Tinnitus Center Mass General Ear and Eye

Discussion in 'Support' started by Carlos1, Nov 10, 2014.

    1. Carlos1

      Carlos1 Member Benefactor

      Location:
      Boston
      Tinnitus Since:
      08/2013
      Cause of Tinnitus:
      Root Canal
      I was reading an article in the hair cell regeneration thread and sent an email to Mass General Ear and Eye on the potential of the protein NT3 also being effective in treating those with Tinnitus and this was there response.

      http://www.masseyeandear.org/news/press_releases/recent/2014_Nature_Liberman/

      Hello Mary I found the above article fascinating if I could I’d like to ask if you thought that the protein NT3 would also effect those who have tinnitus?
      Thank you
      Carlos


      Thank you so much for reaching out to us. At this time we don’t think that this protein will effect tinnitus. However, you will be glad to know that our new Chief of Otolaryngology, Dr. Brad Welling, is developing a comprehensive Tinnitus Center here at Mass. Eye and Ear. We are currently fundraising for this effort and if you or anyone you know might be in a position to assist, I would be happy to meet with you to discuss the goals of the center.
      Thank you again and best regards,
      Robin
      Robin Popp
      Senior Director of Development
      Major Gifts-Otolaryngology
      Mass. Eye and Ear
      243 Charles Street
      Boston, MA 02114
      (617) 573-3303
      Bold Science. Life Changing Cures.
       
    2. Champ
      Woot

      Champ Member Benefactor

      Location:
      Boston, MA
      Tinnitus Since:
      01/2013
      Cause of Tinnitus:
      Acoustic trauma from headphones
      I'm in the Boston area and would be interested in getting involved somehow.

      Is there anything in particular we can help out with?
       
    3. AUTHOR
      AUTHOR
      Carlos1

      Carlos1 Member Benefactor

      Location:
      Boston
      Tinnitus Since:
      08/2013
      Cause of Tinnitus:
      Root Canal
      I'd love to start or help raise money ...hopefully we can come up with some idea's
      Mass General is an outstanding hospital and when they get behind something results usually get produced.
      We need to bring this to the attention of the board and come up with idea's maybe @Markku can help in this.
       
    4. Markku
      Inspired

      Markku Founder Staff Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      Need more details.

      How much have they raised so far?

      How much do they need to raise to open the center?

      And what are the goals of the center?

      @Carlos1, you should probably continue your dialogue with them and ask for some more details.
       
      • Agree Agree x 1
    5. attheedgeofscience
      No Mood

      attheedgeofscience Member Podcast Patron Mighty Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Resolved since 2016
      Cause of Tinnitus:
      Unknown (medication, head injury)
      Agreed.

      Unless they can document their raison d'être and explain how their "tinnitus centre" will provide value to the public beyond what current clinical trials are aiming to do, then this is just a waste of time. And money.

      Businesses that know what they are doing will get the funding they need. Businesses that don't, won't. Simple as that.
       
      • Agree Agree x 2
    6. AUTHOR
      AUTHOR
      Carlos1

      Carlos1 Member Benefactor

      Location:
      Boston
      Tinnitus Since:
      08/2013
      Cause of Tinnitus:
      Root Canal
      You can blow it off I'll keep tabs on it ....Mass General has a great reputation but I do understand your skepticism. I'm glad that more and more attention is being given to our condition.
       
    7. locoyeti
      Sunshine

      locoyeti Member Benefactor

      Tinnitus Since:
      2/2014
      Mass General is arguably the best hospital in the USA. Last I checked, they already had a Tinnitus Center, headed by Dr. Chemali. They had almost a 2 year waitlist. A friend of mine is a doctor at Mass Gen and spoke with her and she said they need more resources so I think that is what they are trying to do.
       
    8. attheedgeofscience
      No Mood

      attheedgeofscience Member Podcast Patron Mighty Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Resolved since 2016
      Cause of Tinnitus:
      Unknown (medication, head injury)
      I mean - and meant - no disrepect to either the hospital staff or the original poster of the thread. I am simply looking at the initiative from a finance point-of-view. There are - as you know - already pharmacological companies with up to 10 years of know-how in the field (I added "year founded" to the otology-company listing I have provided this forum with earlier on). So to start "re-inventing" the wheel at this stage is... well... it just does not really make sense to me. Of course, they may be pursuing something "new" - which is fine (maybe), but then let's see what that "something else" is.

      Indeed, after having met Prof. Jeanmonod last week, I more than ever have the impression that the medical field is somewhat fragmented and uncoordinated. For instance, the professor did not seem to know about either of the current on-going tinnitus clinical trials (AM+AUT) and LLLT he had never heard of. As such, I am not surprised, because he is a neurologist; similarly, I am sure that if I asked the highly competent folks at the Acquaklinik - headed by prof. Strauss - that they most likely would not know about Prof. Jeanmonod's impressive work. Same story with Dr. Wilden - in fact, he does not want to talk about anything else than LLLT. Period!

