OK here we go - Novalis LINAC 3 FSR starts tomorrow

[Ruthie Mac]

Thanks for sharing your update - it's so interesting to compare notes (with pictures!)
I'm at 8 months post radiation on a similar machine - 4 FSR and I'm jealous as
my 6 mos. MRI didn't show any necrosis yet, only swelling of approx 4mm.  But the good news is I'm starting to feel so much better, so I think the worst is over. It's interesting that your doctor prescribed steroids right away. Mine wanted me to wait to see if I had any severe symptoms, like sudden loss of hearing, which I didn't.
You are so lucky you didn't have balance problems - that's been the hardest to deal with. 
Looking forward to the next updates...hopefully good news from here on...
Ruthie

[keithmac]

Wow, Shawn, that's expensive treatment! 

I'm not unaware of US treatment costs having experienced 'em directly myself but I'm glad we Brits aren't faced with bills when we're already under the stress of the condition we share.

Good luck with further necrosis of your tumor and best wishes for improving health.

[theshawn65]

Yes Ruthie, it is interesting how different all our experiences with this tumor are.

My doc didn't prescribe any steroids other than a 5 day regime during my actual treatment. He said unless I experienced further side effects no steroids were necessary at the moment. Glad to hear you're feeling better after treatment!

[theshawn65]

Yes Keith it wasn't cheap, but compared to the surgical alternative it was! lol

Thanks for the well wishes, may yours do the same.

[Elliott]

Thank you so much for your post. I too had treatment on the Linac machine, treatment finished late January. All seemed to be going well, but over the last month or so I have started getting headaches and a few balance issues. Also tinnitus and hearing has worsened. Like yourself, in the past I rarely have got headaches and have only had one sick day off work in the last 21 years (and then I wasn't sick!). Your post gave me comfort that worsening symptoms, months after treatment has finished, are not necessarily a bad sign. I am going in to see the ENT doc next week, hopefully a scan as well. Fingers crossed!

[theshawn65]

^^^

Sorry to hear about the worsening symptoms, My headaches/earaches are gone as of now and I've felt back to normal the last couple weeks with no issues outside of the occasional facial tingle (a couple the last weeks) that didn't last long. Tinnitus is back to it's normal volume.

Good luck and Godspeed on your next MRI, may you see the darkening areas that indicate tumor cell death and the eventual waning of your symptoms as the swelling max's out and it slowly starts to shrink. I hope and pray they end up temporary like mine seem to have been.

[johns]

Shawn,

Thank you for this write-up.  I am two days out from having my AN treated at Precision Radiotherapy with Dr. Breneman also.  This is a very encouraging thread and I feel blessed to have stumbled across it today.

John

[theshawn65]

Excellent John, that is what this place is about! I hope your treatment is a success and you experience what I did with them. 

[johns]

Friday's treatment went well, as expected.  Great staff from Dr. Breneman to the check-in ladies.

Now it is a 6 month wait for my first follow-up MRI.

John

[theshawn65]

Update post: I would start a new thread but believe those new here (or even not so new) need a beginning to end continuous thread documenting post treatment experiences.

It's been almost 3 1/2 years since my treatment and 2 yrs since last post and so far....so good. I had updated MRI a couple weeks ago that Dr. Warnick looked at, and without requesting an in person meeting said the tumor was smaller (how much I'm not sure) and for me to do another audiogram now and follow up MRI in 18 months. Whoo hooo! Over last 2 year I've had no new symptoms and my tinnitus is better.

I procrastinated on MRI follow up for about 1 year as forking out $2,000 out of pocket because of high ded HSA plan wasn't a "want" in life lol. But after that time and the wife's bugging I relented, plus about a month or so ago I experienced some eye twitches (not that I could see but just feel) and some slight headache/ear ache stuff. Nothing major and could have been psychosomatic for all I know, knowing I needed/wanted to do a follow up and was procrastinating. (btw those symptoms have disappeared post MRI...go figure! lol) I did some local research and found a place that did it for $950 out of pocket. Brain scan/with and without contrast at a place called PDI that has some various locations but not all do brain scans so you'll have to check. Mine was on a 20 yr old Hitachi 3Tesla open mri machine, your mileage may vary....it's the same place I used when we found the tumor. http://www.pdidiagnostics.net/locations.....If you don't have to worry about cost or prefer newer technology, I would say compared to my other scans done 2 yrs ago at the hospital, the hospitial scans seem clearer. Maybe the technicians skill helps or hurts I'm not sure but next time I may pay more to get more detail. Just FYI.

