Author Topic: Tinnitus getting worse. Need some quick advice  (Read 4923 times)

luvzmutt

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Tinnitus getting worse. Need some quick advice
« on: May 14, 2012, 10:47:28 am »
When I was first diagnosed with my AN in July of 2010 I had no symptoms.  It was found on my yearly MRI for the optic glioma I have (I have NF1).  I started having tinnitus symptoms in November of 2010, but the "ringing" was infrequent.  Recently it has developed into almost 24/7, and I have some feeling of fullness.  I'm not scheduled for another hearing test or MRI until December.  I am W&W yearly now instead of every 6 months.

My question ~ I feel like I need to have this checked out, but I am not sure which of my doctors I should call.  Should I just call my GP, my regular ENT, the audiology department at Hopkins or the surgeon (also at Hopkins)?

Thanks,
~Leslie
Right side AN diagnosed 7/10 - 6.1 mm x 7.8 mm
1st follow-up MRI 1/10/11 - 0.9 x 0.3 x 0.4 cm
2nd follow-up MRI 7/11/11 - 1.0 x 0.7 x 0.6 cm
Follow-Up 12/20/11 - no noticeable change
MRI 11/26/12 - .5x1.0x.6 cm
MRI 10//21/13 - 0.8 x 1.0 x 0.7
Some hearing loss AN side and tinnitus
NF1 & optic glioma

MDemisay

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Re: Tinnitus getting worse. Need some quick advice
« Reply #1 on: May 14, 2012, 02:11:32 pm »
Dear Leslie,

I am not a doctor, but do have a wealth of experience in recommending that if you feel concerned (you should trust your gut) and get an extra opinion of a neurologist. IMHO that's the way to go.

Others may want to jump in here, please consider what Jim and Jan have to say. They are way more experienced than I.

Mike
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

Jim Scott

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Re: Tinnitus getting worse. Need some quick advice
« Reply #2 on: May 14, 2012, 03:15:50 pm »
Leslie ~

I'm not a doctor and all I can offer is an opinion but if I were in your situation I would consult the neurosurgeon at Johns Hopkins.  A 'fresh' MRI may be in your future but the doctor is the one to decide if that is necessary.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

nftwoed

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Re: Tinnitus getting worse. Need some quick advice
« Reply #3 on: May 15, 2012, 10:09:37 am »
Hi

  Just an unprofessional opinion, but, the Hopkin's surgeon soon, considering the eye involvement!
But the tinnitus does indicate a hearing loss.

Suu

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Re: Tinnitus getting worse. Need some quick advice
« Reply #4 on: May 15, 2012, 07:46:28 pm »
G'day Leslie

Please let us know whatever your choice turned out to be?  I hope you're feeling OK as far as anxiety goes and you know where to come for a shoulder - Here!!

In the meantime as far as the tinnitus goes - try playing soft music, getting your mind onto somthing else like a hobby, movie or even a walk in the park.  I find that if I'm concentrating on the noise in that side then it it seems to get worse but as I find something else to do then it gets put into second place to whatever I've chosen to do. (does that make sense?)

Best of wishes
Suu xxoo
4cm Left side AN Translab August 18th 2010
Facial nerve not working
Nerve conduction Jan '11 Repeated 23rd May '11
SSD left side
5 ops in 6 weeks to fix CSF leaks
Tarsorrhaphy 9 Mar '11 Extended 26 Aug '13
Sling Thur 16 June '11
12/7 nerve graft 9 Feb '12

Kathleen_Mc

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Re: Tinnitus getting worse. Need some quick advice
« Reply #5 on: May 19, 2012, 12:52:11 am »
I'd call the surgeon, just my two cents
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

luvzmutt

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Re: Tinnitus getting worse. Need some quick advice
« Reply #6 on: May 21, 2012, 08:09:23 pm »
Just a quick follow-up, and a "thank you" to everyone who chimed in...

I went to the ENT (actually the nurse practicioner), it was the easiest to get an appointment.  My ears are clear.  I tried a 6 day med pack, no change in the tinnitus.  I am going to go back and get a hearing test, once again, there will be no wait for an appointment.  She also agreed that I should see a surgeon.   

Will update again.

~Leslie
Right side AN diagnosed 7/10 - 6.1 mm x 7.8 mm
1st follow-up MRI 1/10/11 - 0.9 x 0.3 x 0.4 cm
2nd follow-up MRI 7/11/11 - 1.0 x 0.7 x 0.6 cm
Follow-Up 12/20/11 - no noticeable change
MRI 11/26/12 - .5x1.0x.6 cm
MRI 10//21/13 - 0.8 x 1.0 x 0.7
Some hearing loss AN side and tinnitus
NF1 & optic glioma

Chances3

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Re: Tinnitus getting worse. Need some quick advice
« Reply #7 on: May 22, 2012, 11:18:56 am »
Hi Leslie,

I suffer greatly from Tinnitus, it has become worse since my surgery in 2010.  Here is what I do to keep it as mangeable as possible.  I take a diuretic ( need a prescription ), I stay away from nitrites, sulphides, sodium, MSG and any other food preservatives related to that family.  I also stay away from caffeine and alcohol and I don't take aspirin.  You should keep a log of what your diet is, and see if certain foods make the sound louder the next day.  I found out that wine vinegar added to my ring the next day.  Get a small spiral pad and log into it the diet and see if anything is triggering it, or making it worse. I try to get quality sleep, that seems to help as well.

Concerning your medical situation, I would complain like hell until they get you another MRI (insurance approved of course), and keep bothering the neurosurgeon.