ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: arizonajack on January 22, 2013, 05:09:07 pm
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I am almost 3 hours post Gamma Knife where my Alien Life Form (4mm x 4mm x 12 mm) was bombarded with Phasers set on Kill.
I have a little discomfort and some oozing where the pins were. Otherwise I feel fine.
The treatment was short but the day was long. My friend picked me up at 5 AM to get me to St Joseph's Hospital by 5:30 AM. There were several people ahead of me in Admitting so it took about an hour to get through that process.
Next I was put in a room where I changed into the gown, had blood taken, and was given an EKG.
After that I went up to Pre-Op for some more paperwork, then was taken by wheelchair down long corridors to the Gamma Knife department where I sat on the gurney doing crossword puzzles until the anesthesiologist came in and put me out for the installation of the head frame. I woke up in about 20 minutes and thought I'd been muzzled so I wouldn't bite anybody.
Next stop was the MRI, then back to the Pre-Op room where I waited about 2 hours for my three doctors (Dr Howard, Dr Fine, Dr Howard - [joke]) to get together and develope the "Plan."
At various points during the 2 hours each of the doctors came in for a chat.
At noon I was taken to the Gamma Knife room. The actual treatment took about a half hour. The Gamma Knife machine (Perfexion) was almost 100% silent, a welcome change from the cacophonous MRI.
Then the radiation oncologist came in and removed the head frame. The nurse went over some final details and my friend picked me up and took me home.
I am a bit disappointed because I have not developed any super-powers, although I suppose that could take a while, so I'll just wait and see.
Anyway, I'll have follow-up visits with the neurosurgeon and the neurotologist in a month and my next MRI around July.
I'll update this thread if anything noteworthy occurs later.
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Sounds like everything went great. I had gammaknife on October 12, 2012, at the University of Virginia. So far so good. I feel great. Just got back from Disneyworld two weeks ago. I go back in April for my 6 month MRI. Pray every day that it is dying and shrinking. I will keep you in my prayers. Any questions, feel free to ask.
Cindy
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Dear Jack,
I love your positive way of looking at life "phasers set to kill" Star Trek huh? Me 2!
Only I was so nervous I could barely think of anything to shrink the tumor so I prayed and meditated.
What an imagery you have at your disposal! I'm jealous! You have killed ALF!
What a repulsive large creature! LOL!
Wishing you a Good recovery with no side effects!
Or as we say "Live long and Prosper"
Mike
Good Tude, Dude! Keep it up!
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Awesome news, glad it went so well.
Just arrived in freezing Pittsburgh. See Dr, Lunsford and team tomorrow and GK on Thursday!
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Jack-Glad it went so well. I love your writing style! Makes us smile. Good luck, Robin.
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Super Powers COOL!
They happen ;D
After Cyberknife I noticed my super powers are the same as this bloke.
http://www.youtube.com/watch?v=ghxnKDBadSk
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Jack,
congratulations on completing GK. I do hope the alien is dying already ;)
One advice (you may know it already): Apply some cold compresses at the pin sites if they are sore, to avoid swelling.
Marianna
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Hey everybody, thanks for your thoughts.
The pin sites are healing up fine.
Funny story: I watched the latest episode of Supernatural last week and wondered if that was what the head frame was all about.
Watch the episode and you'll see what I mean:
http://www.cwtv.com/cw-video/supernatural/torn-and-frayed/?play=5bc101d6-f71a-4f50-9fb4-192750f7a451
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Good choice Jack, glad everything is going ok. Your choice of treatment now makes a lot of sense to me. Spread the word and maybe give guidance and help to others.
Skip
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I'm probably setting the record for the most boring journal.
11 days post GK with no ill effects.
I'm taking vestibular therapy for my balance issues but those issues weren't too severe in the first place and I was seeing some improvement in the last couple of months. Likely that, after a year of balance issues, there was some compensation by the left side's balance center.
Anyway, I'm learning lots of exercises that challenge my balance. Some easy, some difficult. I have two more authorized sessions next week and then I'll be on my own with the exercises. By then my balance board and balance pad will have arrived.
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I think mine is more boring than yours, but I will take that prize any day.
Good luck to continuing post GK non-events!!!!
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Hey guys, boring is good!! Keep up the successful journey.
Skip
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Hi Jack,
I agree with the others that "boring/no ill effects" is good! Hope your recovery continues to go smoothly!
Also, in addition to your other balance exercises, I suggest you give Yoga a try sometime, if possible. I started taking a weekly Yoga class at my local YMCA about a year ago for occasional balance issues and now I'm hooked! Yoga's the best thing that's come out of my personal AN experience so far (well, that and a renewed appreciation for every minute of every day!).
Be well,
Petrone
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Hi Jack,
Also, in addition to your other balance exercises, I suggest you give Yoga a try sometime, if possible.
