Author Topic: Deaf and Terrible Ringing  (Read 3203 times)

bern

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Deaf and Terrible Ringing
« on: August 21, 2008, 12:09:16 pm »
I can't handle it anymore.  I can't hear, the ringing never ends, and the left side of my face is so full. I did gamma knife treatment a few weeks ago.  I still can't believe this is a permanent feeling and can get worse. I just thought I had water in my ear.

fbarbera

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Re: Deaf and Terrible Ringing
« Reply #1 on: August 21, 2008, 01:33:25 pm »
Bern, It sucks that you're going through such pain and discomfort.  My ride's been pretty bumpy as well.  I don't know much about tinnitus but it's a good bet your symptoms overall will recede with time.  Steroids might provide some relief through these especially difficult stages, even if they come with their own side effects.  Check in with your doctor about these symptoms.  In the longer run, one of the hearing aid options, like a BAHA, might be an option to help with your hearing issues.  You are probably pretty fatigued and warn out at this stage too.  Try not to push yourself too much.  The body will insist on rest for a few months after treatment.  Be well and hang tough, Francesco
« Last Edit: August 23, 2008, 05:45:47 pm by fbarbera »

Jim Scott

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Re: Deaf and Terrible Ringing
« Reply #2 on: August 21, 2008, 02:43:32 pm »
Bern:

I'm very sorry to learn of your problems following the GammaKnife procedure.  I pray you'll find relief soon.  I doubt this condition will be permanent as it's probably due to post-radiation swelling, which will pass.  I agree with the previous poster (fbarbera) that you should consult your physician to see if he can provide some relief in the form of steroids or other medications.  I'm not sure what can be done about the tinnitus but you should try to find out due to the fact that it's becoming unbearable.  Unfortunately, your situation, although perhaps atypical of GK patient's experiences, demonstrates that even non-invasive radiation procedures are not necessarily risk-free.  I hope and will pray that you find relief very soon.

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.

thornapple

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Re: Deaf and Terrible Ringing
« Reply #3 on: August 28, 2008, 06:38:56 pm »
Bern, how are you doing?

Thinking about you....hope this is temporary for you.

Kathleen5306

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Re: Deaf and Terrible Ringing
« Reply #4 on: August 30, 2008, 10:35:50 am »
Bern

How are you doing?  Has anything resolved or improved?  I had a similar reaction after my CyberKnife treatment six years ago, and unfortunately, went from perfect hearing to completely deaf in my right ear a couple months after my treatment.  The tinnitus remains to this day and I use positive thinking to block it out and get through the day.  I hope things are getting better for you and I hope your doctor is able to help you through this.

All the best,

Kathleen
Right side AN 19 x 9 x 8 treated CK 2002
Stanford Dr. Chang and Dr. Gibbs
Total hearing loss and tinnitus
Tumor has grown since CK treatment
Measures 20 x 13 x 14 June 2008
Translab Surgery HEI 7/30/2008
Dr. Friedman and Dr. Schwartz

4cm in Pacific Northwest

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Re: Deaf and Terrible Ringing
« Reply #5 on: August 31, 2008, 09:50:37 am »
I did not have GK but surgery. I experienced what you are now- post treatment. It was like this for 3+ months. As the swelling down, with time (and nasty pharmaceutical drugs), this dissipated. My brain also managed to retrain with the new SSD- it took time.

It has only been a month for you so far.  The tumor does swell after radiation – before it shrivels and hopefully recedes and disappears. This is why larger tumors, such as mine was, do not qualify for radiation. It sounds to me that you are going through the swelling stage before that brain booger dies and shrivels up.

Read this link
http://www.gammaknife.com.hk/

Here is a quote
  " What are the side effects of Gamma Knife Surgery ?
The fact that the irradiation from the Gamma Knife can be very precisely targeted to the treatment lesion means that only a very small amount of radiation is received by the normal brain tissue and adjacent structures. However, a small risk of adverse radiation effects (2 to 4%). This is usually in the form of swelling of the tumour and surrounding brain. Most of the effects are transient and can be treated effectively with medications.
."


Give this some time- neurological healing takes longer than other healing such as muscles etc. Tell your neurosurgeon and neurotologist exactly what you are experiencing- as you may still have swelling around the brain and acoustic nerve area

Hang in there and keep us posted.

HUGS

DHM


4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

wendysig

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Re: Deaf and Terrible Ringing
« Reply #6 on: September 08, 2008, 08:02:43 am »
Bern,
I don't have any advice but wanted to say I'm sorry you're going though such  a tough time.  I hope the tinnitus is only temporary and you get some relief soon.

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

bern

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Re: Deaf and Terrible Ringing
« Reply #7 on: November 29, 2008, 03:00:59 pm »
I think this weekend my hearing was lost even more. The ringing is louder and I have a chronic ear pain. I am extremely anxious and take ativan to help.  It does help but now I find myself taking more of it to help me cope with the ringing.  Do any of you take any anti anxiety drugs that work better than ativan?