GK question for those who've used it

[TSS]

Shawn,

I went through several consultations with neurosurgeons and radiosurgeons. They said I was a candidate for both which made the decision more difficult.  I ultimately decided with CK and am very pleased thus far though I'm very early post treatment - 40 days.   It was a 5 day fractionalized process - no side effects thus far.  The team at Baylor in Dallas seemed extremely proficient - they have a GK & CK.

Best of Luck.

[phantagrae]

Phantagrae ~

I also believe that you are receiving FSR which is what I underwent back in 2006.  The mask is confining but one adjusts and the 'sessions' were relatively short.  I experienced no 'side effects' whatsoever and according to subsequent MRI scans, the FSR (following debulking surgery on a 4.5 cm AN) was very successful. 

It is a conservative approach that worked to good effect for me, as I hope it does for you.

Jim

You're right--I'm having FSR.
So far, I haven't felt any real side effects.  I might be a little more fatigued than normal, but not dramatically so (yet!).
But as of today, I'm halfway through!

[theshawn65]

Update: Had a consultation with a Dr. Warnick with the Mayfield Clinic in Cincy last Friday. Completely different doctor, didn't nix surgery option out of hand as Dr. Samy did with radiation option telling me my neuroma was too big.

This Dr. said my neuroma was 2.3 cm and FSR in three doses would be his recommendation but he would do gamma if I preferred it and didn't think it wasn't a viable option. My wife is totally on board with this option now after hearing all about it and was just taking the previous doctors words as gospel about the tumor being too big for radiation treatment.

After looking at success rates of both, possible side effects of both I'm going to go down this road. If it's possible to preserve the hearing I do still have I want to do that as I have two somewhat audiophile stereo systems I love to listen to, the thought of doing it in mono the rest of my life isn't appealing. lol

In my opinion the worst that can happen is the radiation doesn't work, the tumor still grows and I have to get surgery anyway so how am I that much worse off? While the best that can happen is I'm in the 90+% that it does work for, the 70% it saves hearing for, the tumor shrinks and I avoid surgery for a long long time and possibly the rest of my life.

Since surgery is no panacea with regard to grow back rates, facial nerve saving or the retention of hearing it's pretty much a no brainer for me personally. If surgery was head and shoulders above radiotherapy then I'd choose it. In my view both the possible and real benefits of FSR outweigh the risks.

I have to consult with a Dr. Beneman that Dr. Warnick partners with on acoustic neuroma radiosurgery, then have the CT and MRI to define it beforehand.

I'll post updates as they arise but it definitely helps remove some of the stress having made a decision.

[PaulW]

There has been quite a bit of talk of late on Radiation failing...
At the 5 Year Mark success rates are around 95-98%
This appears to drop off at the 10 Year Mark to around 90-95%

Well found an interesting article showing tumour regrowth after Sub total removals are running at 22% at 3.7 Years.   

http://www.ncbi.nlm.nih.gov/pubmed/23928516

[LakeErie]

Paul, Thanks for that link. What I took away was that the regrowth rates at 3.7 years were 21% and 22% respectively for near total removal and subtotal removal, but the numbers needing retreatment of the residual tumors were far
lower at 2% and 10%. Of course more retreatments may become necessary as time passes.
As you may know, Dr Chang at Stanford has been running a clinical trial in conjunction with the Mayfield Clinic and Baylor Univ Medical Center among others to evaluate subtotal removal of large schwannomas, >3.0 cm, with radiation as adjuvant therapy in cases of regrowth.
In my own case, I had 95% to 97% of a large schwannoma removed in Oct. 2011. My surgeon, with 600+ removals, expects regrowth and plans on using GK to "mop it up." My one year MRI showed "stable residual tumor size." Based on that I am scheduled for my next MRI in April, 2014, or 18 months from the one year scan.

[nftwoed]

Hi;
   You wrote: "Since surgery is no panacea with regard to grow back rates, facial nerve saving or the retention of hearing". I believe you could fairly apply the statement to any radiation form also. Each person is individual and outcomes are difficult to predict. I feel %s are indicators of some groups with one Tx form or another, but, certainly, not all who are post Tx are included in the statistics.

Update: Had a consultation with a Dr. Warnick with the Mayfield Clinic in Cincy last Friday. Completely different doctor, didn't nix surgery option out of hand as Dr. Samy did with radiation option telling me my neuroma was too big.

This Dr. said my neuroma was 2.3 cm and FSR in three doses would be his recommendation but he would do gamma if I preferred it and didn't think it wasn't a viable option. My wife is totally on board with this option now after hearing all about it and was just taking the previous doctors words as gospel about the tumor being too big for radiation treatment.

After looking at success rates of both, possible side effects of both I'm going to go down this road. If it's possible to preserve the hearing I do still have I want to do that as I have two somewhat audiophile stereo systems I love to listen to, the thought of doing it in mono the rest of my life isn't appealing. lol

In my opinion the worst that can happen is the radiation doesn't work, the tumor still grows and I have to get surgery anyway so how am I that much worse off? While the best that can happen is I'm in the 90+% that it does work for, the 70% it saves hearing for, the tumor shrinks and I avoid surgery for a long long time and possibly the rest of my life.

Since surgery is no panacea with regard to grow back rates, facial nerve saving or the retention of hearing it's pretty much a no brainer for me personally. If surgery was head and shoulders above radiotherapy then I'd choose it. In my view both the possible and real benefits of FSR outweigh the risks.

I have to consult with a Dr. Beneman that Dr. Warnick partners with on acoustic neuroma radiosurgery, then have the CT and MRI to define it beforehand.

I'll post updates as they arise but it definitely helps remove some of the stress having made a decision.