Can't quite picture me in the Lotus position. LOL.
I'm considering Tai Chi as an option.
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Had my one month follow up visit with my neurotologist. Took about 5 minutes.
Him: How are you doing?
Me: I'm doing fine.
Him: Any problems to report?
Me: No.
Him: How's your balance?
Me: Working on it. Get's a little better over time.
Him: OK, MRI every 6 months for the next 2 years.
Me: OK.
Him: Bye.
Me: Bye.
Hmm, made myself bored, there.
:P
I have a follow up next week at my neuro-surgeon's office but I'll just be seeing his nurse practitioner. I'll report on that afterward.
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No news is good news.
Interesting to me that you have follow ups; was your procedure near where you live? I dont have anything till I do my six month MRI and send it to Pittsburgh.
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No news is good news.
Interesting to me that you have follow ups; was your procedure near where you live? I dont have anything till I do my six month MRI and send it to Pittsburgh.
I live in Phoenix. My Gamma Knife was done at St Joseph's Hospital by a team from Barrow Neurological Institute's Acoustic Neuroma Center. Very convenient. My friend dropped me off in the morning and picked me up in the afternoon.
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This thread is encouraging!! I was diagnosed in January (on my birthday) with a 1cm tumor. I've decided to go with Gamma Knife rather than surgery. I also have MS and the recovery from surgery scares me. March 28 is procedure day.
Arizona Jack ... I appreciated your play-by-play narrative. Exactly the kind of info I needed to read!! :)
Karen
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I should add that I'm having the procedure done at Mayo ... Dr. Link
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This thread is encouraging!! I was diagnosed in January (on my birthday) with a 1cm tumor. I've decided to go with Gamma Knife rather than surgery. I also have MS and the recovery from surgery scares me. March 28 is procedure day.
Arizona Jack ... I appreciated your play-by-play narrative. Exactly the kind of info I needed to read!! :)
Karen
Hi Karen. I figured out from an earlier post of yours that you are about 52 now.
What are your AN symptoms (hearing, balance, etc)?
And what are all three of your AN dimensions?
If you don't mind saying.
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Had my follow up with the neuro surgeon last week. Well, not even with the neuro surgeon, saw his nurse practitioner. Checked my vitals, balance, asked me about any issues (none) and told me everything I already knew about the next couple of years of periodic MRIs. Then I left.
My next report will be around July when I have my next MRI.
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Hi AZ Jack,
I'm just learning all these new terms ... like I mentioned earlier, I have MS and all symptoms were deferred to that. Loss of balance, hearing loss, pressure... and I've always had noise in my ears. The tinnitus got louder and more deafening.
Dr wanted new MRI to progress check my MS. Hey guess what! MS is stable, no new lesions. Hey guess what! You have a tumor. Great, another new road to travel down.
The measurements of the AN. 13mm x 10 mm x 12mm.
Good new with your follow up appt. I am praying I comethrough the procedure as well as you.
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Hi AZ Jack,
I'm just learning all these new terms ... like I mentioned earlier, I have MS and all symptoms were deferred to that. Loss of balance, hearing loss, pressure... and I've always had noise in my ears. The tinnitus got louder and more deafening.
Dr wanted new MRI to progress check my MS. Hey guess what! MS is stable, no new lesions. Hey guess what! You have a tumor. Great, another new road to travel down.
The measurements of the AN. 13mm x 10 mm x 12mm.
Good new with your follow up appt. I am praying I comethrough the procedure as well as you.
Yours is more spherical than mine but still small enough to be a good candidate for Gamma Knife.
I think it's a good idea to have the Gamma Knife while the tumor is still small. I was on watch and wait for 6 months and it grew 20%. Wasn't going to give it any more space.
The consensus is, however, that some things don't change whether you have surgery or radiation.
Those were some of the factors that I weighed when I chose Gamma Knife.
Best wishes for your GK Day. Your progress will be helpful to others that read here.
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I hope to have the same journey as Arizona Jack. GK scheduled for june 25th with NYU team.
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Two months since GK.
Gained 10 lbs.
Don't know if that has anything to do with anything.
Otherwise, nothing new to report.
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I did the same.
Too much sitting on the couch feeling tired, and eating food to stop your stomach feeling queezy was the cause for me.
Happy to say i have lost about 35lb since 3 months post CK, BMI 27..
Cant say I have done anything proactive about it.
Feeling better did the trick
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I went on a diet March 21 and lost 12 lbs as of today.
On a slightly negative note, tinnitus returned to my SSD side yesterday after being gone since October.
I hear an intermittent sound at odd intervals.
Play the Plink 20 sound at the following site. Turn your volume down until the sound is barely perceptible and you'll have an idea of what my tinnitus sounds like.
http://www.soundsnap.com/node/10048
Easily ignored but still a bit disappointing that it came back.
