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Author Topic: 24 Months Post - Symptoms return  (Read 19844 times)

LisaM

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Re: 24 Months Post - Symptoms return
« Reply #15 on: January 12, 2012, 07:31:10 pm »
Great news!  So happy to hear your good news.  Hopefully your hearing will continue to improve!  Keep us posted.
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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!)

MinhVietNam

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Re: 24 Months Post - Symptoms return
« Reply #16 on: February 03, 2012, 12:21:27 am »
Hi everybody.
2 weeks after stopping medication, my hearing is fine but from third week  my hearing loss, tinnitus, loss of balance, they all come back. I used steroids back again in a week, these symptoms improve again. I know the dangers of steroids and do not want to abuse this drug too much. Does anyone know any other way to control the symptoms?
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LisaM

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Re: 24 Months Post - Symptoms return
« Reply #17 on: February 03, 2012, 06:15:04 pm »
So sorry to hear your news... are you still taking the curcumin and doing acupuncture?  Are you under any stress (besides the stress from thinking about the AN!)?  How's your sleep? 

I've just discovered another supplement called Honokiol that is being studied in South Korea, it is supposed to be very good for post radiation to help with healing and may possibly help with swelling.
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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!)

MinhVietNam

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Re: 24 Months Post - Symptoms return
« Reply #18 on: February 03, 2012, 08:09:16 pm »
I still taking Curcumin everyday because I think it will help in longtime but I just stop doing acupuncture. I don't think stress make my symptoms comeback, I still sleep well.
I am trying to find another way to help my hearing and my friend told me to use Gac oil which extracted from Gac plants in VietNam. My friend is an pharmacist and she believe Gac oil is good for post radiation. I don't really expect much but I am trying. Please tell me if you have any good news about post treatment studying.
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LisaM

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Re: 24 Months Post - Symptoms return
« Reply #19 on: February 03, 2012, 11:50:14 pm »
I am in a yoga teacher training all weekend... I will send healing thoughts your way.  Next week I will write again when I have more time.

Here are two yoga exercises to try:

http://www.youtube.com/watch?v=uwiZ0LbECwQ

This is for balancing the brain.  It should be done for 10 minutes each day

http://www.youtube.com/watch?v=zedVvFEh1ck

This is good for clearing things.  Start off with 3 minutes and build your way up to 5 and then if you can 10 minutes

I know it might seem strange, but you've got nothing to lose by trying it.  Don't give up!

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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!)

LisaM

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Re: 24 Months Post - Symptoms return
« Reply #20 on: February 08, 2012, 10:37:30 am »
Hi MinhVietNam.  How are you doing?  The steroids, the medication you've been taking, work to reduce inflammation (or swelling).  The curcumin also works on inflammation but you may want to up your dose.  I think the steroids work because you take a high dose of them and everything in your head shrinks. 

In addition to taking curcumin, I am on an anti-inflammatory diet.  No wheat, no dairy, no sugar.  I also regularly drink red wine which works as an anit-inflammatory and a blood thinner.  I also take reservatrol which is derived from red wine.  Something seems to be working because I had an MRI last week and the AN has reduced in size.  I went from 1.4 x 1.7 x 1.8 to 1.3 x 1.3 x 1.6 since last July.

I too took steroids for sudden hearing loss in the beginning of all this last May and felt so awful from the medication I vowed to find another way.  I started acupuncture and the diet without wheat, dairy or sugar last May.  Then starting taking curcumin & reservatrol and also tried to drink at least 64 ounces of water per day.  More recently I have started taking Honokiol and doing a daily practice of Kundalini yoga.  The yoga has quieted my tinnitus significantly.  Fingers crossed your hearing resolves.  Sending healing thoughts to you.
« Last Edit: February 08, 2012, 10:39:20 am by LisaM »
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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!)

