Looking for Pulsatile Tinnitus Specialist in the DC, MD, VA Area

[Phil K]

I've not had much luck with my Google searches and was hoping someone can recommend a doctor/hospital/clinic in the DC, MD, VA area familiar with pulsatile tinnitus.

I've seen the local ENT, Neurologist, Primary Care Physician, etc. They were all great general practitioners but I'm ready to see a pulsatile tinnitus specialist if such a thing exists.

My apologies in advance if this is posted in the wrong forum.

Thanks,
Phil

 

[tinnytad]

Hi Phil K, may I suggest joining the Facebook "Whooshers Pulsatile Tinnitus" group. The members there are a mine of information. That'd be a good place to start.

 

[Phil K]

I knew they had a website but not a facebook site. Thanks Tinnytad! I will.
Phil

 

[ted mavraganis]

Johns Hopkins... call them.

 

[Phil K]

Got around to calling Johns Hopkins. Have an appointment this week.
Thanks Ted.

 

[Lilah]

My friend went to Johns Hopkins for her mild tinnitus. Her ENT did not really tell her anything different compared to any other ENT, but that's probably the best place to go.

There is another Hopkins location closer to DC/Virginia if you are further south. There is an ENT/ear specialist there.
6420 Rockledge Drive Suite 4920 Bethesda, MD 20817

 

[Phil K]

Your friend is very fortunate her case is mild. Mine is a case of very loud pulsatile tinnitus in addition to already loud 'regular' tinnitus. My hope is that an Otolaryngologist with frequent PT experience can give me more insight than a family ENT who rarely sees cases like mine. You say 'probably the best', what are your other suggestions?

 

[Lilah]

'probably the best'

Just meant probably given that there are no good options.

If you find a good pulsatile tinnitus/tinnitus doctor, pls message me.

 

[Phil K]

Had my appointment at Johns Hopkins this week for PT. Nothing extraordinary, the appointment lasted at most 5-10 min. Dr. ordered 2 tests -
1) CT IAC/Posterior Fossa/Temporal WO Contrast Complex
2) CTA Head Stroke Protocol

So basically I'm back to square one...testing and diagnostics. I expected this so I'm not disappointed.

One thing to note - when asked about a prognosis or possible remedy, fix or cure the answer was sobering and most have heard it before - There is no fix or cure, you will have to learn to live with it. The tests are about finding a possible cause, not a cure.

 

[Lilah]

Had my appointment at Johns Hopkins this week for PT. Nothing extraordinary, the appointment lasted at most 5-10 min. Dr. ordered 2 tests -
1) CT IAC/Posterior Fossa/Temporal WO Contrast Complex
2) CTA Head Stroke Protocol

So basically I'm back to square one...testing and diagnostics. I expected this so I'm not disappointed.

One thing to note - when asked about a prognosis or possible remedy, fix or cure the answer was sobering and most have heard it before - There is no fix or cure, you will have to learn to live with it. The tests are about finding a possible cause, not a cure.

Are these tests specific to pulsatile tinnitus? Never heard of them before.

 

[Phil K]

I don't believe they are specific to PT. My guess is that this is a standard test listed on a menu of available radiological services that most closely matched what the Dr. needs to examine. Perhaps another Tinnitus Talk member can provide more clarity.

 

[Joe159]

I've been with Johns Hopkins for years. The otology/neurotology ENT Ive been seeing informed me that the University of MD right next door has an excellent tinnitus program geared towards tinnitus sufferers. She indicated they were the true experts in the area. They have a 3 stage program. I did stage one. Doing stage 2 this week.

 

[GregCA]

I've been with Johns Hopkins for years. The otology/neurotology ENT Ive been seeing informed me that the University of MD right next door has an excellent tinnitus program geared towards tinnitus sufferers. She indicated they were the true experts in the area. They have a 3 stage program. I did stage one. Doing stage 2 this week.

Could you please describe the 3 stage program?

 

[Joe159]

https://www.umms.org/ummc/health-services/hearing-balance/services/tinnitus/tinnitus-treatment

Ive attached a link. I think they're unique in that they seem to treat tinnitus in a very comprehensive way. I havent found any clinics like that. At least in my area. Stage 2 for instance. The hearing test is not your standard hearing test. They put you in a booth and play multiple sounds of tinnitus and search until they find your specific sound. I think they do that to equip you with the best equipment to address your tinnitus. If you choose to purchase that equipment during stage 3. A number of other things they do which to me makes them unique. It just seems quite involved.

 

[Lilah]

UMD Baltimore tinnitus program/Stage 3 doesn't include CBT or counseling, only sound therapy. This was kind of disappointing when I found out since I thought a major component of TRT is CBT/counseling.

 

[Lilah]

The hearing test is not your standard hearing test.

Keep us posted if they test for hearing loss at the higher frequencies (8000 Hz plus).

How was Stage 1? I'm signed up to go there next month. Sounds a bit like introduction to tinnitus.

 

[GregCA]

https://www.umms.org/ummc/health-services/hearing-balance/services/tinnitus/tinnitus-treatment

Ive attached a link. I think they're unique in that they seem to treat tinnitus in a very comprehensive way. I havent found any clinics like that. At least in my area. Stage 2 for instance. The hearing test is not your standard hearing test. They put you in a booth and play multiple sounds of tinnitus and search until they find your specific sound. I think they do that to equip you with the best equipment to address your tinnitus. If you choose to purchase that equipment during stage 3. A number of other things they do which to me makes them unique. It just seems quite involved.

Thanks. It looks like they broke down a pretty standard approach to Tinnitus into 3 stages:

1. education
2. sampling (collecting data from patient)
3. treatment

It appears involved because of the presentation they make of it, but it's quite ordinary actually. They seem to be a Neuromonics/hearing aids type of solution.

 

[Joe159]

I see. Thank you.

 

[Joe159]

Keep us posted if they test for hearing loss at the higher frequencies (8000 Hz plus).

How was Stage 1? I'm signed up to go there next month. Sounds a bit like introduction to tinnitus.

They threw alot of information at you in a group setting. Alot of info I already knew. I suppose it was helpful. I believe sometimes stage 1 is enough help for people and they dont return for stage 2. I guess it all depends on how severe your tinnitus is. For some that education is enough. For others stage 1 may be useless for them and they need much more.

 

[Lilah]

Doing stage 2 this week.

How was stage 2? Did they test for high frequency hearing loss (up to 20 kHz)?

 

[Lilah]

Is the area around UMD Baltimore tinnitus program safe to walk around? It's about a 7 minute walk from Camden MARC station but looks a bit deserted based on Google maps? Professionals walking around in the morning?