Location of AN...good/bad for radiation?

[cindyj]

Hey All,

I'm back in decision-making mode and determined to make one! 

I have noticed a few times that people have stated they were not candidates for CK/GK due to the location of their AN...where would a bad location be for radiation?  I thought the main reason one would not be a good candidate for radiation was due to size (3.0-3.5 and larger).  I have been told that even though my AN is conjoined (my term, not the docs) with my brain, that I can still have radiation, though fractionated would be best due to the proximity to the brain...am I missing some facts?  You'd think I would know this after all this time living here on this forum, but this escapes me.  Should have asked my doctor about this, but I forgot...I know, I am supposed to have my list of questions when I go to the appointment, but...

I am not ruling out surgery for various reasons, one being that I almost feel better about having the balance nerve severed so that the other side of my brain can eventually take over and in this way, hopefully, avoid the possibility of perpetual dizziness from a damaged balance nerve.  I have severe motion sickness and it doesn't take much motion   Thoughts about that from any of you with vertigo/dizziness issues?  (I have done various vestibular excercies in the past, but just the thought of them as I sit here makes my stomach flip )

As always, thanks so much to everyone here!

Cindy

[sher]

Hi Cindy,
I have had balance and dizziness issues for almost 2 years now. I am having another MRI on Sept 3rd to see if any growth in the last 3 months. One thing that has helped me tremendously is physical therapy on my neck and accupuncture on my sinus ear and head area. Just a thought.
Sherry

[tony]

Yes - there are poor or unwise locations for radiotherapy
- most cases its where the AN is already compressed, near or
up against, the brain stem (in a tight space).
Post treatment swelling is expected (40% ish of cases)
and in these locations might cause further problems
The larger ANs are excluded for similar reasons
though some will treat to 4cms.
best regards
tony

[sgerrard]

As Tony said, the main issue with position and radiation is what happens if the tumor swells up. In your case, since it is small, it would not displace the brainstem very much - less than a larger AN would by itself. That is probably why they say it is still a good option. Not hitting the brainstem with radiation is also important, but the machines are quite accurate in that respect. CK seems especially attractive, as it is fractionated a little bit, and very precise.

The vestibular nerve issue is an important consideration. I think Arushi had radiation, and had to have a small surgery as well to "fix" the balance nerve, as it was creating problems. There is something to be said for having surgery and inactivating a damaged balance nerve. MaryBKAriz has been dealing with some dizziness after CK, but seems to be improving; maybe she can tell you about it.

Hope the decision making process goes well.

Steve

[AMD]

Hello,

I think each person's case is so individualized that many factors go into why or why not CK or GK or any other non-surgical approach would be beneficial.  For me, being younger, surgery was recommended, also it was reinforced by my tumor size as well as it's location (right up against my brainstem).  Even though I can be a candidate for radiation, etc, they said my brainstem would still receive dosages of the treatment. For me, surgery is the best option.  This si not true for everyone, of course.  As long as you keep yourself well-informed, and have a supportive doctor who will be honest and straightforward, I'm sure you will choose the treatment that will give you the best long-term outcome you are looking for.  Good luck with everything!!

Amy   

[cindyj]

Thanks, everyone!

Yes, the swelling thing I had forgotten about...how could I forget that??? 

I briefly talked with the radiation oncologist's nurse today and she said the doctor said he would definitely not be able to do the "one shot" dose due to the thing now pushing (ever so slightly, I think) on the brain stem.  He recommended fractionated of some sort...details to be discussed later should I choose radiosurgery.

Yes, I know Mary has had issues with dizziness....I've been wondering how she's doing - anyone know?  Mary, HOW ARE YOU?

Sherry, good luck with your MRI results in Sept - be sure to let us know.  You have my empathy about the dizziness.  I think that can sometimes be worse or more debilitating than pain.

Amy, have you scheduled surgery yet?  Sorry you were misdiagnosed for so long - think that has, unfortunately, happened many times.  Do you know yet which type of surgery you are having?  Please be sure to add your date to the calendar once you know it.  If you need the link to the calendar, it is on Steve's signature line right here in this thread.  Good luck with everything!

Thanks again for the input,

Cindy

[AMD]

Hi Cindy,

Hope all is well with you.  My surgery date is not set just yet.  I need to meet with the neurosurgeon assisting, but my neurotologist said it would probably be 2-3 months from now.  They'll be doing the retrosigmoid/sub-occipital approach, and plan on me having SSD after the operation.  Unsure of the facial nerve, but they sound optimistic.  I'll be sure to put it on the calendar when it's scheduled.  I am ready to get this thing outta my head

Thanks....

Amy

[calimama]

HI Cindy....

Just my 2 cents on balance nerve issues and surgery. Remember everyone is different.

I had surgery and that means balance nerve cut. While the first week after surgery (in hospital) was rough, and blurry, i really didnt have much problems with balance (nor did i before surgery).

I am now 11 weeks post surgery and i have started running again (with support of jogging stroller in part because of eye patched due to double vision). I do notice myself a bit unsteady at times, mostly in the dark, but i would estimate my balance (for living life on a day to day basis, not olympic kind of stuff) to be about 90-95%. I understand this improves to near 100% by around 6 months, but i just want to say that it really has not been a big deal for me (and i have a 17 month old babe to chase around).

