cyberknife post surgery 5 yrs ago regrowth 2 mm

[rayden1]

Hi
can anyone help have to have 1 to 3 sessions of cyberknife next month due to regrowth. Have to go to uk for this procedure. What should I expct side effects. Am scared but would do anything to avoid more brain surgery.

Thank you

Ann X

[mindyandy]

Ann
Very sorry to hear about your regrowth. I had 3 sessions of CK done 4 years ago. Very easy procedure to go thru. You just lay there still with a mask on your face. I had no side effects right away. 3 months afterwards is when I started to feel fullness in my ear. I had swelling so I took decadron aka decacrap. This helped. I had more symptoms about 1 year out with pressure and fullness. I can honestly say that I had a lot of minor strange sensations since.
You can listen to music and relax during the procdure.

I hope you keep us posted.
Mindy

[rayden1]

Hi Mindy
.
Thanks so much for your response. Feel less nervous now and best of luck to you. You are very courageous and will be fine.

Ann X

[PaulW]

Hi Ann,
The good part about surgery is that you are already SSD and have probably had your balance nerve cut too.
When they remove the tumour from the IAC they cut off the top of the IAC, so you dont have an IAC really either.

When it comes to radiation this is all good news...
You probably can't get any more deaf or dizzy or more tinnitus, because the nerves are gone. The fullness and pressure feeling comes from the tumour squashing the facial nerve in the IAC from swelling. But as you dont have an IAC any more you will probably miss out on that too.

Yes there is a very small chance of facial nerve problems normally temporary, but as you probably only have a small tumour at this stage they will only need a small amount of radiation to zap it. So chances of complications are greatly reduced.

Mostly..have a good long chat with your treating doctors.

I found the Cyberknife process easy.... Yes I was apprehensive.. but really in may ways it was easier than an MRI, other than the thought of having radiation going through your head. 

Hopefully all goes well for you and never stop asking questions.

[ppearl214]

I had swelling so I took decadron aka decacrap.

Ah, Decacrap... the good ole' days!

Hi Ann

My 6 yr ANniversary is fast approaching (beginning of April) and what has been shared is pretty spot on.   Not sure which location in the UK you are going (Harley St or ?) but you are in good hands. Many of us here that have had positive results with CK........ as with any AN treatment (surgery or radio), good outcomes and some not. 

Mindy and Paul have pretty well noted what I would note for the treatment process. I can share that each day, after treatment, I went to lunch with friends, worked from home (I was already set up to telecommute long before my treatment), took naps, walked my dog, etc.  There were times that fatigue set in (esp. within the first 9 mos).  Sometimes enhanced balance or hearing issues. I informed my CK team, who put me on steroids ie: Decadron (Decacrap).  Watch out for the constipation from decacrap (hence, it's pet name!).  The steroids helped to keep any post-radio edema/swelling in check and now..... for me.... I sit here, almost 6 yrs later... still hanging around these forums when all honesty, I could just move on in life..... but, trying to give back when there were so many there for me when I was much like you... asking these questions, nervous re: upcoming treatment... dealing with the "unknown".  Know that you have chosen a proven choice for AN treatments with a high success rate and here's wishes for wellness to you!

Honesty.... I slept through my treatments.  40 mins (I hear the upgrades have made the treatments shorter now!) with my own music brought in, piped into the room for me to tap my feet along.  You feel nothing... you hear the "whir" of the robot moving... and look for the "eye"   When you see it, you will know for what I speak.

Good luck/best wishes for your treatment. Please  keep us updated as to how you are doing. Know we are here to cheer you on!

Cheers!
Phyl

[rayden1]

Hi

Thank you all for your replies. Phyl I am going to Harley St.

Ann X

[ppearl214]

Phyl I am going to Harley St.

Ann, you are in great hands there! Best wishes!

Cheers!
Phyl

[Tumbleweed]

Hi, Ann:

CK should be a cakewalk compared to surgery, but you'll probably have some side effects nevertheless. It's likely you'll have fatigue soon or immediately after the procedure. Any symptoms you currently have might become exacerbated. So, for example, if you're dizzy going into treatment, your dizziness might worsen a bit, if only temporarily (possibly for several months). A lot of people seem to have problems about 3 to 4 months post-CK. For me, it was hyperacusis (distorted sound and heightened sensitivity to loud noise) that lasted about a week, along with a little bit of apparently permanent hearing loss.

Some people never feel any side effects from CK, though.

Of the people who do get significant side effects, my observations from reading this forum is they usually start to rebound and feel way better beginning at about month 6 or possibly as late as around month 14 (a little over a year) following CK.

As for the procedure itself, I think you'll find my post at the following link helpful:
http://anausa.org/smf/index.php?topic=6910.0
There, I recount my experiences with getting CK.

Best wishes,
TW

[Richard_T]

Hi Ann,

The best part of CK is that the treatment process is a cakewalk.  Tumbleweed's posts on CK are very helpful.  Take a look at them.  I also offer my serial posts as follows:

http://www.anausa.org/smf/index.php?topic=16505.0

You can find my subsequent days listed.

I wish you good luck!

Richard