ANA Discussion Forum
AN Community => AN Community => Topic started by: MDemisay on February 08, 2012, 11:58:12 am
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:-[I have a concern if my hearing nerve on my left side has been disconnected on my left side, why is it that I heard a rushing sound all of a sudden yesterday. I had growth detected last October 2011. Could it be growing still? Or worse growing more? I am still researching doctors, procedures and it is overwhelming!
Mike
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Hi, Mike ~
I'm admittedly speculating but I think that what you 'hear' is a form of tinnitus. That is not actual audible sound but more like 'static' the brain produces and does not necessarily indicate tumor re-growth. However, an MRI scan would tell you whether or not the AN has continued to grow. There are many threads on this site that discuss tinnitus. Just type 'tinnitus' in the 'search' bar. There are also many websites devoted exclusively to this condition that will give you a more complete explanation of tinnitus. Please try not to allow your fears to overwhelm you.
Jim
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Jim,
Thanks for your response. I can't have an MRI due to a prior surgery (in 1973) which left 70 metal clips in my brain. I had a CT scan with contrast done in October 2011 on which my Doctor recommended Gamma Knife which was to have been scheduled but was delayed because I am questioning his associate.
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Mike,
I'm no doctor and this is my opinion but doesn't radiosurgery need an MRI to help map? This is something I would ask my doctor. I know when I had CK done I had a CT and an MRI.
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Good question, Mindy?
But what happens when, you can't do an MRI? When making the decision based on the fact that there are 70 clips from a previous surgery present, the decision on whether to radiate is mine but there are risks that maybe associated.
I hate to be the guinea pig here, but isn't this a rare condition that I'm dealing with? I know that there are many on this board that have had tumor regrowth but how many of you have had an old unrelated surgery in the brain?
When I was doing my research in 2004, I had a Doctor offer to come out of retirement because he wanted to do my case, unfortunately, (or fortunately for me) his associate fell asleep during my interview, that was a deal closer for me! I got out of there quickly!
Mike
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I agree that the final decision is nothing but yours. Getting different opinions is a great option that we have. No decision is easy.
Good Luck Mike and keep us in the loop
Mindy
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The noise you heard may just be tinnitus. I have strange noises frequently and the constant high pitch ring--Dr. said its all considered tinnitus regardless of the sound of the noise.
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:o My tinnitus has gotten better and only "screams" at me when I shift my eyes to either side of my head such as when I look to the left or right without turning my head. This problem was a rushing sound that actually startled me and was a loud "shushing" that only lasted for a second. Could this indicate that my tumor is growing?
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Sounds like you have gaze evoked tinnitus. Happens to some with movement of the eyes. This does not mean the tumor is growing. Symptoms can add or change with ANs. There have been others on here with that type. Cheryl R
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I have had the rushing sound--and it scares me too. I also have different rings when I move my eyes to the left, but not to the right. Sometimes I have what sounds like a boulder dropping to the ground--or a loud quick bolt of a ring--the only way I can describe it. Every time it happens it scares me---even 3 years later. Sometimes when I'm sleeping is sounds like a gushing of water--and actually wakes me up.
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Cheryl,
I had never heard of gaze evoked tinnitus. So as I was sitting hear reading this I did some different eye movements and found that when I move my eyes to my left AN side my tinnitus gets much louder. Very interesting:)
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Lauren, it was talked about here a long time ago. Recently someone on the facebook AN mentioned he had this happen and his ENT said he didn't know anything like that could happen. I searched it here and posted there the name of it. I think I also Googled it then and read some info on it. So the guy was getting to tell the ENT. We need to have an AN class for ENT's! A few anyway don't have a clue! Cheryl R
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Dear JAndrews,
It "sounds" like you have "Merv" the brother of "Irv" my tumor! I am only joking of course ,but your tumor seems to be giving you the exact same troubles as mine is giving me!
Wondering where did you have your surgery? Was it at NYPresbetarian?
Mike
Hope yours gets better and that you experience some relief!
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Hi Everybody,
Today I got copies of my CD containing my CT scan with and without contrast. My report says that my 1.4 x 0.9 cm schwannoma measures now 1.8 x 1.3 cm. Is this big? My scans are from October 2011. The comparison scan was done two years ago on May 2nd 2009. I dropped the ball oops, didn't get a yearly scan!
How worried should I be?
Mike
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Mike ~
Your AN shows minor but steady growth. It is still considered 'small' but the obvious growth pattern justifies your doctors advice to consider radiation. The increase being relatively small, I don't think that skipping a scan for one year made any appreciable difference. Had you undergone a CT scan in 2011, your doctor might have advised you to watch and wait for a year, anyway.
Jim
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Nice to hear from you Jim,
I always value your opinion. I have not ruled out going with my docs oncologist/partner but found something about him a little disconcerting his level of experience targeting with my CT scan.
I will be contacting Dr. Friedman, Dr. Kondzuilka, Dr. Golfinos, Dr. Rush, Dr. Roland, Dr. Haas and Dr. Clinton Medbery Are there any others with whom I can talk?
Mike
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Mike ~
Not that I'm aware of - but Dr. Jonathan Haas oversaw (with my neurosurgeon) my FSR treatments back in 2006 when he was (briefly) at The Hospital of Saint Raphael in New Haven, CT. The FSR treatments were very successful and he was excellent so, based on that experience, I highly recommend Dr. Haas. I'll be interested to see what you think of him.
Jim
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So Jim,
Are you saying I have time to do further research, in your opinion? ^-^ Whew! Don't worry, I won't take long to do the research!
Mike
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My tumor was completely removed at House Ear. My tinnitus prior to surgery was a loud ring..since its been removed I get the crazy noises that make me think its back again..but it is not..MRI is clear..and I had the MRI read by 3 doctors..just to make sure! I do think by the size of your tumor you should have it removed, especially if you are young. But thats just my opinion....Hope all goes well with you:)
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Today I got copies of my CD containing my CT scan with and without contrast. My report says that my 1.4 x 0.9 cm schwannoma measures now 1.8 x 1.3 cm. Is this big?
My AN was 1.5 cms when I was diagnosed and I was told it was small. I believe that big (or large) is typically 4cms and above.
I don't think the growth is cause for alarm, IMO it's not substantial enough. That said, I'm not a doctor, so follow through with your plan to see what some docs think.
Good luck,
Jan
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Jim,
LOL! Do you know what my surgeon said? There's good news and then there is good news......The first bit of good news is that your tumor appears to have grown a little the second bit is that we will be doing Gamma Knife with lowest dose treatment you'll be outa there in ten minutes. His Co-Director said an hour.
I am still looking for opinions! However, I have copies of my CT scans ready, I just have to query Docs tomorrow.
Wish me good luck
Mike
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Just another NY doctor Michael Sisti is suppose to be very good as well....
Good Luck,
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Mike ~
Splendid news, indeed! Congratulations - and I hope your research bears fruit, soon.
Jim
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Jim,
I don't feel guilty here, there is something to be said for following a doctors recommendation, though.
That info would have been useful in 2010! Now, I have less time for planning what to do next......as far as getting a second, third and fourth opinion!
Thanks!
Mike