New Question from Lee (not to be lost in Good Morning Thread)

[ppearl214]

Hi Lee, I didn't want this getting buried in the LONG Good morning thread... so I hope you don't mind but I helped to move it here so all folks can see and chime in with answers... Phyllis

hi - have 2 - 3 mm accoustic neuroma - haven't had surgery - feel dizzy 24/7 and have a dull headache - just found out june 9th - was having balance problems  .. . what made you decide the gamma knife and not the surgery? i'm currently being seen by dr bigelow down @ penn - am also getting a second opnion @ the brain skull institute in la.  any feedback would be greatly appreciated in terms of your symptoms

lee martin, mom in philly

[ppearl214]

Hi Lee,

2mm-3mm is a very very small AN.  I'm actually surprised if your AN would be causing these kind of side affects, yet, everyone is different and it's not for me to say but your dr's.  What kind of dr have you met with?

I had Cyberknife, not Gamma Knife. There are so many radio-options available (Gamma, Cyber, FSR, Proton) available to us.  I personally chose Cyberknife for some of the following reasons:

1. Accuracy of beam to tumor
2. Minimal affect of surrounding normal tissue
3. Fractionated, which means, done in a few dose'/day treatment, allowing the normal tissue to "rest/heal" in between treatment
4. Mesh (plastic) headframe vs. Metal head frame

Again, this was my choice reasons... everyone else has their own.  I have absolutely no regrets about my decision and have faith that it will work (I'm only 3 mos post treatment). There are those here that had their Gamma and Cyberknifes much longer ago vs. me, so hoping they chime in with their experiences and thoughts.

Welcome to the club and the site.  We're here for you and may be able to help prevent any overwhelming feeling you may be having while trying to deal with this new diagnosis.

Hang in there!
Phyl

[lee]

hey - yea i know it's small - that's why i had the spinal too rule out it being a malgninacy from another tumor in my body. that was really scary waiting for those results.  just wish i didn't feel so darn dizzy all the time - did you have that symptom? i'm anxious to consult w/ the brain skull institute which could be today. i go back to penn to dr bigelow (o-tology head/neck surgeon and a neurosurgeon) end of aug w/ a new mri, vestibular testing and another hearing test. and see what it looks like then. in the meantime i have 2 more wks on steriods and start phsyical therapy today for balance. so we shall see. . . curious though - your symptoms prior to your radiation???
lee

[Battyp]

the steriods I'm assuming are a standard form of treatment when you present with tinnitus...is that why they gave them to you?  Have you considered sending your mri and reports to house in la?  Does your ear feel full?  I'm curious as to why the dizziness with such a small AN but I know everyone is different.  Mine was 2.5CM when the dizziness became horridbly noticeable.  I started with tinnitus as my first symtpom.  Either way the imbalance and dizziness is a pain!  Welcome to our exclusive club and we'll do our best to help in anyway we can!

Michelle

[BevM]

Hi Lee:  I too have balance problems, head and neck pain, fullness in the AN ear, Tinnitus in the "other" ear.  My tumor is 9.5mm and does seem small for the significant symtoms I have compared to many on the forum.  I haven't been able to talk to any specialists yet but have many of your same questions for them.  As mentioned on others, I think we are each differ in how this problem presents and balancing what the doctors say with what others experiencing the problem is important for us.

I wish you clear direction in your journey.

Bev

[amymeri]

When I asked why I had no symptoms until my tumor got to be 4 CM.-- and I never had any hearing symptom-- my NS said "Just Lucky".  But in fact, it seems luckier to find a tumor at such a tiny stage because there are so many  more options and it seems like the risks of long term residuals are much less.  

I didn't have options...surgery was my only recourse.  I might have chosen it anyway, because there is always a long term risk of malignant changes with radiation.  My surgery risk was 1% (death) but there was  2-3% lifetime chance of malignancy (I was 38).  On the other hand, surgery carried a lot of residuals that may or may not resolve.  My hearing on the right is gone, I have slight balance issues--these things aren't affecting my quality of life.  I have significant facial paralysis and I don't know if it will heal--this affects my quality of life a lot!  I don't know if I would trade that risk (malignancy vs facial paralysis) knowing what I know now, but it might be tempting.

With such a tiny tumor I think normally you would be told to watch and wait, but since you are having symptoms, I would explore the long term outcomes before making a decision.  Malignancy, facial paralysis, hearing preservation are all things to think about.

Good luck with your decision making.  Get lots of opinions, do lots of research, seek out the best and then choose.  

Where are you located?

