Author Topic: One-year update on 2.7 cm AN and CyberKnife treatment  (Read 1103 times)

triplewave

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One-year update on 2.7 cm AN and CyberKnife treatment
« on: December 08, 2018, 08:45:46 pm »
Last September I was diagnosed with a 27x20x20 mm left AN after experiencing a temporary partial hearing loss. I was 30 at the time. My hearing returned after a week (during which I took prednisone), but some tinnitus remained. After the diagnosis I also started noticing numbness on the left side of my tongue.

I decided to be treated with CyberKnife at Stanford with Dr. Chang after a month of research and soul-searching.

After the treatment, my tinnitus became a little more consistent and slightly different in character. I experienced stabbing headaches near the tumor occasionally for a week after treatment, but they subsided quickly.

My hearing has remained at what feels like 80-100% (my latest audiogram indicates that it is less than 100%). It’s difficult to understand what people are saying in loud rooms, and the tinnitus is noticeable in quiet rooms. The tinnitus has been less annoying than I feared, and sleeping with a white noise machine helps a bit.

For most of 2018, I also consistently experienced slight facial twitching after each set of heavy squats or deadlifts (I'm an advanced powerlifter), but this hasn't happened in the past few months. My left eyelid, corner of my left eye, and/or left upper lip would twitch subtly but uncontrollably, which was definitely concerning, but not enough to convince me to stop lifting :).

The left side of my tongue is still numb to varying degrees, but I barely notice it unless I consciously think about it. It doesn’t affect taste, just sensation.

My one-year MRI showed that the tumor is about the same size, but with black areas indicating necrosis. So far I feel fortunate that it has not had a terribly negative or disruptive effect on my life, and feel good about the decision to go with CK at Stanford. Going through this has also strengthened my character and inspired me to approach life in a more meaningful and confident way.
9/3/17 - Left hearing loss. Returned in 3 days
9/17/17 - Left hearing loss. Prednisone. Returned in 5 days
10/5/17 - MRI detected 25x18x18 mm left AN (age 30)

Stanford CK with Drs. Chang & Pollum
11/22/17 - MRI reads 27x20x20 mm, but stable
11/28-30/17 - CK treatment

11/30/18 - Signs of necrosis

SP

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Re: One-year update on 2.7 cm AN and CyberKnife treatment
« Reply #1 on: December 09, 2018, 03:11:19 am »
Hi triplewave,

One year down and it's good news -- great to hear! I'm glad the symptoms you experienced were transient :) I'm nowhere near a power lifter, but I can say since I started back at the gym with weight training over the last few months, my wonky head symptoms have gotten better for sure. I believe physical activity is a plus for recovery.

best of fitness and health to you,

Stella

2.9 x 2.9 x 2.5cm Left AN (May 2020) @5yrs
2.9 cm (Mar 2019) @4yrs
2.9 cm (Aug 2018) @3yrs
3.1 cm (Aug 2017) @2yrs
3.2 cm (Aug 2016) @1yr
3.2 x 3.0 x 2.5cm Left AN (Aug 2015) ===> CK @ Stanford, August 17 - 19, 2015 (Drs. Chang & Soltys)

DodgeAU

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Re: One-year update on 2.7 cm AN and CyberKnife treatment
« Reply #2 on: December 11, 2018, 06:01:06 pm »

I decided to be treated with CyberKnife at Stanford with Dr. Chang after a month of research and soul-searching.


Thanks for sharing your 1 year progress, Triplewave. Sounds like you're CK is very successful.

I'm on my first 6 months observation have not decided yet on active treatment.

I also go to gym regularly for work out, do you know if these workout supplements are bad for the AN?

How's your overall experience with the CK procedure?

cheers
Oct 2019:  12x7 mm
                 Watch mode
Mar 2019: 7.5x5.5 mm              
                Watch mode
Aug 2018: Diagnosed 6x4x4 mm AN left
                Severe hearing loss and mild tinnitus

Alyssa

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Re: One-year update on 2.7 cm AN and CyberKnife treatment
« Reply #3 on: December 11, 2018, 11:27:54 pm »
I have 11 year WW since 2007, I have to decide and go for surgery in September this year. It grows slowly from 8mm to 13mm and eventually my left hearing almost gone.

So far so good to recovery from surgery...


I decided to be treated with CyberKnife at Stanford with Dr. Chang after a month of research and soul-searching.


Thanks for sharing your 1 year progress, Triplewave. Sounds like you're CK is very successful.

I'm on my first 6 months observation have not decided yet on active treatment.

I also go to gym regularly for work out, do you know if these workout supplements are bad for the AN?

How's your overall experience with the CK procedure?

cheers

triplewave

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Re: One-year update on 2.7 cm AN and CyberKnife treatment
« Reply #4 on: December 12, 2018, 01:09:43 am »
Quote
I also go to gym regularly for work out, do you know if these workout supplements are bad for the AN?

The only supplement I take for lifting is creatine. I haven't noticed any effect of taking creatine on my symptoms.

For general health I take curcumin, krill oil, sulforaphane (via broccoli sprouts), vitamin D, and garlic extract. I haven't observed any effect of these supplements on symptoms or tumor size either.

Advil is always useful for the headaches.

Quote
How's your overall experience with the CK procedure?

Going through the procedure was easy and anticlimactic. Getting the MRI and CT scan before the radiosurgery was more uncomfortable than the treatment itself. I felt like I ought to stay as still as possible during the MRI to make sure the model would be accurate.

It does require a lot of trust in the team designing the treatment plan (the angles and intensities of the radiation beams). Going into it I assumed that the treatment plan would be generated by an algorithm, but it was actually custom-designed by a team of scientists. Unless you happen to be a Cyberknife expert, you won't be able to form your own opinion about the plan, and you can't easily back out at the last minute anyway.

I received the CK treatment in three doses over three consecutive days. The worst part for me was the unease and sadness of knowing that there was no going back to my brain being in a natural, unradiated state, which I had decided was preferable to the risks of surgery, but still not ideal. The surgeons I talked to who prefer open surgery had been adamant about avoiding radiation, but the literature seemed to suggest that there was no increased risk of secondary malignant tumors or other brain issues from the treatment.

The music they chose for the first session was also pretty slow/depressing, which didn't help. Having a robot shoot beams of radiation at me while I was lying on a table in a scary looking mask was very surreal and sci-fi.

As I mentioned, I had some headaches for the first week, but it wasn't that bad, and the results seem promising so far.

Quote
One year down and it's good news -- great to hear! I'm glad the symptoms you experienced were transient :) I'm nowhere near a power lifter, but I can say since I started back at the gym with weight training over the last few months, my wonky head symptoms have gotten better for sure. I believe physical activity is a plus for recovery.

Glad to hear that weight training has had a positive effect. I guess I can't say whether or not it has had any effect on my recovery since I got right back to lifting a week or so after the treatment.
« Last Edit: December 12, 2018, 01:14:27 am by triplewave »
9/3/17 - Left hearing loss. Returned in 3 days
9/17/17 - Left hearing loss. Prednisone. Returned in 5 days
10/5/17 - MRI detected 25x18x18 mm left AN (age 30)

Stanford CK with Drs. Chang & Pollum
11/22/17 - MRI reads 27x20x20 mm, but stable
11/28-30/17 - CK treatment

11/30/18 - Signs of necrosis

 


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