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Author Topic: Hearing loss while in WW  (Read 9506 times)

Lorbis

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Hearing loss while in WW
« on: March 09, 2012, 10:33:41 pm »
Im almost a year into watch and wait status. On several occasions I've had a sudden reduction in hearing that has been almost restored by going on steroids. A new episode began late today and I won't be able to speak to the doctor until Monday, therefore delaying any steroid treatment until then.

When hearing intermittently drops, does that signal that the tumor is growing? My next MRI is in May.
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LisaM

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Re: Hearing loss while in WW
« Reply #1 on: March 10, 2012, 08:57:53 am »
Sudden hearing loss is an emergency.  You can go to the emergency room and get steroids or you can call your doctor and have him/her call in a prescription for you.  Treatment is most successful if it starts within 24 hours of SHL.

You can also try a high dose of curcumin for a few days.  You can buy curcumin at the health food store.  I had sudden hearing loss last May and did a course of steroids.  The steroids made me feel so crazy I looked into alternative medicines and discovered curcumin.  I had another bout of SHL last June and took curcumin and did acupuncture.  I take curcumin everyday now and have not had anymore SHL episodes since last June.

Hope this  helps.
Lisa M
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Wait & Watch
1st Symptom Temporary SHL 7/10 AN Diagnosed via MRI 4/14/11
AN Size 4/14/11 = 1.4cm x 1.8cm x 1.7cm
AN size 7/14/11 = Same - Stable, no growth
AN Size 2/01/12 = 1.3cm x 1.3cm x 1.6cm (5mm reduction)
AN Size 11/27/12 = less than a centimeter! (50% reduction! And I can still hear!)

Mickey

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Re: Hearing loss while in WW
« Reply #2 on: March 10, 2012, 10:05:37 am »
In my opinion it although it could mean something, for the most part it dosen`t mean anything that you don`t allready know... Although being diognosed around 5 years (W+W) I had episodes of ear clog going back 10 years from then. Within a few days it always subsided (I took benadryl). The last time I did take steriods when first diognosed which also helped and never since had a serious clog again. Remember I`ve also changed my intake of supplements diet and exercise since diognosed. Best wishes, Mickey P.S. Curcumin is in the package of many supplements I take.
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Lorbis

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Re: Hearing loss while in WW
« Reply #3 on: March 10, 2012, 12:57:47 pm »
On my way to the health food store to get some curcumin. Thanks for the suggestion!
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chloes mema

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Re: Hearing loss while in WW
« Reply #4 on: March 10, 2012, 03:04:24 pm »
Lisa - does curcumin help with tinnitus? 
Karen
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Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

LisaM

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Re: Hearing loss while in WW
« Reply #5 on: March 10, 2012, 05:18:11 pm »
Karen - I don't know if curcumin helps with tinnitus.  It might.  I still have occasional bouts of loud tinnitus but it's usually brought on by loud noises (i.e. my 5 year old screaming), not enough sleep or some kind of heavy duty stress. Kundalini yoga I think helps with tinnitus because it works on the endocrine system and helps balance the nerves throughout the body.

Mickey & Lorbis... interesting Mickey that you take benadryl.  I take benadryl on and off as a sleep aid.  Ever since becoming a mother I have a very difficult time sleeping.  I wonder if benadryl has had any impact on the AN.... 

Mickey, how often and when do you take benadryl?  Anyone else on this thread regularly take benadryl?
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Wait & Watch
1st Symptom Temporary SHL 7/10 AN Diagnosed via MRI 4/14/11
AN Size 4/14/11 = 1.4cm x 1.8cm x 1.7cm
AN size 7/14/11 = Same - Stable, no growth
AN Size 2/01/12 = 1.3cm x 1.3cm x 1.6cm (5mm reduction)
AN Size 11/27/12 = less than a centimeter! (50% reduction! And I can still hear!)

Lorbis

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Re: Hearing loss while in WW
« Reply #6 on: March 10, 2012, 07:39:26 pm »
Lisa-I got the curcumin... What do you consider a high dose of it?
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LisaM

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Re: Hearing loss while in WW
« Reply #7 on: March 10, 2012, 09:29:18 pm »
That's a tough call... let me say that I am NOT a doctor.  Have you ever taken turmeric or curcumin before?  Though rare some people can have a bad reaction to it.

I think I was taking about 4 to 5  capsules 3 times a day (each capsule 500m) last May.  I was trying to match the dose of the steroids.

I have learned since, that when taking curcumin it needs to be heated with a fat (olive oil, coconut oil, butter, etc.) and black pepper.  These help with the bioavailability.  However last May I just took the capsules.

