ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: JimC on January 01, 2010, 11:39:09 am
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Hi,
Warning...this is kind of wordy ;)
I've been lurking around this place since I was diagnosed with a 3.3 cm AN via MRI due to hearing loss in September. It's kind of funny. I'm an industrial hygienist and one of the things I do is measure workers' exposure to noise and provide training on noise induced hearing loss. During my training, I explain the various types of hearing loss, including conductive, sensorineural, sociocusis, etc..., I was convinced my problem was conductive/obstructive due to wearing hearing protectors so often, so I didn't bother having it checked for over a year. Boy was I wrong...Anyway, once it was discovered, I was referred to Dr. Peter Weber at the Cleveland Clinic. Great guy by the way! After reading these forums, I really didn't want to go the surgery route, but knew I was pushing the size limit for radiosurgery, however, I would do what was necessary. When I met Dr. Weber, the first thing I asked him is would I be eligible for gamma knife. He said I was and that he actually will go as large as 4cm. He also performs surgery, so I don't think he was truly biased one way or the other. He had me meet with the Radiation Oncologist, Dr. Suh. He informed me of the options, gamma, fractionated, surgery. Since I already lost the hearing in my left ear, gamma seemed the way to go. Next was waiting for my gamma knife date. Dr. Weber only has the use of the gamma knife once/month. While vacationing at Disney World a few weeks ago, I got my call. New Years Eve would be the date.
Here is my timeline for yesterday's procedure. I arrived yesterday morning at Cleveland Clinics Gamma Knife Facility at 7:30. Head frame was attached at 8:00, mild sedative administered thru IV, lidocane injections in my head, slight stinging/burning sensation that didn't last too long ~5 minutes or so. At 8:30 I was wheeled over to the MRI. It only took 10 minutes. I asked why so short, they said they already had the target area, didn't need to do a full scan. Next I wheeled over the CT unit. Again, very short ~5 minutes or so. Back to the waiting room. It took 2 hours to program my treatment, this was the longest part of the day. Once they were done, the came to get me and told me I'd be in the unit for 52 minutes. Kind of uncomfortable having my head clamped to the machine for so long. My nurse told me I could move my feet, legs, hands and shoulders, but whatever I do, do not touch my head during the treatment. So of course, my nose and ears start itching, as if knowing I couldn't do anything about it :) I brought along Pink Floyd's Dark Side of the Moon for my mood music. Nothing like listening to a song called Brain Damage while my brain is potentially being, uh, damaged ;D?
Oh, I was also given two large syringes of a steroid thru my IV prior to entering the Gamma Knife unit. The nurse told me it was to jump start the steroid treatment. I was given a prescription for a 7 day cycle, beginning today.
Once I was finished, the head frame was removed. This was the worst part of the treatment. I could feel the screws turning in my head, just kind of a weird sensation. Once they were all out, the two holes in my forehead really started to hurt. The nurse told me that was normal, and for some reason it's alway the two in front, not in back. She gave me a couple of Tylenol and said the pain should go away in 2 hours. It pretty much did, with the help of a few beers to celebrate the New Year. I also managed to cook a 6 lb rib roast and cedar planked mashed potato's on my big green egg last night :D They gave me a pillow sleeve to take home for leakage, which it did a little. I have a followup on Jan. 12 and also a consult with audiologist that is the BAHA guru at the Clinic. So far, so good.
Thanks for reading. Also, if anybody in the NE Ohio area has questions about Dr. Weber and the Cleveland Clinic, I'd be more than happy to speak to them.
Happy New Year, 2009 certainly went out with a bang!
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JimC -
congratulations on the New Year's Eve present ;D You are lucky that Dr. Weber believes in radiating ANs larger than 3 cm - which is usually the threshold for other docs not to do radiation. I'm happy things went well for you.
BAHAs are awesome - I'm a confirmed BAHA user. If you have any questions about them, please don't hesitate to ask me on the open forum or through a PM.
Best,
Jan
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Welcome to this forum, JimC .....
Sounds like you had a rather unconventional New Years Eve party! :o Glad the ordeal was in 2009 ...... now 2010 has to be better for you. Let us know how you are doing. We are here to care and support in whatever way we can.
Clarice
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Thanks. As I mentioned, I've been a lurker for quite a while, so I feel like I 'know' most of you already.
