looking for warm and fuzzy radiation stories

[Alan R]

Anyone have any good stories about how things turned out for them after the radiation treatment.  Mostly finding horror stories.  Thanks.  Alan-

[Jim Scott]

Hi, Alan ~

Welcome to the ANA discussion forums.  

Many of our members have had positive outcomes with radiation treatment - I'm one of them.

I was diagnosed with a large (4.5 cm) AN in May, 2006.  My neurosurgeon decided (with my agreement, of course) to 'debulk' the tumor, in effect 'gutting' it down to a thin membrane and cutting off it's blood supply, making it amenable to radiation.  That accomplished (with no complications) he gave me a 90 day 'rest period', then I underwent 26 separate FSR treatments  (a total of 27 gy) that were mostly boring and from which I suffered absolutely no ill effects.  Within a few years, the remaining AN had begun to shrink and my last MRI showed definite necrosis (tumor cell death).  My symptoms disappeared within 48 hours of the debulking surgery and, as I've stated I had absolutely no problems with the radiation.  Of course, CK and GK are somewhat different but equally effective and although outcomes can never be guaranteed, many, many AN patients that undergo radiation have very successful outcomes.  I trust that before too long, you'll be reading their posts here.

Jim

[PaulW]

Its only been 3 months since Cyberknife for me.
So far very happy.
Before treatment I was suffering from tinnitus, some hearing loss, balance, some cognitive, as well as tiredness and lack of concentration.
At the moment my symptoms are a bit up and down, but the good days get better and the bad days are less problematic and further apart.

Since Cyberknife, my hearing has improved quite a bit. Especially in loud environments.
I was borderline GR1-2 I am now well and truly back into GR1, and distortion in loud environments is far less problematic.
Tinnitus is maybe a shade worse, but very mild.
Concentration issues in the last few weeks have improved remarkably, and on my good days mentally I feel the best I have felt for 18 months and forget all about the AN.
Balance was a problem before Cyberknife, now its worse, but is more of an annoyance.
As long as I concentrate on what I want to achieve, and put the dizziness and vertigo to the back of my mind I do what I want to do.
I have driven 8000 miles in the last 3 months.. and began driving straight after getting off the plane from the treatment.

Some days it takes a bit to get motivated and get moving, but once I do I feel much better for it .

Very happy with the treatment so far.  

[Alan R]

Thank You all - good to see some positives.  Alan-

[questions?586]

It is hard in some ways knowing so much but in other ways it's comforting.  I really appreciate hearing how everyone is doing since I'm considering radiation as well.

[GRACE1]

Here's some warm and fuzzy for you:  I had GK at Wake Forest University Baptist Medical Center in Dec 2006.  The procedure was a breeze, as was the recovery.  I had no problems.  I went Christmas shopping the evening of my procedure.  I had already lost 40% of the hearing in my affected hear before GK; a year later, the loss was at 80%, with the remaining 20% being distorted.  The hearing loss was not unexpected; it was a possibility.  I go Dec 9 for my 2-yr follow-up MRI. 

Grace

[LisaP]

Hi,

Went for my yearly MRI on 10/25, 8:00 MRI, 10:00 saw doctor, 10:01 found out good news of no growth, 10:15 had copy of MRI CD, 12:00 home from Boston, priceless........

LisaP

WW for another year

[free2be]

Alan,

I understand your feeling like you were only reading bad stuff. That's how I felt too. Then I was told that only 20 percent of patients have post radiation swelling enough to cause severe side effects. With the help of my fellow ANer posts, I realized that people that are doing well don't necessarily hang out and tell how well they are doing, while those who are having issues are seeking help, advice, and solice here on the forum. So...that made sense. The low percentage is a good thing. No one knows how their individual experience after radiation will be, and that is tough, the not knowing.

But, so far, I am pleased with how well I am doing. I'm about a month after CK now. Having some face and head pain, I think because the tumor is close to the trigeminal nerve, but...the other things I was afraid of have been either nonexistent or very minimal.

As far as the actual process, it was easier than dental work, really. Just a bit more unnerving since it's not something we do everyday.

Hope that helps some.
Connie

[ppearl214]

Anyone have any good stories about how things turned out for them after the radiation treatment.  Mostly finding horror stories.  Thanks.  Alan-

Hi Alan and welcome.

You want warm and fuzzy for radio.... well, I am a walking warm and fuzzy!

I had Cyberknife (CK) almost 5 years ago..... they were able to save 100% of my serviceable hearing (which is over 90%) and I was fortunate that I did not have lingering after-affects.  My AN was just a hint smaller than your's and now, almost 5 years later, I'm moving on in life.

Now, that is my warm and fuzzy.  We also don't sugar coat things here.  As with any medical treatments (surgical or radio), there are risks involved, not all have the warm and fuzzy like I do and it truly is a personal decision as to what will work best for you and your particular AN situation.  Please read the "radiation/radiosurgery" forum here as well as the "post-treatment" forum so you can see all the success and not-so-good outcomes.  I personally know of too many success stories with radio AN treatments and a handful of those that did not have as successful treatments.  It truly is a personal decision. Please research all options carefully and go with your gut.... it may steer you in the direction that will work best for you.