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Congrats on the weight loss- sorry about the tinnitus-maybe it will go away if its due to the necrosing tumor swelling...
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Congrats on the weight loss- sorry about the tinnitus-maybe it will go away if its due to the necrosing tumor swelling...
Thanks.
Hope so.
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Something really strange is happening.
No, not super powers, I've pretty much given up on that.
Monday I reported the recurrence of tinnitus in my AN ear and described the intermittent "plinks" that I was hearing.
By last night they were occurring more rapidly, like Morse Code.
Today, I don't hear them at all.
I'm sitting in a very quiet room on the computer.
Even more strange, I'm not hearing the tire hissing in my left ear, something I've had for about 9 years.
At least I think I'm not hearing it. There's something but it's a lot lower volume than what I'm used to.
Oh well, I guess I shouldn't look a gift horse in the mouth.
I'll update this thread if anything changes.
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The hissing tire on the left side was back this morning when I awoke but plinks on the right side (AN) are gone.
???
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Hello Jack,
Look at the bright side - when the Cicadas arrive this summer and drive everyone else crazy with their incessant hissing, we won't even notice. ;)
Take care,
Petrone
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Hello Jack,
Look at the bright side - when the Cicadas arrive this summer and drive everyone else crazy with their incessant hissing, we won't even notice. ;)
Take care,
Petrone
Maybe I'll become part of the hive mind and be able to communicate with them. I might even be able to send them out to do my bidding like Willard did with his rats.
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"AJ"
I hope you saw my post regarding you on my "Thank You" post because your humor and approach has taken me far--in wonderful and hopeful ways.
Wanted to thank you directly now that I'm a "postie."
Cheers,
P.
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"AJ"
I hope you saw my post regarding you on my "Thank You" post because your humor and approach has taken me far--in wonderful and hopeful ways.
Wanted to thank you directly now that I'm a "postie."
Cheers,
P.
You're welcome.
(I did see it.)
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Last month I reported the brief return of tinnitus in my AN side. Lasted a couple of days and was gone.
Started again a couple of days ago.
Very faint short boops.
4 months since GK. Nothing else to report.
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Update.
The boop, boop, tinnitus I reported in May only lasted a couple of days then stopped.
Something else happened in June but I wanted to wait a couple of weeks before commenting, just to see if it was short lived or not.
One of my issues that started in December 2011 was dry eyes. During the night I would wake up feeling like I had sand in my left eye and my right eyelid would be stuck to my eyeball. Opening my eyes would feel like my right eyeball got poked with a stick and the pain would last for a few hours. My ophthalmologist found nothing wrong and said use artificial tears. That was before I was diagnosed with AN. So for the past year and a half or so I've been using Refresh frequently. I learned early on to wake up, keep my eyes closed, irrigate, gently pull my right eyelid away from the eyeball till it just popped loose without any pain.
Suddenly, one night about two weeks ago I awoke in the middle of the night with no symptoms and both eyes opened with no issues so I did not reach for the Refresh. Same thing the next morning and every night and morning for the past couple of weeks and I have not needed the Refresh since then.
I've never been able to determine with any degree of certainty whether the AN caused the dry eyes but the dry eyes were coincidental to the onset of my other symptoms.
If the AN was the cause of the dry eyes is it possible that the post GK death of the AN has reached a point where it no longer affects the eyes?
I don't know. I doubt if anybody does. I'll bring it up with my ophthalmologist next visit.
Meantime, I'm happy that there's one less medical thing to bother me, knock on wood.
One last thing. I have lost 45 lbs since March 21.
Next report will be after my next MRI later this month or early August.
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Great news! so glad this has resolved-I also suffer from dry eyes (have had them for years before AN Dx-side effects from my bone marrow transplant 17 yrs. ago) Will be interested to hear what your eye doc thinks...
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Jack ~
Thanks for the update with your good news about the tinnitus and dry eye abating. Congratulations on the substantial weight loss, too. Well done.
Jim
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AJ,
If you're missing your 45 pounds, I can tell you where they went as they came north to Ontario!
Seriously---congratulations! Great to read about all of your progress!
P.
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Hi Jack,
BIG congrats on the weight loss!
I found your post about the dry eye quite interesting. I suspect it may have something to do with the AN because it sounds quite similar to what I have been experiencing. I've never had dry eyes or any kind of eye problem in the past. Over the winter when my AN symptoms started to increase the dry eye became a new issue. Only my right (AN side) eye became dry! Left eye is as good as ever. I first noticed the problem waking up at night, the eye lid was difficult to open. This only happened occasionally and when it did I'd throw in a few drops and all was good. Once spring arrived I started having this happen more frequently and then the feeling of grit in the eye started during the day. I keep drops and or gel handy to use as needed. Thankfully it's not to bad. I do need to use something at least once a day and again, only on the AN side eye. Interesting don't you think!
