At what point does something have to be decided?

[bethtretrault]

So the tumor went from 5 mm to 7 mm and is growing out of the IAC. Decision time. I am talking with Dr. Coelho and Dr. Broaddus at MCV in Richmond VA. Looking at conventional surgery because of pre-existing dizziness and balance issues. Any advice? Any experience with MCV?

[Janey]

Hi Oak 1971, MG, and Cheryl R,
Thank you for your responses to my earlier post.  I had my 6 month MRI on May 4, and much
to my dismay, it had grown a few mm's (like yours MG).  It is now around 9mm to 1.1 cm's. 
I am scheduled for another MRI  in September.   I so want to remain W & W, but I think I'm leaning
toward GK if it comes to having to take action.  Prayers for your surgery, Oak1971, and prayers for
your situation, MG.  By the way, I have lost most of the hearing in my left ear, have some mild
balance issues, and tinnitus that I can sometimes ignore. 

[Janey]

Hi Beth,
So sorry your tumor had shown growth.  I pray you will be comfortable with your treatment decision.
Let us know what your dr.s recommend and what you decide.  Best of luck to you.

[MG]

Hi Janey,

Sounds like you're in the same boat. I have an appointment with Dr. Antonelli from Gainesville on June 25th. Hope to get some answers and see if I should also go with GK. I just want to take my time to decide because I don't do well under stress at all. Sending prayers.

MG

[Janey]

Hi MG,
Best of luck to you at your appointment.  Keep us informed of what you decide. 

[MG]

Janey,
Thanks. Will let you all know. 

[bethtretrault]

Hey all-have decided on surgery with retrosigmoid approach to be done at MCV in Richmond Va. I think I actually feel better now that I have made a decision. Let me know how you all are doing and what you decide.

[Janey]

Very best of luck to you,Beth.  Keep us informed!

[MG]

Hi Everyone,

My doctor says I will need to have radiation within the year so I will start to look for the best solution for me. I think I might lean towards Cyber Knife. Has anyone looked into this type of radiation treatment?Would appreciate your input on the subject.

Good luck to you Beth!

MG

[keithmac]

Hi Everyone,

My doctor says I will need to have radiation within the year so I will start to look for the best solution for me. I think I might lean towards Cyber Knife. Has anyone looked into this type of radiation treatment?Would appreciate your input on the subject.

Good luck to you Beth!

MG

I attended an A.N. open day at a local (UK) hospital last year with a visit to its new CK unit and a meeting with the team who uses it.  I was impressed by what I heard but I might have been equally impressed if I'd visited a GK facility.  From what I've read in the past the potential outcomes look very similar. 

[Janey]

Hi MG,
What is your reasoning for choosing CK over GK?  Anxious to know, as I possibly will have to make
a similar decision within a few months.

[MG]

Hi Janey,

To tell you the truth, I was trying to avoid having pins in my head. I am a big chicken!    I am just so confused on what to do. I just want to do what will be the best outcome but who knows that?? Have you done a lot of research on Gamma? If you have let me know and I will do the same.

P.S. Thank you Keithmac.

Good luck!
MG

[keithmac]

Hi Janey,

To tell you the truth, I was trying to avoid having pins in my head. I am a big chicken!    I am just so confused on what to do. I just want to do what will be the best outcome but who knows that?? Have you done a lot of research on Gamma? If you have let me know and I will do the same.

P.S. Thank you Keithmac.

Good luck!
MG

I don't know how much 'a lot' of research is but I feel that I've read enough from the medics and, perhaps more importantly, from those who've had GK or CK. I hope I've managed to get a reasonable view of the overall situation but there's a lot to take on board so I do understand how you might feel.  There is simply no way to know which course of action would turn out best.  What happens here in the UK (my summer home) is usually different than in the USA from the accounts I've read and from our American snowbird friends.

In the US folk seem much more able and willing to seek out the best doctors even if it means treatment in a different county or a distant state.  Here we have less choice as there are fewer treatment centers anyway.  As so often the American healthcare system looks better than ours - provided you have insurance or the wherewithall to pay yourself.  But maybe it's just a case of the grass looking greener on the other side?

Good luck and I'll be tracking your postings with interest.

best, Keith

[NYLady]

Hi MG,

Just thought I would add my 2 cents....

I chose Gamma Knife because it was a one time treatment.  Honestly, I had no problem with the attachment of the head frame (see my account of experience in Radiation Therapy).  If that is the only issue for you, please revisit looking into Gamma Knife.  For me, hearing was poor prior to treatment and I have lost just about all of it in that ear now.  I believe chances to avoid hearing loss are a bit better with CK, but also dependent on where the tumor is located.  Nothing comes with guarantees my friend.  I just wanted it to be done and it would have been difficult for me to make multiple trips for treatment.  I am not at all sorry I chose this route for my treatment, and once you decide, you will feel much better.  Ultimately MG, listen to your gut and act on your own feelings and you will have made the right choice.  Best to you....

NYL

[Janey]

Hi MG,
I have not done a ton of research on GK vs CK.  Like NYLady, I like the idea of a one-time treatment.
I am in WV, and if I have to have treatment, it will most likely be somewhere else.  The somewhere
elses that I have looked into (Wake Forest, Duke, UPMC) seem to advertise GK the most.
I know it is such a confusing issue.  Just when I'm sure I'll go with GK, I start thinking about the
possibility of surgical removal!!  I just wish we all knew what treatment would be the best for each of
us!