Author Topic: 6 mo update  (Read 7513 times)

goinbatty

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6 mo update
« on: August 14, 2007, 09:01:36 pm »
Got my 6 mo MRI results today; 9 mm wide x 6 mm AP (6 x 4.5 mm prior).  Fundal cap 3 mm and vertical height of 5 mm unchanged.  Follow-up set for 6 mo but I honestly don't think I can wait that long to take some action.  Leaning toward CK but still looking at GK also.  Tinnitis a bit worse since diagnosis.  Repeat audiogram noted slight hearing loss since initial audiogram in 1/07.  Occasional mild loss of balance when tired or when walking in the dark at night (using night lights for awhile now which helps).  Guess that's it for now.  Lots to think about.....
Thanks for letting me vent. 
1/2007 - 6 x 4.5 mm AN
8/2007 - 9 x 6 mm
CK at Georgetown 1/7/08-1/11/08; Dr. Gagnon
3/2008 - 10 x 7 mm
7/2008 - 9 x 10 x 6 mm (NECROTIC CENTER!!!!!)
5/2009 - no change/stable
4/2010 - 10 x 7 x 6 mm; stable/no change
5/2011 - 10 x 7; stable/no change
6/2012 - 8.1 x 7 mm
4/2014 - stable/no change

NF-2er

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Re: 6 mo update
« Reply #1 on: August 15, 2007, 10:37:35 am »
Hi Sandra;

   Why it does happen, tis a rare thing for hearing to appertain to normal following Tx and is often made worse either immediately by surgery or eventually by radiation.

   It seems to me since your AN is obviously active and seems destined to do it's dirty work, I don't blame you at all for not watching and waiting this out. Hearing loss is not a good indicator of tumor stability. Emotionally, I can say first hand that watching and waiting until the point of having to do something can leave a person a wreck.

   Re, CK vs. GK, it seems CK may have a very small edge in hearing preservation but everyone is so individual. Since you only mentioned radiation, I've an idea that's your Tx of choice over surgery. My personal choice is CK if irradiation is employed, but I truly think destiny plays a role in everyone's outcome, no matter the treatment choice.

   Best wishes Sandra! You'll get through this whatever you choose. That, I trust.


   NF-2er

ppearl214

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Re: 6 mo update
« Reply #2 on: August 15, 2007, 12:12:37 pm »
...Why it does happen, tis a rare thing for hearing to appertain to normal following Tx and is often made worse either immediately by surgery or eventually by radiation......

pls note the key word here is "often".... but not always, as it pertains to radiation... many of us that had radiation (key word is "many", but not all) have retained our hearing from what it was at the time of treatment..... NF2-er is correct on this and his point of everyone is individual....

I hope you are at peace with your process and whatever you decide to choose, goinbatty.  My AN was the same size as your's at treatment time and understand, emotionally, what you are enduring... as do many of us here (as you know).

Hang in there... we're cheering you on, regardless of what you decide... you do what is best for you.

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

goinbatty

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Re: 6 mo update
« Reply #3 on: August 16, 2007, 12:13:47 pm »
Thank you all for the words of encouragement.  I'm fairly certain it will be CK but now I've just got to find a center with enough experience in this.  The centers closest to me have been open for a few months to a year mostly.  The local one (Charleston, SC) is scheduled to open at the end of the year.  With the tumor having grown this much in 6 months, I don't want to wait that long.  I understand that this is not an emergent situation.  But somehow my mind doesn't view it quite that way.  I'll read back through previous posts but I'm looking at NC/GA/FL.  However, further travel is not out of the question though. 
1/2007 - 6 x 4.5 mm AN
8/2007 - 9 x 6 mm
CK at Georgetown 1/7/08-1/11/08; Dr. Gagnon
3/2008 - 10 x 7 mm
7/2008 - 9 x 10 x 6 mm (NECROTIC CENTER!!!!!)
5/2009 - no change/stable
4/2010 - 10 x 7 x 6 mm; stable/no change
5/2011 - 10 x 7; stable/no change
6/2012 - 8.1 x 7 mm
4/2014 - stable/no change

yardtick

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Re: 6 mo update
« Reply #4 on: August 16, 2007, 04:02:37 pm »
Goinbatty,
I'm going for my 6 mo MRI bright & early tomorrow.  Actually its 7 mo, I fell between the cracks because the ENT shipped me off to the neurosurgeon and he got me mixed up with someone else.  At least his office faxed the MRI request to the hospital.  I had called the hospital the end of July to get a CD of the previous MRIs and enquired about the next one (this one).  I was told to call back in a week.  I got busy and forgot.  I called this past Mon.  Next avaliable appointment was for Nov 19.  I don't think so.  Told the lady what's been happening and she got me booked in for Fri Aug 17 @ 7:10am.  I guess the squeeky wheel does get the grease.
Nervous, but I girl has got to do what a girl has got to do!!!
Does anyone know long it will take to get a CD and report of tomorrow's MRI?  I need it for Sept 6.
Anne Marie
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

goinbatty

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Re: 6 mo update
« Reply #5 on: August 16, 2007, 07:24:36 pm »
I go to a free standing radiology center and have gotten the CD later that day or the next day, depending on how busy they are.  But the report has to come through the physician.  This time the follow-up appointment was a week after the MRI.  Naturally I looked at the disc but couldn't tell measurements and such.  I just find it fascinating that this technology is available.  We should all consider ourselves very blessed. 
Anne Marie, good luck with your MRI.  Keep us posted.