Regardless of whether it really is AN related or not, I'm glad it's improved for you. One less annoying thing to deal with and hopefully it does not return.
Take care,
Cathie.
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So glad things have improved for you, but sooooo jealous about the weight loss!
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I got the CD right after the MRI and put it on the computer when I got home.
Results are as expected.
Tumor swelled a little but shows the dark spots of necrosis.
I won't see the Radiologist's report for a while but I'll be sending the images to all my doctors.
I don't expect any surprises.
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never thought "necrosis" would be a desirable word to see... :)-good news!
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Great News!!
I have my 6 mo follow up on Wednesday. Hope to report good news as well.
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I got the CD right after the MRI and put it on the computer when I got home.
Results are as expected.
Tumor swelled a little but shows the dark spots of necrosis.
I won't see the Radiologist's report for a while but I'll be sending the images to all my doctors.
I don't expect any surprises.
I have my Radiologist's report of my MRI and here's what it says about the tumor:
FINDINGS:
Bilateral internal auditory canals: Again noted is an enhancing
extra-axial mass within the right IAC extending from the porus
acousticus to the fundus that measures approximately 1.3 x 0.4 x
0.5 cm which is slightly increased in size compared to prior
examination. No extension into the right cerebellopontine angle.
Left IAC and left cerebellopontine angle remain grossly stable.
Impression:
Increasing size of previously noted enhancing extra-axial mass
(vestibular schwannoma as per history) within the right IAC which
now measures approximately 1.3 cm in greatest dimension (versus
1.1 cm).
So here's my question.
Why didn't the Radiologist report the observable darkening of the tumor?
I've sent that question to my ENT at the VA and the 3 doctors on the GK team.
Just wondering if anybody has come across that omission in a Radiology report and can shed some light on the subject.
PS: The tumor was actually 1.2 cm in January when I had GK and the swelling after GK was minimal and expected.
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I just received my report and no mention of the dark circles either. Plus new mention of a 6 mm meningioma. Making my list of ?s for the radiation oncologist!
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Honestly, I don't know how to read these things; maybe what you think is a dark spot isn't.
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Honestly, I don't know how to read these things; maybe what you think is a dark spot isn't.
I wish we could attach images to our posts. I'm using this series as a guide:
http://ars.els-cdn.com/content/image/1-s2.0-S0360301612004336-gr3.jpg
Mine looked like "A" before GK and now looks like "B."
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Hi;
Seems likely the radiologist wishes to be absolutely sure it is necrosis. 6 mos. out is pretty early to see Tx results from radiation that has slight edema. Maybe, or not the lack of absorption of gadolinium is necrosis?
I got the CD right after the MRI and put it on the computer when I got home.
Results are as expected.
Tumor swelled a little but shows the dark spots of necrosis.
I won't see the Radiologist's report for a while but I'll be sending the images to all my doctors.
I don't expect any surprises.
I have my Radiologist's report of my MRI and here's what it says about the tumor:
FINDINGS:
Bilateral internal auditory canals: Again noted is an enhancing
extra-axial mass within the right IAC extending from the porus
acousticus to the fundus that measures approximately 1.3 x 0.4 x
0.5 cm which is slightly increased in size compared to prior
examination. No extension into the right cerebellopontine angle.
Left IAC and left cerebellopontine angle remain grossly stable.
Impression:
Increasing size of previously noted enhancing extra-axial mass
(vestibular schwannoma as per history) within the right IAC which
now measures approximately 1.3 cm in greatest dimension (versus
1.1 cm).
So here's my question.
Why didn't the Radiologist report the observable darkening of the tumor?
I've sent that question to my ENT at the VA and the 3 doctors on the GK team.
Just wondering if anybody has come across that omission in a Radiology report and can shed some light on the subject.
PS: The tumor was actually 1.2 cm in January when I had GK and the swelling after GK was minimal and expected.
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Hi;
Seems likely the radiologist wishes to be absolutely sure it is necrosis. 6 mos. out is pretty early to see Tx results from radiation that has slight edema. Maybe, or not the lack of absorption of gadolinium is necrosis?
Could be.
I'll know more in a few days when all the doctors have commented.
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Signs of necrosis can be found early on after radiation for an AN. Many here, such as myself, did experience early indicators of necrosis, regardless of edema (swelling).
Please remember that "individual results may vary" for each AN'er post-treatment. Will be curious to see what your doctor says.
Phyl
Hi;
Seems likely the radiologist wishes to be absolutely sure it is necrosis. 6 mos. out is pretty early to see Tx results from radiation that has slight edema. Maybe, or not the lack of absorption of gadolinium is necrosis?
Could be.
