Newly Diagnosed

[Dakota Rat]

First of all hello to everyone and thanks for all of the information I have gathered here so far.  Some of it has been scary and some comforting, but all of it has been informative.

In april, a general foggy-headed dizzyness punctuated with fairly terrifying attacks of vertigo led me to the ER a few times.  Those symptoms have been improving gradually over the last couple of months.  I have tinnitus and some hearing loss on the left side.  They diagnosed me at the beginning of May with a 3X5mm AN.  I just saw a neuro surgeon about it today.  He suggested I go with Novalis tratement.  So far everything I have read about Novalis makes that seem like the wrong thing to do, especially for such a small AN.  I also read someplace that the dizziness/vertigo are a contraindication, especially for the fractionated treatments he suggested.  I think I should probably go someplace that specializes in AN and perhaps where there is a Cyberknife machine.  Am I on the right track here?  Perhaps you could suggest someplace near Sioux Falls, SD or maybe I should make a vacation out of it.  Fun vacation.

[wendysig]

Hi Dakota Rat,
Welcome to the ANA Discussion Forum.  As a fellow ANer, I can tell you that if you're looking for the most supportive group of people you've ever met, this is the place to be.  I can't tell you where to go for treatment, but if you  are interested in Cyberknife f would certainly be a good choice, ion my opinion.  Keep in mind that I am not a doctor.  You might want to check with Drs. Medberry and Spunberg in the Cyberknife Support Group at cksociety.org.  They are both leading physicians who use Cyberknife and are  very caring and compassionate people and might be able to point you in the right direction.   There are plenty of people there with ANs although it is not strictly ANers on that site, but they too are good and helpful people.  There are quite a few people here who have had Cyberknife who can give you good advice too.  I just happen not to be one of them since I have opted for microsurgery.   Feel free to ask any and all questions.  We are all in the same boat and are here to help and support one another. 

Wendy

[Glenda]

Hi Dakota,

First of all Welcome to our group.  Wendy is right this is a very supportive group and you will find MUCH information here.  I was diagnosed in Jan 08 with a 7 mm AN and am now in the watch and wait mode.  I am having another MRI next month (6 Months) to check for growth.   You are blessed as I am that we found this early while it is small.  As they normally grow slow you will not have to rush into anything.  Take your time, read and study all the options and weigh what is right for you.  You will find several doctors willing to give you a complimentary analysis and their opinion if you will send them a copy of your MRI.  I sent mine to House Ear Institute in LA.  (They are world renowned) You can go to their website to get the address and info.  It took them several days after receiving my MRI to get back with me but I did hear from them and was very impressed with the concern I was shown.  As Wendy mentioned The Cyberknife forum is also a wonderful place to find out information on CK.  Dr Medberry is such a nice man.  You will also hear from others on here I'm sure, who have had CK and they can shed more light on their experience.  There is alot of information here and at first you may seem overwhelmed. I know I did.  But we are all here for you.  Good luck as you begin your journey!!  Ask away if you have any questions.

Glenda

[Jim Scott]

Hello, Dakota Rat:

Welcome to the forum.  I'm pleased you've found it useful and informative.  That is the purpose - and it's always good to see a newly diagnosed AN patient find us and feel rewarded for doing so. 

I had microsurgery followed by FSR treatment and both were effective.  Unfortunately, I'm not well informed about CyberKnife and cannot address your question with much credibility except to say that it seems to be effective and most AN patients who chose that treatment do well and are pleased with the results. I'm sure some will be posting messages to you, soon.

With your small AN you do have time to not only decide on treatment but doctors and facility.  Bottom line:  Yes, you're on the right track - but don't limit your options to any one treatment, physician or facility.  Lots of choices (if you're willing to travel) and you appear to be aware of that and so, are doing the right things.  One caveat: all forms of treatment, including CyberKnife, have risks.  Frankly, successful outcomes simply cannot be guaranteed and yes, complications do arise.  With that reality in mind, keep searching for the right treatment - for you.  We'll help and support you any way we can so please stay connected with the site/forums. 

Thanks for posting. 

Jim

[leapyrtwins]

Hi, Dakota Rat (I haven't called anyone a rat in ages  ) -

as Jim mentioned your AN is small and you certainly have time to do some research on treatment options.