Anyway here is latest pic of image at largest point I believe.  http://s159.photobucket.com/user/theshawn_photos/media/3-2017%20AN%20image_zps40wcx8qx.jpg.html

Comparing to my last one it looks like there is an indent on the left side of the tumor that wasn't there like it is now. I am supposed to get another audiogram to test my hearing, but I can make this claim without one. I have not lost any hearing and sometimes if feels/sounds like I may be gaining a little bit back....When seeing my ENT after treatment (the last time I will go to this guy btw (DO. Adan Fuentes), as his FIRST comment after hearing I didn't choose surgery was "Did they tell you radiation can cause cancer?"....to which I replied, yes, but statistically it's insignificant....but hey thanks for the supportive comment ahole....He referred me to Dr. Ravi Samy (his surgery training mentor) who also said my tumor was too big for radiation treatment at the time, so I don't think he liked me NOT choosing surgery or his mentor. I guess some surgeons aren't unbiased enough to see the benefit other treatments provide. They get paid to cut though, they don't get paid not to....and remember they are humans, not gods you can't question. If they don't like questions find someone else. It's your body/brain/tumor and life...not theirs.

Anyway, get off the soapbox Shawn....After his office did my audiogram and it actually showed slight improvement (he actually claimed it got worse but I remembered the number from the first one and KNOW this one was slightly higher) he said "Hmmm, you still have some usable hearing on that side maybe a hearing aid might help, and keep it stimulated." Sell me a hearing aid after being so sweet about me not choosing surgery?? Awww thanks doc, but I'll pass.

But his comment about stimulation got me thinking. If a blind persons hearing is better than ours because it compensates for their blindness, why couldn't our dominant ear do the same to compensate for our AN ear, possibly making it easier for our AN ears nerve to atrophy slowly? I don't know....but nerves can regenerate right? I decided to experiment and put an ear bud in my AN ear hoping stimulation would halt or maybe even improve my AN ears hearing over time. So a few times a week while at work I do this and listen to random weather channel videos continuously while working on things I can without listening necessary. I can't scientifically say my hearing is better, and I'll find out at next audiogram, but now some videos I have to turn the volume down because it's too loud (when it's maxed out) where 2 years ago I HAD to max out the volume to hear some things and never had to turn it down for being too loud. One thing that hasn't majorly improved though is speech recognition on my AN side, while I think knowing sound IS coming from that ear is better, knowing what's being said isn't much better. However, if I hold the other ear bud a foot from my left ear all of a sudden I can hear very well what's being said, just the slight ability to hear in my left brings what's being heard in my right into "focus."

If I'm giving TMI folks my apologies, I'm one of those who prefers too much info when making decisions. I'm not sure I'd know how NOT to want to build the watch! lol.


Cliff note version: Yes that probably ages me...

3.5 yrs after my treatment things are well, the tumor is smaller and I wait another 18 months before next checkup. No new symptoms, tinnitus is better and I think my hearing may have slightly improved and is definitely no worse.

Fire away with any questions.

Shawn

[ANSydney]

Shawn,

Thanks for the update. It's a good story for radiotherapy. And congratulation on a great outcome.

You should get the written results of all your hearing tests. This will tell you how it is varying with time. I'd be interested in the results. (I get mine done monthly and have been graphing the results.)

Also, the latest MRI image is not as clear as the previous one. Can you get it on disk? (One good thing about the disk is that it usually comes with a viewer that has measurement tools on it so you can make your own measurements. On the largest axial view, measure the diameter in line with the otherwise straight edge of your cerebellum and perpendicular to it, but excluding the intrameatal part. To measure the height you'll need the other view.

