Hi I'm a newbie

Discussion in 'Introduce Yourself' started by Dolly, Mar 17, 2013.

tinnitus forum
    1. Dolly
      Asleep

      Dolly Member

      Tinnitus Since:
      2008
      Hi I've just found this site. I had a brain tumour removed and it has left me with tinnitus 24/7 as I'm luckily enough to have had the tumour completely removed I feel I shouldn't complain but this tinnitus drives me mad. It's a roaring whooshing sound and I also have a mild ear ache with it. Does anyone else have this sort of tinnitus.
       
    2. 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
      Yes, I have a similar type of tinnitus. It is a whooshing sound, with drumbeat undertones. I also have a constant, steady hissing sound. Do you have that, as well? Also, when mine first started (or actually when it got worse), it was roaring. Our type of tinnitus must be somehow different from the tonal, chirping crickets kind of tinnitus. I don't have any earache with it now, but I did in the beginning.

      I know you are very glad to have the tumor removed, and it is wonderful that it was removed completely!! But I'm sorry that you are left with the tinnitus. Are you having sleep problems as a result? How are you coping?

      Welcome to Tinnitus Talk! We're glad you joined us!
       
    3. Dolly
      Asleep

      Dolly Member

      Tinnitus Since:
      2008
      Hi Karen good to hear from you. I don't have any hissing noise mine is more roaring that whooshing. How long did your earache last for. I had tinnitus before I knew I had the tumour but only had it occasionally but since I had it removed I've had it constantly. I don't have trouble sleeping as I have a TV in the bedroom (much to my husband's annoyance lol) and watch that until I'm so tired I drop off. How am I copiing, well I get so miserable and moody although I try really hard not to but sometimes I can't help it. Does it mean once you have tinnitus you have it for life?
       
    4. 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
      Dolly, My earache lasted for a short while (maybe a couple days) when my tinnitus first started. I believe that was because of injury to my right ear, due to loud noise. The second time, when my tinnitus became very severe, I had sort of a dull ache in my ear that lasted for a couple months. Then, it went away.

      How long ago was your tumor removed? I'm wondering if you are experiencing a tinnitus spike due to the fact that you are still recovering from surgery. It could be that, after your body readjusts and recuperates, your tinnitus will settle down. Have you been rechecked by your doctor, and have you asked him about the tinnitus? It could be that this is a common side effect in someone who is recuperating from this type of surgery, particularly since you already had mild tinnitus to begin with. As you may have read on this site, tinnitus can start out roaring, and then settle down after awhile.

      To answer your question "Does it mean once you have tinnitus you have it for life?", I would say not necessarily. Some people's tinnitus has subsided to the point that is not noticeable; this is called habituation. I've heard of cases where people's tinnitus has actually gone away. But for most of us, it's somewhere in between. Most of us find that, in time, our tinnitus subsides, or we no longer pay attention to it, and it becomes a non-issue. This is called "habituation". In the meantime, there are many ways to cope. Please look around on this forum, read some of the threads, and I believe you'll be encouraged by what you read!
       
    5. Dolly
      Asleep

      Dolly Member

      Tinnitus Since:
      2008
      Hi Karen I had my tumour out 2 years ago and last year had a BAHA fitted (screwed into my skull). I see the surgeon who removed the tumour in October so I'll see what he says because he knows exactly what he did. One more question (sorry to keep asking but it's so good to talk to someone who knows what tinnitus is like) do you feel as if your ear is blocked all the time. I'm going to have a good look round this site this evening.
       
    6. 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, again, Dolly,
      Since it has been 2 years since you had the tumor removed, have you been experiencing tinnitus all this time?

      I'd like to hear more about the BAHA device. I've read a little bit about it, and the fact that it is basically screwed into a titanium insert in your head. I understand that you have to remove the BAHA whenever you go into water (shower, swimming, etc.). Is that correct? How is your hearing since you received the BAHA? Is it good? Tinny?

      To answer your question about the feeling of your ear being blocked all the time. Yes, a feeling of fullness in your ear (is that how you would describe it?) is very common. In fact, I was suffering with that for about the past 2 years, and it is just now going away. It has something to do with an imbalance in the eustachian tubes. It is nothing to worry about, but still, it can be very annoying!
       
    7. Dolly
      Asleep

      Dolly Member

      Tinnitus Since:
      2008
      i Karen thank you so much for your reply it really helps talking to someone who also has tinnitus. I had mild tinnitus before my tumour that was one of the signs of the tumour I was sent for an MRI scan and it picked it up straightaway, it was a year after I had the BAHA fitted and a few months after that the tinnitus was 24/7, it's so reassuring to know the feeling of 'fullness' is very common hopefully I'll be lucky like you and it will go away.
      With the BAHA yes I'm very pleased with it I have a Ponto Pro and have no feedback or wind noise from it and no it doesn't sound tinny at all it's a very clever device. I had to lose all my hearing on the right side for the surgeon to get the tumour out and my BAHA picks up the sound and transfers it to my hearing ear, if I'm in crowded places I just press the centre of the BAHA and it cuts out the noise behind me so I can concentrate on people in front of me talking. I know people who have the BP00 and Davino BAHAs and complain of wind noise and feedback, but you don't get any of that with the Ponto Pro. To have it implanted wasn't a problem just a bit sore the next day, then you have to wait 12 weeks for it to settle into your skull, then return to the hospital where they finely tune the BAHA to your needs, clip it on and off you go it's brilliant. Yes you have to take it off when in the shower or a swimming but you get a small black velvet box to keep it in just pop it in there then when out of the water dry your hair and pop it back on I can't imagine my life without it now it's just part of me.
       