First and foremost, I would suggest contacting the ANA for some informational brochures - very helpful IMO.

I would also find a doctor or doctors who specifically treat ANs.  I'm not from South Dakota, but the ANA has a physician listing on their home page under "medical resources" which might be helpful.  Although the ANA does not recommend any of these doctors (it's not their policy), they are all very qualified to treat ANs and it is a good place to start.

If you do want to take a vacation - albiet not a fun one - I have an excellent doctor here in Illinois who treats ANs with both surgery and radiation.

Jan

 

[Tumbleweed]

Hi, Dakota Rat:

Here's my two cents. With surgerical resection (cutting the tumor out), you run a much higher risk of damage to facial nerve function compared with radiosurgery's results in that regard. For example, with my size tumor, I stand about a 31% chance of permanent ipsilateral facial paralysis with surgery, but only 1% chance of same with GammaKnife or CyberKnife treatment. Resection also poses other risks: roughly 10-15% chance of chronic headaches (thought to be due to bone dust being left behind inside the cranium after the operation), a slight chance of cerebrospinal fluid (CSF) leakage, and (very rarely) cognitive or behavioral changes (memory loss and personality changes). And in many cases, surgery involves cutting the vestibular (balance) nerve, whereas radiation treatment preserves the anatomical continuity (but not always full function) of the vestibular nerve. So I personally think you're on the right track with choosing some type of radiosurgery (one-time radiation treatment) or radiotherapy (fractionated radiation treatment, or that which is split up into multiple smaller doses). That said, radiosurgery/radiotherapy only (hopefully) kills the tumor and does not remove it (like resection would). The recurrence rate for surgery and radiation are about the same (cited to be roughly 2 to 3% in most studies).

As for radiosurgery, GammaKnife (GK) and CyberKnife (CK) are both more accurate than standard FSR (fractionated stereotactic radiation) such as Novalis. CK is also a form of fractionated radiotherapy, but its accuracy gives it a leg up on standard FSR.

CK delivers a more homogeneous dose to the tumor compared with GK. CK delivers only 15% higher dose to the center of the tumor than at the periphery, whereas GK delivers fully double (100% greater) dose at the center compared to at the periphery. CK advocates believe that GK's higher dose at the center of the tumor increases the chance of damage to nearby healthy tissue. Also, GK delivers one large dose to the tumor because one treatment is all you can do with GK (this is because a ring is fitted to your head for the treatment and, once it's removed, there's no way to get it exactly in the same place for a second treatment). With CK, on the other hand, a thermoplastic mask is custom-fitted to your head and the tumor's location (in relation to the mask and your bony structures) is plotted into the computer; on followup visits for treatment, they put the mask on your head again and you're ready for the next dose. This flexibility allows CK to apply smaller doses to the tumor than GK with each treatment; together, the smaller doses add up to the same total biologically equivalent dose as you would get with GK's one and only treatment, but (theoretically, at least) the hearing nerve and other healthy tissue has time to recover in between treatments (whereas the tumor supposedly doesn't recover as quickly). Presumably due to the fractionating of dosage, studies show CK yields slightly better results at preserving hearing compared with results for GK. Furthermore, GK's ring is screwed into the head (the screws stop at the skull) to keep it stationary (so that the radiation stays focused on the tumor), a mildly invasive procedure. CK is totally non-invasive: a series of overhead X-rays tracks the patient's head movements and tells the computer-controlled CyberKnife machine which way to move to track any small movements the patient may make so that the radiation stays centered on the tumor. GK advocates say that's all well and good, but GK has about 40 years of track record, whereas CK has been around a lot less time and is not as proven of a treatment as GK. (CK was approved by the FDA in 1999, although Stanford University Medical Center has been using it since 1994 in clinical trials because their Dr. Adler invented CK.)

The best advice I can give you is shop around for the right treatment/doctor/facility for you and get at least 2 or 3 opinions (I got 6!). Develop a list of questions you want to ask each doctor you see, and interview the heck out of them. After awhile, you will know in your heart what is the best path for you personally to take.

Good luck!

