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Pre-Treatment Options / Stress and AN
« Last post by mwatto on Today at 03:05:08 am »
Read this today: Stress has been postulated to trigger or contribute to inner ear pathologies but there is little objective evidence. We investigated stress hormones in Ménière's patients and patients with acoustic neuroma. Data were compared with those from a control group of patients with facial spasm. We assayed classic stress hormones including adrenocorticotropic hormone, cortisol, growth hormone and prolactin. We found a strong positive correlation between cortisol and adrenocorticotropic hormone in Ménière patients and patients with acoustic neuroma but no correlation in patients with facial spasm. The data also revealed in female patients with Ménière's disease or with acoustic neuroma an unexpected significant positive correlation between cortisol and prolactin. The data showed the expected negative correlation or no correlation between cortisol and prolactin associated with males and females in the other patient groups. Both cortisol and prolactin increases are known to represent alternative strategies to cope with stress, and our data point to prolactin being possibly more dominant in Ménière's disease and cortisol in acoustic neuroma. These data provide further evidence for modification of different stress hormones in audiovestibular pathologies, which might provide a valuable diagnostic or prognostic tool in the future.
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For those in the 'watch and wait' status / Stress and AN association
« Last post by mwatto on Today at 03:04:18 am »
Read this today re cortisol 'Stress has been postulated to trigger or contribute to inner ear pathologies but there is little objective evidence. We investigated stress hormones in Ménière's patients and patients with acoustic neuroma. Data were compared with those from a control group of patients with facial spasm. We assayed classic stress hormones including adrenocorticotropic hormone, cortisol, growth hormone and prolactin. We found a strong positive correlation between cortisol and adrenocorticotropic hormone in Ménière patients and patients with acoustic neuroma but no correlation in patients with facial spasm. The data also revealed in female patients with Ménière's disease or with acoustic neuroma an unexpected significant positive correlation between cortisol and prolactin. The data showed the expected negative correlation or no correlation between cortisol and prolactin associated with males and females in the other patient groups. Both cortisol and prolactin increases are known to represent alternative strategies to cope with stress, and our data point to prolactin being possibly more dominant in Ménière's disease and cortisol in acoustic neuroma. These data provide further evidence for modification of different stress hormones in audiovestibular pathologies, which might provide a valuable diagnostic or prognostic tool in the future.'
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For those in the 'watch and wait' status / Re: Aspirin and tumeric?
« Last post by mwatto on September 24, 2022, 07:57:59 pm »
Hi Leigh Ann both turmeric and aspirin are blood thinners so not a good idea. The aspirin research did not show it helped significantly for AN though inflammation is a known cause of growth. Other things people have tried that seem to be backed by science and anecdotes of success here are: Suforaphane, fucoidan, bromelain, turmeric, resveratol, honokial...whatever works on the PAK-1 pathway (Prof Maruto told me this he did research on it). Stress and sleep are also factors. Melatonin is useful and some have had help with nerve pain with herbs, CBD, PEA. As far as I know though there is nothing that conclusively works to get rid of an AN except surgery.
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Facial Issues / Re: Hemifacial Spasms beginning 6 months Post CK in Jan 2022
« Last post by donjehle on September 24, 2022, 06:55:43 pm »
Your continued updates, Dlip246, are very helpful.  Thank you for sharing them.

I'm not a doctor, but I understand that CK can cause swelling of the tumor for a while until it eventually shrinks a bit.  So, I'm hoping this is a temporary situation for you.  The swelling of the tumor is supposed to be a good sign, as I understand it, that the CK is working.  But if the swelling of the tumor touches a nerve, it can cause issues for a while.

Again, thanks for sharing your experience.  It is very invaluable!

Best wishes on your continued recovery!
Don
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Post-Treatment / Re: Seeking Input - Altered ability to taste foods & dry mouth
« Last post by donjehle on September 24, 2022, 06:43:34 pm »
Hi DZ!  Thank you for posting your experience on the forums!

I hope you will also share the rest of your story and your post op recovery with us.  I would love to hear your full story.

I have not had surgery, so I cannot tell you about that part.  However, my initial symptom was burning tongue syndrom (which is not typical for acoustic neuromas, by the way).  The taste of food changed completely.  Most of it was very bland.  I lost my appetite and went from being hungry all the time to trying to take in enough nutrition to survive.  During that time, I lost over 20 lbs. (which was great -- but I wouldn't recommend it for anyone).  So, even though I have not had surgery, our experiences have had some similarities. 