How is your hearing today?
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Wait & Watch
1st Symptom Temporary SHL 7/10 AN Diagnosed via MRI 4/14/11
AN Size 4/14/11 = 1.4cm x 1.8cm x 1.7cm
AN size 7/14/11 = Same - Stable, no growth
AN Size 2/01/12 = 1.3cm x 1.3cm x 1.6cm (5mm reduction)
AN Size 11/27/12 = less than a centimeter! (50% reduction! And I can still hear!)

lrobie

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Re: Hearing loss while in WW
« Reply #8 on: March 10, 2012, 10:01:22 pm »
My own home remedy for the bouts of hearing loss was to take 800 mgs of Ibuprofen every 8 hours.  My hearing would come back.  It doesn't work any longer, but my AN has continued to grow.  I shared my home remedy with my doctor and he said that if it works, he didn't see it as a problem.

Lisa
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6/2009 7mm x 4mm  W&W
8/2011 9.5mm x 5mm
2/2012 UPMC Follow-up , slight growth
Surgery on 7/18/12 w/Drs. Friedman & Schwartz (mid-fossa)
www.caringbridge.org/visit/lisarobie

Lorbis

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Re: Hearing loss while in WW
« Reply #9 on: March 10, 2012, 10:12:07 pm »
Wow Lisa-that is a high dose compared to what it says on the bottle-I've never taken it before so I think I'm going to start slow.  I think my hearing is about the same-it's hard to tell because I think I get used to the loss. Also, the tinnitus is doing a great job of making up for the loss!
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LisaM

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Re: Hearing loss while in WW
« Reply #10 on: March 10, 2012, 11:33:48 pm »
My hearing was gone ad I couldn't hear out of my ear... so I went a bit crazy with the curcumin... not saying it was the right thing to do... but I only did it for one day and then tapered off like the steroids.  Now I take 1000m per day.

The high dose for steroids for SHL is a high dose and is only done for a day and then you taper off slowly...

You may just be having a flare up.  Are you under stress or have you been exposed to loud noises?  Or are you sleep deprived?
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Wait & Watch
1st Symptom Temporary SHL 7/10 AN Diagnosed via MRI 4/14/11
AN Size 4/14/11 = 1.4cm x 1.8cm x 1.7cm
AN size 7/14/11 = Same - Stable, no growth
AN Size 2/01/12 = 1.3cm x 1.3cm x 1.6cm (5mm reduction)
AN Size 11/27/12 = less than a centimeter! (50% reduction! And I can still hear!)

mk

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Re: Hearing loss while in WW
« Reply #11 on: March 11, 2012, 10:24:54 am »
Just be aware that curcumin can cause severe abdominal cramps. When I started taking it, I took the dose recommended on the bottle, and I had severe cramps for days, until I reduced the dose.

Marianna
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GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

Mickey

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Re: Hearing loss while in WW
« Reply #12 on: March 11, 2012, 06:10:47 pm »
As far as benadryl, I have taken it on rare occasions when I had ear clog + allergies which did help me back then. The curcumin tumeric does come in an easy on the stomach pill. Saline sinus spray, Eucolyptus vapor has a way of soothing and opening the passages also. Stay healthy with many tips from the W+W brigade... Best wishes, Mickey
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Lorbis

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Re: Hearing loss while in WW
« Reply #13 on: March 11, 2012, 10:12:18 pm »
Thanks for all the suggestions.  I think I'm just having a flare-up..No stress-well, no more than usual!- and I haven't been exposed to any loud noises.  This hearing loss is usually preceded by a very loud increase in ringing, followed by reduction in hearing.  This is about the third time in a year that I've experienced it since my diagnosis.

However, the shl and ringing were the first symptoms I had, just about a year ago, that prompted me to call an ENT.  The first time I had it was last March.  It promptly cleared, so I ignored it.  It came back two more times, with the second time being very severe, last Easter, as a matter of fact, and then I called the doctor.  I had the MRI in May and then the diagnosis.  I've had two more MRIs since, but so far there has been no further growth.  I'm anxious to see what happens this May-hopefully NOTHING!
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YACEAS

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Re: Hearing loss while in WW
« Reply #14 on: March 14, 2012, 12:38:39 pm »
Curcumin by itself can be difficult to absorb.  Curcumin advocates might want to read up on it.  Pepperdine is supposed to be a good absorbtion helper.  I'm taking Biomor right now and I think it's helping--at least I haven't had any bad radiation side effects YET.  But what can I compare it to?  I actually began taking it before my Cyberknife treatment.
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Yet Another Cyberknife Experience At Stanford
Diagnosed with right-side 2.2 cm AN on Jan 16, 2012.  Stanford cyberknife from Feb 6 to Feb 10, 2012.
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