Cyberknife info needed for newbies.....

[ppearl214]

This is a great thread for CK information.

I'm trying to see if CK is a better option than surgery for me.  I have few questions that someone may be able to answer.

1.  In regard to long term status, do we know of someone who had CK at the earliest time when CK was just introduced and their current statuses?
2.  Currently my symptoms include:  some loss of balance, facial switchings, tinnitus and loss of lots of hearing on the left ear.  With CK, will these symptoms go away and how long will that happen?  I think I'm willing to accept the loss of hearing but the facial numbness and twitching are hard to take.

I'll be talking to Dr. Chang soon but would like to find out from yourself since you've experienced them yourselves.

Thanks very much.

Hi bham,

1.  CK has been around for over 10 years.....Mark, who is on this site, is 6 yrs post CK (the longest term CK patient that I know).  He is a tremendous help to many here, esp. to discuss CK long term.  He is very well versed in many AN treatment protocols and is a true backbone to many here that seek out CK information *accepts money behind back from Mark for the kind words noted*   You can see many of his posts here where he shares his long term experience with his AN/CK journey. 
2.  Many of the symptoms may wax/wane.... "individual results may vary", as you know... some note enhanced, some note decreased.  In my case, for the most part, mine decreased but again, everyone is different.

You are in fabulous hands with Dr. Chang, if this is the route you decide... he's top notch and one of the best.....

Hang in there during this decision making time... we're here to help you through it, regardless of what you decide. We're AN'ers and we're here for you!

Phyl

[sgerrard]

Hi again bpham.

 I am reminded of my first post on this forum, which I made after browsing quite a few of the other posts. One of my questions was:

"It seems to me that the treatments address the medical concerns, mainly not having a neuroma grow enough to squish the brain stem or paralyze the face, but are not particularly good at addressing the symptoms, meaning the hearing loss, pressure sensation, tinnitus, etc. The post-treatment experiences reported by many don't sound much better than the symptoms I have now. Is that a fair assessment?"

The answers I got seemed to agree that treatment can stop development of symptoms, but does not often do much to reduce them. I think general fatigue can diminish, and balance issues can be resolved, either by surgery, where the bad balance nerve is cut, or by post treatment therapy to help retrain the brain, or both. People do feel better, but they almost always keep some reminders of their AN.

Although it sounds a little depressing, my impression is that many end up feeling a lot better, and just get used to whatever they wind up with. Once it stops changing around every day, it all becomes more acceptable.

Stick with it, you are getting closer every day...

Steve

[bpham]

Steve.

Will the symptoms get better with time in most cases though and how many percent will get better since the tumor is supposed to shrink right, do we know?

Thanks for the reply.

[ppearl214]

*bump for those recently diagnosed interested in CK info/experiences*

Phyl

[ppearl214]

*bump*

Lots of inquiries lately about CK, so bumping this back up.

Phyl

[Anna7]

Hello, I'm a newbie with a 1.3cm x 8mm x 8mm left sided AN.  I've been so overwhelmed trying to decide which treatment option to go with.  I've seen Dr. Fayad and Dr. Schwartz (neurosurgeon) at the House Ear Clinic.  Although my hearing is perfect, Dr. Schwartz is recommending the translab (and left ear deafness) versus middle fossa as it is less risky to the facial nerve.  His concern is that since I have very poor vision in my right eye he would rather be cautious in order to assure avoidance of facial nerve problems and possible negative effects to my good left eye post surgery.  I've never had surgery and am terrified of it due to another medical problem which doctors have been unable to diagnose.  I am now considering radiation options.

For those of you out there who chose Cyberknife over Gamma Knife, what were the specific factors that swayed you toward Cyberknife?  House does Gamma Knife at Good Samaritan hospital and it would be the most convenient for me in terms of location, but it appears that so many of you who post chose Cyberknife instead.

Stanford seems to be the destination of choice in California for many of you opting for Cyberknife.  There are other centers closer to me in Los Angeles (USC, San Diego).  Wouldn't they have to be competent as well?

Any feedback is much appreciated.  I've been lurking on this website for weeks now and finally had the nerve to post.   

[Mark]

For those of you out there who chose Cyberknife over Gamma Knife, what were the specific factors that swayed you toward Cyberknife?  House does Gamma Knife at Good Samaritan hospital and it would be the most convenient for me in terms of location, but it appears that so many of you who post chose Cyberknife instead.

Stanford seems to be the destination of choice in California for many of you opting for Cyberknife.  There are other centers closer to me in Los Angeles (USC, San Diego).  Wouldn't they have to be competent as well?