I'll know more in a few days when all the doctors have commented.
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Hi Phyl;
Do you think the tumor not absorbing gadolinium in the same fashion as the first MRI is a definitive sign of necrosis? These Radiologists are leaving the necrosis part out of the report for some reason.
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Do you think the tumor not absorbing gadolinium in the same fashion as the first MRI is a definitive sign of necrosis? These Radiologists are leaving the necrosis part out of the report for some reason.
I'll put my case in perspective.
The MRI was done at the VA. No issues with the machine or the scans.
The radiologist at the VA is obviously not an AN specialist and, comparing the current report to the previous two reports done at the VA, appears to be using boilerplate language for his findings.
My ENT at the VA is a PA (physician's assistant) and basically just rubber stamps approval for the outside services of Barrow Neurological Institute's Acoustic Neuroma Center. His reaction to the report was to authorize additional consults at Barrow.
My neurotologist commented in an email that the few MRI images that I sent him showed that GK appears to have had the desired effect. A similar comment came from the neurosurgeon who also indicated no surprise that the VA's radiologist didn't mention the darkening of the tumor.
Once I get the consult authorization I'll go in and get a more "definitive" evaluation of the MRI just to have something to report here.
Meantime, I have no issues with the GK results other than curiosity about the omission.
My 6 month post GK experience has been (as they say in the medical business) "unremarkable."
::)
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I had a nice, boring, visit with my neurosurgeon today to follow up on the 8/1/13 MRI.
Confirmed necrosis, slight swelling expected and no big deal.
Everything else OK.
Next MRI - February 2014.
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Good news!
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Wow. As of this moment this thread has been read 4168 times. As best as I can tell that puts me at Number 5 on the Hit Parade.
Anyway, I had some time to kill so I went back over my reports and noticed that I'd been reporting my weight loss a few times.
I am pleased to report that I have lost 80 lbs since March 21.
My cholesterol levels are down to normal and I was able to quit my BP medication in October (with Dr approval, of course).
I'm still working on the weight, still have a ways to go, and joined a fitness center Thanksgiving week where I go work out on the weight machines several times a week.
Nothing new on the AN front. Relatively asymptomatic.
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Jack ~
Congratulations on the weight loss and subsequent improved health! May your fitness continue to increase as your weight decreases. :)
Jim
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The boop boop tinnitus came back for about a week but seems to be gone now.
Can't imagine why it stays away for many months at a time and then comes back faintly for a few days.
Not that I want it all the time. I don't want it at all. ::)
Just an interesting side note.
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Can you tell me why there are balance issues after undergoing GK?
Is that from radiation damage to the balance, auditory, facial nerves?
I thought GK was pinpoint accurate?
Thanks
lystgl
I'm probably setting the record for the most boring journal.
11 days post GK with no ill effects.
I'm taking vestibular therapy for my balance issues but those issues weren't too severe in the first place and I was seeing some improvement in the last couple of months. Likely that, after a year of balance issues, there was some compensation by the left side's balance center.
Anyway, I'm learning lots of exercises that challenge my balance. Some easy, some difficult. I have two more authorized sessions next week and then I'll be on my own with the exercises. By then my balance board and balance pad will have arrived.
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Can you tell me why there are balance issues after undergoing GK?
Is that from radiation damage to the balance, auditory, facial nerves?
I thought GK was pinpoint accurate?
Thanks
lystgl
Hi lystgl,
Sorry I didn't catch your post when you wrote it a few weeks ago.
The reason that there are still balance issues after GK is because the nerve is damaged even though the tumor is damaged and the nerve doesn't regenerate.
It sometimes takes a great deal of time for the body and brain to compensate. Keep in mind that there are three elements to balance: the body, the eyes, and the vestibular. Losing the vestibular nerve means losing 25% of your balance capability.
I had balance issues (lurching) for a year after my symptoms but I was getting some compensation a few months prior to my GK and the lurching is gone. I'm occasionally a little unsteady, like when I turn or move too fast, but that rarely happens.
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I had my second Post GK MRI this morning (with contrast) and brought home the CD. It looked like the AN was a bit smaller.
Then I got a message from the VA that contained the following radiologist report:
Comparison: MRI brain with contrast performed 08/01/2013.
High-resolution images through the internal auditory canals
demonstrate an enhancing extra-axial mass within right internal
auditory canal, measuring 1.2 cm transverse x 0.4 cm AP x 0.6 cm
craniocaudad compared with 1.4 x 0.4 x 0.5 cm. There is
questionable slight decrease in size compared with the prior
study.
I think “questionable” refers to the MRI “slices” not quite lining up between the MRI last August and the one today. Even a mm or two difference could make the tumor look smaller (or bigger).
But, still, it’s looking stable, so I’m pleased with the progress.
Next MRI in one year.
