ANA Discussion Forum
General Category => Inquiries => Topic started by: teripo on August 01, 2011, 08:17:52 am
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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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my husband is looking into gammaknife or cyberknife for his AN. Has anyone had experience with certian doctors or places in the Chicago area or Illinois? He has hearing loss so far and it is about 1.6cm x 1.5 cm x1.4cm. We are seeing a neursurgeron at Loyola this month after seeing the ENT neurosurgeon from Loyola.
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see your inbox for telephone number!
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Hi Teripo, I know you have had concerns ( like all of us) as to which type of radiation and where to go..I might have a really great tie breaker for you. Dr. Christopher Linstrom, A Neuro-otologist, New York Eye & Ear, lower Manhattan, 14th St. 212-979-4000, bring your last MRI and report. He will examine you and then read your scans. He is very very decisive and will immediately give you his opinion. After I had a few "2nd" opinions, I was referred to this doctor. He read my report and viewed my MRI and told me exactly what I should do and even who I should see for treatment. He didn't say maybe you should do this or do that - he says whats on his mind. I felt very secure in my decision about CyberKnife after my appt with this very wise doctor. Good Luck, JLR
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Thank you I will look into that...Where did you go for treatment and how many?
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I had Gamma Knife at Wake Forest (NC) in Dec 2006. Everything went well. The last time I had an MRI the AN had decreased in size by 50%. I was supposed to have an MRI last Dec, but missed it due to the weather. I kept putting it off for various reasons. I will be going soon. I am very happy that I chose GK, and I love Wake Forest and the people there.
Grace
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I had CK over three years ago (39 months ago). I had a pretty severe reaction to the treatment but an incredibly positive outcome:
Immediately after getting CK, my balance got (subjectively) about 15% worse (for around six months) and I suffered very profound fatigue (so bad that I could barely lift my head off the table and sit up straight and I was short of breath, for about a month). Strangely, my tinnitus immediately reduced in volume about 90% after treatment and has never returned since to its former loud volume. My doctor (the preeminent Dr. Chang at Stanford) told me that the tumor was reacting strongly to the treatment, which was a good thing, and I just needed to ride out my fatigue and dizziness (or take steroids, which I declined). He assured me I'd feel better soon.
Boy, was he ever so right. After swelling 33% in volume (at the 5-month mark post-CK), my AN shrank an almost-unheard-of 59% over the following six months (as shown on my 11-month MRI). It is now smaller than when it was first diagnosed. My balance began improving six months after treatment, and my energy came roaring back. I'd say my balance now feels like it's about 80% better than it was at the time of treatment.
I did lose a little hearing (around 15 dB) in my midrange and high frequencies, but I also gained a little bit back in my bass frequencies. Had I gone with surgery, I would've left the operating room completely deaf on my AN side (because of the size and location of my tumor; YMMV). Instead, because I opted to receive CK, I still have very useful hearing on my AN side.
If you want Dr. Chang's opinion (which he gives at no charge), email him at sdchang@stanford.edu. I cannot speak highly enough of him. He, and CK, gave me my life back.
Best wishes,
TW