[theshawn65]

There has been quite a bit of talk of late on Radiation failing...
At the 5 Year Mark success rates are around 95-98%
This appears to drop off at the 10 Year Mark to around 90-95%

Well found an interesting article showing tumour regrowth after Sub total removals are running at 22% at 3.7 Years.   

http://www.ncbi.nlm.nih.gov/pubmed/23928516

Thanks for this info. Whether surgery or radiosurgery the success rates are high across the board and I would expect anything less than total removal would have higher regrowth rates so that's not surprising imo.

[theshawn65]

Paul, Thanks for that link. What I took away was that the regrowth rates at 3.7 years were 21% and 22% respectively for near total removal and subtotal removal, but the numbers needing retreatment of the residual tumors were far
lower at 2% and 10%. Of course more retreatments may become necessary as time passes.
As you may know, Dr Chang at Stanford has been running a clinical trial in conjunction with the Mayfield Clinic and Baylor Univ Medical Center among others to evaluate subtotal removal of large schwannomas, >3.0 cm, with radiation as adjuvant therapy in cases of regrowth.
In my own case, I had 95% to 97% of a large schwannoma removed in Oct. 2011. My surgeon, with 600+ removals, expects regrowth and plans on using GK to "mop it up." My one year MRI showed "stable residual tumor size." Based on that I am scheduled for my next MRI in April, 2014, or 18 months from the one year scan.

Holy cow that's great news considering the size of yours when found. The fact they use GK, CK, etc to zap remaining tumors or if regrowth occurs also makes me feel safer using it as my first salvo against this stupid thing.

[theshawn65]

Hi;
   You wrote: "Since surgery is no panacea with regard to grow back rates, facial nerve saving or the retention of hearing". I believe you could fairly apply the statement to any radiation form also. Each person is individual and outcomes are difficult to predict. I feel %s are indicators of some groups with one Tx form or another, but, certainly, not all who are post Tx are included in the statistics.

What I was trying to say was that surgery isn't head and shoulders above radiosurgery in outcomes or long term stoppage of regrowth and hearing preservation. If one type was obviously better all of our decisions would be easy, but both types have their pluses and minuses.

For me and me only I believe radiosurgery has a higher potential for preserving my standard of life in the short term and possibly long term as well. Others will be so freaked out about having a tumor they just want it out and prefer surgery, or after looking at both types of treatment choose it over radiosurgery. Everyone has to go with their own comfort level, but just taking any doctors word for it without multiple opinions and research to base your decision on is asking for regret imo.

I could care less the tumor is there if I knew it would grow no larger as my life hasn't been affected that negatively by it. Even though the tumor is 2.3cm and "they say" it should be treated, I was still open to just letting it go and getting another MRI every 6 mos because sometimes they do stop growing even if only for a few years. The thought of possibly putting this off another couple years had it's appeal too. Plus it's my head I'll do what I want with it. lol

But ultimately I've decided to treat it now and to go the CK route as this will provide the potential smallest disruption to my lifestyle in the short term and if successful the same long term. While some people seem to focus on the failures in any procedure I choose to look at what the largest percentage experience.

I will be posting here during my treatment and afterwards for years and years regardless of success or not. I won't just disappear if my treatment works or hide if it doesn't.

[nftwoed]

Hi;
   I wish you well and are glad you decided CK and have peace in that decision. Reason being is because risk for post operative complications increases on ANs 2.00 cm or larger.

[theshawn65]

Hi;
   I wish you well and are glad you decided CK and have peace in that decision. Reason being is because risk for post operative complications increases on ANs 2.00 cm or larger.

Thank you.

Well it seems the larger the AN the more likely to preserve facial nerve function they may leave a tad in there, which to me would defeat one of the major reasons for surgery, which it to get it out. As leaving any in there has a much higher risk of re-growth. Or, to get surgery and THEN gamma/cyberknife the remainder seems as redundant and risky as trying Cyberknife alone to begin with from my perspective.

[Jim Scott]

Well it seems the larger the AN the more likely to preserve facial nerve function they may leave a tad in there, which to me would defeat one of the major reasons for surgery, which it to get it out. As leaving any in there has a much higher risk of re-growth. Or, to get surgery and THEN gamma/cyberknife the remainder seems as redundant and risky as trying Cyberknife alone to begin with from my perspective.

Perspective is crucial.  I was diagnosed with a 4.5 cm AN (in May, 2006) so surgery was my sole option.  However, I was adamant about not having facial nerve damage.  My neurosurgeon was thoroughly experienced with AN surgery and completely understood my concerns.   He proposed a two-stage plan that consisted of his debulking the tumor and severing it's blood supply, then, following a 90-day 'rest', employing FSR to destroy the remaining tumor's DNA and it's ability to re-grow.  I readily accepted this plan as it made sense and addressed the facial nerve issue.  Long story short: the surgery went perfectly and I had no facial nerve complications (or any other problems).  My recovery was relatively swift.  The follow-up FSR sessions (26), plotted and overseen by a talented young radiation oncologist working in tandem with my neurosurgeon, were uneventful without any noticeable side effects.  Subsequent MRI scans indicated no growth and the beginnings of tumor necrosis.

That was seven years ago and today, I'm doing great!  My view is that every AN patient is unique and what works well for one is not necessarily a template for other AN patients to follow.   The debulking/radiation procedure I underwent was a bit tedious but had a specific purpose of avoiding facial nerve damage - and it worked well - for me.  That having been noted, not surprisingly, I'm a believer in the debulk/radiation procedure for AN patients with large tumors.  However, that opinion comes from the perspective of an AN patient that had both procedures (surgery & radiation) with excellent results.

Jim

[nftwoed]

Hi;
   I've wondered since the facial nerve is a motor nerve and quite fibrous, how many pts. unknowingly leave the surgical recovery room with the thought and words; "We got it all"!