New to Group

[ceeceek]

Hello everyone. First off I want to say thanks for all the helpfull info...I have been recently diagnosed with either a, AN or Meningioma or Facial nerve Schwannoma..funfun...have apt with major specialist in Feb till then just know I have what appears to be benign growth and more than likely an..ANeuroma...my aunt had same thing approx 10yrs ago..my big concern is the whole wait and watch thing, I currently have insurance now, which I may not have later, I am not overly symptomatic and it seems to me why should I wait for this to get worse..it currently causes problems with my ear and headaches but nothing unbearable, but I would prefer to keep it that way...Your site has a lot of info re gammaknife, and that is what I am really pushing for   What I was wondering is,,,,has anyone had fractionated stereotactic radiation treatment...from what I have read, there is less of a chance of facial paralysis etc with this type of treatment and since I am not really having any now, I am of course concerned about causing it because I want to treat said growth proactively...Thanks again
Cecee
.....
2.2cm x2.0x2.8 underneath left temp lobe in clivus region....unusual location for all three possiblities.

[Dealy]

ceeceek-I will be the first to welcome you to this group where no one wants to belong but have no choice. I will try from my perspective to answer your question about FSR. I had FSR this past summer at Johns Hopkins. This was how doctors explained FSR to me. The facial and other nerves can take the hit on radiation and can withstand it better than the hearing nerve. Reason for FSR is because those who are trying to perserve hearing have a better chance. However the downside of FSR is it has a margin of 1 to 2MM that it can be off. Does not sound like much but when you are in a confined space-depending where AN is located that can make a difference. I was given 25 sessions or 5 weeks for a 2.4 by 2.2. CyberKnife is more accurate and can also be fractionated-I believe the protocol is over 5 days-but I am sure others on this group can enlighten you more about Cyberknife which is more precise. After 6 months my AN is showing signs of necrosis but I am an NF2 so sucess is more probable than somone who has just one AN. My suggerstion is too find out what exactly type of AN you have before deciding a treatment course. Then go with a facility that treats these and can give you sucess rates of patients. Depending of where you are located-people on this group can give you names of very good treatment centers and doctors. Best Wishes-and Keep informed . Thanks-Ron.

[ceeceek]

HI thanks for the reply, am trying to get info info info.........appreciate the reply...was under impression that cyber is not as effective as RS...unsure of all the differences ..am speaking to a member now via phone..will update when I know more info...am trying to find place in SW FL that specializes in Stereotactic to see what my options are..have appt Feb 7th with Moffit...am anxiously waiting as I do not think reg surgery is going to be option.
ceecee

[Lorenzo]

HI cecee,

There are a few of us who had CK here. I had my three session at STanford with Drs Chang and Hancock. I didn't have facial paralysis, hearing loss worsened by 5%, tinnitus the same, balance the same. 2 years on AN is dying and shrinking  a little. Success rates I was quoted bakc in 04 were 98% success of control.

By the way, there's a CyberKnife support group forum with two docotors responding to all sorts of questions. One of them is in Florida. They are really helpful.

http://www.cyberknifesupport.org/forum/

Good luck with continued search.

Lorenzo

[Battyp]

See cee cee I knew someone would have the answers I didn't )   

[ppearl214]

Hi ceecee and welcome.  I knew our battyprincess would help (as has Dealy and Lorenzo).  Lorenzo's reference to the Cyberknife Patient support board would probably be (also) very helpful to you.  There are doctors there that treat AN's with both, GammaKnife and Cyberknife. They volunteer their time there to help answer our questions.

In regards to Cyberknife and GammaKnife, I can share with you this:

1.  Gammaknife has been used for over 35 years and has a great track record in treating AN's

2.  Cyberknife has been around for over 10 years and thus far, in the 10 years, the track record is also great

3.  Gammaknife uses a metal head frame to secure the head during treatment.  It is a temporary discomfort (from what I hear, the happy pills work great during it's "application" to the head). It is bolted to the skull. Please know that it is important for the headframe to be calibrated before each use and it's up to us patients to make sure we ask treatment centers about its calibration.   For Cyberknife, use of a plastic mesh mask is used to secure the head in place during treatment.

4.  GammaKnife is a one dose treatment (I have heard of fractionated GK at a couple of facilities but have no background on its effectiveness in the treatment of AN's).  Many find that the 1 dose (day) treatment conforms to their lifestyle and is only a one day option.  Cyberknife is fractionated over a period of (typically) 3-5 days (mine was 5 but I know many that had 3 day). 

5.  Data shows that both, GammaKnife and Cyberknife, are both exceptional choices of radiosurgery for AN's under 3cm in size.  Both are proven in efficacy.

6.  Both forms of radiosurgery pretty close in its accuracy in target hits (approx .87mm for CK, GK just a hint different at just over .87mm).  Accuracy is key in both treatments as you want to make sure you hit the dang thing.