Good luck with your decision.

Trish

[cindyj]

Hi Trish,

Thanks for the input - you kind of confirm what I've been thinking about the balance nerve issue.

Sorry you're still having double vision...hope that goes away soon.  What does your doctor say about that?

You and others with little ones that have been through surgery are true warriors!  I, thankfully, have teenagers.  Don't think I would have had the strength to get through this type of surgery if they were still little.  You guys really are amazing.

Cindy

[NL]

Hi Cindy,

I'm joining in this conversation a little late. I can't really help you with the tumor location, but I can add my experience with the balance nerve and surgery.

I didn't have severe motion sickness like you, more of an "imbalance" issue. It was very noticeable about a year before my surgery. I'd describe it as "drifting" towards my left (AN side) while walking or sometimes just losing my balance to that side. It improved over the last year (I think the good side was starting to compensate), but was still there to a degree. The day of my pre-op exam the doc had me walk a straight line across the room, and I was almost to the other side before I "drifted" left.

I think I'm one of the people who benefitted from what Steve referred to as "inactivating a damaged balance nerve" during surgery. Post-op, as soon as I was on my feet, I could tell that I had regained perfect balance - something I hadn't experienced in quite some time! It was also weird that for years I didn't like heights since looking down always made me light-headed - but post-op, as I walked up to the floor-to-ceiling windows on the sixth floor of the hospital, looking down to the street level didn't bother me at all. I was really surprised at the difference it made.

Like Trish said everyone is different. In my case, I think they just happen to cut the balance nerve at a good time.

Whatever you decide you know everyone will be here to support you!

Good luck with the decision,

Nancy

[calimama]

Just to add a bit more context...

I did not have any balance issues before surger, and like i said, other than say the first 1 week), not much to speak of after. As for your reference to pain, there was also very little of that, especially considering what they did!

As for the double vision, this is really not fun, but apparently quite rare. I am just unlucky i guess. Hopefully it will clear up on its own within 6 months (likely, but i am not holding my breath). Apparently another (eye) surgery would be required to straighten it, but i just can't even think of this now.

The surgery is not so bad, but hopefully you can avoid the facial issues that many of us are ranting about here.

Good luck with your decision.

Trish

[cindyj]

Thanks, Nancy.  I think my "gut" is starting to tell me that just slicing that balance nerve cleanly may be the best solution for me.  Still can't actually commit one way or the other, but perhaps I'm leaning in one direction...

Trish, can't blame you for not wanting to even think of any further surgery right now!  Hopefully, the double vision WILL clear up within 6 mos.  We'll cross our fingers for sooner even.

Thanks to all,

Cindy

[NL]

Hi Cindy,

Another thought might be to run the "balance nerve scenario" by both sets of doctors you've consulted with - both the radiation team and the surgical team. I know they can't really predict how your balance will respond to either treatment, but maybe they could give you some indication based on statistics of others treated with tumors of a similar size and location. Just a thought.

And when it comes down to making your decision, you can never ask the doctors too many questions!

Good luck, again,

Nancy

[Omaschwannoma]

Cindy,

Wanted to say a few words here about my balance issues.  I had retrosigmoid surgery first time around in 2005 and had major difficulty getting my balance back.  I got it to 80% (according to PT) at around 6 weeks and it fell from there for three years.  Going to two specialists during that time where they misdiagnosed or didn't want to diagnose and just plain yell at me, I was complaining of oscillopsia.  Oscillopsia is where your vision is bouncing when you walk.  It wasn't until out of complete and utter frustration, worsening symptoms that I contacted my original surgeon, Dr. Antonelli, (he's five hours away from where I live) and it was with another MRI that the problem was diagnosed properly.  In 2008 I went back to Dr. Antonelli and he corrected the problem of oscillopsia with a transcanal labyrinthectomy. My hearing was nil right after my first surgery and one has to sacrifice hearing in that ear so making the decision to go in for another surgery wasn't an issue.  At this time he is thinking my problems were viral labyrinthitis.  What the cause is we are unsure. 

I wanted to share information I heard about from a doctor who spoke at our ANA meeting in regards to balance issues after radiation therapy. Seems there are "others" out there and doctors are now looking into gentamicin injections, titrated (gradual dosages) to make sure one's hearing isn't sacrificed.  The gentamicin destroys the balance nerve and can cause deafness therefore the administration of this drug has to be titrated.  Hope this helps in making your decision regarding surgery vs radiation. 

[sgerrard]

Karen,

Thanks for setting the record straight, I remembered you had the labyrinthectomy, but for some reason I thought you had radiation first, not surgery. Also the information on gentamicin therapy is useful to know.

I would just add that this applies to serious balance issues, not just the little wobble that many of us get. I have a little bit of "turning wobble", noticeable when turning quickly through doors or going down stairs, but it is not enough to bother me or cause me to seek treatment for it. It is when the issues are persistent and  interfere with normal activity that they are a concern.

Steve