MinhVietNam

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Re: 24 Months Post - Symptoms return
« Reply #21 on: February 08, 2012, 10:52:26 pm »
Hi LisaM. using of steroids make me gain weight, personality changes, increased blood pressure ... I have sent emails asking Dr. Medbery and he advised me not to continue to use steroids if necessary it could be replaced by Ibuprofen .. Currently I almost stopped my steroid so my hearing is fluctuating and balance is same. Sometime my hearing is good enough to listen to music but sometime I can't understand what is my wife talking.
I have also read the research on anti-inflammatory properties of curcumin, perhaps like you said I would try increasing the dose. Today, I start to practice Yoga like yoga video as you refer, at least it will help me relax.
I still go to work every day and have to face the challenges brought by the symptoms, I also hope I can get over things like you. Thank LisaM.
« Last Edit: February 09, 2012, 03:23:43 am by MinhVietNam »
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akaltz

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Re: 24 Months Post - Symptoms return
« Reply #22 on: February 14, 2012, 10:44:58 am »
MinhVietNam - hope you are feeling better!

LisaM - My husband had recently a symptom flare up at 8M after his CK and had to take steriods as well. It was really awful. His symptoms are still not back to the pre-flare up  levels. He is on the anty inflamatory diet and begun taking curcumin suplements. I was wondering where do you buy Honokiol?

Best regards,
Anna
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Husband diagnosed with Right side  AN 4/11.
4/10/2011 2.4 x 2.6 x 1.9 cm
CK 5/2011 @ Stanford Dr.Chang & Dr Hancock
11/7/2011

MinhVietNam

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Re: 24 Months Post - Symptoms return
« Reply #23 on: February 14, 2012, 05:33:36 pm »
Hi akaltz.
About steroids. First time I used Prednisolon but it seems doesn't work, after that I was told to use Dexamethasome, it works, all my symptoms gone after 3 days. Dexamethasome is 7 times stronger than Prednisolon.
I am not a doctor so you may consult with your doctor.
After stop using Dexa all my symptom is back, but I don't want to use it anymore, it is a dangerous medicine.
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LisaM

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Re: 24 Months Post - Symptoms return
« Reply #24 on: February 14, 2012, 06:42:16 pm »
akaltz - I buy my honokiol from econugenics.com.  The honokiol is supposed to be very good at promoting healthy tissue post radiation and it "may" help reduction of Vestibular Schwannomas, this is being studied in South Korea. 

Dr. Isaac Eliaz in Santa Rosa, CA works with Honokiol and cancer patients.  His company is econugenics, he imports the product from Japan.  It's not cheap!

Here is a link to the product:

http://honokiolextract.com/

MinhVietNam -  is anything better?  Are you hearing some days and not on others?  I think I may have told you that a woman on this forum lost her hearing for 3 months after taking steroids and she thought it was gone for good... only to have it return just before her surgery.  These nerves are so unpredictable!  What kind of work do you do?
« Last Edit: March 30, 2012, 03:57:17 pm by LisaM »
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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!)

MinhVietNam

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Re: 24 Months Post - Symptoms return
« Reply #25 on: February 18, 2012, 08:25:49 pm »
Hi Lisa, my hearing change many times during one day, most of daytime I can't understand any conversation but sometime I suddenly hear better and understand what people are talking. I can't explain why!
My hearing get worse since I stop using steroid and I have many problems in my work. I am an engineer, I work for VietNam Electric Group. AN really change my life because I can only hear on AN ear, I lost hearing on other ear on surgery 6 years ago.
Next week I will have some important meetings, an appointment with my doctor so I have to take steroid now, I need to hear better although I afraid of using this medicine.
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LisaM

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Re: 24 Months Post - Symptoms return
« Reply #26 on: February 20, 2012, 12:50:55 am »
You have a job that sounds stressful.  Losing your hearing is stressful.  My guess is you do have stress in your life.  We all do to some degree.  My thinking is that the stress hormone cortisol causes inflammation and my strategy is to reduce inflammation.  To reduce inflammation, try upping your curcumin, put an ice pack on your head, take holy basil, pectin is also good for reducing inflammation.  I don't eat wheat or dairy.  This is an anti-inflammatory diet.  Stay completely away from sugar!

