Author Topic: Guess what I got for my birthday . . .  (Read 7329 times)

6pick

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Guess what I got for my birthday . . .
« on: July 19, 2010, 06:35:35 pm »
My "Alien" (from the movie of the same name  :D) was diagnosed right around my birthday of this year. It is approximately 1.7 X 2.5 cm at the CPA with tail extending into the left auditory canal. Now I am trying to make the decision. My research has brought me to either translab or CyberKnife.

According to Dr. Nikolas Blevins at Stanford, if I do the surgery, I'm looking at an all-day event with 24 to 48 hours in ICU followed by 3 - 5 days inpatient and a few months of recovery. In fact, it would be a good piece of information from Forumites to learn about recovery time. Anyone care to share? When I left Dr. Blevin's office, he handed me what appeared to be a chapter from a medical book written by Drs. Robert Jackler and Marcus Pfister. It was a bit of a tome, but I feel I got the good, the bad, and the ugly.

I've also spoken with Dr. Iris Gibbs, also of Stanford re: the CyberKnife. Unfortunately, I wasn't able to get the depth of information from her that Dr. Blevins gave me. Perhaps I can fill in the blanks on this forum. I believe she told me that I'd have three, 30-90 minute sessions of radiation treatment. When I asked her about "collateral damage" she seemed to say that there was virtually none; that the risk was about 2% with either option (CyberKnife or surgery). It all sounded really good for radio until, when I asked her for data to take home to read, she handed me her department's P.R. CD and brochure. Not very informative in my opinion, so I'm just as confused as ever. Please, I'd like some good, bad, ugly. I've read some of your posts and have gotten that some have experienced nausea, vertigo, disequilibrium, hearing loss (although in my case, the latter two are already gone).

Thank you for your input and replies,

Mark

PS: I'll be copying this post to the microsurgery topic to see what experiences were had on that board.
5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change

free2be

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Re: Guess what I got for my birthday . . .
« Reply #1 on: July 19, 2010, 09:01:04 pm »
Mark,

I'm pretty new at this; in the decision making process myself. Your tumor is larger than mine and so I wouldn't even venture to compare. I have gone back and forth some in my decision between the two. There seems to be a lot of positive posts about Stanford and cyber knife. There's lots of information as you explore the site. Use the search function from the main page and you'll find lots of references to cyber knife (or CK). And there is a cyberkife site too. They have docs that will answer questions (vaguely since they don't see you). I'd have to find that link; it is referenced on the forum a few places.

Sorry you got such a lousy birthday gift. I think I'd try exchanging it for something else! You found a great place for info and support. Hang in there.

Connie
Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

6pick

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Re: Guess what I got for my birthday . . .
« Reply #2 on: July 20, 2010, 10:43:53 am »
Thanks, Connie,

Yeah, it wasn't on my birthday present list, but I try to think of my situation as a blessing. The tumor is typically benign, I still have one very good ear, it's reminded me of how many people care about me because so many have offered their support, this isn't immediately life threatening so I have time to research it, I'm lucky to be so healthy in so many other ways . . .  The blessings just go on and on.

I also have this going for me: my brother has some connections with a "top drawer" hospital on the east coast. Through a dental patient of his, he has pursued an opinion from an internationally known authority on the Proton Cylclotron. The opinion that the good doctor rendered yesterday was: surgery! Whoa . . . from a radiologist no less.

As I've said, I have some time, so I've been reading online and off. I'm very, very lucky.
5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change

RAB

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Re: Guess what I got for my birthday . . .
« Reply #3 on: July 20, 2010, 04:14:47 pm »
I got my diagonosis on my son's birthday and I thought that sucked!  At least you have a good attitude about it.  Stay positive.  Do your research and take your time.  Whatever you choose, you will be fine.  Good luck.