Phyl

[Tumbleweed]

Hi, Alan:

I initially had a very strong reaction to CK and was extremely fatigued for about two months. Oddly, my tinnitus improved immediately after treatment and has remained much lower in level (only about 20% as loud on most days) ever since. My balance was about 15-20% worse for the first six months after treatment, and I had one episode of hyperacusis that lasted several days at about the 3-1/2 month mark after treatment. Then, at the 6-month mark, my health began to improve dramatically.

Now, at a little over 27 months post-CK, I feel like I've got my life back. My balance is about 75% improved since getting treatment. My energy level has returned to normal. I've regained around 10-15 dB of hearing in my bass frequencies, although I lost about the same amount in my midrange frequencies. As of my last MRI back in December, my AN had shrunk to where it is now significantly smaller than it was at the time of treatment.

Every patient responds a little (or much) differently to radiation. My initial reaction was a lot stronger than most people experience, and my recovery vis-a-vis balance and tinnitus has also been on the remarkable side. Your mileage may (will probably) vary. One of the most important points my case makes is that a bad initial reaction to treatment does not portend the future. In fact, there is reason to believe that the strong reaction indicated the tumor was dying faster than normal (my MRIs showed unusually widespread necrosis as early as the first follow-up MRI at 5 months post-treatment). Put another way: the worse I initially felt, the more successful the treatment and the brighter the future that lay ahead. I am 100% happy with my outcome and grateful for my CK treatments at Stanford.

Best wishes,
TW

[Anomar11]

Hi Alan,

I knew I wanted radiosurgery.  Would have been happy to go with Gamma knife, but ultimately chose CK to try to save hearing.  I'm 2 years out with 2 yr. MRI pending.  Hearing is not the best, but not the worst.  I don't regularly go for hearing tests as I can't find an audiologist.  Subjectively, it's diminished, but I still think it's ok so that's what matters .  Some fatigue a few weeks after, then feeling fine.  At 4 months out, very bad case of vertigo, with a 12 day treatment of Decadron.  Since that time more balance, dizziness issues started.  Had another bout of vertigo last April.  At 6 months out hemi facial spasms started, then ended about 13 months out.  Started noting significant improvement about 14-16 months.  At this point, 2 years, most of my days are very good.  A little wonky head occasionally, but I've adjusted to it.   Fairly significant tinnitus.  The waiting for MRI's can be emotionally challenging as others have said.  Mine had not settled down in size at 18 months, so this 2 year mark for me is a bit nerve wracking.  Just keep remembering 95-98% success rate, about the same with surgery.  It was the right choice for me, so far quite happy, and I'd do it again in a heartbeat.  Take care.

Mona

[6pick]

Hi Alan,

I had my CK at Stanford October 11-15 this year [about two weeks after Conne (free2be)]. Pre treatment, I read the description "wonky head" and wondered what that was. Three days after treatment, I woke up "wonky" and there was no mistake. But it lasted all that morning then went away. The next day, mid-morning, I had a little more for maybe 30 minutes, conservatively, and no more. I had it once or twice more over the next few days, then - gone. Maybe a couple of times since, but life is getting back to normal as possible, under the circumstances, for me.

As Connie points out, ". . . people that are doing well don't necessarily hang out and tell how well they are doing, while those who are having issues are seeking help, advice, and solice here on the forum."

It's gone very well for me so far post treatment and I'm extremely grateful I had the ability to choose from all three: radio, surgery, or watch & wait (W&W). I chose CK and I know I made the right choice. You might want to check out my thread at the following link. I wanted to contribute something to this forum so I thought maybe it would be helpful for a person about to undergo CK at Stanford to have an idea of what to expect.

http://anausa.org/forum/index.php?topic=13510.0

I sincerely hope it helps and I sincerely hope you find comfort in your decision.

Keep in touch, as you can see, we become family because we support each other and no one else really knows or understands what it's like to have an uninvited "alien" taking up residence in your head. We all want to know how things turn out for you.

Mark

[Alan R]

Wow - thanks to all who have responded.  Its very helpful to know what things to expect after treatment AKA whats "normal"  It should be an interesting ride.  My treatment will take place in Denver on the Trilogy machine late this week or early next.  

[mk]

Coming a bit late in this thread. I had GK two and a half years go. I didn't experience any side effects and didn't lose a single day off work. The treatment appears to have worked up to now, with the AN having remained pretty much stable. Hearing has been declining during the last year - facial numbness which was my presenting symptom has remained unchanged.
You should read Francesco's story at  www.myacoustic.org. He is a forumite who had CK and posted a very detailed account of his story.

I would say that there are more success stories than horror stories.

Good luck to you.
Marianna

[Tumbleweed]

My treatment will take place in Denver on the Trilogy machine late this week or early next.  

We'll all be pulling for you, Alan! Better days lie ahead for you!

Best wishes,
TW