Best wishes,
Tumbleweed

[Cheryl R]

Hello from an Iowan.     Much of which is flooded and in not good shape right now.      To anyone who is interested in surgery I recommend University of Iowa but they do not do radiation.    Mayo Clinic does and would be a good option.                    Your AN is very small and any treatment will probably not change the tinnitis and hearing.      Doing another  MRI in 6 mo to a year would be a good option.    The location of the AN will be a factor in your symptoms.       Some people can have a very small one with decreased hearing esp if it is in the Internal Auditory Canal  and others with a quite large tumor outside of the canal can have a large tumor and perfect hearing.         One also can have balance problems but in time the other side of the brain compensates.         Everyone has their own  response to this tumor. 
                                 Good luck in your AN journey.              Cheryl R

[cmp]

Hi Dakota, and welcome to the forum! Just wanted to echo what others have said about having come to right place for both information and support--I was diagnosed in February of this year with a recurrence (after 20 years!), and I only wish I could have had this site as a resource and community the first time around too!

Also, as has been pointed out, your AN is small, giving you time to carefully research, explore options, see multiple doctors, etc, without having to rush into a decision. You can even change your mind a couple of times while you weigh everything--I know I did! Eventually, you'll have a better sense of what's right for you, both in terms of treatment method and in terms of who treats you and where it's done.

Looking forward to "seeing" you around here again, and good luck!

Carrie

[Palace]

Dear Dakota Rat,


I'm a "18-month-out" Cyberknife-person!  I just had my forth brain MRI and sent it to Stanford.  I'm pleased (so-far) with the doctors at Stanford.  From what I understand, it's the quality of the doctors planning the treatment and not so-much......Cyberknife or Gammaknife decision.  As a patient and with data gathered so far, I'm a FSR believer, if you have that option.  What I have heard, (note: *heard) is there have been failures of CK or GK due to the path the "doctor or doctors" chosen for the FSR direction, treatment plan, etc.)

Read Tumbleweed's post a second time as, it is extremely informative.  Again, I personally add---the experience of the doctor/doctors planning CK or GK is also "most-important," as well.  (regarding either success or failure of the TX)

Chose your facility and doctor-team, very carefully.  Get opinions!

I'm here for any questions I could answer.

My best extended to you.....



Palace

[Betsy]

Hello Dakota,

You've gotten a lot of good input and I don't have much to add.  My only suggestion is to be good to yourself while you're fact finding and make sure you're taking care of YOU.  Looking back on it, it was probably the most stressful time of my life, and I didn't always make good decisions about how I was taking care of myself (ie a little too much comfort food, staying up too late, etc).  Eat right, stay active, and most importantly...get enough sleep!  It sounds "momish", I know...but it's easy to indulge when you're feeling threatened.  Also, I've learned that my vertigo episodes almost always happen when I'm overtired so now I force myself to turn off the pc and go to bed at a reasonable hour.

Best wishes to you as you work your way toward a decision.  It sounds like you've already made an excellent start.  If you have Trilogy treatment in your area (it's another type of "one-shot" radiation treatment, like Gammaknife), I'd be glad to answer any questions for you.  Thus far, I've had excellent results from Trilogy.

Betsy

[MaryBKAriz]

Welcome, I am sorry you have had a diagnosis that leads you to this site, but you are amongst people that understand. I just had Cyberknife treatment a week ago last Monday. I have written details about my journey under the Radiation/Radiotherapy section. The thread is called -

Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona

I am happy I chose the way I chose and you already doing the right thing, I believe, in wanting 2nd opinions and a set of doctors who specialize in ANs. Good luck and stay in touch.

Mary

[Dakota Rat]

Wow!  Thanks for your kind words and for all the information.  I am going to shop around for sure.  I just went to the hospital over lunch to pick up all my medical records.  Tonight I'll work on getting what's relevant together to get out to some places.  I called Mayo since it's the closest at about 4 hours and already have an appointment in two weeks for a hearing test and a consult with two docs.  I believe they have a Gamma Knife.  I still want to get a consult from somplace with a CyberKnife.  I'll probably have to fly to find someplace with one of those that specializes in AN.  Is there anyplace like that where I can also feed my saltwater fishing addiction?    