Rosemary :)
1.8 x 1.2 x 1 AN right side. 
Diagnosed 10/1/08
Gamma Knife 6/4/10
Penn Medicine-  Drs. Judy, Bigelow, Alonso-Basante

Jim Scott

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Re: Guess what I got for my birthday . . .
« Reply #4 on: July 20, 2010, 04:17:51 pm »
Hi, Mark ~

I think that your 'birthday present' is one you wish you could return for a refund - but I admire your approach to the challenge, including your attitude and the research you're doing.  I wish every newly-diagnosed AN patient was as diligent in seeking a full range of options.  However, I have to caution you on avoiding the dreaded 'AN information overload' that can come with too much research in too short a time-span., rendering you confused and directionless.    

I have to agree with Dr. Blevins that an 'all-day surgery' (mine lasted just under 9 hours) with 24-48 hours in ICU and a 3-5 day hospital stay is average.  That was my experience.  I was in ICU longer due to a bed shortage but was discharged exactly 5 days after I was admitted.  'A few months' for recovery is a tad ambiguous but not really incorrect.  Most AN post-op patients return to work within six weeks.  Three months would be a fair estimation for recovery.  The first few days at home are spent napping but as your strength returns, you'll do more and more.  All this assumes a complication-free surgery, of course, which is the norm but cannot be guaranteed, of course.  

Radiation treatment, being non-invasive, carries no overnight hospital stay and a much faster recovery, although, again, it's not guaranteed to be without some risks.

Ultimately, the decision rests with you, alone, as you well know.  Frankly, it's a bit of a gamble but one that, eventually, you'll have to take.  We all want an excellent outcome and do what we can to assure that- but nothing is guaranteed.  That's the tough part.  The good part is that you have a benign tumor and it is treatable.  Most AN patients have a good outcome.  I'm one of those, and I underwent both surgery (retro) and radiation (FSR) in a pre-planned attack on my unwanted, large AN.  So far, I seem to have won the battle.  I expect that you will too.

Jim

  
« Last Edit: July 20, 2010, 04:22:20 pm by Jim Scott »
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

6pick

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Re: Guess what I got for my birthday . . .
« Reply #5 on: July 20, 2010, 05:41:50 pm »
Rosemary: I think I would have hated getting the diagnosis on my child's birthday way more than on my own. What a bummer.

It was really crazy getting the MRI news from the doctor. You know, "It'll continue to grow and put pressure on the brain . . .  We can W&W, extricate, or nuke it but you'll have to do something" (more my interpretation than his words). I said something like, "But my hearing and balance will return to normal after the surgery, right?", "No, and no."

So I took a short look at this (because there was only one worthy choice) and decided that life is moving forward and I'm just going to hear it in mono and that's a whole lot better than none. I'm a lucky man, life is good! :D.


Jim: Thanks for verifying my information and I WILL guard against ANIO: "AN information overload". While it's become apparent that everyone has a story about their experience, it's uniquely their story and I'm grateful they tell it. I hope mine is pretty boring but I'm happy to tell it if it will help someone. Still, I am grateful you remind me that "Most AN patients have a good outcome." because it helps keep me grounded throughout the research. I've enjoyed your posts all over this board. You always impart wisdom, support and enlightenment and it seems you take Plato's quote to heart. Thank you.
5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change

Tisha

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Re: Guess what I got for my birthday . . .
« Reply #6 on: July 22, 2010, 07:06:52 am »
Hi,

The reasons I chose radiation was for hearing preservation (which you don't have, so that's not an issue), and I wanted a higher chance of not having facial paralysis.  That was very important to me, but I don't know how important that risk is to you.

There is nothing that is risk free.  The bad is that it is just an unknown, and everyone is different.  16 months post-ck, I started experiencing nystagmus (eyes go back and forth quickly).  Steroids stopped it, and I'm doing much better.  Doc said it's from post CK swelling and should stop eventually.  The "bad" is that it might not work.  The tumor will still grow...but that is just 2%. 

There's really nothing bad in my opinion about CK as an option.