Amy

[Mark]

Amy,

I suspect that you got your information about "malignant transformation" from the surgeon you are working with as opposed to someone who actually understands the studies since GK came on the scene back in 1969. The statistics are more like 1% and are approximately the same as malignancy after surgery for an AN. I'm not not sure if some neurosurgeons promote this myth out of ignorance or 'scare tactics", but it needs to be kept in proper perspective.

On the humorous side here is an exchange from the CK support board by 2 of the docs after answering the same question for someone else

By the way, if a surgeon tells you that CK or GK might cause the tumor to become cancerous, politely excuse yourself and leave.


--------------------------------------------------------------------------------
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center


I could not help but notice your kind use of the word "politely."


--------------------------------------------------------------------------------
Jerome J. Spunberg, M.D., FACR, FACRO
Cyberknife Center Of Palm Beach

I really meant "call him a dirty liar and a scoundrel, make it clear that you detest him for his scare tactics, and threaten to call the Better Business BUreau and several federal agencies", but you can't say things like that here.


--------------------------------------------------------------------------------
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center

You just did...


--------------------------------------------------------------------------------
Jerome J. Spunberg, M.D., FACR, FACRO
Cyberknife Center Of Palm Beach

Mark

[Kilroy1976]

...there is always a long term risk of malignant changes with radiation.  My surgery risk was 1% (death) but there was  2-3% lifetime chance of malignancy (I was 38).

Careful Amy. This malignancy issue has been debated several times on this board, and it tends to get peoples' blood boiling. The studies seem to show that the odds of radiosurgery causing cancer are practically insignificant in the grand scheme.

****

With regards to the original question, what made us choose gamma knife et al over surgery... I think the big issue when choosing radiosurgery is always the lack of invasiveness. Us radiation folks tend to squabble over the headframe, but compared to surgery those four little pins are nothing. No cutting, very little if any recovery time, no anesthesia... of course the tumor stays in there, but it's an unpleasant thought that we've learned to accept. In the end, you're the one that has to live with the advantages and drawbacks of either path, so choose wisely and remember that we're here to help as best we can.

[Kilroy1976]

Whoops, Mark's blood is boiling.

[amymeri]

Hmmm, didn't realize it was a hot button issue around here!  My feeling is that people do what is best for their particular circumstance.  Actually, my surgeon was talking about GK treatment for any residual (since I had to have surgery, no option) and wasn't using the stats as a comparison.  He seemed to be very positive about radiation treatments, in general, and his reputation is one of a cautious surgeon who operates only if he has to...so I will ask him about the stats presented here, just to see what he says.

Ayways, you do what you have to do, what's best for your circumstance.  All the treatments have good and bad things associated with them... that's why it's important to do your research...the docs will probably have a bias either way.  Its your brain, your life and your decision.

There are lots of great people to help!  And I sure agree with Kilroy...the less invasive procedure would sure be nice.  My surgeon thinks GK is the wave of the future.

[ppearl214]

Hi Amy,

Oh, no worries... no blood boiling... just been an on-going debate for a long time... but heck, I can walk across a paved road and get cancer from the asphalt.... or whatever... so, no worries, ok?

I am curious though, about your physician's comment about "GK being the wave of the future".  Just FYI only.... GK has been around for over 35 years... CK (Cyberknife) around for approximately 10 yrs.  Not sure if he was referencing GK or CK.... for me (and only me), I think of CK as the "grandchild" of GK as the foundation of CK is tightly based on GK... just curious, nothing more.  Did your dr ever clarify which he meant?  I know many drs other than those involved with radiation are (or are not) looking to learn more about radio-surgery options available for their patients... just wasn't sure how up he is on CK....

Hang in there Amy!

Phyl

Hmmm, didn't realize it was a hot button issue around here!  My feeling is that people do what is best for their particular circumstance.  Actually, my surgeon was talking about GK treatment for any residual (since I had to have surgery, no option) and wasn't using the stats as a comparison.  He seemed to be very positive about radiation treatments, in general, and his reputation is one of a cautious surgeon who operates only if he has to...so I will ask him about the stats presented here, just to see what he says.

Ayways, you do what you have to do, what's best for your circumstance.  All the treatments have good and bad things associated with them... that's why it's important to do your research...the docs will probably have a bias either way.  Its your brain, your life and your decision.

There are lots of great people to help!  And I sure agree with Kilroy...the less invasive procedure would sure be nice.  My surgeon thinks GK is the wave of the future.