Something to keep in mind when getting an MRI is that you want fine slices; 1 mm or less is perfect. If the slices are say 3 mm apart you may easily get the maximum or be up to 1.5 mm away from the maximum diameter, so looking for small size differences is difficult.

For your previous MRI image of 3 June 14 post, I would put your tumor size at 2.2 x 2.3 cm, which really is no different to your signature figures.

I agree with your statement that all doctors are biased towards the treatment modality that they specialize in, even to the extend that ENTs will recommend translabyrinthine surgery as the best method in your particular case and neurosurgeon will recommend retrosigmoid surgery as the best method in your particular case. They'll say it's too big for radiosurgery, but then when you see the radiosurgeon he'll say it suitable for radiosurgery. They can't all be right.

If only there was a MD that got several million a year to be an advocate for conservative management we'd have all bases covered.

I'm a believer that auditory stimulus is a good thing to keep hearing. While at work I listen to a video while working with an ear bud in the AN ear. The belief is that the cochlear and nerve will not be assisted, but the cochlear nucleus (which is part of the brainstem) will get redeployed (neuroplasticity) if it is not stimulated. I'm now doing what I call sound therapy where some pure tones are listed to for an hour a day. At my next hearing test I'll see if those tones improve, get worse or stay the same.

I think speech recognition on your AN side will improve if you listen to people speaking in a video to your AN ear only. This will train your brain on what the words now sound like.

Thanks for sharing.

[theshawn65]

Hi Syd,

Thanks, yeah the image isn't as clear partly because its a cell phone pic of the image on a computer screen. However this time the images were blown up 2.4x for some reason and don't seem as detailed anyway. My next image I will find a newer machine and request the smaller splicing. I was kind of annoyed this time after getting home and looking at the images, not as clear and the splicing wasn't as thin so it showed about 3/4 slices of the tumor and another 12 of the rest of my head. For some reason the CD software crashes on my work computers after looking at a few images but my home laptop has no issues....I'll try to get a better image posted.

Yes, all doctors have biases....which is why getting multiple opinions on our tumors is important. Just going with the first one, especially if they haven't dealt with hundreds/thousands of them can end in decisions you regret later. It is easy to give the doctors too much clout as we're trained from childhood to look up to them, but I just kept thinking "this is my head, my tumor and my life these doctors are making opinions or suggestions about, so it's ultimately MY decision...not theirs"....and were they in the same position, they'd be deciding too and not putting it all in the doctors lap.

Glad to hear you practice the ear bud stimulation too, I think it helps and believe more should use/try it.

Thanks for your thoughts.

[PaulW]

Great to hear you are doing well Shaun.
Just some comments on hearing. The hearing tests don't measure everything which can make your ability to hear a little subjective..
One thing many people with ANs have is an inability or reduced ability to hear sound volume.
So quiet sounds are of a similar volume to loud noises. The result of this is you may test very well in the hearing tests. But the moment you get into a noisy environment the volume is so low in comparison to your good ear you essentially become deaf on youn AN side.
The other problem that arises is your speech recognition may be great at low noise levels, but as volume increases the sounds you hearing becomes distorted making speech recognition worse.
If you have this problem, you also lose directional hearing when the back ground noise levels are high.
I am nearly 7 years Post radiation now. Had a hearing test last week. My hearing has fluctuated a lot but appears to have settled in the last 2 years.  My worst test was 12 months Post CK. speech recognition 0% and -90db loss at 1KHz and a PTA of -60db. At 2 years I was back to 100% speech recognition and PTA of -17db. (Normal Hearing) 7 years on, speech recognition is 70%, I have normal hearing up to 1KHz and reduced hearing after that.. PTA is currently -32db. Apparently my AN ear is similar to the average 80 year old man. There is a study somewhere,  that shows the rate of hearing decline after radiation is the same as the decline from aging from about 5 years post radiation.
So if you had the hearing of a 70 year old prior to radiation, and 5 years later, radiation added 20 years worth of hearing loss, you would have the hearing of a 95 year old.

[theshawn65]

Thanks Paul, and thanks for your thoughts and input on hearing....good points.