    8. 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
      Dolly, The BAHA does sound like an amazing device, and I'm glad to hear it has such high-quality sound! Did implanting the device require an overnight hospital stay? It sounds like this turned out to be a very good option for you, and I'm glad it's working so well.

      So, maybe your constant tinnitus has something to do with this. I guess the best thing to do is ask your doctor about it when you next see him. In the meantime, I'm glad you're a member of Tinnitus Talk! We are here to support one another, and if there's any way I can help, or if you just want to vent, we're all here for you. :)
       
    9. Dolly
      Asleep

      Dolly Member

      Tinnitus Since:
      2008
      Hi Karen sorry I've taken so long to get back to you. Yes I stayed in hospital over night because I had it done under a general and it was my surgeon's preference., but I know of a lot of people that have had theirs under a local and said it was no worse than going to the dentist.
       
    10. 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, Dolly,
      That's good to hear, about the ease of implanting the device.

      So, how are you doing? Any improvement since last time?
       
    11. Dolly
      Asleep

      Dolly Member

      Tinnitus Since:
      2008
       
    12. 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
      Dolly,
      I'm sorry there's been no change in the tinnitus for you. It probably does have something to do with having the surgery; your already mild tinnitus that was there before may have been exacerbated by the surgery. But, it could settle down after awhile. That's the thing about tinnitus; everyone's case is different, and there's a lot doctors don't know about it.

      I still have the ringing and pulsating 24/7, too. I don't notice the ringing when I'm sleeping, but I believe the pulsating is there all the time, because I've even incorporated it into my dreams sometimes! I'm going to see a doctor who specializes in pulsatile tinnitus in May. Don't know if he'll be able to find anything (I've had so many tests already) but we'll see...

      Please don't get discouraged. Who knows, yours may calm down all by itself. I'm glad the sun is shining there for you! Are you in the UK? Did you have a lot of snow this winter?
       
    13. Dolly
      Asleep

      Dolly Member

      Tinnitus Since:
      2008
      Hi Karen yes I'm in the UK we had a lot of snow in January and was actually snowed in for 2 days then three weeks ago we had more snow but not so much. I'd love to go on holiday but I'm a bit scared to fly at the moment. As I said my ear feels full and the tinnitus and dull ache worries me. I love the sun and before I had my brain tumour we used to go to India and just soak up the sun. I was in America 3 years ago my niece goes to Charlottesville for operations and I went with her last time when she had her checkup then we went to see friends in Beckly, then on to Washington and then to Myrte Beach in South or North Carolina I can't remember which one it was. I loved America. You said you've had many tests what did they involve.

       
    14. 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, let's hope the snow is done for you now!! Sounds like you had a lot; we didn't have anything here this winter except a couple of snow flurries. I am in the Atlanta, Georgia area; pretty far south. I'm glad you enjoyed being in the U.S. I've been to Myrtle Beach a number of times; it is always a fun experience! I've never been to the UK, but would love to go. I'm kind of afraid to fly right now, too. I haven't flown since the pulsatile tinnitus started.

      To answer your question about what tests I've had: MRI/MRA with contrast; CT scan (no contrast); Doppler of carotid artery. I've also been to several doctors, and had audiogram tests a number of times. I have some hearing loss in the tinnitus ear, and I'm sure that has added to the problem. I'm going to another specialist in May, and he may recommend additional tests.
       
    15. Dolly
      Asleep

      Dolly Member

      Tinnitus Since:
      2008
      Will you let me know how you get on I think I'm going to ask for some tests
       
    16. 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
      Yes, I will. The doctor I'm going to in May is one I've been to before. He had ordered a CT scan with contrast; however, I did not have it done because I was afraid of the contrast dye. But now, I think I'm willing to try!

      Please do let me know what tests you decide to have done, too. I hope you can find out what is causing your pulsating.
       
    17. Dolly
      Asleep

      Dolly Member

      Tinnitus Since:
      2008
      Don't worry about the contrast dye, when my tumour was found they monitored it for 3 years to see if it was going to grow, over the 3 years I had 10 (yes honestly 10) scans 2 CAT scans and 8 MRI scans. The 6 of the MRI scans were all done with contrast dye with no problems at all, the only thing I found was that it made me feel very hot.
       
    18. 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
      My goodness! Ten scans; that's a lot, but I can understand why they would want to monitor the growth of the tumor. Thanks; the fact that you did not have any bad reaction to the dye does make me feel better. Take care, and stay in touch!
       
    19. Dolly
      Asleep

      Dolly Member

      Tinnitus Since:
      2008
      Hi Karen have you ever heard of anyone trying acupuncture for tinnitus
       
    20. 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
      Yes, I have. I've tried it myself! For some people, it seems to work. I wasn't so lucky, I'm afraid. It did help to calm me down, because I tried acupuncture during the first year my tinnitus and pulsatile tinnitus became severe. But the tinnitus is still there. It is a very relaxing and calming experience, and it probably depends on the type of tinnitus you have as to whether or not it helps.

      Are you considering trying it?
       
    21. Dolly
      Asleep

      Dolly Member

      Tinnitus Since:
      2008
      Hi Karen yes I am thinking about giving it a try but I want to see what my doctors say first
       
    22. 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
      Dolly --- I think that's a good idea, to see what your doctors have to say first. Then, if it seems that there is nothing more they can do, you could try the acupuncture. There are a couple of people on this forum who have had some success with acupuncture. One of them is Cookie; I believe she said it had lessened her tinnitus quite a bit.
       

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