A couple of questions while on wait and watch...

[chloes mema]

TW, I know I need to get over this and I will, it's still very new and now that my side effects / reactions from the vestibular tests have gone away I really don't feel much from the AN.  I have tinnitus, hearing loss, & some dizzy moments but I've had all that for so many years before I knew about the AN it's like nothing has changed other than now I know what's causing it all. 

This week I plan to get another CD of my MRI so hopefully I can send the copies off to HEI and Dr. Chang.  Wonder how many CD's the diagnostic center are going to be willing to hand out.  That and the up coming conference should shake me out of my lethargy.

I spoke with an older woman at church who has an AN and she had CK twice (?) at Brandon Hospital (now that's a scary thought - Brandon Hospital) and she said "piece of cake" no issues no problems but I know enough to know every case is totally different. 

My neurosurgeon didn't seem too concerned and my primary doctor made the comment "that at your age 7-12 other things will get you before the AN does".  Now that's helpful.   

Still doing some internet research so I'm not totally ignoring it.   

What I'd really like to find are holistic ways to handle this but I don't think that's going to happen.  Although I have read posts that have given good ideas so I'm ramping up my exercise time at the gym and eating a lot healthier than I use to.  Neither of those options can hurt.

Karen

 

[Mickey]

Hi Karen! I see what your going thru... While W+W I would suggest besides having a good Dr. who your feel confident with, look over the W+W posts for alot of good info...It seems that your going to have alot of time to analyze whats going to be best for yourself. Wishing you the best, Mickey P.S. W+W is a viable option and would suggest you follow alot of whats in the W+W brigade...

[chloes mema]

Mickey, thanks for a good suggestion.  I've been concentrating on replies to my post and unread posts since last visit.  Now I'll throw W & W into the mix. 

Karen

[jugee]

Thanks Jim and Karen for the help.  I will check it out.  BTW Jugee is the PATIENT. not parent=oops.
Gary

[Tumbleweed]

This week I plan to get another CD of my MRI so hopefully I can send the copies off to HEI and Dr. Chang.  Wonder how many CD's the diagnostic center are going to be willing to hand out. 

What I'd really like to find are holistic ways to handle this but I don't think that's going to happen.
Karen

 

Karen, you can also make your own copies of your MRI CD on your PC. I haven't done it in a few years, so my memory is short on details, but I do remember it was easy to do.

Regarding holistic ways to deal with an AN: been there, tried that, didn't work. I have a deep background in natural healing modalities and use Western medicine only as a last resort. I tried an all-natural program to battle my AN before getting CK. It was a miserable failure. Another forumite also tried the same and failed. I do believe (strongly), however, that a natural program can be a very helpful adjunct to CK treatments and can help the body heal and reduce symptoms -- that is, in addition to getting CK.

Here is a link to a post (look halfway down the page) in which I detailed my natural program that failed to keep my AN in check:
http://www.anausa.org/smf/index.php?topic=7090.msg73278#msg73278

This was only the second time in my life that I was unable to heal myself from illness using natural means (the other time was when I had a nasty case of bacterial bronchitis). Because of my past rate of successes (including with serious illnesses such as endocrine imbalance), I was quite stunned when I realized my program had not helped slow my AN's growth at all.

My advice is to be as healthy as you possibly can be (because it will reduce the severity of your symptoms and strengthen you for radiotherapy or surgery), but do get your treatment when the time is right. There is, unfortunately, no natural cure for an AN. At least none that I know of.

Best wishes,
TW

[chloes mema]

Thanks Jim and Karen for the help.  I will check it out.  BTW Jugee is the PATIENT. not parent=oops.
Gary

Gary sorry but had to chuckle at your BTW.   
Did you have success in looking up the conference at Moffitt in a couple of weeks?

TW - my husband mentioned that about making my own CD's but I told him we don't have a CD burner so I didn't think it would work.  If I can't get more from the diagnostic center I'll take it to where I use to work and have some one make copies for me.  Where there's a will there's a way!

Interesting about the holistic healing not working but doesn't surprise after reading the entire tips for healthy AN (or whatever the title is).  But I like your advice about being as healthy as I can.  Funny I've been wanting to improve my health but I didn't want such a medical reason to make me do it.

Thanks for the link, haven't "clicked" over there yet but will when I'm done.  Still learning my way around the forum site.

Karen

[chloes mema]

TW-just finished reading the entire thread of the holistic approach.  Shame it doesn't work.  I was wondering if I should stay out of the sauna since high heat is often bad for some bodily problems.  Have you heard anything about that in refernce to AN?

Karen

[leapyrtwins]

Jan & TW thanks for the info.  I'm embarrassed to say that I just want to take the ostrich approach and hope it all goes away on its own.  Since I've never had any real medical problems and no surgeries

This is perfectly normal; don't be embarrassed 

[chloes mema]

Well, I either haven't figured out or don't understand why "your" doctor just doesn't say, "this is how we're going to treat your specific case, you will have (fill in the blank) procedure."  It just dumbfounds me but I'll get over it with the help of the forum.   

Karen

[Tumbleweed]

I was wondering if I should stay out of the sauna since high heat is often bad for some bodily problems.  Have you heard anything about that in refernce to AN?

Karen

I've never heard anything about this. I doubt it makes any difference, positive or negative, but who knows?

Best wishes,
TW

[leapyrtwins]

Well, I either haven't figured out or don't understand why "your" doctor just doesn't say, "this is how we're going to treat your specific case, you will have (fill in the blank) procedure."  It just dumbfounds me but I'll get over it with the help of the forum.   

Karen

In my case, since I had options (radiation vs surgery) my neurotologist made me decide, but I do know there have been times when he specifically told someone that radiation was the way to go or that surgery was their best bet.

You have to remember that with either treatment there are no guarantees.  Your doc can't say with 100% certainty that you will or will not have specific side-effects, that your entire tumor will be removed, that radiation will absolutely kill your tumor, etc.  Medicine isn't an exact science and doctors aren't God (although some think they are  )

Jan

[chloes mema]

Jan you're right there are no guarantees.  Since my neurosurgeon didn't really mention either surgery or radiation at this time I guess he's waiting (watching & waiting) to see what the next MRI shows.    I'll just keep reading the posts and posting my comments.   

Karen