7.  Failure rates in both, GK and CK, are extremely low, based on current data.

8. Side affects run about the same for both forms of treatment. I have heard some note post-GK head issues from where the headframe was anchored, but those issues noted have been minimal (sensitivities, etc in the bolt area).  Hearing preservation has run (typically) within 5-7% of what hearing was at time of treatment.  Some report (for both forms of treatment) balance issues, slight hearing loss, enhanced tinnitus immediately post treatment, but subsides over time.

Overall, this are just brief thoughts on both forms. 

For a good, overall reference/resource for Gammaknife, you can use this link:
http://www.irsa.org/gamma_knife.html

For a good reference resource for  Cyberknife, you can use this link:

www.accuray.com

Well, enough of my rambling, but I hope this helps just a bit.  Please keep an eye in the Radiosurgery forum here on the boards.. ..lots of personal experiences in all forms of radiosurgery noted by many radiosurgery AN patients.

Anyway, welcome... we're here for you

Phyl

[Sue]

Hi Ceecee,

Welcome to our version of "Club Med". I can't add anything to what our lovely Phyl and the others (who are also lovely) have told you.  This is a great place for information and inspiration and a darn good place to vent anger, fear and frustration.  We've all been there, done that.  Good luck with your research and eventual treatment.  Come back here as often as you'd like. There's always somebody here to "talk" to.

Kindest regards,

Sue in Vancouver, USA

[ceeceek]

I just want to say thank you to everyone, I had tried another support group for meningiomas as that was the first diagnosis ( which to me if all are treated the same way, who cares?) but did not receive nearly the amount of info as I have already recieved from your group. No matter what transpires, I wll lovingly continue with this group so that I too may help others have you all have already helped me. The reference site has been great, answered lots of questions, I now have lots of questions for my upcoming appt etc. Thanks to everyone and I will continue to keep everyone updated......also, who is on watch and wait, and what has been your outcome...not an option for me, as if this grows, in the future, I may not have insurance to deal with it, so I want to take care of it now, while my symptoms are minimal, even with the risks.
Ceecee

[Lorenzo]

I was also on 'wait and watch' mode for a year and a bit, until it started growing again, then I had to act before it was too late for CK. It was a good move intially, it gave me the time of exploring other options and find CK, as well as organise my own treatment. Up until then the only optio open to me in this country would have been microsurgery. I wa glad i could go the US!
Keep in touch Ceecee, we're all here to listen and support.
Ciao, Lorenzo

[Obita]

Hi ceeceek:

Welcome!! 

I can't post anything about radiation except, I wish I could have zapped it !! 

Good luck on the 7th, Kathy

[Chris]

The only thing about FSR I wasn't aware of before treatment was the specialists told me it could swell up to 2mm. Mine swelled about 6mm. I already had facial numbness which intensified for a time. It hasn't bothered me too much but I would hate to think how someone would feel if their main symptom was migraine headaches.

[BevM]

Just want to add a little to the other posts.  I was advised by two surgeons to watch and wait.  It took about a year from time of experiencing increasing symtoms, to diagnosis, to treatment.  During that time I did a lot of research.  I decided that there was no point in waiting because symtoms where increasing and size of tumor can reduce your options for treatment. I have significant symtoms for the size of tumor (9.5mm). After doing my research on types of treatment, post treatment issues and insurance considerations, I decided on Cyberknife treatment which I completed at Stanford (near San francisco). I chose Cyberknife  because the treatment is not invasive and has a good success rate, did not require recovery time after treatment (back to work the next day).  Dr. Adler at Stanford is the pioneer of Cyberknife and is also capable of doing the open surgery but recommended the Cyberknife.  None of the treatments come with a guarantee so we each need to weigh the pros and cons of each and decide what we can tolerated.  With Cyberknife (and I think Gamma is the same) we may not know the ultimate degree of success for approximately 18 mos. because the tumor reacts over time to the radiation.   I agree with others who suggest talking with the doctors on the Cyberknife patient support web site as well as this forum to see what our friends here experience before during and after treatment.  This is the place to hear honest and caring suggestions.

Best Wishes to you.

Bev

[Lorenzo]

Bev,
you ahd the exact same reasoning and sequence as myself! Confirms what i was thinking. Glad to read your post. lol It certainly amde sense to mme as an approach, and still does now.  Although my tumour was a bit larger at 2.6 mm.
hope your'e doing well.

[pearchica]

Hey Ceecee- just posted to your other postings but man, Phyl is the BOMB! So accurate in her analysis.  Way to go Phyl and BTW - Stanford has cuties too!  (Hey we need to grab the brass rings in this process and/or see the silver lining....)

Those of us who have had radiation did it for a reason- we wanted to continue on with our lives with no complications from surgery.  For the surgery people- they had a very compelling reason to have a known pathology.

Both ways are valid- Ultimately it's what is best for you and what you are comfortable with.  And yeah with a potetial NF2- our knowledge here is somewhat limited. But keep on with the research- it is exhausting at times but as Bruce posted to me- leave no stone unturned.

Take care, keep up the faith- Annie