ANA Discussion Forum

Treatment Options => Radiation / Radiosurgery => Topic started by: StopAN1 on October 14, 2019, 06:12:31 pm

Title: Thanks so much, as I'm about to start my journey.
Post by: StopAN1 on October 14, 2019, 06:12:31 pm
I wanted to thank everyone on this forum for sharing their personal radiosurgery stories!  They have been so helpful as I realize I'm not alone. Your stories have both comforted me and scared me, as I was diagnosed with a relatively small AN back in June. I've read countless articles about AN's, brain anatomy, treatments, research papers, and sought multiple respected opinions - including being evaluated by the teams at NYU Langone and NY Columbia Presbyterian. Everyone's situation is different - AN size, growth rate, location, symptoms, age, etc., so the course of action is very personalized. Nearly impossible to find meaningful data that matches your exact situation, so radiosurgery requires a leap of faith. That's why reading your stories was so helpful in seeing the range of possibilities from those who experienced the treatment and the continuing aftermath. The support you've given each other has been emotionally moving. I feel like I know several of you already!

My AN is small, 5mm nearly round, but it's located within 1.5mm of my cochlear. I'm in my early 60's. My hearing in the AN ear has tanked in the past few years, to profound loss above 1K hz with roaring tinnitus. Speech recognition at 60% so my goal is to preserve as much as possible, as if I do nothing, I was advised that there's extremely high likelihood of losing hearing completely, and relatively soon at this rate. Had a scary balance issue that sent me down the path of ENT, neurologist, and MRI, as that was the wake-up call that something was wrong. No balance issues since, and maybe in a good way, my vestibular nerve is shot (one of the docs pretty sure this is the case based on my account of the incident) and I've recalibrated to life without it.

So after a lot of thought, decided to go with Drs Sisti/Wang at Columbia for GK treatment later this month. The potential for using the fractionated approach is what tipped the scales, to hopefully minimize side effects with smaller individual doses, as I'm at risk of further hearing decline from radiation "leakage" due to the AN's proximity to the cochlear, however, with good potential to salvage useful hearing vs doing nothing at all.  What scares me the most is not knowing the dosage/# treatments plan until initial treatment day (could be 1-5 treatments), and lacking conclusive data on effectiveness and side effects.  That's where the leap of faith is, as this is really cutting edge and all of us are data points for future folks that go down this path with their AN treatments, especially the long term effects.

So that's my background as I embark on this journey. I'm scared about the unknown aftermath, especially after reading about issues several of you have gone through (I feel so bad for y'all!), but also glad to know the treatment has a high likelihood of stopping the AN in its tracks, with a potential positive hearing outcome and minimal side effects.

If anyone here has experience with the NYC Columbia GK team or know someone that has, your comments on the experience and tips would be helpful. The upcoming mask approach will be interesting to say the least!  And to all, your comments/feedback appreciated.  Thanks in advance!
Title: Re: Thanks so much, as I'm about to start my journey.
Post by: gary.s on October 17, 2019, 03:25:57 pm
Hi StopAN1,

Sounds like you have been doing your homework and getting informed about ANs. I am not sure if I understood what you were saying correctly. Gamma Knife is not fractionated, it is Cyber Knife that is a lower individual dosage with 3-5 sessions. Gamma Knife is usually one session.

I have lost my hearing on the AN side completely now, just some crackling sounds at times. Tinnitus comes and goes, I get dizzy a few times a week, and fatigue at times. I am now 1 1/2 years post Cyber Knife and I have become very accustomed to dealing with the ongoing symptoms. Just have to be strong.


Title: Re: Thanks so much, as I'm about to start my journey.
Post by: StopAN1 on October 18, 2019, 08:32:41 am
Thanks Gary for the response. Sorry for the confusion. I’m set up for treatment at NY-Presbyterian’s Gamma Knife Center, but it will be administered in 1-5 sessions.  I won’t know the number of treatments until the MRI results are in and the dosage plan determined. Sounds like I need to call this Cyber Knife rather than Gamma Knife if the lower multiple dose plan is implemented. Thanks for pointing this out. I missed that with all the research!