What besty said about getting sleep is absolutely true for me.  My vertigo and dizziness are very much worse when I'm tired.  I actually had a polysomnograph (sleep study) while we were trying to get this diagnosed.  I had mild apnea.  It wasn't enough to warrant a CPAP, but they gave me some tips to help me sleep better and I have had only a couple vertigo episodes since and they were very mild compared to the ones that led me to the ER in the beginning.  If it wasn't for the tinnitus and hearing loss on that side I probably would have blown off the MRI (that I practically had to order myself in the first place) and discovered this thing after it had been growing for 20 years.  

Everything with these doctors takes so long that by the time I get any real information from anyone, I've been to the end of the internet and back.  By then, nothing they tell me comes as a surprise, so I guess it's good in that way.

Thanks again for all of your great advice.  Be well.

[Sue]

Hey Dakota Rat, thought I'd give you a Welcome to the Forum pep talk too!   Sorry you are joining our elite ranks.  But, we think we're a very special bunch!  Now you can blame everything you do or say that doesn't quite come out right, or every silly/stupid thing that you do, that maybe you'd normally do anyway in the course of being a Human...and blame that darn AN. Small comfort, I know, but we gotta take any advantage that we can, right? 

On a more serious note, I do hope your eventual treatment and recovery go smoothly and that you symptoms subside.  Your 3x5 mm AN is pretty small, unless you mean cm, instead of mm.  A millimeter is the thickness of a dime, (Just learned that on the Internet! cool).  So, if you mm is correct, your AN is not 20 years old, but a mere baby AN, maybe 5 years old.   Mine was 2 cm, and that's closer to a 20 year old tumor.  Not that it matters much.  It's still there, it's still upsetting the system, it still needs to be dealt with, no matter how long the darn thing has been hanging around. Right? 

I am sorry that you are dealing with this.  I do hope you keep us posted on how you are doing and what your doctors say.  I wish you the best of luck

Best regards,

Sue in Vancouver, USA

[fbarbera]

Here are two things you can do to speak with doctors about CK (without getting on a plane or spending any money, for that matter):

1.  Send an email to Dr. Steven Chang at Stanford University Medical Center.  When I was diagnosed, I emailed him directly with my MRI report attached and asked if I could speak with him about CK.  He called me himself a few hours later.  I don't know if he still responds to personal emails like this, but I suspect he does.  You can find his email address on the Cyberknife Patient Support website (which I discuss below).  Just click on the "About the Doctors" link.

2.  Ask for advice on the Cyberknife Patient Support forum -- http://www.cyberknifesupport.org/forum/  -- Simply post a message describing your tumor (size) and symptoms and ask about CK.  Doctors with a great deal of experience generally will respond pretty quickly to your post.  When I was in your shoes, trying to figure out what to do, I would use the CK forum as a sounding board to voice my doubts and concerns about radiotherapy and CK in particular.  Eventually, all of those concerns were addressed and I felt 100% confident in my decision.  Drs. Medbury and Spunberg (two of the volunteer doctors who respond to inquiries on the forum) were a huge help in my process. 

As others have noted, your AN is very small so this is not at all an emergency.  Take your time, get informed, investigate all options, speak to multiple doctors and get yourself 100% comfortable with whatever you decide.  Please don't hesitate to email me if you want to hear more about my own experience.

Be well,

Francesco

[goinbatty]

Hi Dakota,
Welcome to the forum.  Sometimes I wish I had kept a log of how many hours I spent on this site before receiving treatment.  Without all of my fellow ANers, I would have lost it especially after the second MRI showed growth in a short period of time.  I agree with everything's that's been said.  About your records, I found it much easier to ask for copies on the spot if possible and if not I requested the physician's consult or MRI reports be mailed to me once transcribed.  Having copies of all my records afforded me the ability to consult with whoever I wanted to without having to go back to the physician for anything (my insurance didn't require formal referals and by the way, he was against CK anyway).  I also kept the MRI disks and if one was needed for the physician,  the radiology center made me another one to mail out.  If I remember correctly, I consulted with 4 neurosurgeons after the ENT diagnosed it; got the GK consult but when I finally decided on CK (after loads of researching and multiple emails to Dr. Medberry), I contacted at least 6 centers in neighboring states and elsewhere regarding CK.  But when the right combination came together, it just felt right and I went with it.  I hope that makes sense.  My tumor was small and so far the side effects have been very minimal.  There again, tumor size/treatment/side effects are so individual.  
Take care and definitely get plenty of rest.  
Sandra