      So we have a lot of bright minds out there - but all working in their own little "cubicles". And to someone such as myself - a person working at the European HQ of a supersize tanker of a corporation with 500,000 employees - that just screams (lack of) management. And I am very "allergic" to lack of management as well as people re-inventing the wheel; re-inventing the wheel does not add business value and needs to be stopped (= waste of resources).
       
      • Agree Agree x 1
    9. Nick Pyzik
      Depressed

      Nick Pyzik Member

      Tinnitus Since:
      6/23/15
      Cause of Tinnitus:
      Listening to in-ear headphones & playing in a band
      The main cause of Tinnitus for many people is from lost connections of nerve fibers from hair cells in the ear. As explained clearly in the first article here:

      http://www.tinnitus.org.uk/tinnitus-and-hidden-hearing-loss

      The faulty connections between the auditory nerve and hair cells in the inner ear cause a side-effect where the gain increase is an amplification of neuronal noise, which gives rise to increased spontaneous activity of the nerve cells and the subject develops tinnitus.

      Another article describing the loss of nerve fibers

      http://acoustics.org/pressroom/httpdocs/159th/liberman.htm

      And Another article talking about the hidden hearing loss

      http://hyperacusisfocus.org/innerear/

      Nt-3 has shown to regrow the auditory nerve back towards remaining hair cells in the inner ear after disconnection of the synpases.

      This article talks about the use of it

      https://medicine.umich.edu/dept/oto...afened-mice-pointing-way-new-therapies-humans

      The deterioration of the nerves in our ears are most likely the cause of age-related hearing loss which gives reason to why people struggle to still hear with hearing aids. Hearing Aids do their job in amplifying sounds for us but with the loss of nerve fibers, it becomes so much more difficult for the brain to focus on sounds.

      http://thehearingblog.com/archives/3755


      Hidden hearing loss is Tinnitus.
       
    10. AUTHOR
      AUTHOR
      Carlos1

      Carlos1 Member Benefactor

      Location:
      Boston
      Tinnitus Since:
      08/2013
      Cause of Tinnitus:
      Root Canal
      @Nick Pyzik Nick thank you for the update. I have stayed in contact with MGH and have made myself available for any clinical trials. I remain hopeful

      Carlos
       
    11. Suzie

      Suzie Member

      Location:
      Milton MA
      Tinnitus Since:
      april 2014
      I will contact MGH they sent me a letter or brochure saying that they have a Tinnitus center there and to call to get on the list
       
    12. Jkph75

      Jkph75 Member

      Tinnitus Since:
      2/27/16
      Cause of Tinnitus:
      Otosclerosis
      What was your experience? Who did you see? Who is considered the best eat Dr there? Thanks for the help.
       
    13. Gb3

      Gb3 Member Benefactor

      Tinnitus Since:
      12/2019
      Cause of Tinnitus:
      SSHL
      • Informative Informative x 1
    14. weab00
      Gloomy

      weab00 Member Benefactor

      Location:
      nunya
      Tinnitus Since:
      05/2019
      Cause of Tinnitus:
      some good mf music
    15. Gb3

      Gb3 Member Benefactor

      Tinnitus Since:
      12/2019
      Cause of Tinnitus:
      SSHL
      I'd rather have Mass Eye and Ear have it lol.
       
      • Agree Agree x 2
    16. Bill Arsenault

      Bill Arsenault Member

      Location:
      Anywhere less loud than Boston.
      Tinnitus Since:
      Permanent/Highly intrusive since 2017.
      Cause of Tinnitus:
      Noise Over Exposure. Worsened by ototoxic Street Drugs/Meds.
      MGH is my hospital and health care provider -
      So I am there often.
      Well... not so much since the pandemic began.

      Anyway - just be aware that there are some extremely serious things going on at Mass Eye and Ear -
      All day everyday.
      Their Trauma Center is a particularly gruesome place -
      And complaints of ringing ears are not a priority in any way whatsoever -
      Trust me.

      Also - you need to realize there is virtually no significant profit to be made yet from dealing with “tinnitus people” -
      And therefore you get treated accordingly.

      You can argue otherwise all you want -
      But that’s the reality of the situation there.

      Once things settle down I will stroll through and try to get some info in person on any advancements in the “Tinnitus Program”.

      The last time I was there the only thing they did was refer me to a physical therapist who tried to massage my tinnitus away.

      I could have killed myself and the therapist for taking the day out of work for that nonsense.

      Hope everyone is Ok.
       
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