Sorry to learn you’ve lost your hearing on the AN side and have dizziness, but also good to see the tumor has been changed to necrosis stage a few months ago.
Title: Re: Thanks so much, as I'm about to start my journey.
Post by: bfoley on October 23, 2019, 10:56:46 am
StopAN1 - Wishing you every success in your treatment plan!  Please keep us updated as to how your treatment goes and what happens with your symptoms.  Sharing is the best part of this board!
Title: Re: Thanks so much, as I'm about to start my journey.
Post by: StopAN1 on October 23, 2019, 06:52:18 pm
Thanks bfoley. My adventure starts Monday morning, so I'll post updates here.  I'm most anxious about what the high resolution MRI will show with respect to tumor growth and precise position and then the ensuing dosage plan of attack, and of course...the risks/side effects. A lot of thoughts swimming around my mind at this point!  Many of you have gone through this, so good to know this community is here!
Title: Re: Thanks so much, as I'm about to start my journey.
Post by: StopAN1 on October 30, 2019, 11:05:34 am
My journey has officially started - I had my Gamma Knife treatment on Monday at NY-Presbyterian, nearly 48 hours ago. The MRI and GK procedures went smoothly, aided by a dose of Ativan prior to the MRI to take the edge off.

To recap, my AN was relatively small (approx. 6x4.5x4mm), jammed in the entrance to the IAC and extremely close to my left side cochlea. My hearing baseline from last week was profound hearing loss above 1K hz and speech recognition at 52% (these were moderate loss 2 yrs ago and 96%, so hearing was falling off a cliff from the AN). I had a severe balance episode 4 months ago, with high likelihood of losing blood supply to my vestibular nerve and killing it; had minor balance issues prior to the incident and no balance issues since. Goal of the treatment was to stop the tumor growth (especially with the possibility of pressing against the cochlea) and preserve as much of what's left of my hearing. Loud tinnitus in the AN ear prior to treatment.

The post MRI calculations and analysis resulted in a one dose treatment of ~11.5 gy. Multiple lower doses were judged to be too risky of hearing loss due to the close proximity of the cochlea.  The GK procedure itself was a breeze. The frameless mask was just mildly uncomfortable - I didn't dare try to test if I could move! There was a ~5 minute scan to verify my head position relative to the MRI, and then 15 minutes of GK which went by smoothly as I listened to my requested Pandora channel, Pink Floyd, to fit the mood, especially with the song Comfortably Numb and Time as the minutes counted down LOL.  The Drs Sisti/Wang team was fantastic - very confident, competent and empathetic; keeping my wife and I well informed. In fact, they let my wife stay in the control room during the procedure, allowed her to take photos, and explained each step they took, as they verified head position, pinpointed the target and conducted the radiation.

I had no after-effects rest of the day other than needing a 30 minute power nap to unfog from the Ativan. Enjoyed a NYC afternoon and early evening. I felt very slight pain behind my AN ear prior to going to sleep. Took Tylenol as a preventative and to my amazement, slept longer than I had in many years - 9.5 hours straight, as I was exhausted from all the stress leading up to this and relieved that this initial step was done!

Yesterday though, a post-symptom started. Intermittent headache behind my AN ear until mid afternoon and constant pain rest of the day. I rate it a 4-5/10 on the headache scale prior to going to sleep. Took Tylenol in the afternoon and at night to take some of the pain away.  Woke up 4am with more intense pain - 8/10 localized to behind the AN ear - a bit scary. Took Tylenol again to knock it to 5/10; took awhile to get back to sleep.

Spoke with the GK center nurse this am, switched to Alleve and pain down to 2/10 within an hour.  In retrospect, I should have been taking the anti inflammatory Alleve instead of Tylenol to address swelling yesterday. If pain is back to more intense tomorrow morning, they will likely prescribe Prednisone.  Other than the headache, no balance issues, and just a tad foggy, as I'm at the 48 hour mark post treatment.  Tinnitus and hearing the same as prior to treatment.

So this is my state at this early point - I hope you don't mind all the details, but if this helps someone else down the road as your stories have helped me, I'm glad to share. From what I've read here and from other sources, my headache is common, so I'm OK with this, but a bit anxious about the path that follows, as I know this is a journey that can have sudden twists and turns.  I'm curious if anyone else here had a similar positioned AN and how their journey has been.
Title: Re: Thanks so much, as I'm about to start my journey.
Post by: notaclone13 on October 30, 2019, 01:34:38 pm
The newest Gamma Knife model, the Icon, uses a mask rather than the screw in frame. Using the Icon, radiation can be administered in multiple sessions rather than just one. I found this article about Dr. Sisti and his use of the GK Icon.

