just diagnosed with 5mm a/n

[Tumbleweed]

Statistically speaking, the risk of radiation treatment causing cancer has been shown in scientific surveys to be virtually no greater than the risk to the general public for developing cancer. This statistic comes from decades of surveys by the medical community. How much more of a track record do you need?

For me, it always comes down to a numbers game. If, for example, the general consensus of consulting doctors tells me I have a greater risk -- in percentage terms -- of facial paralysis, hearing loss, balance deficit, cerebrospinal fluid leakage,chronic severe headaches or other quality-of-life-altering side effects with treatment A vs with treatment B, I'm going to go with treatment B to increase my odds of having a rewarding life after treatment. It makes no sense to me to worry about some hypothetical far-in-the-future risk not supported by scientific data and let it move me to accept a higher quantifiable risk immediately at treatment.

For example in my case, the six doctors I consulted all said microsurgery posed a 100% chance of my being completely deaf on the AN side (a sure thing) immediately following surgery, a 1 in 3 chance of permanent facial paralysis and about a 15% chance of debilitating headaches for the rest of my life. With radiation, however, I had about a 40 to 60% chance of deafness after 5 years and only a 1% chance of permanent facial paralysis (and virtually no chance of getting chronic headaches). It didn't make sense for me to accept exponentially higher risks of deafness, facial paralysis and headaches for the next 40 years of my life because I was afraid of developing brain cancer based on theoretical concerns not backed up by scientific data. It makes about as much sense to question the long-term effects of brain surgery; for example, in the case of the retrosigmoid approach, how does prolonged retraction of the cerebellum and hours of toxic anesthesia affect someone decades later?

I'm not saying radiation is always the best choice for everyone. Your consulting doctors are best qualified to tell you the risks posed by each type of treatment. But it is far better, in my opinion, to base your decision on known risks than on unknown theorized risks.

Nobody knows how long they will live. Life is a gift to be enjoyed today. Choose the treatment most likely to preserve your quality of life.

My thoughts only...

Sincerely,
TW

[cherrypiper]

Welcome in. My tumor when they found it was about 10 mm x 2.3 or so shaped just like a large almond. I already had tinnitus to the point where i didn't really hear on the rt side.

Dizziness ? no.......BUT the more tired i got during the day , the more i lean to the left. As the Dr. explained it , its cause i have no gyroscope of the inner ear working on rt side so brain over compensates for this.

Now in full daylight the eyes help this a lot , but at nite they cant do as much. So i run into walls and furniture when i see it coming and still cant correct.

Driving at nite isn't so bad, but i have found low speed ways home from work as i am often at work until 8 to 9 pm.

[Milenkas]

I saw two doctors, one from University Hospitals in Cleveland, and one from Cleveland Clinic.  Both dr.'s opinions were the same....thank you everyone for your input.

[Chances3]

Hi Milenkas again.

I posted to you last month.  I know what you are going through.  As I mentioned in my earlier post, I averaged a vertigo attack every 5-8 days.  My visual world would go into full spins that lasted 3-5 minutes, but felt like an eternity.  My son said my eyes would vibrate like crazy back and forth ( known as Nystagmus ). Once the attack was over, I would be very nauseous, soaking wet in my own sweat and completely out of it.  You might ask your doctor about using meclizine for your dizziness.  I didn't take very well to meclizine, and I was put on Xanax, it helped me.  But find out about using some form of an antivert medication while you research and make up your mind how to treat your tumor.  You are in my prayers that God will guide you through this very diffcult time.

God Bless.

[Milenkas]

Thank you!

[Milenkas]

dr. called in a precription for mentizine. I took one last night and was wiped out until about 1/2an hour ago....almost 30 hours of feeling out of it, wanting to sleep and extrement dizziness.....Mentizine is not for me...

