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Author Topic: All who had Radiotherapy  (Read 9963 times)

teripo

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All who had Radiotherapy
« on: August 01, 2011, 08:17:52 am »
I am writing to request anyone that had radiation on their AN and the outcome.Please respond no matter where you live ,any info would be greatly apprieciated.I am trying to decide which to do.I have 1.785 Cm .I had FSR opinion and Gamma so far.
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TJ

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Re: All who had Radiotherapy
« Reply #1 on: August 01, 2011, 12:23:53 pm »
teripo

I had Cyberknife radio surgery last November.  My AN was 1cm in size.  To try to save as much hearing as possible I have 5 sessions instead of the usual 3 sessions.  The AN was touching the cochlea, which does not like radiation.  So far I have lost a small amount of hearing, but not too much.   I were hearing aids to compensate.  My 6 month MRI showed some gain in size to 1.2cm, but that is very normal after radiation the AN swells up.  My next MRI is in November at a that time we are hoping it shows signs of shrinkage.

Hope this helps.

TJ
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Jim Scott

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Re: All who had Radiotherapy
« Reply #2 on: August 01, 2011, 03:10:27 pm »
Teripo ~

I was diagnosed with a 4.5 cm AN in 2006.  It was surgically 'de-bulked' to approximately 2.5 cm  and it's blood supply severed.  I suffered no real complications.  90 days later, I underwent 26 separate FSR 'treatments' (5 days a week for 5 weeks) that were uneventful.  I had no problems at all.  The tumor showed some swelling after a few months (but I suffered no symptoms) and then shrank a bit and showed the beginnings of necrosis within a year.   5 years later, I'm doing great!  Symptoms never returned.  I assume the AN is 'dead'.  Good riddance!

Jim
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4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

GM

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Re: All who had Radiotherapy
« Reply #3 on: August 01, 2011, 08:13:36 pm »
Teripo

From your posting, am I correct in that you have had both FSR and Gamma Knife...or are you considering Gamma Knife or FSR? 

I had Gamma Knife in 2003 for a 1.8cm tumor, it swelled over two years to 2.1 CM (totally normal for radiation treatments for the tumor to swell over a 2 year period) and it has been hanging out at 2.1cm since (thank God).

GM   
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Originally 1.8cm (left ear)...Swelled to 2.1 cm...and holding after GK treatment (Nov 2003)
Gamma Knife University of Virginia  http://www.medicine.virginia.edu/clinical/departments/neurosurgery/gammaknife/home-page
Note: Riverside Hospital in Newport News Virginia now has GK!!

teripo

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Re: All who had Radiotherapy
« Reply #4 on: August 05, 2011, 06:46:04 am »
I guess I am at a standstill.I do have appts. for Aug 22nd in Manhattan for 2 drs. I have had a consult for SRS with 5 treatments,Gamma,and Cyberknife with 3.I think CK sounds more up to date as it has a robotic arm.The 2 nuerosurgeons I see on 8/22 ,is just that, surgeons.I know whatever I do is a crapshoot but I am trying my hardest for a good outcome with the best treatments and Dr.
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Sue

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Re: All who had Radiotherapy
« Reply #5 on: August 05, 2011, 11:01:55 am »
Below my signature is a link to my AN story...if you want to look at that.  They didn't have cyber knife locally when I had mine done,, but they do now.  I think cyber knife is a little gentler on the system...but that's just me...

Best of luck!!
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Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

latirus

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Re: All who had Radiotherapy
« Reply #6 on: August 26, 2011, 11:00:05 am »
You might want to read this article (by surgeons trying to evaluate radiation treatment).  It was the best summary I found.  I talked to one of the authors, and he told me that he now thinks better of radiation than he once did.  I was a candidate for either treatment, so it was hard to decide.  I ended up by taking the risk that I'd be in the more or less 80% with a decent outcome from gamma knife, and I can't tell you how it will come out yet.

http://emedicine.medscape.com/article/857604-overview
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proudmomof3

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Re: All who had Radiotherapy
« Reply #7 on: August 26, 2011, 03:10:16 pm »
Hi,

I had GammaKnife (radiosurgery) back in April. My AN is about 1.5cm (They never would tell me exactly). I have lost at least 75% hearing in my right ear along with severe tinnittus.

My feelings about the surgery right now are neutral. I chose Gamma b/c I have younger children and did not want to go through a complex surgery, plus I am afraid to go through surgery ~ and I didn't want to be out of commission for a long time due to my kids. 

As far as how I feel? Well, no real difference after the surgery. I do NOT feel better as of yet. Actually, I have experienced a load of dizziness, nausea, severe migraines (the surgeon swears they are not related to the tumor), and chronic fatigue. I cannot get answers about any of these symptoms as to if they are related to the AN or not.  I know everyone is different so maybe all of these things are due to another problem I have- who knows.