[Mark]

No blood boiling here and certainly wasn't trying to take a shot either. However, given the number of newly diagnosed people who potentially get their first perceptions about treatments from this forum I do get concerned about erroneous statements having an impact. Something like:

 
I might have chosen it anyway, because there is always a long term risk of malignant changes with radiation.  My surgery risk was 1% (death) but there was  2-3% lifetime chance of malignancy (I was 38).  

sounds like a statement of fact which could influence someone new from even researching the option because of an untrue fear. It would probably be fair to say there is both a wealth of knowledge and experience collectively on this board which benefits newly diagnosed patients. It would be equally true to say that there are variations in how different folks understand each option based on whatever sources of information they were exposed to in their journey. I have always felt it was important to correct information that could be misinterpreted and while I was absolutely not trying to ruffle any feathers, I guess I would rather run that risk than have wrong information affect someones choice in the long term.

Mark

[Raydean]

With a tumor this small I'd discuss with the Doctorthe possibility of  False Positive Diagnoses.  I'd also like to share the following.  The person had symptoms very much like the ones described in the start of the thread.

best to all
Raydean


History
Research in the Seattle area and perhaps elsewhere has found that  
perhaps 2 to 10% of diagnosed ANs under about 7mm may turn out to be  
"false positives" -- not really ANs. Information on this has been  
posted on the ANA USA listserv at times during the last couple years.

Example
In January 2004, I learned of someone in this situation. The patient's  
MRIs with gadolinium enhancement showed a tumor in the 7mm to 8mm  
range. A doctor aware of false positive data recognized there was a  
chance there was no tumor, assigning a 2% chance that the image on MRI  
was not an AN. The diagnosis of AN was supported by other typical  
sympoms. For example, the patient had begun experiencing balance  
impairment.
Through surgery it was discovered that the tumor was not AN. Rather it  
was a blood vessel tumor, which was successfully removed. The patient's  
outcome was good. Within a couple days he was taking mile long walks,  
for example.

Implications for Diagnosis and Patient Choices

Diagnosis
Since the tumor was vascular, it absorbed more gadolinium than  
surrounding tissues during MRI, and enhanced ("lit up") just like an  
AN. The vascular tumor was probably pressing against the superior  
branch of the vestibular nerve. That again made it mimic AN in its  
effects (e.g., dizziness).
Observation would probably not have been a good option in this case.  
The patient had already suffered dizziness that lasted weeks. ANs are  
slow growing, but vascular tumors may not be.

[Sue]

Hi Lee:

I had Gamma Knife. My neurologist sent me to the neurosurgeon who sent me to another neurosurgeon who went over my options and, amazingly enough, recommended GK for me. My medium sized AN (2 CM), and age (60) I suppose were the reasons they steered me in that direction. I think it's sort of interesting now that I read that surgeons say one thing and radiosurgeons say another thing,  because my doctor does both - surgery and radiosurgery, and I think that he is of the mind that unless there are no other options, then let's not do microsurgery. He isn't as comfortable with the potential side effects of surgery as he said there were too many instances of permanent facial paralysis.  I had GK because that is the only thing available in Portland, OR. I believe a Cyberknife is coming soon to Vancouver Clinic, but my doctor has been doing procedures at Providence with the GK, so he is experienced in that. He did mention the very small risk of cancer, as they should. This was not much concern for me. I think driving to the store has a bigger risk of fatality than my GK procedure. The headframe with GK is NO BIG DEAL.  They numb your head in the spots where the pins will stick in with some cream, and then they give you injections in those spots to really numb it up and that tiny pinprick of pain is gone in an instant.  And before all that starts they give you a pill to put you in the relaxation zone. LaLa Land. The worse part of the whole thing was the steroid - generic decadron is what I had.  A very common side effect is insomnia, which I had and it was awful.  But that lasted a week.  It took me about three weeks to feel like myself again, although the doctor told my husband two weeks. 

My symptoms were tinnitus, ear fullness (it needed to "pop"), hearing loss - which was treated as allergy, until I developed numbness on my face, which finally resulted in me having an MRI. I don't have much trouble in the balance issue.  I'm grateful for that.

For me, it doesn't bother me that my AN is still there. It is only important to me, that it is dying. Hang in there, Lee....  Everyone on here is nice and helpful and will do the best to answer all your questions. 

Sue

[amymeri]

Well I think my surgeon just meant that non-invasive techniques like GK (which we were discussing at the time) are going to make some surgeries obsolete as research and technology continue to progress.  He seemed to think that was positive, but that for bigger tumors the surgery was still the best approach.  I wish I could have the option, because surgery was difficult.

I feel better about the possibility of FSR or GK for any residual now.

My friends on the meningioma board have gotten opinions from surgeons and radiologist oncologists that are all over the spectrum in regard to the GK/FSR approach and some were quoted even higher risks.  I will post and relay your reassurance.