[kkgriffin]

I also have to disagree with Tumbleweed and Jan regarding ratiation.  I had Cyberknife for a 8mm AN Nov. 2010.  I was given a HUGE sales job by the CK Dr.  Seemed as tho having non invasive would be a better choice.  It was not.  I have had terrible side effects from the radiation, as it is looking like I most likely am going to need to have it removed.  We are waiting for 6 months, have another MRI and make a decision.  I have now had to travel to specialist.  What I am saying is to get several opinions and then take time to make your decision.  I hope this helps some in your decision process.

[Tumbleweed]

kkgriffin, I'm sorry you've had such a tough time post-CK. How long has it been since you were treated? If it was less than about 15 months ago, your "terrible side effects" are to be somewhat expected and should moderate over time. Also, if you were treated less than two years ago, it is probably premature to consider having your AN surgically removed. And who treated you and at what facility? This is more important than the type of treatment, IMO. Brain surgery of any kind, including radio, is a very complex and highly skilled affair, and it makes sense to seek out the doctors with the most experience and the facility with the most accurate and up-to-date equipment.

As I said in my posts, I am not saying radiation is the best treatment for everyone. And no matter how promising the statistics may be, every type of treatment results occasionally in a poor outcome (that's true even for far simpler and less serious procedures). The point I was trying to make is there is no basis in fact for concerns that radiation might cause malignancy and, since every type of treatment comes with considerable risks, I feel the best course is to ask your doctor in percentage terms what those risks are for each type of treatment. I certainly didn't and wouldn't ever try to suggest those odds are a sure thing and things can't go wrong. I just like having the odds on my side.

Best wishes,
TW

[Milenkas]

I've made the decision to have the an removed Jan 26th at the Cleveland Clinic.  Dr. feels its better to remove it now while it's small.  I've tried vestibular therapy and helped a little but not much.  Dr. feels if the tumor is removed, vestibular therapy would help a lot.  I'm a little nervous but can't wait until it's over with.

[alabamajane]

Milenkas,
good luck to you during surgery. I have been reading your posts and I hope you are feeling some relief in having made a decision. That is sometimes the hardest part. Now prepare yourself best you can for your surgery. I am praying for you that it goes well. This is a hard journey we are on, I had my surgery Oct. 27, so am not far into recovery.. I won't "sugarcoat it",, it is not an easy surgery nor recovery,, but hopefully yours will be easier as your tumor is much smaller than mine and mine was "deep" inside. Go in  with a positive attitude that all will go well and it will! Again , good luck and we will all be praying/thinking of you. Jane

[HeidiC]

Good Luck Milenkas!  I will be thinking good thoughts for you on the 26th.  Like Jane said, the decision can be the hardest part, so I hope you are feeling a little relief now!

~Heidi

[Milenkas]

thank you for your kind words.   I will keep you all posted.  Just trying to get everything in order in my house and work before surgery. 

[stephSF]

Hi.  I jut read all posts and your decision.  I will be one day ahead of you but will have translab in so. Cal.  I know what you went through deciding!  It's quite the process.  Sending you good thoughts as you move courageously match forward to save your life!!
Stephsf

tinnitus and slow hearing loss for 8 yrs.
July 2011 sudden full feeling, severe impaired hearing
Treated for ear infections (Not) for 3 months
Audiology, ENT, MRI and dx 11-2011 1.6 cm AN left
Translab scheduled 1-25-12 at HEI

[leapyrtwins]

Good luck, Milenkas & Steph.  See you both soon as "posties" 

kk -

I'm sorry you had a bad experience with radiation.

As Tumbleweed said, radiation isn't for everyone - surgery isn't either.  Treatment is a very personal choice.

But whichever treatment is chosen, there are side-effects and no one can say which ones you may or may not encounter.  If there is one steadfast "rule" with AN patients it's that we all are unique in how we recover from treatment.  For example, I had double-vision for a few days post op, but I know lots of surgery patients who never had it.

Also, as Tumbleweed said, it's a little premature to say you are going to have to have surgery.  Necrosis (tumor death) takes time. 

Keeping my fingers crossed for you,

Jan

[mindyandy]

Milenkas & Steph
I am not to far behind you surgery bound. Stay strong.