Author Topic: Possible tumor growth  (Read 8551 times)

MDemisay

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Possible tumor growth
« on: February 08, 2012, 11:58:12 am »
 :-[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
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

Jim Scott

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Re: Possible tumor growth
« Reply #1 on: February 08, 2012, 03:14:31 pm »
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
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.

MDemisay

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Re: Possible tumor growth
« Reply #2 on: February 08, 2012, 03:41:55 pm »
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.
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

mindyandy

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Re: Possible tumor growth
« Reply #3 on: February 08, 2012, 03:44:00 pm »
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.
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

MDemisay

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Re: Possible tumor growth
« Reply #4 on: February 09, 2012, 12:30:01 pm »
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
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

mindyandy

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Re: Possible tumor growth
« Reply #5 on: February 09, 2012, 01:49:49 pm »
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
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

JAndrews

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Re: Possible tumor growth
« Reply #6 on: February 09, 2012, 07:18:41 pm »
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.
2.5cm x2.0cm cerebellapontine angle meningioma. 100% removal 2/2009. House Ear Institute. Dr Brackmann and Dr. Schwartz. SSD right ear. No balance problems except when really tired, no headaches. Transear hearing aide made no difference, tried it for 4 months.

MDemisay

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Re: Possible tumor growth
« Reply #7 on: February 17, 2012, 11:41:17 pm »
 :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?
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

Cheryl R

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Re: Possible tumor growth
« Reply #8 on: February 18, 2012, 08:54:42 am »
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
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

JAndrews

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Re: Possible tumor growth
« Reply #9 on: February 20, 2012, 02:00:09 pm »
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.
2.5cm x2.0cm cerebellapontine angle meningioma. 100% removal 2/2009. House Ear Institute. Dr Brackmann and Dr. Schwartz. SSD right ear. No balance problems except when really tired, no headaches. Transear hearing aide made no difference, tried it for 4 months.

ombrerose4

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Re: Possible tumor growth
« Reply #10 on: February 20, 2012, 04:39:01 pm »
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:)
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

Cheryl R

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Re: Possible tumor growth
« Reply #11 on: February 20, 2012, 05:59:09 pm »
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
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

MDemisay

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Re: Possible tumor growth
« Reply #12 on: February 21, 2012, 11:25:44 am »
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!
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

MDemisay

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Re: Possible tumor growth
« Reply #13 on: February 22, 2012, 09:45:46 pm »
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
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

Jim Scott

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Re: Possible tumor growth
« Reply #14 on: February 23, 2012, 01:44:43 pm »
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
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.