article about CK

[pjb]

Derek
On another subject I wonder if you can refer me to your information as to how you self reduced your tumor.... I am innately curious.
Sharon

Hi Sharon...

In brief (and apologies to the mods for this thread going off-topic) I personally have not self-reduced the AN, rather 'it' has reduced in size periodically since diagnosis over 10 years ago.

The sticky thread 'Top Tips For The Watch & Wait Brigade! within the 'Watch & Wait' sub forum contains many hints and tips such as maintaining a good diet, regular exercise, sufficient water intake and a general healthy lifestyle. This, together with regular professional medical guidance and MRI scans and the most important factor of developing a positive mindset that I am in total control of the AN and not 'it being in control of me, in my opinion, have all been a successful strategy for me.

Regards

Derek

Kudos to you Derek with your strategy at least it is not something that is going to harm you like so many medications with there side effects and it is because of you, Mike and several others I am also starting to maintain a healthy lifestyle and so far the residual that was left has not grown and if comments and lifestyles with the W & W have helped mine that is okay with me continue to emphasize there are other choices besides, surgery, radiation as long as the AN's are relatively small and it appears the older we get the slower they grow as well the mind has more control than what we give it credit for with a positive outlook many things can happen and you are proof of that.....

Best Wishes,

[chloes mema]

To throw my 2 cents worth into the pot. 

I'm glad I had my CK before ObamaCare because I suspect that at my age and the fact that AN's are suppose to be slow growers (which mine was not) I might not be able to get a procedure done.

Moving right along to the cost factor.  My first follow up MRI after my CK is scheduled for September.  The script I got for the MRI says "with out contrast" so I sent an email to the doctor's office through the patient portal stating that I understand that the MRI is much better if it's done with contrast.  The doctor replied that with contrast takes longer, cost more, and isn't any more beneficial now that they know I have an AN.  So there you go...

Karen

[LOIS]

I know what you are talking about with this obamacare crap.  Seems they set an age limit as to if and how you will be treated.  Had mine removed 4 years ago at age 56, cause it was next to the brain stem was told surgery was my only option as ck could fry the brainstem also.  Now.............I'm told with possible regrowth all of a sudden ck or radiation would be ok even though it is again next to the brainstem.  Funny, guess since I'm now 60, time to be put out to pasture, here come the death squads.  Its now ok to fry my brain?  If it does turn out to be a re-growth have made up my mind not to do anything and hope this idiot sitting in our countrys white house is gone after elections, of course thats assuming he doesnt have dead people, illegals and felons voting for him again!

[ppearl214]

Its now ok to fry my brain?

#1.  No form of AN radiation treatment "fries" the brain. I'd like to put a stop to this comment as it is far from accurate. Today's AN radiation treatments are highly targeted beams, maintain VERY high success rates in the treatments in AN, may cause less post-treatment issues then surgical procedures and certainly do not "fry" the brain.  Enough discussion on this one.  Very irked that any treating professional would note this.

#2.  As we know this is a highly passionate discussion, if the political aspect of this discussion would like to continue, I highly recommend you all do so in the "AN Community" forum.  Since this is the "Radiation/Radiosurgery" forum, would like to keep the discussion about CK offering in the UK on track.  Should you all feel the need to further discuss UK/US political aspects of healthcare, I encourage one of you to start a thread in AN Community where you all can discuss freely, not as moderated (but still watched) where you can have fun with this discussion. 

Thanks folks.
Phyl

[JWW]

THANK YOU Phyl!!!

[JWW]

When do you start to take the steroids for radiosurgery?

JW

[JWW]

Did any of you guys/gals take the steroids starting the day before the GK/CK/FRS or the morning of the procedure? or after the procedure is over for a few days?

Is one way better than the other to reduce symptoms?

JW

[PaulW]

With regard to steroids I believe some centres give you steroids before hand and afterwards.
Some centres give you none at all.
Some give you steroids afterwards only, and others only if you have problems.
There is no consensus on this.

There is a debate as to whether taking steroids straight after radiosurgery changes the long term outcome for AN's. Where I went they did not prescribe steroids which is quite common in Europe.

I did take Prednisilone 5 months ago when my hearing diminished overnight.. My hearing did come back..
Was it the steroids??? Steroids for sudden hearing loss is commonly prescribed.




 

[ppearl214]

With Paul on this one.

I was prescribed Decadron (I lovingly refer to it as Decacrap, due to side affects) immediately post-CK for a couple of weeks to keep potential edema/swelling in check.  Like Paul, I did have to take steroids (Medrol Dosepak) months down the road when I started to have minor diminished hearing issues, which, post-steroids, did calm down.  There is always the potential of tumor swelling post-radiation and steroids can be prescribed to help keep the swelling to a minimum.  Short term side affects from steroids stink but the long term benefits (IMO) outweigh it.  As Paul noted, not all treating locations/physicians prescribe it but they may.  Each one has their own protocol.  Not always ommon but not unusual either.

Hope this helps.
Phyl

[rupert]

When do you start to take the steroids for radiosurgery?

JW

I never had to take any steroids with my GK,  before or after treatment.   Just a few advil now and then.  They are not always needed.