ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: sharonov on July 28, 2011, 05:08:13 pm
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My AN was 1.4 x 1.3 . 1.1 for the past 6 years. This year I had my now bi-annual MRI and lo and behold there is growth! Not a heck of a lot, but it's now 1.4 x 1.6 x 1.1. I made an appointment with the neurosurgeon I've been seeing, and he immediately said I should have radiation. (His specialty is Gamma). I commented to him that when I first saw him he advised watch-and-wait since radiation would kill 15% of whatever hearing was in my ear. That hearing, by the way, has declined considerably and now my speech recognition is only at 20%. But I can still hear, and in a pinch could even hear on the phone if the person talking to me spoke clearly enough.
He acted annoyed, and said that recently they've found that hearing declines more over the years without radiation than with it. He was also annoyed when I mentioned that I had read in this forum that many people had swelling of the tumour after radiation and many had grown back. He told me that there was a 98% success rate and became so annoyed that he cut the appointment rather short (I always wait at least an hour to see him) and I didn't have a chance to ask him many of my questions.
Obviously I need another doctor. But I'd like to find someone who doesn't just push his specialty. I'm leaning toward Cyberknife if I have anything done, but would rather wait to see if it grows any more, since I don't have any other symptoms. My goal is to have my AN and I die at the same time, hopefully 20 years or so down the road (I'm almost 69 and think that 89 or 90 is a good time to move aside for the next generation.)
I guess I just want to vent right now, so excuse my rant.
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Those measurements don't seem like any major growth to me. See another doctor. If I was 69, I would watch and wait! It might take another 10 years before its large enough to have to do anything with it.....your doctor sounds like a real jerk
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I agree. You need to move on to a more caring doctor. What does your local Chicago support group say about their physicians. Dr. Kondziolka is in Pittsburgh and that's one of the best places for radiation. One member of our DC local support group is a surgeon and he went to Pittsburgh as many others. I remember him saying the radiation was done on a Thursday and he was back doing surgery on the following Monday.
Hang in there!
Mei Mei
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Thanks, Mei Mei (and everyone else.) I'm curious--with such a small tumour, why did you opt for surgery--and the "hardest" one at that! Have you had a complete recovery?
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What does your local Chicago support group say about their physicians.
I'm in the Chicago area and LOVE my physicians - neurotologist Robert Battista and neurosurgeon Robert Kazan.
Jan
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Thanks, Jan. I was hoping you would reply here whichwas why I mentioned Chicago Local Area Support Group. You're a great resource.
Mei Mei
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In my opinion I would wait...My tumor when first dx wa 1.4cm. At time of surgery it was 2.0cm. Because the tumor was/is entangled around my facial nerve, the neurosurgeon removed what he could and left the rest be. Now I sit at 1.6cm (largest part) and if and when it grows back then I'll consider cyberknife. I'd like as well for the tumor to die when I pass...(lol..knowing that in my death, I would be the one to kill Mr Booger and not at the doctors hands...hehehe)...
BTW..one MRI showed 1.3cm and the next showed 1.6cm..but when the doc put one MRI ontop of the other, he concluded that they were indentical in size
JO ;D
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;D Very well put!!!
I too would tread very carefully with this. I just read on here somewhere that someone was having trouble with the Facial Nerve after Cyber Knife.
In your case you can't say: You can't take it with you!!!! :P
Mei Mei
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Jan, I'm thinking of switching to Battista--but only because of you. I did consult with him two years ago, but was disappointed that he gave my MRI such fleeting attention. At the time I was suffering from a really bad flareup of my Trigeminal Neuralgia and was hoping to kill two birds with one stone, which is why I contemplated retro-sigmoid approach (the surgeon can then reach in a little farther and put in something that quiets the Trigem nerve.) I sent my MRIs to the guy at House that everyone loves (Friedman), a guy in Iowa that someone else recommended, and Battista. Friedman and Iowa guy had obviously studied my MRI and each had strong opinions and talked with me for a long time. Battista had not even glanced at it before my appointment, and brushed me off with a rather cursory discussion. Chandler, my current guy, had not only forgotten who I was but had not looked at any of my information before he walked in the room.
I wish they'd at least pretend that they gave a S***.
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Hi,
It looks to me that you need to keep searching for a doctor that will listen and pay attention to you. If your not happy with any of your doctors then you need to keep looking. There is someone who will listen, you just have to be patient and keep researching. One other point I would like to make is: Have you had you MRI done at the same hospital with the same machine for over the past 6 years? Sometimes a new MRI machine can be more accurate, or even the person reading it can interpet it differently. I went to the same hospital for 6 years and on the 6th try, it was slightly bigger, I found out that they had a new MRI machine. Megan, is the name of the gal who runs the Chicago ANA groups meetings. We usually get together every couple of months and the Downers Grove Library. We should have a meeting coming up fairly soon. If you are interested, I could look up her number and you could call her if you like? Send me a personal email. Hang in there, don't be satisfied with any old doctor, find one the makes you feel "warm and fuzzy" inside. They are out there! I wish you the best. Ann
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I agree with everyone else - take your MRI's and have another opinion. The measurement you gave is not a huge increase. I have been on W&W for almost 10 years, will reach age 65 in September, and also hope to take this "booger" with me.
