Questions about post CK

[Tisha]

The great thing about W&W is the ability for technology to improve and statistics to come out.  I think if I had no symptoms to speak of, then I would probably W&W just for that reason alone.  Happy New Year

Tisha

[suboo73]

Tisha, 

At times, i think W & W can be challenging - but you are right, lots of chances for new things and stats to become available.

Have a peaceful New Year and keep the faith as you travel to California.
I am praying for all good things for each and every one here in 2009!

Happy trails!

Sue

[Tumbleweed]

Tumbleweed,

It's me again.  I've looked over your herbal anti-inflammatory mix of turmeric, etc.  Do you mix an equal amount of each?  You said to start with 1/3 teaspoon.  I'm guessing I just mix up whatever amount I buy in equal quantities, then just consume 1/3 teaspoon of the mixture?

Are you still doing that, and do you think it keeps the inflammation down?  Did you have any pre-inflammation symptoms before treatment?

Tisha

Hi, Tisha:

Yes, I just mix up an equal amount by weight of each ingredient and then take 1/3 teaspoon 3x/day. I'm used to taking herbs, so I graduated quickly to taking 1 full teaspoon 3x/day. But I recommend you start with the lower dose to see how well your stomach tolerates it (it's fairly mild stuff).

All that said, that post was written a while ago and I now rarely take the herbal formula. I've been taking other herbs and supplements instead to prevent inflammation and other issues. (I was taking so much stuff, something had to be cut out!) FWIW, here's my daily program in a nutshell:

Get as much sleep as possible (probably more important than anything else)
Take 3 or 4 Flavenzym pills on an empty stomach, first thing in the morning with 8-12 oz water -- Flavenzym is a combination of systemic enzymes (papain, bromelain, etc.) that digest inflammatory proteins, thereby reducing inflammation. It must be taken on an empty stomach or it'll simply (and only) digest your food. Wait 30-60 minutes after taking Flavenzym before eating. Another product, Wobenzym, has the exact same ingredients but costs a lot more. Buy online at www.vitacost.com

Immediately before breakfast, I take the following with a 12oz glass of water:
450 mg rhodiola rosea -- herbal extract combats fatigue
650 mg curcumin -- anti-inflammatory extract of turmeric root (which is in my herb formula); also a powerful anti-oxidant and anti-angiogenesis
400 IU vitamin E -- nourishes the nervous system; some studies show SNHL reversed in some patients when high doses of vitamin E were administered quickly after onset.
calcium/magnesium supplement (500mg/250mg) -- nourishes the nervous system
1000 mg vitamin C (ascorbic acid) -- helps calcium assimilate (calcium needs an acid stomach environment to be digested)
8 mg manganese -- helps the body utilize vitamin E, some literature indicates it reduces tinnitus (I've found it often helps me in this regard)
1 capsule Country Life branded coenzyme B-complex -- B vitamins are perhaps the most important class of nutrients for the nervous system and are best taken together. This particular supplement is extremely high in pantothenic acid (which increases the body's production of cortisone and other adrenal hormones to combat inflammation, stress, fatigue and nervous disorders) and niacin (which is believed to increase blood flow to the hearing nerve). Cortisone is a natural steroid.

I take the curcumin 2x more throughout the day (total = 650 mg x3 = 1950 mg), vitamin E twice more (total = 400 IU x 3 = 1200 IU), calcium/magnesium supplement once more (daily total = 1000 mg calcium, 500 mg magnesium), and 1 more capsule of the Country Life B-complex (2 capsules total daily), always right before eating a meal to increase absorption.

Mid-day, when my stomach is empty, I take 3 or 4 more Flavenzym pills with a large glass of water.

Right before bed, I take 3 or 4 more Flavenzym pills with a large glass of water.

My diet is largely fruits, vegetables (emphasizing green vegies), whole grains, legumes and salmon (sometimes substituting halibut or trout). Salmon is extremely high in pantothenic acid and the other B vitamins. I avoid cane sugar like the plague (it greatly increases my tinnitus and dizziness). With the exception of fish, I try to eat oily foods like nuts and vegetable oils in moderation.

Everyone is different and has different dietary needs, but this program makes me feel my best. When I deviate from it, I get increased tinnitus and dizziness, so it must be right for me. Your mileage may vary.

Tisha, it's difficult for me to answer your last question about pre-inflammation symptoms before treatment. Who can tell whether my symptoms (progressive hearing loss, disequilibrium, etc.) were due to the tumor pressing on my cranial nerves and brainstem or were because of inflammation? I'm pretty certain I've got some inflammation-related symtpoms now, but they are kept in check by sticking to my program outlined above.

I hope that helps!

Best wishes,
Tumbleweed

[Tumbleweed]

Tumbleweed:

Thanks for referring us to your post CK information thread.  I have printed it off and it looks like it is very helpful.  Did you bring your own valerian root (the herbal sedative) with you from home?

How are you feeling now?  Are you still feeling fatigued?  Have you had any other post CK complications?  Have you had to call Stanford for any type of medications or complications?

Hi, NE Farmwife:

Yeah, I brought my own valerian root extract from home. I find Gaia brand to be superior. Hold the bottle up to the light. If you can see through the liquid, it's mostly alcohol. If it's dark, there's a lot of herbal extract in it and it'll be more powerful.

I'm feeling pretty good. I don't get fatigued if I take my rhodiola rosea extract each day; my energy is back to what it was before treatment.

Go here to read about my symptoms immediately after receving CK: http://anausa.org/forum/index.php?topic=6904.0

I had a brief episode (lasting several days) of hyperacusis during Thanksgiving holiday, but it has resolved since then.

I haven't had to take any medications since getting treatment, although I considered taking steroids a couple weeks afterwards (but didn't). I've lost an additional 15dB of speech threshold and mid-frequency hearing since treatment 6 months ago. Currently, I have tinnitus (mild on most days, and greatly improved since treatment) and mild disequilibrium (which I've had for the past 8 years). I think my disequilibrium is probably about 15% worse than it was before treatment. Besides that and the incremental hearing loss, I feel like I've completely recovered from treatment.

Best wishes,
Tumbleweed