CyberKnife Treatment Journal (Stanford)

[MaryEBS]

Hello Bobette!

So nice to hear things are going well for you.  I haven't been on this site for a while and almost missed your update. 

I am almost at 3 months now and have similar issues to yours balance issues, pressure, fatigue and tinnitus.  I recently made the decision to switch doctors because I don't think my doctor really listens to what I say.  I did the research and actually found a local doctor that did a fellowship at House Ear Institute and everything I hear about him is positive so I will be following up at 3+ months on the 26th with him.  I'm anxious to know what the next MRI will bring.

Stay well and be happy and continue looking forward.

Mary

[Bobette]

Hello Everyone!

Well it has been 3 months since my CyberKnife!  I am really looking forward to getting my MRI in January to see the damage to this tumor.

Things have been going very well.  I still get tired in the early evening but I am pretty active during the day.  I still have the constant tinnitus and I sometimes get a feeling of pressure in my right ear.  One day last week my right cheek felt numb like I had been to the dentist.  I just massaged it a bit over a hour's time and it went away. 

As for hearing, my right ear seems pretty useless most of the time.  I do find that in noisy rooms my hearing is shot altogether, even though my hearing is normal in my left ear.  In church, when they are playing the worship music, I can seem to hear it out of my right ear.  It would be wonderful if I can get a hearing aid in the future.

I met a lady who had a malignant brain tumor inbedded deep in her brain. She had Gamma Knife about five years ago and it was totally successful.  She is singing the praises of Gamma Knife to anyone who will listen.  As soon as I get my good report in January, I will be doing the same for CyberKnife!  Stanford has been wonderful.

Hope you all doing well.

Bobette

[skipg]

Bobette,
Thanks for the report and thank you God for the continued success story. I am in my 2nd week of PT. No not physical therapy, but proton treatments. God is good and all is well.
Skip

[Jim Scott]

Bobbette ~

Appreciate your very encouraging update.  May things continue to go well for you so you can sing your own praises of CyberKnife! 

Jim

[doglvr727]

Thank you so much for the posts here. I just found out that I have to have cyberknife after having surgery 2 years ago to remove my tumor.. I was shocked when the drs told me that the piece they left in there had started to grow after just 2 years... Reading the posts here have really helped me to relax about this. I am really hoping that after cyberknife that I will no longer have facial paralysis and this is it.. the piece of tumor left is less than a cm so I am hoping to have no issues.
THis forum is the best!! It has helped me TREMENDOUSLY over the past 2 years.
Keep positive everyone..

[Bobette]

Good luck to you doglvr!  I am also shocked to hear this news, I will be praying for you.  CyberKnife was a piece of cake.  Like I have said in my previous posts - if this is successful (which they tell me it will be) I will feel like I experienced a true miracle. 

Just as an update - I am feeling great!  My energy is back and there are alot of days I don't even think about my AN at all! 

I just attended one of our support group meetings in San Francisco last week and an audiologist gave an outstanding lecture on the hearing options available to us SSD or almost SSD people.  I am very encouraged by all of this and am looking forward to seeing what I can do to eliminate the frustration of being in noisy, crowded rooms and not be able to hear anything!

My best wishes to you and everyone here at the forum.

Bobette

[PaulW]

Hi Bobette,
I remember getting to the 6 month mark getting my MRI and expecting to see early signs of death in a darkened blob.
So was quite disappointed to see a significantly bigger blob and no darkening or change whatsoever in its consistancy.
At two years its now shrinking... but still no change in texture.

So what does it all mean?
The experts tell me absolutely nothing, necrosis, no necrosis, swelling, no swelling.

As long as it has reached its maximum size at 2 years, its a successful treatment.

So don't be in anyway disheartened like I was when at 6 months it was bigger and showed no sign of death whatsoever.

As for hearing, you may get lucky.
I had similar problems with noisy environments for many months and greatly diminished hearing.

My hearing was pretty useless post Cyberknife, and had been on a downhill slide for a few months prior.
My hearing improved for 24 months post Cyberknife across all frequencies and almost made it back to my original hearing.

I have since lost some hearing after a bout of sudden hearing loss, but my hearing is still considered within the normal range.
Since the bout of hearing loss in late July my hearing has slowly been returning once again, and is still improving.

So fingers crossed things may improve with your hearing even 27 months out like me.

[Bobette]

Paul, thank you so much for your reply and your encouragement. I am going to print it out and keep it as a reminder of what can happen. They told me my hearing will never come back but I don't believe them. I am already seeing that the tinnitus is starting to get better and I can hear better when that is not raging.

Thank you also for being two years out and continuing to encourage others.  Reminds us that even when this AN isn't controlling our lives anymore that we still need to be here helping others that are behind us in this journey. 

Please keep in touch.

