Still trying to figure out what to do

[doogan]

Hi everyone,
I am still in a watch an wait mode for my facial nerve schwannoma. To recap - i was accidentally diagnosed about a year ago with a facial nerve schwannoma. In sept it was about 2.6 x2.1 and i am have really no symptoms outside of mild ataxia. I am planning on going for another CT soon. I cannot have an MRI due to an ICD

In my last post in Oct, i was after seeing a radiation specialist who recommended IMRT2. I was not sold on that and have really been sitting on it, I guess waiting for some inspiration.....  .  The truth is I really don't know what to do  yet. My symptoms have not really changed much, so thats good - but i don't want to push it either.

I am leaning toward radiation of some sort... and have read alot about each type, however its all very confusing. As you all know the CK websites and Dr's really promote their product, the GK sites and Dr's promote theirs and its tough to determine which is better for me.

So far i have made the follow interpretations. Please coment it these are fair assumptions or if i am way off the mark

Gamma knife -
 - More accurate
 - single more powerful treatment delivered.
 - More proven and the gold standard

CK -

 - Fractionated - multiple less powerful treatments.
 - Less risk to surrounding tissue due to less intense beams.?
 - Accurate, but less accurate than GK

IMRT  -

 - Less accurate, They move more during the treatment
 - developed for use primairly outside of the head
 - Not much research on them that i can find

From what i have been able to read about IMRT ,  I am not sure that it is what i want going into my head.

Between GK And CK - Do both successfully kill the growth?
What is the risk to my brain stem (I believe that it is touching it) ?
What affect will having this radiation have on me (outside of this tumor) . will it cause further problems in years to come..?


IS anyone aware of any sites such as this that focus' more one Facial Schwannoma's ( I am proud to be a member here - it is great for the AN community and also for people such as myself - its frustrating tho - not to be able to get better information on what i have)

For the GK treatment, I am not concerned about a frame being screwed to my head for a day - I have already had my chest cut open for heard surgrey .....

I have read a tremendous amount over the past few months, but its real tough to put it all together. I am just at the point where i think one treatment is the way to go, and then I read something negative about it and i am back to the start again. I feel that selecting the wrong approach could cause a potiential huge problem later in live

Sorry for all of the random thoughts here, I am sure they all have been answered a million times before

I appreciate any comments or opinions


Vinnie

[Walter M]

Hi vinnie,

I would certainly recommend radiation therapy over surgery anytime. In your case however it is important to note that you do not have an acoustric neuroma but a facial one. This IMO is an important factor in determining the treatment of choice.

FSR treatments were invented to reduce the damage to particular the auditory nerve and help in hearing preservation. Since this is probably less applicable to you as the tumor is not affecting the autitory nerve (right?) the reason to do FSR might be less.

The facial nerve preservation rates with GK are excellent with the conversative dosages of approx 12 GY. Facial nerve damage is seldom in this case and if it occurs, mildy and transitient. I don't think that CK or FSR would gain much in this respect.

I just underwent GK last week and from my experience it was the easiest way to deal with my AN (except with the invasice headframe, but certainly was doable).

Good luck,

[Mark]

Hi Vinnie,

Several of your points of GK vs. CK are inaccurate

CK is technically more accurate than GK based on peer reviewed clinical studies, although the difference may not create that much difference in treatment efficacy

GK was the gold standard based on the accuracy aspect for many years, but that could be argued given the first point

There are clearly more studies involving GK results simply because it has been around for more years. However the biology of the treatment is the same for all radiosurgical machines. To say the GK is better because of it's age vs. newer technology machines is a little like saying a P51 Mustang is a better fighter plane than a F16.

GK and CK can both provide a single powerful treatment dose if that's what the patient wants, but the CK can do FSR and GK can't is the difference

The comments about the IMRT machines are basically correct and the biggest difference is the level of accuracy compared to GK / CK , especially in FSR protocols

GK and CK both demonstrate tumor control around 98%

The accuracy of both GK and CK limit the amount of radiation that hits adjacent healthy tissues. A tumor that is "just touching the brainstem" I would not expect to have an issue, but that is for a trained neurosurgeon / radiation oncologist to determine.

The individual beams have the dose of a common X ray and typically there is no impact on any related tissues outside of where the convergence occurs, which is the tumor.

Hope that helps

Mark

[doogan]

Mark - thanks for your detailed Coments and clarifications.  From your response, i now have to ask - what are the real benefits of selecting one above the other ( again apart from the obvivous head frame) They both seem to do the same thing, with similiar approximate accuracy and tumor control

thanks

[doogan]

Hi vinnie,

I would certainly recommend radiation therapy over surgery anytime. In your case however it is important to note that you do not have an acoustric neuroma but a facial one. This IMO is an important factor in determining the treatment of choice.

FSR treatments were invented to reduce the damage to particular the auditory nerve and help in hearing preservation. Since this is probably less applicable to you as the tumor is not affecting the autitory nerve (right?) the reason to do FSR might be less.