I have not had a MRI yet, that is in October, so I will not know if the AN has shrunk or not. I doubt it has since my ear is still screaming constantly and none of my pre-surgery symptoms have disappeared. HOWEVER, not to be a pessimist ::) ::) ::) If you read this board enough, you will learn that it takes quite some time to recover from any of the surgeries, whether Gamma or the other. I don't expect a miracle just in a few months. I am discouraged, but I know I haven't given this a lot of time.

All I can say is, if it is small, you are fortunate to have the GAmma option if it doesn't bother you to have a tumor in your head. Gamma is EASY. In and out within a half a day, and up and about the next day. It is very convenient surgery. But do your homework and be sure your doctor's opinion is not biased one way or the other.

Good LUCK!
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Right AN - 1.5cm
Diagnosed 3/2011
GK  4/2011
Last MRI 5/13 - 1.5cm
SSD Right Side, Constant Tinnitus, Vertigo, Headaches

latirus

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Re: All who had Radiotherapy
« Reply #8 on: August 27, 2011, 10:33:27 am »
I was never told that gamma knife would improve my symptoms, only that, with luck, they might not get much worse.  The radiation oncologist said that symptoms such as hearing improved a tiny bit in a few cases, but I do not think that one  should not count on any improvement.  The main reason I opted for GK is that I had few symptoms, mostly the tinnitus and hearing loss, and I'd be happy to stay where I was.
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LisaP

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Re: All who had Radiotherapy
« Reply #9 on: August 28, 2011, 09:50:33 am »
Hi Sue,

I read your blog, thanks so much for sharing.  My next MRI is in Oct.  I am leaning more toward radiation if the MRI shows growth.  I have daily symptoms but still able to work and drive.

LisaP ;D
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LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W

PaulW

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Re: All who had Radiotherapy
« Reply #10 on: August 28, 2011, 01:37:33 pm »
I had Cyberknife 13 months ago.
I have been very happy with the results so far.
My hearing in my AN ear has actually improved, its not as good as my good ear, but remains within normal hearing range.
I have had a few challenges on the way.
Fluctuating hearing, tinnitus, balance and dizziness, but I had all of those things pre treatment too.
It wasn't debilitating, just very annoying at times.
Most of that happenned within the first 6 months.
The last 3 months have been very good, and I forget most of the time that there is anything wrong or different. About once a month for 3-4 days, I get some mild dizziness/wonky head.
Other than that its all good.
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10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

teripo

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Re: All who had Radiotherapy
« Reply #11 on: August 29, 2011, 07:09:28 am »
Thanks to all! I still don,t know what to do.,but leaning toward CK.I went to Dr. Haas and feel very safe in his hands and he teaches Ck therapy also his physicist is 2nd best in the the country,he said.3 treatments to be done I think.I also spoke to Dr. Friedman he said they are very good at this surgery.He said definitely SSD and 2 % chance of facial paralysis permanent.But the tumor will be gone with Translab.He said surgery be more difficult if I have to get it after radiation.I cannot do this now as I have my granddaughter to care for until December.I have a 1.8 and my hearing got worse since 1 1/2 ago.I think I have 30% voice recognition,although it doesnt feel that bad.Last year it was 85%.I had my MRI in June.Still wondering ,but like you people said I have time.
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Vivian B.

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Re: All who had Radiotherapy
« Reply #12 on: September 05, 2011, 07:21:49 pm »
I had radiation in Toronto Canada in June 2009. The procedure was pretty smooth. The incisions on the forehead swelled up a bit, but nothing drastic. Some nausea for about two weeks. Did experience severe pain several weeks later around the ear area, thought to be nerve irritation. I am one year post GK and so far my tumor is stable. I don't go back for another year. I am happy with the results. I lost more of my hearing since then but it's been gradual not suddenly and therefore not as noticeable. I don't regret my decision. Some of my symptoms are still there, such as som fullness in the ear, the numbness is gone but I still have some pain. Doctors are now thinking it's my jaw which by the way showed dislocated on a bone scan last week.

Vivian
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CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

deboline

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Re: All who had Radiotherapy
« Reply #13 on: September 09, 2011, 07:50:04 am »
Teripo,

Have you been able to make a decision? I know it is a tough process. I completed 5 treatments on the Synergy machine at John Hopkins last Wednesday.  I am feeling pretty good so far and feel I may have made the right choice as I anxiously await my first MRI and hopefully get good news.
My AN was 1.6cm and was a re-growth.  I had surgery the first time and a small piece was left to protect further damage to the facial nerve.
The Synergy machine is similar to CK - on the Synergy the table moves rather than the arm like on CK.  I was told that if I have any side affects - such as fatigue or hair loss, it would probably be two weeks after my treatments ended - so I am being positive and hope that I am going to skip any of that.
If you have any questions or just want someone to walk you through what it is like - I am more than happy to talk.
Best of luck!
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teripo

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Re: All who had Radiotherapy
« Reply #14 on: September 09, 2011, 05:16:03 pm »
Thank you for that...I do need to talk to someone.Mine is 1.8cm and I dont know still what to do?How can  I contact you?
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