FYI My Treatment Choice

[Warm_in_MN]

My CyberKnife Treatment   (AN 2.2cm x 1.6cm)

This post is for all of you caught in the decision dilemma we all go through. I hope it brings help, hope, and light to your situation.

After much time spent on research and listening to different neurosurgeons opinions, I chose to go with the CyberKnife treatment.  Why did I choose this path?

Meeting with Dr. Eric Nussbaum at the St. Joseph’s CyberKnife department led me to choose what I find to be the most tolerable and least physically invasive method of taking care of my AN.  He’s performed many AN neurosurgeries plus oversees the CyberKnife treatments in the CyberKnife department as well.   So, in his regular practice he deals with both types of treatment.  I had to agree with his recommendation for robotic radiosurgery.  Dr. Kim and Dr. Leslie Nussbaum were extremely helpful, informative, and persuasive towards making my decision. They chose to leave their microsurgery fields and spend their careers with the CyberKnife because they have seen it be so effective for people.
       
The CyberKnife treatment would,
1) give me the best probability (80%) of maintaining my current hearing status, 2) offered the least amount of disruption to my life (I’ve been back at work and full time parenting even on the days during treatments), 3) no physical pain (symptoms) from microsurgery procedures, and 4) a 97% success rate of stopping growth.

In mid November 2009 I had my treatment at the CyberKnife Center at St. Joseph’s Hospital in St. Paul, Minnesota.  My treating physicians were Dr. June Kim and Dr. Leslie Nussbaum. I had 5 days of treatment each lasting one hour and fifteen minutes.  All of the people at St. Joseph’s have been wonderful.  I would recommend them to anyone who wants to have treatment in the Upper Midwest.  Dr. June said that they are having the same success rates as Stanford. 

I was a bit anxious with the treatment.  Lying there still with was the hardest part but definitely manageable.  If you’d like some help, they do offer relaxants.  I brought along a favorite CD which they played for me throughout treatment.  The machine never got too close.  It typically stayed at least a couple feet back.  You don’t feel a thing.   

I did need to take steroids throughout my treatment.  My side effects from them were increased hunger & thirst, lighter sleep, and feeling a bit more agitated (but this could have come from the anxiety around the situation as well).

It’s been 4 weeks now since treatment.  My tinnitus and hearing level seem to have stayed the same (although, I have yet to have a formal hearing test).  I do feel some fatigue and depression about having to go through this ordeal.  It sure made me do a lot of deep thinking.  On occasion when getting out of bed in the morning, I can have some balance issues but they go away with movement.   I have occasional headaches which have seemed to lessen as time goes by.  I take Ibuprofen each morning to help with any possible swelling or pain.  I recently had a cold.  My ear with the AN sounded like a tin can.  But, that went away with the cold.

I’m pacing myself in work, exercising, and trying to eat healthier.  I’ve also found that drinking a lot of water is helpful. 

Overall, I’m happy with my decision to go the radiation route.  I do realize that time can bring on further complications but it will be nothing that I will not be able to deal with effectively.

I’ll report back throughout my recovery.  If anyone has any questions please feel free to send me a message.

Best wishes down the road you choose.   

Bob

I find this prayer so pertinent to life

God,
Grant me the serenity,
To accept the things I cannot change;
The courage, to change the things that I can;
And the wisdom, to know the difference.

[Mickey]

Way to go Bob! Here`s wishing you a speedy recovery and happy holidays. Best wishes Mickey

[sgerrard]

That sounds like it went well. The ear sounding like a tin can when you have a cold sure sounds familiar. Take care and enjoy the holidays!

Steve

[Kate B]

Bob,

All sounds well. It must feel great to learn that the success rates ditto Stanford.

All the best,
Kate

[leapyrtwins]

Bob -

sounds like you made the best treatment choice for you - which is one of the things we always tell newbies to do. 

Thanks for reinforcing this. 

Although I didn't choose radiation, I've always been very happy with my choice - so I know how you feel.

Here's hoping that there's necrosis in your future 

Best,

Jan

[Jim Scott]

Bob ~

Thanks so much for your thoughtful, comprehensive post.  I'm sure it will be encouraging to others facing their own treatment decision.  Obviously, you've done very well, so far, and I'm sure that will continue, even if there are a few 'bumps in the road' (to full recovery).  Your regimen of pacing yourself, exercising and trying to eat healthier is commendable and certainly will have a positive effect on your recovery.  Of course, your positive attitude and choice to be pro-active in both your treatment decision and now, your recovery is probably your greatest asset, in terms of coming through the experience fully functional with a minimum disruption of your normal life.   

This is the kind of outcome we hope to see for every AN patient and I want to personally thank you for having the interest and making the effort to compile and post your experience and your thought process as you dealt with your AN and sought treatment. 

Jim

[Anomar11]

Bob,

Glad you made your decision and it's behind you.  Informative post that will help other.  I'm now one year post CK and glad I made that decision.

Mona

[DR]

Bob,

Thanks so much for a very informative post.  Reading about someone's first-hand experience is far more helpful than simply looking at a brochure.  I'm certain many others facing this situation will find it very useful as well.

- Dennis

[Warm_in_MN]

It's been 2 months now since I've had my treatment at St. Joseph's in St. Paul.  I've recently been experiencing some increased tinnitus, tin can sounding in my ear,  and some loss of hearing.  I think it's because of swelling.  I've been given some anti inflammatory medication (steroids).  I'm having a follow up MRI next week to "check on it".  Let's hope it's just swelling and things will calm down.  I'll keep you all in the loop.  Bob

[sgerrard]

Hi Bob,

My peak "experience" after Cyberknife was right at three months, so it sounds like you are hitting the main bout of swelling. Steroids as needed is just the right thing to do. Don't let swelling on the MRI make you think it is growing. It will be bumpy, but in a few more months you will be over it and start feeling better. Except maybe the tinnitus, that seems to have a mind of its own.

Take care,

Steve