Confused Newbie from NY

[Jimbo]

Thanks to all for your insight, support and comprehensive information regarding treatment options. It is greatly appreciated.

I recently consulted with Dr Steven Isaacson at Columbia-Presbyterian Hospital in NYC regarding the Leksell Gamma Knife radiosurgery option for my 7 x 12 mm AN.

Dr Isaacson has 20 years radiosurgery experience, and has performed over 400 GK procedures; ~50-80 per year. He said that the location and size of my AN was very typical of those that he has been successfully controlling by GK, which in his opinion is becoming the treatment of choice for such tumors. He estimated 100%(!?) success rate in my case. He said that his overall AN control success rate is 81-82%, because he is increasingly being asked to perform GK on  significantly larger ANs.

Dr Isaacson disagrees strongly with those surgeons who recommend GK only for those who are too old or in poor health. He also stated that in his experience virtually all retrosigmoid microsurgery procedures result in loss of hearing in the affected ear. He said there were no immediate effects from GK, and provided the following information regarding anticipated long-term side effects of the GK radiosurgery procedures that he has performed:
1.   All tumors swell up after GK, with less than 5% becoming filled with fluid, which would require surgery to alleviate.
2.   20 – 30% of patients lose hearing in the affected ear
3.   5% of patients lose balance on the affected side
4.   Less than 5% of patients have facial nerve problems after GK

Dr Isaacson does not see any reason for a 6 month post-GK MRI, due to anticipated swelling. He recommends follow-up MRIs after one year, two years and four years; if no regrowth is observed  after 4 years, he does not believe that any further MRIs are necessary, although may be prescribed by others. In the event of tumor regrowth, Dr Isaacson recommends microsurgery. The re-GK option is not yet a viable option at Columbia.

He does not have any published info regarding long-term results, citing “internal politics� at Columbia? He is planning to write a “patient’s decision-making guide� in conjunction with a surgeon. I am seriously considering GK radiosurgery at Columbia at this time.

Jimbo

[Debbi]

Jimbo-


This is very interesting and very encouraging!  Thanks so much for posting such detailed information.

I hope that things are becoming a little less confusing now as you gather more information and speak to more doctors.  It certainly must be great to know that you have options - and that you don't necessarily have to go with surgery!

Let me know what you decide on - and definitely keep posting!

Debbi

[leapyrtwins]

Jimbo -

it sounds like you have done your research and are close to making a decision, which is not an easy task.

Good luck, and as Debbi said, please let us know what you decide.

It was great talking to you the other day 

Jan

[Jim Scott]

Jimbo:

I won't argue with Dr. Isaacsons' assessment of the Gamma Knife approach because he certainly knows a lot more about it than I ever will, so you're wise to take his opinion seriously.  He is unquestionably experienced and seems to be very positive regarding GK treatment success (100%).  Although his failure to have published long-term results is a bit unsettling, I would simply ask for a few patient referrals from the doctor, just to have some verification.  However, with or without this information, Dr. Isaacsons' 100% success prediction for your case is clearly encouraging and will likely find you undergoing the GK procedure under this doctors supervision.  I can't find any fault in that decision and if you go this route, I pray you have that 100% success rate, along with no complications.

Jim

[Jimbo]

Debbi, Jan, Eve, Jim, et al
I had GK procedure at Columbia Presbyterian 3 weeks ago, and have felt great ever since, other than a mild headache 3 days later.
It is obviously too early to assure that tumor growth has stopped, until at least the 1 and 2-year MRI results.
This past weekend, experienced extreme dizzyness and even seeing double. Doctors say this is a normal reaction, and a positive sign that the tumor is dying.
Started treatment with recommended anti-inflammatory ibuprofen, which helped considerably, but still was not completely steady. Now on the third day of a 5-day regimen of steroid dexamethazone, which has relieved most symptoms. Have resumed all normal activities, and worked out at the gym today.
Life is good!