The facial nerve preservation rates with GK are excellent with the conversative dosages of approx 12 GY. Facial nerve damage is seldom in this case and if it occurs, mildy and transitient. I don't think that CK or FSR would gain much in this respect.

I just underwent GK last week and from my experience it was the easiest way to deal with my AN (except with the invasice headframe, but certainly was doable).

Good luck,


[/quote

Walter - how are you doing since the treatment. What was your tumor like? where did you have it done..?

thanks

[Mark]

Hi Vinnie,

As far as selecting CK or GK, assuming both are within a reasonable distance and you are equally comfortable with the treatment teams, then I would decide based on the treatment protocol you want

If you want a fractionated treatment , the you would select CK since it is capable of doing it and GK is generally not used that way

If you want a one dose protocol, then either is equally good and the differentiator is whether the head frame with GK bothers you. There are any number of folks on this forum and the opinions of ease or discomfort vary, but clearly can be dealt with. My personal feeling is why subject yourself to a frame process when there is no advantage to doing it. Before CK, the frame was probably worth the discomfort because of GK's superior accuracy. Now that CK matches that level without the frame, I'm not sure why one would go through it, but that's me.

Again the above assume the first two points hold. Confidence in your treatment team is more important than any technical difference in the machines and if one is local and the other involves a lot of time and money to get to, then it may not be worth it. All that being equal, I generally see the CK as a superior machine if given the option

Mark

[ceeceek]

Well, I've got to throw in my two cents...a facial S. patient ( or so we think) as well....from everything I have read, I would choose the ck treatment over gk due to better accuracy, and possibilty of less surrounding tissue damage. I am looking into similar info, but will need to perform a biopsy first due to really wierd location of my said growth...and if they are going to biopsy it, we are going to try and remove as much as possible..but there are inherent risks associated with the facial schwanommas depending on the location...this is something you will need to really define in terms of any treatment. I would suggest that you make as many copies of your films as you can...visit the cyberknife support group, send copies of films to Dr. S and Dr. M as well as some endoscopic neuros and whomever you can find to look at your films..if you are anything like me, you will get a variety of opinions....for me...my tumor is located almost similar to a pituitary tumor only further back and downward, so in an odd spot period...but due to the facial nerves, I have to be very carefull with any treatmnet option I choose...so hhmmmmmm which one?,
at the moment, I am a candidate for endoscopic approach and hopefully it can be fully resected, if in the event it is not, I will preceed with CK with Dr. Spunberg in W. Palm Beach FL. whom has been most patient and caring in regards to my particular prediciment.
CK, is robot controlled..I consider that a very good thing as the machine self adjust to your movements, and continues to monitor the entire proceedure..it can be fractionated, which would be treatment of choice in preservation of facial nerves, and the treatments can be a week or more apart, making scheduling easier...I was counseled to perform Novalis...but I would need treatment every day for 30days..not overly convenient..so if it sounds petty, it is not....if you cannot set aside time in your life, for 30 days of ongoing treatment  etc...the treatment is not much of an option...now if it was say, your only choice, well then of course..but if other treatments are available and considered just as if not more effective, I am going to to with the one that is easiest for me....one difference between cyberknife and Novalis and or GK, is that many hospitals etc. liked the fact that the computer software for novalis could be upgraded easier in the future..now when you are spending several hundreds of thousands dollars on a peice of equipment, it is nice to know it can be upgraded later..however, for me. I want the most updated current equipment, and they can figure out how they are going to upgrade it later.....Cyberknife software is pretty much how it is, and not particularly upgradeable in the future...I dont need this done in the future, I need it done now, and would rather trust a robot or computer controlled machine than rely on human error anytime.

Where is your facial schwanomma and if it swells from any of the radiation treatments, do you have the room for it to do so...I beleive you mentioned that it was not currently bothering you , so it seems you have a little give, so to speak..a good thing..me, I am not I do not believe going to be that fortunate....so we are going to try and reduce it physically first....(still waiting on yet again, more consults before I make final decision..but leaning that way)

I can recommend read read read everything!!!!!!!!!!!! and do not go by one doctors opinion..they all have vested interest in thier equipment, although I believe each one feels that thier method is best and only want to help, you have to take into consideration, what gave them that opinion to begin with.....they have a lot to consider...insurance liablity is different with each machine, system upgrade expense, where they will perform proceedures, is it just thier machine or do they share with a facility, what training is necessary for each type, how involved is it etc....all these things have helped them form thier opinions, and it is good to know how they come by the opinion they have.

Good luck
Ceeceek

ps. sorry about beinglong winded

[pearchica]

Hi Vinnie: I'm sorry about your facial schwannoma ( I didn't even know these existed till I came accross your posting).  I had CK at Stanford- it was a great experience-very relaxing but I don't know enough about your condition to give you an informed desicion- I do think you should do a ton of research- and yeah- everyone will have a different opinion- which can be frustrating. pubmed.org is a great website - I only found out about it after my third opinion but it is was very helpful in my research.  Good luck and keep us updated.  Annie

[justafactoflife]

I know your feeling about what should I do.  I had a small AN tumor removed with retroid-sigmold microsurgery approach and it saved my hearing with a loss of 40%.  This was in July 2003. 