Keep us updated,
Sheryl
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Good Morning,
I just noticed that I didn't answer your question. I was thinking about radiation and had an opinion in NYC, but then went to Johns Hopkins and they recommended surgery for as soon as possible. They couldn't fit me in until 2 months later. The doctor didn't use the word retrosigmoid and just said they were proposing to cut from the back. At the time I wasn't knowledgeable about the differences in the cuts. Dr. Friedman in HEI said he would do Middle Fossa. I really wanted to go out there but I was worried about leaving my father alone with someone we didn't know. As it turned out we still have her and she is quite trustworthy. My recovery: Not over yet. Am having a headache right now. Had occipital nerve excision on the three damaged nerves. The sub occipital area is still very painful.
Mei Mei
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Sharon -
the Dr. Battista you describe is not the Dr. Battista I know. He's always been very attentive, took a lot of time for appointments, etc. Perhaps he was having a bad day. If you schedule an appt., tell him Jan sent you.
Meagan Casey - the group leader Ann mentioned - went to Dr. Battista for her BAHA implant. As far as I know, she likes him just as much as I do; although I'll let her speak for herself. I think her AN surgery was done at Loyola w/Dr. Leonetti.
You can contact Meagan through a PM. Her user name on the Forum is Meagan.
Good luck,
Jan
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I very much appreciate everyone's feedback. Mei Mei, I'm so sorry you're having problems with headaches. Jan, I'm still in denial and am hoping against hope I never need this. If I do, I'm still considering Dr. Jho in Pittsburgh who also uses an endoscope but uses it differently from Shahinian. I'd love to have my trigeminal neuragia cured at the same time, but only if I absolutely have to.
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That's interesting that you mentioned Dr. Jho. I sent him my records and scans but he didn't think he could help me. I hope he can help you.
Sincerely,
Mei Mei
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So frustrating for you and unfortuante we have to be our own advocates even when we are hoping for expert advices.
I also recently diagnosed in the Philadelphia area? Any recommendations? I see from this website that Jeff is affiliated. I also hear good things about Penn Med.
Frustrated, annoyed and confused. Thank you. :-\
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Not sure what you mean by Jeff being "affiliated", but I believe it is certified as a Center of Excellence by the ANA - which means that very rigid standards in treating ANs have been met.
The ANA doesn't endorse or recommend docs/facilities, but they do certify them - which means they are excellent places to have treatment.
I think the ANA Symposium was held in your area in 2007 - the year I had my surgery - but I could be wrong. If it was, the docs @ Jeff were probably the sponsors.
Good luck,
Jan
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There's someone at Jeff who invented FSR. At least I think he invented it. At any rate, he's one of the experts who does it all the time. I have considered going there for FSR if I ever jump off the W & W wagon. Of course I forget his name at the moment.
I may be wrong and would investigate it further, but I think FSR is one of the best ways in the radiation world to preserve hearing.
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HI
Just want to let you know that the South West Chicago ANA group is going to meet at the Downers Grove Library this Sunday from 2 to 4 pm. We would love to have you there. I'm sure you could pick up a lot of information. If you would like to come and need futher information, just send me a personal email. Ann
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Good point, Ann.
Was hoping to go to the meeting this Sunday, but that's the day I turn the big 5-0 (GASP!!!) and have other plans.
I hope to get to the next meeting though.
Jan
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So when is the BIG DAY? It will probably be posted on Facebook. I hope you have a good one and great health in the second 50 to come.
Hugs,
Mei Mei
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Big day is Sunday, 9/25
Thanks for the well wishes. I hope the 2nd 50 are easier and don't involve anything growing near my brain ;D
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I hope the same wishes for you, too, Jan. May your second 50 be full of health, wealth and wisdom!
Mei Mei
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I, too, am 69, and the reason I'm having Gamma Knife is that my small bugger is headed for the cerebellopontine angle and I'd rather cut him off at the pass than have my brain stem compromised. NYU has the Leksell Perfexion, which, as I understand it is state-of-the art and far more accurate than previous models. I have serviceable hearing in my left ear, "very good" speech discrimination and would love to keep it that way but I know that may not happen. These choices are a crapshoot and we can only do our best with the information we have.
Good luck with your decision!
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Hi Seamar! Just had a ANA meeting @ NYU where the main topic was Gamma Knife. My AN is the same size as yours going into 5th year W+W "stable". If mine ever started to grow I would do the same thing your doing. I was very impressed with all they information I got that day and am sure your in good hands...Best wishes, Mickey
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Ny has great meetings!
Seamar, you sound like you are making the best decision possible for your situation and have researched it well. Keep us informed about you outcome.
Mei Mei