When I was first diagnosed with the AN, I had sudden hearing loss twice.  My hearing was gone for a about 5 days both times.  The first time I didn't do anything and my hearing returned (I did stop wearing earplugs to bed).  The second time I took steroids, that was almost a year ago.

Today I woke up with a very full feeling in my ear and tinnitus.  I took my daughter to an amusement park yesterday and rode a ride that went around in circles at a very rapid speed.  I think that these cranial nerves are so sensitive that the slightest thing can impact them.  Spinning around in circles must have put pressure on my hearing nerve.

Last May I did acupuncture 3 times a week for 3 months.  It was expensive, both monetarily and time wise.  The acupuncturists put about 30 needles in me with as much electrical current as I could stand.  At the end of the 3 months the AN did not shrink, it was the same size.  I was disappointed but I felt better than I had in years.  I stopped doing the acupuncture except for a treatment here and there (now I am resuming treatments at once a week).  The acupuncturists were the ones who got me thinking about working on inflammation and I think that the acupuncture had a delayed effect as the acupuncture works the meridian system.  Can you go to an acupuncturist everyday for a week or two?  You've got to fight for these nerves!  I don't know if any of this will work, but trying is certainly not going to hurt!  The fact that you still have hearing that comes and goes means something.  Sending you healing thoughts.  Drink at least 64 ounces of water per day!

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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!)

akaltz

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Re: 24 Months Post - Symptoms return
« Reply #27 on: February 22, 2012, 02:24:38 pm »
Hi LisaM and MinhVietNam,

Thank you for your suggestions! My husband is done with steroids but still not feeling as well as beore the symptoms flare up. He is going to acupuncture once a week and taking tons of suplemnts. I didn't relaize that you have to take curcumin with oil and heated. He may have to try that and also upping his dose, his job is very stressful :(.

Hope all is well!
Anna
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Husband diagnosed with Right side  AN 4/11.
4/10/2011 2.4 x 2.6 x 1.9 cm
CK 5/2011 @ Stanford Dr.Chang & Dr Hancock
11/7/2011

PaulW

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Re: 24 Months Post - Symptoms return
« Reply #28 on: February 22, 2012, 04:55:28 pm »
Hi Minh,
This is just a theory of mine but it might be worth testing.
It is known that taking steroids brings your hearing back...
If you suffer from Sudden Hearing Loss, from causes other than AN, Steroid treatment, Hyperbaric treatment are known to save hearing.
What isnt clearly understood yet is the mechanism involved in hearing preservation for AN's. Why it works for some and not for others, and why it seems to work so well so quickly, and why things get worse so quickly for some when you stop taking them.

One mechanism that maybe at play here, is one of the side effects of steroids which is increased blood pressure.
As your blood pressure increases more blood flows to the nerves and cochlear, may improve hearing.

Quite often the blood vessel to the cochlear is squashed by the AN in the Internal Auditory Canal.
If your blood pressure is higher it maybe enough to push past the restriction in the IAC and supply the cochlear and nerves with blood again.
Then when your blood pressure drops, blood supply to the cochlear and nerves drop and you hearing gets worse.

So my theory is, that when you take steroids, one of the mechanisms at play is that the increased blood pressure helps blood flow to the cochlear. When you stop taking steroids your blood pressure falls and your hearing diminishes again.

So How can we test this theory safely?

Maybe worth getting a blood pressure monitor...

Blood pressure is naturally low first thing in the morning and while you are asleep..
If the theory has merit, you hearing would be poor first thing in the morning and improve when your blood pressure reaches the point where it pushes past the restriction.

The best way to safely raise your blood pressure, to test the theory, is through excercise.
If you excercise for 30+ Minutes, does your hearing improve temporarily?

If yes then maybe there are safer options to slightly raising your blood pressure, other than taking steroids.

My thoughts are with you.
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10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

LisaM

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Re: 24 Months Post - Symptoms return
« Reply #29 on: March 30, 2012, 03:58:24 pm »
Hey Minh!  How are you?  Please update us on your hearing!
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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!)
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