Jimbo

[Dana]

Hi, Jimbo,
The previous posts have covered a lot of your questions and concerns.  I would just like to add a simple what-I-think-is factoid, which is that we heal more slowly as we get older, and therefore microsurgery is harder on the body the older we are.  I believe this is the case no matter how good a shape we're in (although, obviously, the better shape one is in, the better).  I say this from fairly extensive experience with my mother and husband both having had brain surgeries.  It seems to me that your AN is small.  If all else is equal, I'd choose radiation over surgery.... in fact, I DID !!! choose radiation over surgery for myself, in 2007, GK.  I was 58 at the time, but even if I was younger, I would've chosen radiation.  All is going well, although of course it takes time for the AN to die.

We all make our own decision for our own reasons.  I definitely respect microsurgeons and the miracles they perform, but, all in all, in my humble opinion, microsurgery is ALOT harder on the body than radiation.  So, if you think the results will be similar, I'd recommend opting for radiation.

As always, I add.... "just my opinion", albeit strong!!
Take care and let us know how you're progressing.
Dana

[Jim Scott]

Jimbo:

Thanks for the update and congratulations on your successful Gamma Knife procedure earlier this month.  You seem to be progressing quite well.  Post-radiation swelling that induces some unpleasant symptoms is pretty common with GK but you appear to have that under control with your meds.  If you're working out at the gym, you're obviously doing great. Good job! 

Jim

[Debbi]

Jimbo-

I was so happy to read your post just now!  Very glad that you were able to do GK and that you are done!  We'll now keep good thoughts coming your way for necrosis (oohh, that sounds so technical, doesn't it?)  Heck, Jimbo, I'll just say that I hope the darned thing is dead!

Good luck - let us all know you you are doing as time goes along.

Debbi

[Dana]

Jimbo,
Sorry about my "out of sync" post!  Didn't realize you'd already chosen and had GK.  Just wasn't reading clearly....aargh!
Hope all goes well.
Dana

[jerseygirl]

Jimbo,

Hope you never experience any more side effects and your tumor dies soon!

                    Eve

[mk]

Dr Isaacson does not see any reason for a 6 month post-GK MRI, due to anticipated swelling. He recommends follow-up MRIs after one year, two years and four years; if no regrowth is observed  after 4 years, he does not believe that any further MRIs are necessary, although may be prescribed by others. In the event of tumor regrowth, Dr Isaacson recommends microsurgery. The re-GK option is not yet a viable option at Columbia.

He does not have any published info regarding long-term results, citing “internal politics� at Columbia? He is planning to write a “patient’s decision-making guide� in conjunction with a surgeon. I am seriously considering GK radiosurgery at Columbia at this time.

Jimbo

I just wanted to comment that although there is a big possibility that the AN will swell after GK, this is not necessarily the case. Someone had posted a scientific study by a Japanese group, I believe, who showed that a large percentage, but not all of the tumors swell. Also, I think that the docs in the Cyberknife forum put the swelling probability to about 35%.
Regarding the frequency of the MRIs, different centres have different policies, but also opinions vary depending on the doctors. A 6 month post-GK MRI is pretty much standard. In cases where swelling might be a concern (like mine, given the size), the doctors may even order a 3 month MRI, which I had last week. Fortunately no signs of swelling and the doctor said that everything appears stable 

Marianna

[leapyrtwins]

Jimbo -

it's SO nice to hear from you.

Here I was wondering if you'd made your treatment decision yet, and I find you're already done with treatment!  Guess you decided, huh? LOL

I'm glad to hear, despite your "issues" this weekend, that everything is going well.

Thank you for the update; keep in touch 

Jan

PS - die tumor, die!!! 

[Tumbleweed]

I just wanted to comment that although there is a big possibility that the AN will swell after GK, this is not necessarily the case. Someone had posted a scientific study by a Japanese group, I believe, who showed that a large percentage, but not all of the tumors swell. Also, I think that the docs in the Cyberknife forum put the swelling probability to about 35%.
Marianna

FWIW, Dr. Chang told me there was a 25% chance that my particular tumor (which was 2.1 cm at the time of CK treatment 4 weeks ago) would swell. Dr. Iris Gibbs, my RO, told me that 12 to 15%  of all CK patients at Stanford had tumor swelling in the 6-to-12-month period following CK.

Best wishes to all,
Tumbleweed