Tisha
1.7 x 1.0 x .9 cm (diagnosed Oct 2008)
1.8 x 1.2 x 1.1 cm  (July 2010-swelling)
1.5 x .9 x .9 cm  (Mar 2013 - 5 yr MRI)
Cyberknife at Stanford, week of 1/12/09 -  Drs. Chang and Soltys

6pick

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Re: Guess what I got for my birthday . . .
« Reply #7 on: July 22, 2010, 02:54:50 pm »
Thank you, Tisha,

I'd love to regain my left side hearing, and I am going to continue to emanate good vibrations that it will return even if the odds are agin' it. The MRI report states, "impression is made against the left pons without appreciable edema". I believe that means my little alien is resting against my brain and even though it's not pushing right now, when swelling after radiation occurs, well, I'm not in favor.

I'm also aware of the risk that the good surgeon might hiccup (figuratively speaking, of course) at just that moment when he's working around my facial nerve. It's not a risk I like, either. Truth is, I do not relish the prospect of someone opening up my skull for any reason. It just kinda creeps me out :o, know what I mean?

Still, if the options were simple, this site might not exist. I truly appreciate your help and contribution and hope my experiences can help someone, too.

Keep in touch.
5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change

free2be

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Re: Guess what I got for my birthday . . .
« Reply #8 on: July 22, 2010, 07:22:50 pm »
The MRI report states, "impression is made against the left pons without appreciable edema". I believe that means my little alien is resting against my brain and even though it's not pushing right now, when swelling after radiation occurs, well, I'm not in favor.

Mark,

This is my primary question now also. I am leaning strongly toward CK, but since my AN is also very close to the brain stem I am now questioning what the impact of the swelling from radiation will be on the brain stem.

Tisha, did the doc say your eye issue was related to the brain stem or is it the nerve to the eye? I think the brain stem involves more primary organ functions and not the eyes, specifically. I don't know; sometimes the more I learn the less I think I know. Ya know?

Connie
Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

Vivian B.

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Re: Guess what I got for my birthday . . .
« Reply #9 on: July 23, 2010, 08:46:00 am »
Hi Mark,

I have the same type of tumour as you in the CPA area, which they have diagnosed as a meningioma rather than a neuroma because it extends from the CPA angle. In any case, the same pathology. Mine is approx. the same size as yours and I just had GK in Toronto Canada. The decision is difficult to make. However, you have to remember that with these types of tumors the guarantee of complete removal, regrowth or stopping of the growth are not 100% guaranteed. Having said that, you need to be comfortable with the decision that you make for yourself.

I myself was happy with the whole GK experience, of course a little hesitant at the beginning and stats. have proven 90-95% effective. My neurosurgeon had recent stats from his clinic as GK is fairly new in Canada, and he said that the success rate is better than they had expected. Keep in mind that with either procedure, you will require to have MRIs periodically. As you get more familiar with your options, you will reach a decision. As all of this could be quite overwhelming, sometimes you have to step back before you can continue to follow through with decision making.

Vivian
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

jsmith3151

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Re: Guess what I got for my birthday . . .
« Reply #10 on: July 28, 2010, 10:05:30 am »
I am new to this page, sure wish I knew about you all last summer when I finally was told what was wrong with me (right vestibular achwannoma 22 mm).  My best advice is to find a doctor you are comfortable with and believe in - that is the most important thing.  My mantra became - "It is what it is".  I had no choice, surgery was the only solution. (Tufts, Boston, MA with Dr.Carl Heilman)  Operated on Wednesday home on Sunday - kind of like "drive-thru" surgery.  Good luck

Jane
age 55  2.2 cm AN - right side. Retrosigmoid surgery 10/28/09.  Total loss of hearing on right side

ferguson75205

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Re: Guess what I got for my birthday . . .
« Reply #11 on: July 28, 2010, 02:26:03 pm »
Not to further confuse or overload you with info, but I think you might find that some research on proton therapy will also be beneficial as you weight options and tradeoffs.
Steve

72 years old; left side AN (.94 cm) diagnosed with MRI 4/10/10; moderate hearing loss and speech recognition issue; Watch & Wait; October 2010 MRI revealed tumor growth (now 1.2 cm); slight equilibrium issue (motion related). Started proton therapy at LLUMC on 1/28/2011; finished 3/9/2011

6pick

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Re: Guess what I got for my birthday . . .
« Reply #12 on: July 28, 2010, 10:04:11 pm »


I also have this going for me: my brother has some connections with a "top drawer" hospital on the east coast. Through a dental patient of his, he has pursued an opinion from an internationally known authority on the Proton Cylclotron. The opinion that the good doctor rendered yesterday was: surgery! Whoa . . . from a radiologist no less.