He specifically mentioned that he uses the Icon on Acoustic Neuromas, and prefers to do it in multiple sessions.  Your situation was unique StopAN1, being that it is a small tumor and very close to the cochlea, it makes sense to give the radiation in a single treatment.  I hope you experience minimal swelling and are able to save usable hearing.
Title: Re: Thanks so much, as I'm about to start my journey.
Post by: StopAN1 on October 30, 2019, 04:28:30 pm
Thanks notaclone13 for the well wishes and providing the background and link describing the Icon and Dr Sisti’s work, especially if others here are seeing this for the first time.  That was the precise article that led me to seek his evaluation and ultimately the treatment at NY-P. 

The AN’s position made this a day of treatment call on 5 or 1 doses. The calculations following the MRI indicated less cochlear exposure in one 11.5 gy dose than five 5 gy doses.  Apparently, there’s 5% error possible with each dose and with 5 doses, the potential cumulative exposure would have been greater than the 1 dose exposure. I learned today from the radiation oncologist’s report that my cochlea was hit with ~1 gy, which was within guidelines that were deemed safe enough to avoid being in the high risk (50%-70%) category of losing my hearing (I would have needed to sign a high risk waiver prior to treatment otherwise).

Headache has remained mild since the Alleve earlier today, so hoping this doesn’t worsen tonight!
Title: Re: Thanks so much, as I'm about to start my journey.
Post by: bfoley on October 31, 2019, 07:20:51 am
Thanks for the treatment detail notaclone13!  When I had GK at Mayo, I was given a dose of steroids after the treatment.  So post GK I felt great.  I was warned that swelling (from the tumor dying) would likely occur beginning around 6 months.  Also, they no longer do a post GK MRI at 6 months, as it shows swelling, which is expected.  I'm kind of freaked out at its 3 1/3 months since GK and symptoms for me seem to be exacerbated, making me think the swelling has started (or the tumor is still growing).  I was told to call for a rx of steroids if symptoms got bad.  Wondering how bad they need to be, and I do NOT like the side effects of steroids.  Were you given any warnings about swelling and timeframe?  Given any advise on what to look out for? 
Title: Re: Thanks so much, as I'm about to start my journey.
Post by: StopAN1 on October 31, 2019, 07:43:04 am
Sorry to hear about your current symptoms bfoley, and hope you get relief.

I was also advised that no need for the 6 month MRI, but instead, at the one year mark. I didn't get the explanation, but have a follow-up call later this week and will ask for more detail on this and the swelling expectations. What you explained about skipping the 6 month MRI makes a lot of sense.

I was a bit surprised as well as my PCP that I wasn't given steroids to prevent the initial swelling, but the GK nurse practitioner indicated they hold off on it due to the side effects, as you referenced, and it's a judgement call based on whether or not anti inflammatories alleviate the headache enough. Nearly 72 hours out and I still have a headache, but it's leveled off to a 2/10 on the pain scale.  If I was to do this over, I definitely would take on the steroid side effects to prevent swelling, as I'm fearful the swelling does some permanent damage.
Title: Re: Thanks so much, as I'm about to start my journey.
Post by: StopAN1 on November 08, 2019, 04:46:28 pm
Quick update - following my last post on Day 3 post Gamma Knife, my headache worsened and I started taking a steroid pack early that evening.  A few hours after the maximum dose, my headache significantly improved. By the next morning and ever since (I'm at Day 11 now), no headache, so I'm pleased to get through this early checkpoint. No significant new symptoms vs pre GK.
Title: Re: Thanks so much, as I'm about to start my journey.
Post by: StopAN1 on January 01, 2020, 08:24:28 pm
I'm now 2 months post GK and so far everything is going OK. Had audiogram/speech recognition tests just before treatment and again a week ago and my AN side hearing is the same (~50% speech recognition). No change in the loud tinnitus before/after. No balance issues.  The only side effect were the headaches I documented for the first 3 days until I took a 6 day pack of prednisone that knocked that out quickly. 

