Tinnitus worsening...tumor growing??

[Barb909]

Hi everyone,

I have decided that I must officially be a "Watch and Wait" person since I haven't done anything yet. One team of doctors said wait 3 months for second MRI; another team said wait 1 year. In late August or early September (6-7 months) I will do it. Things are going fairly well, but the tinnitus has gotten lots worse over the last 2-3 weeks. I have read here on the forum many times that hearing can go overnight, and doesn't necessarily mean the tumor has grown. Does tinnitus work the same way? Can tinnitus get worse without the tumor getting larger? I'm making an effort to not run to the doctor and ask for the MRI now, but the noise in there is really, really distracting and it makes me worry....and dream about meetings with panels of doctors!

Thank you, thank you, thank you, for all of the information shared here. I have been reading, almost daily, trying to educate myself, since I have the gift of time with my AN, and I feel like I have actually gotten to know some of you! I met Moe at the Seattle AN support group meeting last weekend, and that was a real treat!

Thanks for thoughts on the tinnitus thing!

Barbara

[Jackie]

Hello Barb909,

Welcome to Watch and Wait! First of all let me caution you about allowing panic to rule your thoughts. Your AN is small at diagnosis, so you do have time to continue your research and gather your emotions and keep them in check. It is very common to allow panic to take over, we have all been there! I am not a doctor, but have been in your shoes for 4 years now and if I have learned one thing, it is that time is on my side and there is a reason why some of us choose to WandW and are comfortable with that decision. As far as your tinnitis getting worse, could it be you are just more aware of it now? My advise to you is to take a deep breath, continue to research and ask all the questions you want, we are all here to help. Make your decisions on future MRI's according to YOUR comfort. All of what you are feeling is very natural. Please know that we are all here to help.
Blessings to you
Jackie

[TJ]

Barbara,

Usually when first diagnosed, the doctors do repeat MRI's every six months.  Usually after 3 MRI's if there is no growth of the AN, you would then go for an MRI once a year.  At the same time it is very important to have hearing test done every six months.  That way the doctor has another tool if your hearing is getting worse.  As for the tinnitus, there are many factors that can make the tinnitus seem worse.  You have to protect your hearing in a noisy environment, your diet can play a big role as well.  Most doctors recommend low salt diet and cut back or delete caffeine.

For me the supplement Lipo Flavinoid helps keep my tinnitus under control.  But on occasion when it does go crazy I found listening to my Ipod really helps reduce it.

Take Care

TJ

[Barb909]

I forgot to mention in my first post here is that I met a woman at the meeting last week who has been watching for 11 years!! She is a very young 70 and said she rarely thinks about it anymore. She was a wonderful inspiration!

Thanks for the responses and suggestions. Cutting down the caffeine is a tricky one - love my coffee! But I have been making the effort. Tinnitus is about my only symptom, along with very mild hearing loss. Everything I read says the earlier it is treated, the better the outcome and chances of keeping what hearing you have. Since I have a good bit of hearing, I sometimes wonder why I wait... I guess my/our hope is that we have slow or non-growers and can avoid all treatment. I wonder how often that really does happen....what % of ANers. I'm not in panic mode anymore, thank goodness! But can do a bit of fretting now and then. I'm guessing that we all are putting the power of positive thinking to the test!

B.

[TJ]

Babara,

Here is hope, I went to an AN meeting last week and met a gentleman that has been in Watch and Wait for over 20 years.  There seems to be cases that do not need treatment at all.

TJ

[Mickey]

Hi! I`ve had tinnitus for 30+ years now diognosed with an AN for 3 years+, God only knows how long this has been with me. I`ve been W+W keeping a healthy lifestyle and hopefully my AN will stay "stable" with my next yearly MRI in Aug. Tinnitus is a constant with me more on my AN side sometime stronger than others. I`ve tried everthing under the sun with best results "Neuromonics which I stilll used to temper an occasional extreme outbreak. A member of American Tinnitus Association also whos stays focused on the prize, "quiet". Best Wishes, Mickey

[LisaP]

Hi,

Welcome to W&W, I have been watching for 2.5 years now. first dx in March of 08.  My tinnitus comes and goes, and as far as I know it does not mean it is growing.

Best wishes, my next MRI is Oct of 10 and I currently have one per year.

LisaP

[Barb909]

Thanks, Lisa. It is great to hear that maybe it is not related to tumor growth, but I get it that nothing is a for sure thing here. Today it was sooo   bad...loud, low toned and pulsating kind of thing....could almost make me feel sick... but not quite. Such a strange thing and so hard to describe to others who don't have a clue as to what it could sound or feel like. But, if this is all I would have to deal with...I would be very happy with that.

Barb

[overthill]

Hello Everyone

I love reading all the post. I have had AN for six years now. My hearing is all but gone in the left ear (that where the tumor is) it has been a 3mm. I

I was just wondering what Lipo Flavinoid is?  I listen to white music at night so I can sleep. The tinnitus is really loud. If I'm going deaf in that ear why can I still here the niose? anyone have a reason

[TJ]

Lipo Flavvinnod is a supplement that was invented by an ear doctor.  It has different vitamins such as B=12 Vitamin C and others.  It works in some and doesn't work in others.  As the bottle states it does take about 6 months to know if it will help.  For me it does lessen the tinnitus and it actually stopped the full head feeling that some of us get.  Hope this helps.

TJ

[Barb909]

Thanks, TJ. I think I will give it a try, especially if it helps the full head thing, too. That has just begun to bother me - maybe in just the last week or so. Feels like I could do the "just out of the swimming pool jump on one foot as I bang my head above the ear" thing, and something would fall out! Wouldn't that just be nice?!

Overthill: thanks for posting today....you are a new inspiration for me and others, I am sure! 6 years! Wow!

Barb

[moe]

Barb,
Hope your tinnitus is doing better, I sent you a PM.
Maureen

[suboo73]

Thanks, TJ. I think I will give it a try, especially if it helps the full head thing, too. That has just begun to bother me - maybe in just the last week or so. Feels like I could do the "just out of the swimming pool jump on one foot as I bang my head above the ear" thing, and something would fall out! Wouldn't that just be nice?!

Overthill: thanks for posting today....you are a new inspiration for me and others, I am sure! 6 years! Wow!

Barb

Hi Barb909,

For your question - my tinnitus seems worse when i am under stress, have started to really notice this in the last year...
So, i do my best to 'chill out' when i hear it getting worse.

Boy, i SURE WISH that jumping on one foot while banging on my head above the ear thing would work!!  
Alas, after being diagnosed with my AN, i had to stop doing that one!

Sue

[Barb909]

Thanks, everyone for the replies. I took a bit of a break from everything and headed to Santa Fe for a while! Wonderful place! The tinnitus was not a problem on/after the train (going) or the plane (return trip) and I was grateful for that. Also, I was curious about how it would sound working in the garden this year. I love the quiet of those days and wondered if I would hear quiet ever again. Well, while I can't report hearing "quiet", I can say that I was able to not focus on the noise in here and that was a good thing! So, as i keep saying, if this noise is all I have to deal with, that would be just fine.

2nd MRI at the end of the month. It's hard to not put life on hold until then....you know? Good luck to those of you who have MRIs coming up.

Barbara