As I've said, I have some time, so I've been reading online and off. I'm very, very lucky.


Steve, the radio choice definitely has some very appealing factors; 3 days of outpatient treatment, no ICU, no hospital food . . .  However, you've got to stand up and take notice when a Radiation Oncologist says, "Cut".

There's no question I'm ping-ponging this decision. Right now, I'm leaning toward surgery but it could change in two days when I see the Neurosurgeon, Dr. Chang, on Friday. I really don't expect him to take sides, but you never know what might be said.

Tisha, I'm also interested in Connie's question since a surgery would be foolin' around near that nerve.

Connie, from what I've been reading, it takes a while for that little bugger to shrink if it's going to, so it's nudging the brain stem all that time. Not appealing to me.

Jane, good mantra. It's exactly how I feel about losing my left side hearing. I'm not happy, but it is what it is.
5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change

free2be

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Re: Guess what I got for my birthday . . .
« Reply #13 on: July 29, 2010, 11:03:30 am »
Tisha, I'm also interested in Connie's question since a surgery would be foolin' around near that nerve.

Connie, from what I've been reading, it takes a while for that little bugger to shrink if it's going to, so it's nudging the brain stem all that time. Not appealing to me.

I'll add a couple of things since I had a consult with a radiation oncologist and a neurosurgeon last week. A couple of things the radiation doc said were that fractionated would be safer near the brain stem (mine being "closer than most" that they do one dose on). He also said, which surprised me and I posted a separate thread about, that only 20% of patients have swelling significant enough to cause an increase in symptoms. He didn't seem concerned about that with my tumor's location. I will add that he is not my first choice, nor is his type of radiosurgery (LINAC). I'm still leaning toward CK, hopefully with Chang at Stanford...waiting to hear from them...impatiently.

Secondly, I will add a couple of things the surgeon said that closed the deal on NOT having surgery for me, which I wasn't for from the beginning. One, and this shocked me, HE said, there is a 20% chance of regrowth...residual microscopic cell clusters that can regrow. That's 15% more chance of regrowth than with radiation. Plus, he mentioned the chance of meningitis from opening the brain to the world, possible CSF leak and "if" then a second surgery...to fix that, and the stomach fat graft and soft spot in my head afterward. I didn't feel like he was trying to scare me, but just putting his facts on the table. I actually liked him, for what that is worth. On top of that he said if it were him and he wasn't a surgeon (thereby his balance being of the utmost importance), he would do radiation. But, I can't see going through ALL that with all those risks and possibilities and losing my hearing and still have a bigger chance it would grow back. I just left thinking, "and so why would I do this"? Granted, my hearing is still good, but all that is just too much without a better chance of control. I know there are risks and concerns with CK, but there is no "good" choice...but as you all said, whatever it is, it just is and we have to deal with it the best we can.

I will definitely ask Chang, or whomever, about the radiation and the brain stem, but right now the shorter 3-5 fractionated CK sounds the best to me.

We're all different with different responses and different priorities; I guess if this were an easy clear cut decision, we wouldn't need the forum.

Best to all,
Connie
Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

ppearl214

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Re: Guess what I got for my birthday . . .
« Reply #14 on: July 31, 2010, 07:01:33 am »
Just to add my 2 cents worth.... I have met Dr Blevins (next time you see him, tell him Phyllis from last year's ANA symposium says hi... he'll know who) and actually introduced him in during one of the workshops at the symposium re: surgical procedures. I sat in and listened to what he said and would not hesitate in using him to treat.  Dr. Gibbs has a fantastic reputation and wouldn't hesitate there as well. Regardless of which decision you make... make it from the gut.... based on your unique AN situation and personal backround.  With either of these AN treating docs, you are in terrific hands....... go with your gut.

Phyl
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