Jan - I really hope the baha works for me. I mentioned the Trans-Ear and the mouth thingy to Dr. Weber, he was pretty much against both of those. He feels trans-ear, in order to work correctly, has to be pretty snug which can cause discomfort. The other he sort of laughed off. I told him that I read on the Cleveland Clinic's website that Clinic awarded it as one of the top 10 medical innovations of the year. He told me he wished they'd talk to the ENT's before handing out awards :) He loves the baha though.
I'll try to keep updating my progress. Especially for those with larger AN's who might be seeking this method of treatment. I know it's only been a little over 24 hours.
Jim
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Hi Jim,
Welcome to the Forum and congratulations on successful treatment!
Wow - what a way to end the year!
I had to change some other doc appointments from earlier in the month and ended up having a checkup, etc. on Dec. 29th.
Really didn't want to bother, since i am on vacation from work.
But i figured i better take FULL advantage of having met my medical deductible!
Best wishes for a fantastic year!
Keep us posted on your progress, ok?
(I am interested since i am in Watch & Wait.)
Sincerely,
Sue
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Jim C ~
Welcome, congratulations on your GK procedure and thanks for your post, which was comprehensive and appreciated. I certainly hope the GK treatment proves totally successful, which it very likely will.
Jim
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Starting the new year off with a bang, so to speak. ;D
Sounds like it was a good procedure, though. Welcome to the club.
Steve
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Happy New Year and Congratulations, Jim!
I had GK, and my experience was similar to yours. I even listened to some Pink Floyd!
I thought it was interesting about what you wrote about only the front of your head hurting. For me, it was only in the back! I alternated heat and cold, and it helped a lot.
Oh, well as you know from reading the posts here, experiences can differ greatly.
Bet you're glad it's over!
Lisa
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JimC -
I was told by my neurotologist and by my audiologist that the TransEar does have to fit perfectly in your ear to have good results, but once that issue is addressed it's a great option for those who are SSD. TransEar has also addressed some of the earlier problems they had with wiring, so these days it's a better option than ever before.
That said, I'm partial to my BAHA. I personally am opposed to wearing a hearing aid behind my ear - and the BAHA solves that dilemma nicely. The Sound Bite is also not for me - something behind my ear and in my mouth?? :o - but it sounds like it might be a good option for some who are SSD. I haven't had a chance to ask my neurotologist what he thinks about it - but I'm fairly sure I know the answer already; he does a lot of BAHA and Cochlear implants.
Give the BAHA demo a try; I think you'll be sufficiently impressed.
Any idea why Dr. Weber will radiate an acoustic neuroma over 3 cms when most docs won't? I'm very intrigued by this idea. Perhaps the ANA will ask him to be on one of their discussion panels at their next symposium in 2011. It's in Cincinnati, so it would be right in Dr. Weber's neighborhood. Maybe I'll suggest that to someone at the ANA.
Jan
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I'm not sure why he'll use radiation on larger AN's. Honestly, I'm sure it has to do with tumor location. I found a summery from the Audio Digest Foundation in which Dr. Weber discusses gamma knife and the article below Dr. Weber's is your Dr. Battista discussing BAHA. Small world.
http://www.cme-ce-summaries.com/otolaryngology/ot3917.html
Jim
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Hi Jim and welcome
congratulations on the successful completion of your GK. Your story caught my eye since as you said "you were pushing the limits" with the size, which is kinda what I did too. Keep in mind that, as the doctors have probably already told you, with an AN of this size swelling may cause symptoms in the next few months after treatment, so make sure to notify your doctors whenever you feel something out of the ordinary.
My best wishes for a quick and uneventful recovery.
Marianna
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JimC -
freaky coincidence ;D
Jan
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Glad to hear things went so smoothly!
Now to get totally off subject.. how about sharing that recipe for the cedar plank potatoes? ;D
I desperately want a BGE.
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Hi JimC,
Congratulations on your completion of GK. It certainly will be very easy to remember the anniversary of your GK date. I hope your year and post treatment go very well in 2010 (and after....)!! I wish a very Happy New Year to you!!
It certainly sounds like things went very well the day of your treatment. Anyone who can cook roast and potatoes and have a few beers on the night of their treatment is off to a very good start!! I am amazed. I take that as a good sign.
Best wishes to you in your recovery. I hope everything goes very well!
Windy
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I just wanted to thank everybody for your well wishes. I'll be sure to stick around and share what symptoms might arise and my progress in general.
Jim
Amped2000 - The cedar planked mashed potato recipes has been sent!
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Happy New Year! What a great way to start the year, with GK behind you in 2009. Good luck with a speed and mild recovery!
Beth