Anna,

Both GK and CK are good radiosurgery machine choices. The case for preferring CK generally revolves around 2 issues:

1) CK achieves slightly better accuracy than GK but uses a mask vs. the metal halo that is screwed into the skull with GK

2) Because it doesn't require the halo, CK can do treatment over 3-5 days ( fractions) which generally is reported to improve hearing preservation results ( 75% vs 60-65%)

Stanford is generally preferred because it is where the CK was developed and where the most experienced team is, specific to AN's as well as other issues. However, any practice that has a CK machine goes through extensive machine training at Stanford or one of the other more experienced facilities. additionally most docs moving to CK have used GK for years and have treated a lot of AN's radiosurgically in the past. In the eyes of most radiosurgeons AN's are on the easier side of the scale of most things they treatment plan for. So while I don't know a lot about SD or USC, I would generally be comfortable they would be qualified, but ulitmately you have to feel comfortable with the physcian treating you. If you do decide on GK , I would personally not have it done at HEI as I do not believe they do a lot of them or are particularly focused on that treatment option as opposed  to surgery. At least in 7 years I think I've heard of one person that had GK there.

Mark

[an0806]

Early tomorrow morning, I am going for my 2nd MRI afyer my CyberKnife procedure in January 2007.

I just found out that the valium pills I'll need tomorrow had expired in October of 2007.

I definitely do not have time to ask my doctor to prescribe a new one for me in time for the MRI.

Do you think that valium pills (2mg) are totally useless (or harmful) expired for only 6 months ?

Without the aid of valium pills tomorrow, I do not think I will be able to "survive" the closed chamber effect.

Thank you for your kind attention.

an0806

[leapyrtwins]

Do you think that valium pills (2mg) are totally useless (or harmful) expired for only 6 months ?

an0806

Call your pharmacy - the pharmacist should be able to tell you.

[Anna7]

Mark,

Thank you so much for your reply.  It means so much to me right now.

[ppearl214]

Do you think that valium pills (2mg) are totally useless (or harmful) expired for only 6 months ?

an0806

Call your pharmacy - the pharmacist should be able to tell you.

agreed.  PapaPearl (my dad) is a pharmacist and has shared with me in the past that some pills are still effective (maybe not fully, but still carry some efficacy properties) 6 mos post expiration date, but your local pharmacist can confirm.

Good luck and wishes for a wonderful MRI turnout! Keep that in mind as it may help "curb the edge" of nervousness during the exam.

Anna, welcome!  Glad Mark was able to help chime in with a response for you (he's good about these things) and hoping you are finding the info here that you seek.


Best wishes,
Phyl

[an0806]

leapyrtwins and phyl,

Thanks for your knid word of encouragement. I already feel better !

an0806

[ceeceek]

First off, Happy B Day PPPPPEARL!!
Glad to hear the good news.
I am 6 mos post treatment CK for something similar to an AN.....originally diagonosed as possible AN, then found out later to be similar....but different location etc..
So far my results are excellent!, the tumor is showing signs of death,,,,I have had little to no effects from cyber...I have recently experienced mild hair loss and graying which under normal circumstance would be due to age, but alas, gray hair does not genetically run in my family...strange but true...and it is getting quite thin,,,,I have posted some questions to the Drs on the cyber site, but it may also be due to antibiotics..the Drs do not think at this point that the thinning all over is due to cyber...otherwise I have nothing but good news.
The treatment compared to surgery was a breeze, and I chose cyber for two primary reasons...the general accuracy of the machine and NO HEAD SCREWS.....
Head screws may seem like a minor point, but I had real problems from them due to surgery and did not want to experience it again...when researching the various Stereotactic types of radiation, the cyber was the most effective and least invasive in comparison to the time of treatment and what was involved. It was in fact a no brainer, and so far, I am very happy I went that route. I went to the Palm Beach Fl Center, and overall had a great experience considering the circumstances.
I will certainly keep posting my continued death of the tumor.
Ceeceek

[ppearl214]

ceecee, it twas my bday?!?!     thank you for the belated wishes. Saw your post on the CK board to the drs about the hair loss. As a former (but still licensed cosmetologist), I can share many factors can create the thinning you are experiencing.  Anything from stress, medications, shock to the system, hormonal changes, foods, heat/cold, etc can all wreck havoc with our hair.  Try slight, circular scalp massage in the affected area... heat helps as well... as well as proper diet.  As for the gray... well, I own stock in MissClairol but I'm hoping you don't make me rich in that regard!  hang tough! Phyl

[ceeceek]

Thanks for the advice...I am now thinking it was from antibiotics.....they are very hard on me...the gray..I dont know..hesitate to dye as my hair grows super super fast..not complaining but hate that root line effect.....Unsure why it would go gray...
normally I know at my age.(43), I would already have gray, but for real, it does not typically run in my family till late 80's, so I am hoping temperary....it was my only solice for having very baby fine mouse brown hair my whole life was that it wouldnt go gray..auughhhhhh...t'oh well..and happy b day again..glad you made it..
Seems like your progress is going good how about your other condition? I knew you were going for follow up on that recently but didnt see where you posted....
I have been somewhat unsocial...taking a break from school...trying to get  a new job....yuck....and will start my masters in April..what was I thinking.......
Ceecee