Bobette

[ash]

Hi Bobette,

I had my six month MRI yesterday and after work today went to the post office to overnight the disc. They said Stanford should have it by 12 noon your time tomorrow but not sure when they will get to it and then get back to me. I'm not sure who you have been dealing with but I have been keeping in touch with Laurie Tupper N.P. with Dr. Soltys' office, she has been great. My tinnitis is still strong and have had some periods with my hearing getting bad. During these six months I have tried to forget about what may be ahead if the CK did not work but it is getting to me now because of already being deaf in the Left ear with the AN in my right. I hope I can sleep until I get that call. It would of been nice to of met you when my wife and I came out there last May.  I'll let you know what happens.

[skipg]

Hi Ashman,
Stay positive. Believing with you for a good report. CK did work and you are still on your road to recovery. I do pray that the bumps we encounter on this journey are small and the curves stay smooth.
Skip

[Bobette]

Amen Skip!

I am praying for you Bill. We are all on an uncertain road - but we did have the best doctors you could ask for - Drs. Soltys and Chang.  Laurie Tupper has been great too. I wish you could attend our support group meetings at Stanford, lots of very happy post-CyberKnife patients.  I'm looking forward to your good report.

Bobette

[ash]

Skip and Bobette,

Nothing went as planned. The disc arrived late, Dr. Chang was on vacation, the holiday and Dr. Solty had a situation. I was very stressed waiting to hear something, I kept wondering if there was a problem. I got the call this Monday from Laurie, Dr. Solty confirmed that the AN grew 1 cm which is normal and the center looks dark which hopefully is the beginning of necrosis! I feel a lot better but now need another MRI in six months. She said I will need MRIs every six months for 2 years and then yearly until needed. I know the news is good but it is not over until it is dead. I do though feel very lucky at this point. Thanks for all your support. It appears everything is going as planned for myself and Bobette you came behind me and had the same procedure with the same doctors. I feel you will have the same outcome as I. Please try to stay calm the closer your MRI date gets. I was ok until the day of my MRI, wine helped. Good luck Bobette, I will be thinking of you, keep in touch.     ASH

[skipg]

Ashman,
That is good news after the difficult start. All things will eventually come together for the good, so I believe. I am 1 week out of proton treatment and all is good. I month check up just before Christmas and then on to the road for a full recovery.
Skip

[grace]

Dear Post CK AN support helpers, I have just been told of my AN and it affects my hearing, some balance issues, and eyes are dry... I am getting more depressed b/c this has already been a tough -v. tough 7 years and now this.. I have gotten good advice from  neuro MD and radio MD  Dr Chozick and Dr Shumway respectively at St Francis, in Hartford CT.... it seemed as if they want me to move along with thsi saying my hearing loss if it grow can get worse and won't come back once it is lost. Is that true? Also I have another opinion that said to go where it is convenient b/c  cyberknife ck is accurate once it gets planned out??? Dr Cook does AN but is faar for me I have some prior issues and maybe it is the balance so I never want to go alone to drive now I am  so different than before I even knew the AN was causing this - I thought it was swimmer's ear or? I always have had headaches and neck pain for over 10 yrs so I was motrying to sek MRI for that.then this  wow - not processing this too well... I hope to get some more answers after mailing out my results w/MRI's to 4 Dr's. hoping they can varify what these 2 have said. Dr. Cook in Lowell,MA said it was not immediate but it doubles in size every 18 months. Mine is sm. 4mmx3mm but is the location that is causing the hearing loss and .. I wonder if ST Francis is as good as Stamford as they have done only 25 of these and have had the CK since 2006 .is that Stamford ,CT? Is CK newer and more improved than Gammaknife? Are the outcomes as successful or are the side effects simular? I am overwhelmed and trying to decide if to go to Yale or Boston but sitting driving kills my neck and back so I hope these MD's can get back to me by phone with their stats I pray they do. Your support Bobbette and everyone so far is a miracle... I taught  mind body conection and now wonder how many others have tried mindfulness and all to help keep our minds from being down...this seems like a lifetime vs a fix it diagnosis...so I am in .... Should I watch and wait- does hearing ever come back once it is lost? thought it didn't but thought I read on our forum it came back with someone??? Hoping and praying for answers & strength, Love and healing to all ....Grace
Are the balnce, hearing and facial nerve tests necessary? as if I go to Yale ,Dr. Michaeledis  wants allthe tests done befere we meet.  Has anyone heard of him as an AN specialist?  does anyone get depressed with thsi ? what helps besides this forum?

[Bobette]

Hi Grace, I'm sorry i didn't see your post until now.  This forum is a great support and comfort, that is for sure.  I found this site also helpful: www.myacoustic.org    There is a 2-1/2 hour interview of Dr. Steven Chang of Stanford about Cyberknife.  It really helped me make my decision about having CyberKnife. 

Life is different since my AN diagnosis, but it is still good.  Keep your chin up and get all the information you can. 

Bobette