I had an informative follow-up with Dr Sisti, in which he went over all of the details from the GK treatment report, including the machine settings, radiation profile, calculated exposure risks, etc.  I thought it was important to understand exactly what was done, as I was a bit foggy during treatment due to the Xanax :).

Overall, encouraging that there was no immediate radiation impact on hearing, so now on to the next hurdle to see if in the coming months any swelling related side effects.  Dr Sisti informed me it could take 1-2 years to verify the AN has been killed off, so I need to stay positive as I progress through this journey!  I'm very pleased at my experience with Sisti's team at Columbia Presbyterian, before, during and post treatment thus far, especially with how transparent and patient they've been with answering the dozens of questions I've had to date!
Title: Re: Thanks so much, as I'm about to start my journey.
Post by: StopAN1 on February 27, 2020, 09:32:12 am
A few days after my 2 month update, I took a flight for the first time post GK (3.5 hrs to the Caribbean) and experienced balance issues the next day while paddleboarding in calm conditions, and periods of extreme fatigue, similar to jet lag, several times over the next 3 days despite being in the same time zone.  My wife and I are both expert paddlers, and she had no issues at all in the same conditions while I struggled, so that was out of the ordinary for me.  Flew home a week later, no balance or fatigue issues afterwards.

This week, 4 months post GK, I'm experiencing brief, 1-2 second spurts of mild dizziness, several times a day.  No AN side headaches.  What is very coincidental - last Friday I flew to Fla for a long weekend. I was fine for 3 days. On the 4th day, the dizziness started, a few hours before flying back home. I've now had dizzy spells for 3 days since returning.  No AN headaches or fatigue.

So with very limited sample size of two air travel trips, I'm trying to figure out if flying brings on the symptoms of a swelled tumor....or am I now in that 4 month+ window of swelled tumor symptoms.  If my current dizziness goes away in the next few days it's likely the flying effect.  Next Tuesday I'm on another airline trip, so I'll watch closely before and after flying and note any symptoms.

Has anyone else noted any dizziness or other symptoms post GK treatment after flights?
Title: Re: Thanks so much, as I'm about to start my journey.
Post by: kestes on February 28, 2020, 11:10:30 am
Hi, I am 16 months out of GK and had no issues flying at all BUT around the 5-6 month mark had the dizziness episodes no matter what I did, they were brief but several times a day and literally for no reason - just like a spasm or something  would only last for a minute or so but I literally would have to stop let the "spasm" calm down and then finishing whatever I was doing.  Finally around the 12 month mark the dizziness is very limited sometimes does not even happen on a daily basis.  My tumor is in the "swelling" stage but maybe it is more stable now.  Will go in May for my year and half mri, my doc checks every 6 months.

Now, I still have daily tinnitus which is very manageable, I have about 50% hearing loss and I do have balance issues if I am not careful, will just be life with this tumor but it is all manageable! 

Hope things get better and hang in there these next couple of months!   Kimberly
Title: Re: Thanks so much, as I'm about to start my journey.
Post by: StopAN1 on February 28, 2020, 11:41:25 am
Thanks Kimberly for sharing your experience.  I may be entering that phase at this point, although a little earlier than you.  I'm getting similar "spasms" - a good way to describe it, although mine briefer. Watching certain motions also making me dizzy - such as watching my fingers type on the keyboard right now LOL. 

My tinnitus is the same as pre-CK, which is quite loud. Thankfully, so far, I've had no change in my ~50% speech recognition.

Good luck with your journey Kimberly and hope your next MRI shows the swelling stage is over.
Title: Re: Thanks so much, as I'm about to start my journey.
Post by: jami on March 03, 2020, 07:32:54 pm

(StopAN1 - love the name. After my surgery my password was similar G3tThisAN! for a while)

I had CK, about 6 months after surgery. In the surgery they removed both the hearing and balance, so my story is a bit different.

BUT - i travel a LOT for work. A lot. This year I have been to Japan, Poland and India already.

The very first flight i took i had horrible headaches, and really struggled with resting. Its a bit better now, as long as i make sure I am rested and stress free. No new issues with balance (my new normal is that balance is a challenge, due to the surgery) when traveling. The tinnitus is super loud on the planes, and I use noise canceling headphones all the time.

Hope you both do well!