PS: I've lost 100 pounds since 3/21/13.
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Stable is good. Smaller is better. I go for my (almost) 1 year post SRS neurosurgeon visit tomorrow and hoping for good news.
Congratulations on the massive weight loss! What an accomplishment! Sounds like you're shrinking too :)
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Hi Jack-
Great news for you.
Now can you share your method for losing 100 lbs!
Congrats on both.
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Two years and one month since Gamma Knife. Hard to believe that this thread has been read almost 11,000 times.
Anyway, I've often alluded to my pre-Gamma Knife history in other posts but now that I look back over this chronicle I've decided to add it here so it's all in one place.
Sit back, relax, it's a long story.
Somewhere around 2004 or so I started to experience tinnitus in my left ear in the form of a hissing sound like air escaping from a tire. It’s not loud and I am pretty much able to ignore it. I still have it, unchanged after all this time.
Several years later, maybe during 2011, I started experience some loss of hearing. Generally found that I was not responding to friends with soft voices but had no difficulty with normal voice ranges, TV or music. I attributed it to age as both my parents experienced some hearing loss as they got older. Like most people I thought about getting my hearing tested but kept putting it off.
It was the middle of December 2011 (ah, distinctly, I remember) that I discovered a substantial loss of hearing in my right ear. Here’s what I mean by discovered. For many years I had been using a head set for telephone conversations at work and at home. The receiver was always over my left year so it never occurred to me to see how my right ear was doing. One day I was talking to my friend on the phone and we were getting some static on the line with my cordless phone. I picked up a second phone and held it to my right ear to check for static but all I could hear was the faint, tinny, far away sound of my friend’s voice. It was quite a shock.
Several other conditions became noticeable during that period. I started getting tinnitus in the right ear. It sounded like wind chimes. It took me a few days to realize that the wind chimes sounded like they were playing Silent Night. I found that amusing since it was just before Christmas.
I also started experiencing dry eyes at night. That’s been continuous and I use Refresh. I don’t know if dry eyes are related although I have read that Acoustic Neuroma patients are known to have dry eyes post-surgery.
As a precaution I went to my regular physician on December 23, 2011. The visit was disappointing to say the least. He found nothing in the ear to explain anything. He had his assistant do a tympanogram but I think she got the leads reversed. She tried to do an audiogram but couldn’t get the machine to work. It was a bit of a fiasco but the doctor put me on medication on the odd chance that it might have been an infection. The medications were:
Methylprednisolone 4mg dospak 21’s
Amox-Clav 875mg tablets
No help.
I then reported my condition to my primary physician at the Phoenix Veterans Administration Medical Center at which time I was referred to an audiologist. The earliest appointment available was February 14, 2012.
By then I was experiencing balance issues.
The result of the visit to the audiologist was a finding of profound hearing loss in the right ear with zero word recognition. I was approved for hearing aids and the audiologist ordered the Phonak Cros and Audeo which I have and still use to this day.
She gave me a referral to the ENT. The earliest appointment was for March 5, 2012. At that time the ENT reviewed my history and ordered an MRI with contrast. The MRI was scheduled for April 4, 2012.
The results were given to me by the ENT on April 12, 2012. The MRI report is as follows:
Cylindrical intracanalicular enhancement. noted within the right
internal auditory canal measuring approximately 3 x 9 x 4 mm
(Ap x transverse x craniocaudal) likely compatible with an
intracanalicular schwannoma.
The ENT used the terms "acoustic neuroma" and "vestibular schwannoma", both of which I wrote down along with his brief explanation of the nature of the "benign" tumor. During that visit I reported balance issues, that I was unsteady on my feet and bumping into walls.
I agreed to monitor the AN (also known as Watch and Wait) and have a follow-up MRI in 6 months.
After that news I went home and started researching Acoustic Neuromas and learning all I could. I joined the Acoustic Neuroma Association and have been participating in forums where I have learned much about the experiences and options of others.
During the next 6 months my balance issues remained rather constant but more noticeable when I was walking on uneven ground or working in the yard or on projects in the workshop.
I returned for my second MRI on October 10, 2012. After finishing the MRI I obtained a CD of the images of both MRIs.
As soon as I got home I put the CD on the computer and, using the first Radiology Report, was able to locate the image from the first MRI that showed the Acoustic Neuroma and the corresponding image from the second MRI that showed the growth of the neuroma over the six month period. The MRI images had centimeter scales along the side and bottom of the image so I was able to determine that the AN had grown about 20%.
It was then that I decided it was time to kill it.
I obtained the written report of the second MRI from the ENT on October 18, 2012:
There is an enhancing extra-axial mass within the right IAc
extending from the porus acusticus to the fundus thrat measures
1.1 cm x 0,4 cm x 0.4 cm slightly increased in size compared to prior exam.
