acoustic neuroma and gamma knife

[debisda1]

Hi there.  I was recently diagnosed with an acoustic neuroma in right ear.  Going for consult to discuss gamma knife radiation at Univ. of Va.  Been researching on-line and watching the videos on getting prepared.  Pretty scary stuff to me.  Any helpful hints that anyone could throw at me about the gamma knife (if you have had it done already?) I hear that there is swelling afterwards and a few side effects?  The head brace mechanism looks painful too ....  HELP.......       debisda1

[lmurray69]

 I had the gamma knife and it isnt as bad as it seems, I have a bad back so laying there till they get the correct ajustments was the worst..the head frame was not bad they give you a iv and put meds in it to help. believe me it wasnt that bad..Your nervise because you dont know what is going to happen. but they do a frame on the head then they took me down and did a mri again to see where to shoot the radiation. you will feel nothing. its like you lay there and they move you around actually its the table that you are on.. and then they tell you to lay still. there is a nurse there to talk to. They will play music if you want and its over before you know it.. any ? email me...They told me it will take 18 month before you will know anything.. I have headaches but had them before and the dizzyness. no hair loss.I had one shot . did they say how many treatments you will have..they are all different..

[ellenvig]

I just had Gamma Knife done this past Friday.  Cehck out http://anausa.org/forum/index.php?topic=2035.0 .  Today I am feeling much better.  I was still very nauseous in the morning so got a prescription for decadron.  Now I'm feeling like I was pre-radiation, which is good.

Ellen

[lmurray69]

 Ellen you look like you did great..how amny times did you do this once..?

[ellenvig]

lmurray69: Yup, one-shot deal (17 times in the machine, but all in one sitting).  Dr. Noren does have a fractionated protocol which he says ups the chances of hearing preservation from 75% to 85%, but it requires being in the hospital with the head frame on for 5 days!  After having it on for only 1 day, I can't imagine how anyone could survive so long with that on.  I felt SO much better when it came off!!

[michael]

Debista1,
I had GK 4/2004. My situation - 11 MM AN left ear, slight hearing loss, no other symptoms. After talking with and visiting several surgeons, ENT's and radiation oncologist, I felt the GK was right for me and my situation. So far I believe I made the right decision. 18 month MRI showed a slight shrinkage and all continues to appear dead in tumor.
 I drove to Winston Salem(Bowman Gray) the evening before GK, went in for my frame fitting and MRI at about 7:00 AM. The placement of the frame was no fun, novicane shots into my head but certainly not unbearable. I had no meds before and just sat there as if having a root canal. MRI was quicker than most as they knew exactly what they were looking for and then had a wait for my turn in the GK. Had to drink my coffee through a straw. Not my favorite way to have my morning coffee!
I had a total of three runs through the GK, piped in music if I wanted it but it was very quick for me, 12 -14 minutes total radiation time. Removed frame and went home in time to see my kids coming in from school at 3:00. Went to meetings that night with band aids on my forehead and flew to Colorado the next moring for several days of meetings and had a wonderful trip. I felt some dizzyness during the next 6 months but it was very slight, enough to make me not want to get out on my bike in traffic but nothing worse.
I feel truly blessed, all is well.
Let me know if you ever want to talk, I know every situation is different and you need to be the "captain of your ship" but it is nice to talk with those that have gone before.

Take care,

Michael

[Derek]

Hi Michael...

Congrats on your successful journey to date via the GK route. Your post was very informative and will help and instill confidence in those (including myself) who are presently contemplating GK as their future ultimate treatment option...if and when decision time eventually arrives!

Regards

Derek

[kat]

Hi Michael

Great to hear that your GK has worked ! That is just what all of us post GK ANers want to hear . I am going to have my next MRI
scan on the 15th and allthough I have no reason to expect bad news I am getting a bit nervous and hope for some signs that the tumour is shrinking . Because my MRI is so near to Christmas I do not know when I will have the appointment to find out the results .

Best regards Kat   

[Palace]

 

Regarding swelling.....you might want to look at my experience on swelling.  My tumor is/was rather large, too.  I have another idea about the swelling issue that I'm about to post.  I'm one week today, out of Cyberknife.  (like Gammaknife)

You are in good hands with us on this forum to walk you through this.

I'm not as experienced as the rest of the group as, I'm only 7 days out of Stanford.




Hugs,



Palace

[GM]

I too had GK at UVA...I was very pleased with my results.  The head frame isn't really a big deal.  They sit you up....give you some happy juice...and then you wake back up and it's on.       

It is NORMAL to have some swelling over a 2 year period after GK, mine swelled from 1.8cm to 2.1cm...no real complications.  Congrats on making the decision...truely the hardest part of this whole experience.

I have kept usable hearing in my AN (left) ear.  I had my treatment in 2003 and...thank God...my tumor is still stable at 2.1cm.

I hope this helped and gave you some comfort.

Gary

[saralynn143]

I'm a little confused . . . why is this post from 2006 being reopened?

Sara

[saralynn143]

Just looked at HelenJames' profile. All three posts are worded exactly the same and open older posts, which were on topic to begin with

[GM]

Wow...didn't notice that...     Knock...knock...knock...any moderators out there? 

[Sue]

You can go to my blog and read my story about my GK if you want.  It's at the bottom with my signature.  Hang in there.

Sue in Vancouver, USA