Do You Have Questions About Post-Treatment Symptoms?

[fbarbera]

Hey All,

I am interviewing Dr. Steve Chang of Stanford University Medical Center on January 20.  The topic of the interview will be post-treatment symptoms and quality of life issues - specifically, I am hoping to address in detail post-treatment symptoms, why they come up, and how to manage them after CK and surgery.  An audio recording of the interview will be posted on my site (in my signature line) as soon as possible after the interview.

If you have any specific questions you'd like me to ask, please post them in a reply to this message.

This will be my second interview with Dr. Chang.  The first addresses "Choosing a Treatment" issues and Dr. Chang permitted me to publish that interview on my site (in the "Interview with Doctors" section).

Thanks and blessings to all for a healthy joyful New Year.

Francesco

[leapyrtwins]

Francesco -

my only post op symptom - at least my only permanent one is SSD, which I've resolved the best I can with a BAHA.

However, there are so many on the Forum who suffer from headaches.  I'd be curious to hear what Dr. Chang suggests for those who suffer from them.

Jan

[fbarbera]

You got it Jan - will definitely address the topic - it's an important one.  Thank you.

[Larry]

Hi Fransesco,

yeah like Jan, I suffer headaches and i'd like you to ask the following. to clarify, I had middle fossa 1o years ago and suffer chronic headaches every day.

1. From going through the forum, it appears that there is an increase in the number of long term headache sufferers who have had the Middle Fossa surgery. What is so different about that method to the other methods that would cause long term headaches?

cheers


laz

[kenneth_k]

Many people have continued tinnitus - and some even get the phenomenum gaze evoked tinnitus. (it gets worse when you turn your eyes towards the operated side). Why do you get that and can it be cured?

Best regards, Kenneth

[Calgaryjoe]

Hi ,
It would be great if we can find out his own personal record in ck  , IE ( control rate , hearing loss , facial issues , failed ck ) ,
As well if we can find out his earliest patients long term results .
Thank you
Joseph
   

[ppearl214]

Francesco

I have on VERY high authority he is getting ready to release his publication VERY soon.  Care to find out when, what will it include (ei: some of Calgaryjoe's questions, etc) and which publications? I thought it was done with peer-review and inquiring "zapped" minds would LOVE to know!

Phyl

[fbarbera]

Thank you, Larry - I will definitely cover headaches and will ask about Middle Fossa in particular.

Kenneth, I'll explore the tinnitus question as well.

Joseph, those are great suggestions - I will explore. 

Phyllis, I'll see what I can find out. 

Thank you guys!  Please feel free to suggest other specific questions!

Best regards,

Francesco 

[leapyrtwins]

yeah like Jan, I suffer headaches

Laz -

I don't suffer headaches; thankfully.

Francesco, my impression from the Forumites is that those who had retrosigmoid suffer lots of headaches, so when you ask about Mid Fossa please ask about retrosigmoid also.  Might be interesting to find out, in his opinion, if those who had mid fossa suffer from more headaches than those who had retrosigmoid.

Jan

[Melinda Walker]

I had surgery in 2005 and had clean mri reviews.  I am now noticing a new "noise" in my bad ear.  I have 50% hearing, continual balance issues and eyelid drooping.  I thought there was no chance of this tumor returning after this long.  I am due to return to my doctor for new mri in a week.  This noise is like an insect flying close to the ear and perhaps when you have water in the ear.  It come and goes and I cannot determine any particular thing bringing it on.  This is so upsetting.  I do not think I could endure another 12 hour surgery.  Can anyone give any advice?
M. Walker

[C Bourne]

I have a question...

If your doctor sees no growth on a followup MRI (mine is 6 months post-FSR, but this could be at any point), but you are experiencing a flare-up of AN-related symptoms that are at levels higher than anything you've experienced pre or post treatment so far (dizziness, headaches, tinnitus, hearing loss, facial numbness), what is going on?  Is the AN 'thickening' or somehow growing internally that is not visible on the MRI, even though the symptoms indicate nerve involvement?

I did some searches on here and didn't find anything specifically related to this, so if it is answered somewhere, my apologies.

-Cyndi-

[mattsmum]

my radiation oncologist said that the relationship between mri appearance and symptoms is not 'tight' - there can be worsening symptoms due to activity in the tumour without any growth in the an visible on mri, and likewise some people have obvious increase in size with no new symptoms.
the other thing i was told is that some of the symptoms are due to direct effect of the radiation on the nerves at a cellular level (which is not visible), rather than swelling.
i think they do not know really! but they do see it.
best wishes,

vikki