There is equivocal slight extension to the cochlea. There is no significant
extension to the right cerebellopontine angle.
During that visit with the ENT I was advised that future treatment would be handled by non-VA facilities but paid for by the VA.
At some point concurrent with the results of the second MRI it dawned on me that I hadn’t been hearing the chimes and tones in my right ear that I had reported earlier in the year. I hooked up headphones to my computer, played some music and, instead of the faint, tinny sounds of before, heard absolutely nothing.
While all that was going on I learned from this forum that the House Ear Clinic in California would provide a free consultation upon review of AN history and MRI images.
On October 30, 2012 I sent my CDs and history to House. On November 8, 2012 I had my phone consultation with Dr Wilkinson at House. Options discussed were Gamma Knife and translab surgery. He spoke highly of translab surgery as a relatively quick remedy to the balance issues and explained that Gamma Knife would not relieve balance issue and could make it worse. Frankly, I took his consultation with a grain of salt because I had already learned from this forum and other research that neither points were entirely true and that House invariably recommends surgery because there is no radiation treatment available there.
It was about that time that I had pretty much decided on Gamma Knife subject, of course, to further consultations with experts.
I am fortunate to live in Phoenix, Arizona which is home to the Barrow Neurological Institute. BNI has an Acoustic Neuroma Center staffed by a team of Acoustic Neuroma specialists who offer both surgery and radiation and are impartial in their consultations.
The VA approved funding for the outside services and I had a consultation with Dr Porter (neurosurgeon) at BNI on November 9, 2012. He was in agreement on Gamma Knife based on the small AN, my age, and symptoms. In November I had additional consultations with Dr Brachman (radiologist) and Dr Weisskoph (neurotologist).
I was subsequently scheduled for Gamma Knife in late December 2012 but the three doctors had a scheduling conflict and the treatment was pushed forward to January 22, 2013. That, dear readers, brings us to the beginning of this thread where I describe my day of Gamma Knife and post Gamma Knife experience.
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Update:
Two years and two months since Gamma Knife and I had a follow up MRI with contrast on Monday 3/23/15.
I obtained the CD on Tuesday and compared the images of the AN with the images from3/13/14. There appeared to be no change in size.
Tonight I obtained the radiologist's report from the VA's website. Confirms that the AN is essentially the same size and shape as it was a year ago.
So, while I was hoping for shrinkage, I'll settle for stable.
Here are the spec:
4/4/12 9mm x 4mm x 3mm (Date Diagnosed).
10/10/12 11mm x 4mm x 5mm
1/22/13 12mm x 3mm (Date of Gamma Knife)
8/1/13 14mm x 5mm x 4mm (Expected Swelling)
3/13/14 12mm x 6mm x 4mm
3/23/15 12mm x 5.5mm x 4mm
Probably looking at another year, maybe more, until my next MRI.
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Hi Jack...
Good for you! In keeping with the similarities in our ANs, I am hoping for a good report as well. I was wondering if you have any necrosis or darkening of your AN on your films. Another question, if I may, I am having another hearing evaluation next week in the hope my declining hearing in my good ear, as well as loss of all word discrimination in the AN ear can be helped. What was the status of your hearing when you were given the Bicros hearing aids and did they alleviate your difficulty at all?
Once again, great news about stability...after all that is the original intent of having GK right?
Best to you...
NYL
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Thank you for this thread. It has been very informative for those of us considering Gamma Knife. Looks like you had very good results.
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I'm coming up on 3 years since Gamma Knife. My last MRI showed ALF was stable if not ever-so-slightly smaller. My next MRI will be September 2016 when I hope to be able to report some shrinkage.
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Great news Jack!
When shrinkage occurs, does that equate to symptoms lessening? Still am struggling with balance issues. Completed 40 sessions of vestibular therapy and slowly the symptoms returned.
Wishing you, and all members all the best in 2016.
NYL
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Thank you for linking to this in your signature! I'm very encouraged after reading it.
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Those of you who have been reading these chronicles may recall that my tinnitus on the AN side, while faint and easily ignored, has taken some amusing turns over the years.
Well, during the last couple of days it's taken yet another amusing turn.
Now it's sounding like a telephone ringing.
Quoting Ernestine: "One ringy dingy, two ringy dingy, etc to the nth ringy dingy."
And the tire is still deflating in the other ear.
I'll try to remember to post any future changes.
Meantime, 6 months to go until my next MRI.
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It's back to rapid intermittent beeping.
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I suppose the beeps are better than the phone ringing, right? I have worked in a call center and the sounds of phones ringing endlessly is pretty awful. I guess beeps would be, too, though. You have a great excuse to not answer the phone, though :-)
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I guess I'm fortunate that my tinnitus is barely audible. I've been sitting at the computer for a while and didn't notice the beeps until I got here and read your note and started thinking about it.
