Can anoyone help me with my questions?/ transear update

[JAndrews]

Hi to everybody!
This forum has really been a help to me:) I have a few questions I was hoping someone out there could help me with. I am 2 years post op- translab- and my tinnitus still has so many different tones to it.  Sometimes high pitched ring and then other times will have a beeping sound, swooshing sound to it.Does anyone else have this? It scares me sometimes- makes me think the tumor is back. My head is still sensitive (not painful) in the area behind where the incision was. Sometimes if I turn my head a certain way I will get an ache or a sharp jolt like feeling in that area. Anyone experience this? I know these symptoms seem so trivial but sometimes I focus on them so much its probably not healthy! Anyone out there had their cpa meningioma return?? Oh and the transear hearing aide so far has not done much..I'm on my 4th month- ready to give up
Thanks so much
Julie

[rayden1]

HI

have transear also 2 yrs do not find it great but still trying as it cost so much.Thankfully have no tinnitus since surgery but do have the swoosing sounds painless but irritating normally when i wake during the night. I also have part , root of tumor remaining. Not worried.

When is your next mri ?

Ann x

[sunfish]

I had CK, not surgery, but I have lots of tinnitus.  Typical ringing, whistling, clicking, crackling, thumping.  Who would have thought your ear/brain could make so many different noises?  It doesn't bother me, unless it gets really loud.  I don't take this tinnitus as any indication that something's wrong.  Just that my nerves have been irritated by all this.  I'm sorry you haven't found any relief - I'm fortunate, as I still have partial hearing in my AN ear, and my hearing aid really helps.

[JAndrews]

Thank you so much for your responses. It makes me feel better to hear that other people have the same weird tinnitus noises as I do. I also get that swooshing sound at night, not sure if I wake up with it or if the swoosh wakes me up:)
I am very close to giving up on transear. Its all the money put out for it that keeps me hoping it will work..but honestly....it really does nothing. If someone is directly behind me and speaking into the deaf ear I can understand their words a little bit better..but other than that I have to say the thing is useless. I asked Dr. Brackmann about it before I purchased it. He said he had heard lots of different feedback on it, but then said.. You can try it for 30 days and return it. He is such a smart man, I should have known if he didn't have good things to say about it it probably wouldn't work. The company gave me 60 days, but I'm way past that.
My MRI was due last Feb 2010. Its now 2 years since surgery and I still haven't worked up the nerve to do it. I just start to freak out as soon as I pick up the phone to schedule it. Anyone else feel this way?

[wendysig]

Hi Julie,

I'm sorry to hear your tinnitus is such a nuisance.  Is it possible that the whooshing sound you hear at night is your heartbeat?  I sometimes hear what I would describe as a whooshing sound and my doc seems to think that could be it.  If I change position I don't hear it anymore.  It'd s a real pain in the neck if it wakes you up, but not much you can do.  Have you tried using a white noise machine at night?  I've heard they are very relaxing and can actually help quite a bit.  As for the sharp pains you sometimes get behind your ear, I get them too once in a while and while I don't know what is causing them, I'm pretty sure it's not an AN regrowth since I've had two MRIs and they were clear.  I know that the thought of having an MRI makes us all nervous, but make an appointment and have one.  If you can't bring yourself to go alone, have a friend or spouse come with you.--having the MRI will probably put your mind at rest when you get the results and if (God forbid) it shows something, you'll deal with it.  Avoiding the MRI will only continue to stress you out.

[Brendalu]

Julia,
I'm sorry you are having these issues.  I had translab almost six years ago and the sounds in my head still roar at times...they probably do all of the time, but it seems like the more stressed or tired I am the noisier my head is.  Most times I can ignore the sounds.  For the most part the side of my head my AN was on is still numb but tender.  The bow from my glasses irritates it, if I rest on head on that side too long it becomes very tender.  I just try to ignore it or be very protective of it.  I think even if we were each given a manual on how our surgeries and treatments are supposed to be, no two would be alike.  We must now bask in our uniqueness and embrace a new "me".  Afterall, now when someone says we have done something less than stellar we can say, "I've had brain surgery....what is your excuse?"  Good luck, hang in there.
Hugs,
Brenda

[nteeman]

I had a similar experience with TransEar. For me the only time it seemed to make a noteable difference is when I totally plugged up my good ear so I could not hear on that side at all. In normal use I would turn it on and off to see if I could notice any difference and I couldn't.

 I had my audiologist give me two hearing tests + word recognition. First with TransEar then without. The results were the same-I did not hear or understand any better with TranEar.

I returned it within the allowed trial period. While I was glad I did not have to pay I was more disappointed that this nonsurgical aid failed to help me.  

And FWIW, I did try the BAHA demo at my Surgeon's office and while it showed a noticeable difference with and without, for me it was not dramatic enough to convince me of another surgery and a permanent post in my head.

-Neal

[bell]

Hi Julie,
I am 2 years post op, retrosigmoid, and my head still expierences sharp pains now and then and it is still alittle sore and sensitivie at times. It still gets swollen(inflammed) at times and in particular when I have headaches. I still can not lay on my AN side all night for it starts to hurt. I had 8 chiropractic visits and she really manulipulated my head and neck with deep, I mean deep massage and trigger pionts. It did not feel really good, but afterwards my head has
never felt better. She really workde out kinks in neck and sensitive parts of head. 
I had 2 year MRI and no signs of tumor, I thought it was better to know than not to know. Just my thought.
Good luck in your decsion in getting an MRI.
Bell