I found out later in June 2006 from a MRI followup and similiar symtoms that I had a much larger re-growth of the supposedly surgically removed tumor.  I too researched for about 2-3 months before coming to a decision.  I chose CK with FSR 3 doses in 3 day intervals.  This was due to the location mainly and size.  I almost chose microsurgery again but I found out there are other options that I wasn't told about in 2003. 

I found CK to also be very comfortable, and no pain at all during the treatments.  More and more as the results are coming in, you will find that CK is very, very accurate.  + or - .089 mm and successful treatments are being documented as we speak up to 98%.  In otherwords less than 1mm accurate.  Some tumors are not much bigger than that.  I know from my own research that Novalis is accurate + or - 2mm and my tumor at the smallest end was 4mm.  So, would you rather have a 2mm or less than 1mm accuracy?  2mm was 1/2 the size of a portion of my tumor and it made my decision much easier when I found this out.  Don't take my word for it.  Research the manufactures own websites and they will tell you what their accuracy is.  If they don't, do you want to trust them?  I recommend you review each of the manufactures websites on Cyberknife.com, Gammaknife.com, and Novalis.com  They each will tell you they are your best choice.  (By the way, I'm not sure about the websites, so do a google search on them).  By the way again, GK is only used on the Skull tumors.  CK can be used on the Skull and other parts of the body.

I would highly recommend you ask your questions on www.cyberknifesupport.org/forum and the Drs there will answer your questions without any bias toward CK or GK, since they practice both and are well recognized as very good doctors from different parts of the United States.  Dr Clinton Medbery, III has been rated as one of our nations Top Ten Doctors for 6 years straight.  He is in Oklahoma City at St Anthony's Hospital.  They answer your questions usually within a day or two and without exception they do not recommend one over the other (CK or GK).  I believe they will do which ever you prefer but they can give you straight answers to your questions and not in medical terminology you don't understand.

Good Luck with your choice and welcome to your new friends who will support your needs with understanding.

[justafactoflife]

I found the manufacture website for Cyberknife.  It is www.accuray.com

[Jan2]

Hello,
My daughter was diagnosed with a 7th cranial nerve (facial nerve) schwannoma five years ago when she was sixteen and a junior in high school.  We've taken the "wait and see" approach up until this point.  She has no facial paralysis.  Although initially she had dizzy spells and episodes of what she termed, "heavy head" episodes, those lasted only a few months.  Now, her only symptoms include muffled hearing in the affected side and decreased tearing in the eye on the affected side. 

Our doctors here in Louisiana  incorrectly diagnosed her with an acoustic neuroma and recommended surgical intervention right away.  Had she had surgery, they would have found a 7th cranial nerve tumor instead of an 8th cranial nerve tumor and surgical removal would have resulted in complete facial paralysis on the affected side.   My prayer was that God would lead us to the right doctor and He did.  We found Dr. Slattery at the House Ear Clinic and he recommended the "wait and see" approach."  Meanwhile, in the past five years she has completed high school and will graduate from college in May 2008 and her life has been great!  Although her symptoms have not increased, Dr. Slattery now says that because of gradual growth of the tumor, now is the time to do something.  He feels we have a chance at preserving facial function with GK.  I've also consulted with other experts across the country and sent her MRI's to them for review as well and they agree that now is the time and GK is the most appropriate treatment for her.  She is scheduled for GK at The House Ear Clinic on 12/19.  We thank God everyday for  Dr. Slattery at the House Ear Clinic.   
Jan

[jemcmac]

Setting the record straight. Gamma Knife VS. Cyberknife

 http://www1.wfubmc.edu/gammaknife/Gamma+Knife+vs+CyberKnife/


This may help you then talk to the neurosurgeon. 

Then you decide.  AIm for effectiveness and accuracy.

Good luck.

[ppearl214]

hi jcmcmac,

Please see my post to you in this thread re: Wake Forest program.

thanks.
Phyl

http://anausa.org/forum/index.php?topic=5426.new#new

[debgit]

Hi all! Don't know if you remember me, I was the newbie about 6 months ago trying to decide between the different radiosurgeries - anyway, finally decided on GK, and had the procedure this past week at Jackson Memorial in Miami - Dr. Landy. I am SO relieved that it is over! And VERY happy with the decision that I made - and I think that's the key - and the best advice that you all gave me - keep going until you are satisfied with your decision - whatever it may be. Once I settled on GK, and decided to go with Dr. Landy at Jackson, I never gave it another thought! I did my homework, asked lots of questions (thanks again to all of the wisdom that came out of this site), and then made my decision - and never looked back. Feeling pretty good - little headachy, bit dizzy, but better each day, and I know that in a couple of days I will be "doing my thing"!. Thanks again to all your sound advice, and words of encouragement - if I can throw in my two cents at any time, please ask - Happy New Year to all! Debbie

[candtlaw]

Happy New Year to you too Debbie   I hope that you continue to feel better everyday..........