Over time, it seems that the taste of most foods have returned.  So, that might be your experience.  I don't know.  I would love to hear if the taste of some of your foods return in another six months or so.

I haven't had any experience with a lessening of my saliva, so someone else might need to address that.

Again, thank you for posting your experience, DZ.  There are many more people who read the forums than post on them.  So, someone may gain from you sharing your journey as they go through something similar to what you have. 

Best wishes on your continued recovery!
Don
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For those in the 'watch and wait' status / Re: Aspirin and tumeric?
« Last post by donjehle on September 24, 2022, 06:27:07 pm »
Welcome to the ANA Forums, Leighannski!

I'm thrilled that you made your first post here. :)

ppearl214 is correct.  I'm not a physician, and I cannot give any medical advice, nor should I.  We do share our personal experiences which often vary from person to person.  What often is beneficial for one person sometimes does not help others.

So, with that in mind, I will share my understanding with you.  It could be wrong, and I will be the first to admit that I sometimes may misunderstand something.  But what I read, Leighannski, is that there was a lot of initial excitement about the benefits of aspirin for acoustic neuromas.  Unfortunately, with more research and studies, it seems like aspirin (with or without tumeric) proved to not have any significant beneficial effect.  That is my understanding, and I thought I would share it with you.

However, if you want to try aspirin and see if it works for you, that's up to you.  But I don't think even your physician could give you a recommended dosage since the research studies did not prove as effective as some of us had hoped.

Others on the forum could share their personal experience with aspirin and tumeric.  They might also share other options which worked well for them.

Best wishes on your journey!
Don
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Hearing Issues / Re: Hearing aid options
« Last post by donjehle on September 24, 2022, 06:10:02 pm »
What's interesting about these forums is that we all are going through the same journey, and yet, we all have different experiences.  What works for one person does not work for someone else.  And I'm okay with that.  But I still gain encouragement and inspiration from those who post here, including you, Donna!  Thank you for sharing your experience with us!
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For those in the 'watch and wait' status / Re: Aspirin and tumeric?
« Last post by ppearl214 on September 24, 2022, 04:39:54 am »
Hello LeighAnn and welcome.

Please note that we are not doctors and you should consult with your physician regarding any medication/supplements.  Others here may be able to share their personal experiences and, yet, we are not qualified to answer medication dosage questions. I hope this helps.  Wishing you well.
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Post-Treatment / Seeking Input - Altered ability to taste foods & dry mouth
« Last post by DZ on September 23, 2022, 07:35:57 pm »
Hi all -

I am 5 weeks post op and was wondering whether others had/have these issues and whether they resolved.  One issue is that my ability to taste foods seems to be altered. I can taste some sweet foods - like jellies, sugar, fruit and some spices/oils but most foods taste very bland or have no real taste.  I know the nerve (s) supplying the tongue were impacted during surgery. I also dont have much of an appetite anymore. I have gone from being hungry all the time (preop) to making sure I eat an adequate amount of food daily. The second issue has to do with the amount of saliva I am producing when I eat. I find breads and other dry foods stick to the inside of my mouth and I need to drink a lot in order to eat and swallow some foods.  Did/Does anyone have these issues? And did they resolve to your satisfaction? How long did it take? Thanks in advance!!  DZ
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Post-Treatment / Re: 3 weeks Post Translab - Schwartz & Friedman
« Last post by DZ on September 23, 2022, 07:08:27 pm »
Hey, Don & GirlDad -
I really love this website and forum! The sharing of experiences and suggestions makes me feel less alone in this journey in addition to the hard outcomes of major decisions, like treatment choice and then who to be treated by and what questions I should be asking!!

Girldad, I am so glad you received my feedback (and happy!) because your story really touched me.  I am generally feeling very well, doing my PT exercises (20+ minutes 3-4X/day) and have gone back to the gym (spinning/weight lifting) and running a bit now.  I am so out of shape but determined to get back the muscle mass I have lost.  My appetite has really not returned which isn't necessarily a bad thing!, but my ability to taste is definitely altered.  Most food tastes like paste/nothing.  And I find I am producing less saliva when I am eating.  I will start a separate post to ask if others have had these issues and whether they resolved. 

And thanks for the info the BAHA. Good to hear you love it! I am still exploring options!
Donna
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