Tired of Being a Mystery

Discussion in 'Support' started by Rachel1018, Mar 31, 2016.

tinnitus forum
    1. Rachel1018

      Rachel1018 Member

      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Unknown
      Hi, I am currently 24 years old. When I was 22 I started having pulsatile tinnitus in my left ear. I have seen 2 different ENTs and 4 neurologists in the last year and a half. I had an MRI, an MRA, an angiogram, 2 CT scans, and a lumbar puncture since all of this started. The first CT scan I had showed that I was missing a piece of bone that separates the ear canal from the brain. My ENT and neurologist agreed that I should undergo major surgery (middle fossa craniotomy and left mastoidectomy) to fix the issue and put a new bone in where mine was missing. So in December I had my head cut open and had to be off work for 6 weeks. I'm still recovering now, as it can take a full year for everything to heal. About 2 weeks after surgery, the pulsatile tinnitus returned and it hasn't gone away. I am beyond frustrated that I put myself through all of that for nothing! Neither the ENT or neurologist can figure out why the tinnitus came back, because the bone was supposed to block out the brain pulsations I'm hearing. Since the surgery, I have had another CT scan and the bone they put in looks like it's supposed to. I don't want to live with pulsatile tinnitus for the rest of my life! I'm only 24 and want to experience so many things, but having the noise constantly there annoys me to the point where I don't want to do anything but lay around. It makes it very hard to focus on my job and living a happy life.
       
      • Hug Hug x 8
      • Agree Agree x 2
    2. glynis-harbron
      Feminine

      glynis-harbron Member Benefactor Hall of Fame Ambassador Team Awareness Team Research

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      Aww I have just read your story and what you have been through .
      I hope over time you get some relief from your pulsitile tinnitus.
      Have you tried beta blockers to see if it helps reduce the pulsation if your doctor agrees

      Please don't give up hope.
      My youngest son is now nearly 21 and when he was 7 he had his ear bones removed and a mass removed when 16 in his middle ear....
      He is doing well and getting on with life ,has a job,car and at uni .......
      Stay positive your life will get better too....lots of love glynis
       
      • Like Like x 1
    3. Karen
      Talkative

      Karen Manager Staff Benefactor Hall of Fame Ambassador

      Location:
      U.S.
      Tinnitus Since:
      05/2010
      Cause of Tinnitus:
      First time: Noise 2nd Time: Ototoxic drug
      Hi,@Rachel1018,

      I read your story, too, and am so sorry you went through all that, only to see the pulsatile tinnitus return. I have pulsatile tinnitus, too, and I agree that it is beyond annoying, and can really make you feel like not wanting to do anything.

      In reading your story, I was wondering if the lumbar puncture had any effect at all in reducing the sound? Some people with PT have benign intracranial hypertension, which causes pulsating. Did the doctors test you for that?

      Best wishes, lots of sympathetic hugs,
      Karen
       
      • Like Like x 1
    4. Rachel1018

      Rachel1018 Member

      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Unknown
      Yes, they did test me for that. I actually had a CSF leak that they fixed during my surgery. But my pressure level was normal when they did the lumbar puncture.
       
    5. Karen
      Talkative

      Karen Manager Staff Benefactor Hall of Fame Ambassador

      Location:
      U.S.
      Tinnitus Since:
      05/2010
      Cause of Tinnitus:
      First time: Noise 2nd Time: Ototoxic drug
      Well, since your pressure was normal when it was checked, that's good. Will they be monitoring it, going forward, to be sure it remains at a normal level?
       
    6. Rachel1018

      Rachel1018 Member

      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Unknown
      They will be monitoring it. If I start having bad headaches they will do more testing to make sure it's still at a normal level.
       
    7. Baxette

      Baxette Member

      Location:
      Wisconsin
      Tinnitus Since:
      02/2016
      Cause of Tinnitus:
      No clue
      So sorry about all you've been through. Hugs.
       
    8. Magik

      Magik Member

      Was your pulsatile tinnitus constant (24/7) or it appeared only in certain head positions/movements, and for few moments?

      Be strong!
       
    9. Rachel1018

      Rachel1018 Member

      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Unknown
      I've had it both ways. There are days when I can't seem to escape it and then there are days where I only hear it when I'm laying a certain way or change positions.
       
    10. Rachel1018

      Rachel1018 Member

      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Unknown
      I've also noticed that it seems worse after drinking alcohol or exercising, like when my heart rate is up or blood pressure is raised. But I've had all the testing done and they didn't find anything abnormal with the blood vessels near my ear
       
      • Hug Hug x 1
    11. 12Valve98

      12Valve98 Member

      Tinnitus Since:
      August 2014
      Cause of Tinnitus:
      unknown
      Im in the same boat. I have had PT since August 2015. 2 weeks ago I had surgery to reinforce the sigmoid sinus and rebuild the bone. I had a hard recovery with bad migraines and just not feeling well. Im finally starting to feel good except the whooshing came back to today. Its very dim compared to how it was before the surgery but I fret that it will soon return stronger than ever. Im thankful for the two weeks that I had though. The doctor said give it 6-8 weeks but honestly I feel that I am now stuck with this. I feel defeated and angry right now. I thought it was done and maybe with a little luck it will go away on its own but Im not confident. I traveled half way around the country to get it done and will be dropping most of our savings on it just to hear the sound again. Please let me know what you find Rachel1018 as I will do the same! Maybe together we can find a permeant fix for this damn curse!
       
    12. The Red Viper
      Angry

      The Red Viper Member Team Research

      Location:
      US
      Tinnitus Since:
      March 15, 2016
      Cause of Tinnitus:
      Current Theory: Leftover infection ETD + neck muscle injury
      My view on this is that the definition of "normal" test results just doesn't cut it. Normal for one person is rarely what medicine considers to be statistically "normal." Thus when an MRI, MRA, CT, etc. come back "normal," it just shows that there isn't something life-threatening. It's like inspecting a car. A thorough workup by a mechanic can tell you that the car will run fine, but there might still be some unique "kinks" to each car that most mechanics will either look over or ignore.
       
      • Agree Agree x 1
    13. Rachel1018

      Rachel1018 Member

      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Unknown
      I agree, but doctors are always comparing results against numbers. I appear to be healthy with no concerns, yet I still have pulsatile tinnitus. Luckily, I only have to drive 2 hours to see my neurologist and ENT. But it seems like such a waste of money to keep having these appointments and tests done when there is no relief. Thank god for insurance, or I would owe upwards of $100,000 over the last 2 years! I have to change insurance next year and will probably have to change doctors. I guess that could be good or bad. Maybe I need a fresh opinion.
       
    14. WestCoastGirl85
      Buzzed

      WestCoastGirl85 Member

      Location:
      California
      Tinnitus Since:
      September 2011
      Cause of Tinnitus:
      Ototoxic ear drops getting into inner ear canal
      Hello, I also know the pain and heartbreak when you finally have hope and you get let down. Doctors say it will go away once you do this, and it's still there. I got my T when I was 25, just over a year into my new marriage. You can do this. you are strong. If I can do it so can you. You should see the videos on my youtube channel showing how scared I was in the beginning and where I am now.
       
    15. whale
      No Mood

      whale Member Benefactor

      Location:
      Florida
      Tinnitus Since:
      04/25/2016
      Cause of Tinnitus:
      Myofascial crap Bruxism, a jackhammer, stress who knows
      whats the name you your youtube. You don't want to know what comes up with a WestCoastGirl85 video search.
       

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