Author Topic: suggestions or recommendations?  (Read 3477 times)

rodneyd

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suggestions or recommendations?
« on: December 20, 2016, 05:57:05 pm »
Hi everyone,

I have had an one cm AN for about 3 years now.  It has been slow growing, and I have managed the symptoms as best I can.  Main symptom is loss of balance.  My wife and I are contemplating a trip to Europe in the spring, but she wants me to have cyberknife radio surgery before we leave on the trip.  My concern is that I may experience a "new norm" following the cyberknife, which may be worse than my symptoms are now.  Then we may not want to signup for this moderately stressful tour (lot's of walking).

I am looking for suggestions or recommendations from anyone that has had cyberknife and had any worsening of symptoms due to the treatment?  Same thing for anyone that has had no change in their symptoms?

I am totally aware that this is my decision, I was just hoping to find out if anyone has had good or bad outcomes from cyberknife and what they would suggest.

Thank you and Merry Christmas to all!

Rod
74year old male, 8.3x7.3x6.5 mm AN on 10-28-13.  MRI on 12-30-13 showed no growth.  Imbalance issues and mild tinnitus.  MRI on July 13, 2014 showed no growth.  Still on W & W and taking baby-aspirin regimen.  MRI in July, 2016 show slow growth (1.1 cm).  MRI on July 24, 2017 was 8.2 x 8.6 x 8 mm!

ANSydney

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Re: suggestions or recommendations?
« Reply #1 on: December 20, 2016, 06:10:01 pm »
Hi Rod,

If you have been observing a 1 cm tumor for 3 years and it has been growing slowly, the next question is do you have significant symptoms and have they been progressing,. If all you have is some hearing loss, I would go on holidays first then seek treatment. Radiosurgery can cause interim swelling of the tumor and I would like to be close to home during this period.

Citiview

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Re: suggestions or recommendations?
« Reply #2 on: December 20, 2016, 06:50:15 pm »
Always, always, always just go on vacation.
Some people lose their hearing a week after radiosurgery, or months, or never. But if you are 73 and a small tumor, why treat it now? Radiosurgery can make balance symptoms worse. You can always treat it later if it grows.
Go have fun!
Just my two cents.

keithmac

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Re: suggestions or recommendations?
« Reply #3 on: December 20, 2016, 10:05:25 pm »
Hi everyone,

I have had an one cm AN for about 3 years now.  It has been slow growing, and I have managed the symptoms as best I can.  Main symptom is loss of balance.  My wife and I are contemplating a trip to Europe in the spring, but she wants me to have cyberknife radio surgery before we leave on the trip.  My concern is that I may experience a "new norm" following the cyberknife, which may be worse than my symptoms are now.  Then we may not want to signup for this moderately stressful tour (lot's of walking).

I am looking for suggestions or recommendations from anyone that has had cyberknife and had any worsening of symptoms due to the treatment?  Same thing for anyone that has had no change in their symptoms?

I am totally aware that this is my decision, I was just hoping to find out if anyone has had good or bad outcomes from cyberknife and what they would suggest.

Thank you and Merry Christmas to all!

Rod

Have you considered the travel insurance aspect of having such treatment before you leave?

keithmac

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Re: suggestions or recommendations?
« Reply #4 on: December 21, 2016, 02:50:53 pm »
Hi everyone,

I have had an one cm AN for about 3 years now.  It has been slow growing, and I have managed the symptoms as best I can.  Main symptom is loss of balance.  My wife and I are contemplating a trip to Europe in the spring, but she wants me to have cyberknife radio surgery before we leave on the trip.  My concern is that I may experience a "new norm" following the cyberknife, which may be worse than my symptoms are now.  Then we may not want to signup for this moderately stressful tour (lot's of walking).

I am looking for suggestions or recommendations from anyone that has had cyberknife and had any worsening of symptoms due to the treatment?  Same thing for anyone that has had no change in their symptoms?

I am totally aware that this is my decision, I was just hoping to find out if anyone has had good or bad outcomes from cyberknife and what they would suggest.

Thank you and Merry Christmas to all!

Rod

Have you considered the travel insurance aspect of having such treatment before you leave?

Hours later, after I posted the above, I realized you North Americans may not face the same requirements to declare all pre-existing conditions when buying travel insurance.  Even if you do buy cover it wouldn't be needed in the UK as our NHS generously spends our taxes - the way it's funded - on treating foreign visitors without charging them!

  I don't know how European countries deal with healthcare provision for tourists but visiting doctors and hospitals is likely to produce a bill.  Even Brits are recommended to buy additional health-cover because reciprocal, free care in our partner EU countries may not be equivalent to what we enjoy in the UK.

To cover me here in the USA I pay an uplift of perhaps 20% on the basic premium to cover me against problems associated with my a.n.  Probably damned good value given the sky-high medical costs here!