When I'm occupied I hardly notice it at all.
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Morse Code today. ;D
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Every once in a while I go back over my story to see if there is anything that I missed that I can add for the enlightenment or amusement of the readers. Today it's going to be amusement. I noted that I once referred to my medical team as Dr Howard, Dr Fine and Dr Howard but didn't explain how that came about.
I was originally scheduled for Gamma Knife in late December 2012. A few days prior to the appointment I got a call that it was cancelled because the 3 doctors couldn't all get together for that day and it was pushed back to January 2013.
That's when I started thinking of them as Dr Howard, Dr Fine and Dr Howard.
The reference comes from a Three Stooges episode called Men in Black where they are inept doctors at a hospital and repeatedly during the episode the public address system squawks "Calling Dr Howard, Dr Fine and Dr Howard."
Watch the episode at:
https://www.youtube.com/watch?v=MDI3kmHcuUU
At some point prior to my GK I explained that to my friend and jokingly mentioned that I would take a marking pen and mark the side of my head that the tumor was on just to make sure that Dr Howard, Dr fine and Dr Howard got it right, thinking about all the stories where people go into the hospital for one thing and end up getting something else done by mistake.
On the date of the GK I am sitting on the gurney waiting for my turn at the machine. The nurse comes in, hands me a marking pen and tells me to mark the side of my head where the tumor is. S'help me I'm not making that up. I laughed so hard I nearly fell of the gurney.
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I had my latest MRI on 9/21/16.
About the same size and shape as it was 18 months ago.
Disappointed with no shrinkage but OK with stability.
Next MRI will be March 2018.
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Thanks for sharing your story AJ. :)
As I begin this journey it is super-helpful to learn from those of you who have been down this road before.
I'm guessing that based on my age and AN size, that I'll be having surgery, but I haven't even gotten to the point of getting input from a neurosurgeon yet, so stay tuned...
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I have long been disappointed by the discrimination against Canadian members who have to pay $70 per year when US members pay only $45 per year (with an $80 option for 2 years). I have voiced my disappointment with the director in the past only to be given vague excuses that cannot possibly justify the amount charged to Canadians when practically everything on ANA is digital and costs no more to serve a Canadian member than it does a US member. About the only time anything is actually mailed is a solicitation for donations which would take less than $2 to send to a Canadian member.
I just don't get it and can no longer, in good conscience, give financial support to the ANA so this is likely to be my last message.
Meantime, my most recent MRI shows no shrinkage, but also no growth. As before, I am happy with stability.
So long, and thanks for all the fish.
(Credit for the subject line goes to Groucho Marx. Credit for the sign-off goes to Douglas Adams.)
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Speaking for myself and I am sure many others on the discussion forum you will be missed. Wishing you continued good health in the future.
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Jack, you don't need to be a member of the ANA to use the forums. I've been here 10 years now and I've never been a member or paid anything. Maybe you knew this, anyway it's your decision.
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That’s true for me as well. I haven’t paid to read and post on the forum. You do have to pay to get the excellent features and webinars provided by the ANA but not to participate in the forum.
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Thanks Jack for raising a very valid concern regarding membership rates. Just to add to your point, the rates you have quoted are in US Dollars. Based on today's exchange rate, I would have to pay $90.08 Canadian for the $70.00 USA membership! For me this has become a matter of principal, so, like Rupert and notaclone13, I will continue to enjoy the forum without a membership....lets hope that option doesn't change.
I hope you will continue to monitor the Forum and add your comments from time to time. We could always count on you to be informative, funny and encouraging! Your posts will be missed.
Keep well.
Cathie - Toronto, Canada
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Hi Jack/Cathie-
Glad to see some recent activity from my old group from 5 years ago! Haven't been on here in a while. Was recently as I passed my 5 year mark.
I didn't realize the disparity in membership dues or that people could post without being members.
However, because I can, I choose to pay a little more to give some financial support. When I was 1st diagnosed, this forum was a huge help to me, so will gladly keep my paid membership going as long as I can afford to do so.
Hope everyone stays well!
-Robin
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Thanks for the kind words. I'll stick around.
I added the recent MRI dimensions to the list.
No change.
I'll take stability over growth any time.
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Arizonajack, so happy to see you back on the forum. Wouldn’t be the same without your wisdom, good advice and sense of humor. Congrats on continued “no growth”.
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My, how time flies. Didn't realize how long it's been since my last post. Nothing new to report, really. My last MRI was September 2019. No change in size. Still asymptomatic (other than SSD).
I'm extending the interval. Next MRI September 2021.
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Wow Jack, looks like you came on to post your update as I did. Glad you're well! All the best!
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Thanks for the update. So glad you are doing well. Hope you keep visiting the forum because your posts have benefited and entertained so many of us.