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

Discussion in 'Support' started by Phil K, Jan 9, 2019.

    1. Phil K
      Fine

      Phil K Member

      Location:
      USA
      Tinnitus Since:
      4/2018
      Cause of Tinnitus:
      Unknown
      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
       
    2. tinnytad

      tinnytad Member

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      unknown
      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. :)
       
    3. AUTHOR
      AUTHOR
      Phil K
      Fine

      Phil K Member

      Location:
      USA
      Tinnitus Since:
      4/2018
      Cause of Tinnitus:
      Unknown
      I knew they had a website but not a facebook site. Thanks Tinnytad! I will.
      Phil
       
    4. ted mavraganis

      ted mavraganis Member Benefactor

      Tinnitus Since:
      january 2016
      Cause of Tinnitus:
      perforated eardrum leading to sensori neural hearing loss.
      Johns Hopkins... call them.
       
    5. AUTHOR
      AUTHOR
      Phil K
      Fine

      Phil K Member

      Location:
      USA
      Tinnitus Since:
      4/2018
      Cause of Tinnitus:
      Unknown
      Got around to calling Johns Hopkins. Have an appointment this week.
      Thanks Ted.
       
    6. Lilah
      Mellow

      Lilah Member Benefactor

      Location:
      USA
      Tinnitus Since:
      12/2018
      Cause of Tinnitus:
      Unknown
      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
       
    7. AUTHOR
      AUTHOR
      Phil K
      Fine

      Phil K Member

      Location:
      USA
      Tinnitus Since:
      4/2018
      Cause of Tinnitus:
      Unknown
      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?
       
    8. Lilah
      Mellow

      Lilah Member Benefactor

      Location:
      USA
      Tinnitus Since:
      12/2018
      Cause of Tinnitus:
      Unknown
      Just meant probably given that there are no good options.

      If you find a good pulsatile tinnitus/tinnitus doctor, pls message me.
       
    9. AUTHOR
      AUTHOR
      Phil K
      Fine

      Phil K Member

      Location:
      USA
      Tinnitus Since:
      4/2018
      Cause of Tinnitus:
      Unknown
      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.
       
      • Hug Hug x 2
    10. Lilah
      Mellow

      Lilah Member Benefactor

      Location:
      USA
      Tinnitus Since:
      12/2018
      Cause of Tinnitus:
      Unknown
      Are these tests specific to pulsatile tinnitus? Never heard of them before.
       
    11. AUTHOR
      AUTHOR
      Phil K
      Fine

      Phil K Member

      Location:
      USA
      Tinnitus Since:
      4/2018
      Cause of Tinnitus:
      Unknown
      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.
       
    12. Joe159

      Joe159 Member

      Tinnitus Since:
      February 2018
      Cause of Tinnitus:
      Unknown
      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.
       
    13. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      Could you please describe the 3 stage program?
       
      • Hug Hug x 1
    14. Joe159

      Joe159 Member

      Tinnitus Since:
      February 2018
      Cause of Tinnitus:
      Unknown
      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.
       
    15. Lilah
      Mellow

      Lilah Member Benefactor

      Location:
      USA
      Tinnitus Since:
      12/2018
      Cause of Tinnitus:
      Unknown
      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.
       
    16. Lilah
      Mellow

      Lilah Member Benefactor

      Location:
      USA
      Tinnitus Since:
      12/2018
      Cause of Tinnitus:
      Unknown
      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.
       
      • Agree Agree x 1
    17. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      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.
       
    18. Joe159

      Joe159 Member

      Tinnitus Since:
      February 2018
      Cause of Tinnitus:
      Unknown
      I see. Thank you.
       
    19. Joe159

      Joe159 Member

      Tinnitus Since:
      February 2018
      Cause of Tinnitus:
      Unknown
      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.
       
      • Agree Agree x 1
    20. Lilah
      Mellow

      Lilah Member Benefactor

      Location:
      USA
      Tinnitus Since:
      12/2018
      Cause of Tinnitus:
      Unknown
      How was stage 2? Did they test for high frequency hearing loss (up to 20 kHz)?
       
    21. Lilah
      Mellow

      Lilah Member Benefactor

      Location:
      USA
      Tinnitus Since:
      12/2018
      Cause of Tinnitus:
      Unknown
      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?
       
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