this clinic before?

Have a nice week everyone

J

 

[The Red Viper]

I think an audiologist can place a microphone in your ear to listen for any turbulent blood flow. I want to experiment with this myself as I have intermittent pulsatile T when bending over and I can stop it by pressing on my right carotid artery. However, it's difficult to find a small enough microphone that I can place into my ear canal.

 

[Lola in Ohio]

Hello all. I've had PT since Jan 2015. It got so bad I could no longer work. I've had a catscan, several MRI's and finally a cerebral angiogram. The findings of my cerebral angiogram included severe tortuosity of my cerebral vertebral arteries and a condition in those arteries called " fibromuscular dysplasia" . No cure. I am currently using a device called Neuronomics Oasis, that was recommended by a Neuro ENT specialist, to help me habituated/cope with hearing this hissing sound. At best, It's s form of biofeedback that helps distract my awareness long enough for some relief. I use it 2-4 hours a day. I look forward to learning about what other treatment may be available. Thank you for sharing.... don't give up!

 

[Jamclem]

Hello everyone

Thank you all for your advice.

Hi @Lola in Ohio Thanks for your advice. Although you did not receive the best answer from your cerebral angiogram, I am really pleased that someone actually told you a cause for your PT and that is actually worth so much to find out that you are not just going mad.. I have PT in one ear and I have had an MRI and CT scan, both were inconclusive. My doctor (who actually runs the Tinnitus Centre) seems to think I have no more options after my MRI and CT scans which is really upsetting really. I do not need antidepressants, I just want to find out what is wrong and hopefully find a solution.

How is the Neuronomics Oasis machine working for you? When do you use it exactly? Do you find it helps? Is your PT in both ears or one?

I keep reading about cases where doctors (particularly in America) have really looked at the MRI and CT scans and have actually seen things which thee previous regular ENT specialists have missed. I would happily pay them to look over my CDs. Does anyone have any recommended PT doctors?

Have a nice afternoon everyone

J

 

[billy43]

Hi James.There is a doctor in New York city .Maksim Shapiro out of NYU.He's a specialist with Pulsatile Tinnitus .I believe ,for a fee ,he will look at your scans to see if any thing was missed.I saw this doctor in person a couple of years ago.He seemed extremely knowledgeable with PT.Also very caring.And he has had some success in some cases.

 

[Jamclem]

@billy43

Thanks for the advice. I mght contact him at some point. I have actually found a directory of other recommended specialists in Switzerland where I live, so I am going to book an appointment with a professor doctor of tinnitus, not just a ENT doctor.

I did find a PT clinic at the university of Southern California (I think). They contacted me with a quote and frankully I was pretty shocked by how dear the prices are for medical care in the USA.

Have a nice weekened

J

 

[Karen]

Hi, @Jamclem,

I hope you are able to find a knowledgeable doctor in Switzerland that can help you. I've heard (on Whooshers.com) that it is a good idea to have your scans looked at by a neurointerventional radiologist (like Dr. Shapiro). They may be able to see something in your scans that an ENT may not see.

Good luck in finding some answers. Also, I've heard that the PT clinic in San Francisco (I believe that's the one you contacted) is very good.

I have PT in one ear only, too, and haven't found any answers so far. I hope you'll post again after you've seen some of these doctors, to let us know what they find.

Best wishes,
Karen