Sandra
1/2007 - 6 x 4.5 mm AN
8/2007 - 9 x 6 mm
CK at Georgetown 1/7/08-1/11/08; Dr. Gagnon
3/2008 - 10 x 7 mm
7/2008 - 9 x 10 x 6 mm (NECROTIC CENTER!!!!!)
5/2009 - no change/stable
4/2010 - 10 x 7 x 6 mm; stable/no change
5/2011 - 10 x 7; stable/no change
6/2012 - 8.1 x 7 mm
4/2014 - stable/no change

sgerrard

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Re: 6 mo update
« Reply #6 on: August 17, 2007, 01:05:40 am »
As far as where to get CK, I asked Dr. Medbery that question on the Cyberknife forum, and he said that any CK facility, even a new one, should be fine, as long as the staff has training on CK and some prior experience with radiation treatment - which most or all of them do. Of course, I'm trying for CK at Stanford anyway, but like Bruce, I have folks to visit there anyway.

I didn't realize you could get your MRI on CD at the time, but a few weeks later, when my ENT told me I could, I phoned up the place, and they had it ready to go the next morning. I think the radiologist had the report written up within 2 or 3 days of the scan.

Sandra, I know the feeling, a change in hearing level prompted me to consider treatment rather than waiting any longer. It just seemed to me that if the hearing was going, the time for action was at hand. You will find the right decision for you in due course.

And Anne Marie, way to go with the squeaky wheel bit, you go girl. Good luck with the MRI.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

mhs

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Re: 6 mo update
« Reply #7 on: August 17, 2007, 10:37:57 am »
goinbatty (Sandra) - I hope I have the correct name -  I live in the Upstate of SC and am also leaning toward GK or CK when the time comes (my AN is now just 4mm & I'm due for another MRI in late Oct.).  I made several calls this week that you might be interested in.  Wake Forest Baptist in Winston Salem did 20 GK's on ANs in the FY that just ended (June 30).  They have done 174 total since 1999 when machine was installed.  The nurse there was very helpful and nice.  Stanford told me they have done >100 CK but <150 in the last year and have done 550-600 in the last 10 years.  They also have Trilogy as does Emory and Vanderbilt though that is a newer machine (at Emory & VUMC since 2004.)  I have an appt with HEI the end of Oct. for consultation, MRI, and hearing test.  They also do GK, so I plan to quiz them extensively on it.  I do need someone in NC or GA to monitor this little thing so I will be interested in what you find out.  There is a CK machine in Asheville so Stanford told me, but I would prefer Stanford if I go that route.  I want as much experience as I can for the one who messes with my brain!  I am a 62 year old female and have had some other health issues the last 10 months so I really don't want to have surgery.  Good luck.
mhs
4mm x 5mm left-sided AN diagnosed 4/07; currently watch and waiting as per Dr. Friedman at HEI

goinbatty

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Re: 6 mo update
« Reply #8 on: August 17, 2007, 03:28:28 pm »
Thanks for the stats.  That info is very helpful.  I'm pretty settled on CK.  I was trying to stay within driving distance.  I live near Charleston.  Roper Hosp's CK is supposed to open possibly in Dec.  I've contacted Mission in Asheville and was told they had performed CK on 6 cases;  the center in Marietta, GA and they had only done a few AN at the time I called.  I'm in contact with the CK center in Jacksonville, FL and awaiting more info.  It's almost a relief to know my mind is pretty much made up as to treatment.  Now the search is on as to where. 
By the way, have you attended the SC ANA support group?  I went to my first meeting in 4/07.  It was held at Palmetto Richand in Columbia.  I believe the next meeting is scheduled for 10/6.  You should try to come. 
1/2007 - 6 x 4.5 mm AN
8/2007 - 9 x 6 mm
CK at Georgetown 1/7/08-1/11/08; Dr. Gagnon
3/2008 - 10 x 7 mm
7/2008 - 9 x 10 x 6 mm (NECROTIC CENTER!!!!!)
5/2009 - no change/stable
4/2010 - 10 x 7 x 6 mm; stable/no change
5/2011 - 10 x 7; stable/no change
6/2012 - 8.1 x 7 mm
4/2014 - stable/no change

Jim Scott

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Re: 6 mo update
« Reply #9 on: August 28, 2007, 02:53:54 pm »

Does anyone know long it will take to get a CD and report of tomorrow's MRI?  I need it for Sept 6.

AnnMarie:

I'm located in the U.S.A. and my MRI scans (I've had 7 in the past year) are performed in a hospital and available on both film and CD within the hour.  My neurosurgeon always schedules his follow-up appointment with me an hour after the scheduled MRI.  He sometimes likes to use the films to show me stuff but if there is no problem he simply uses the CD to check on the tumor, which, in my case, is shrinking and shows definite necrosis.  FSR works for me.  I trust it will work for 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.

jb

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Re: 6 mo update
« Reply #10 on: September 01, 2007, 11:19:59 pm »
I've noticed that UT-Knoxville has CK and it looks like UNC-Chapel Hill has one now according to the Accuray website.  Not sure what their treatment numbers are.  I live in Charlotte so was looking for something in the region also.
2 cm right-side AN, diagnosed July 2006
Cyberknife at Georgetown Univ. Hospital, Aug 2007
Swelled to 2.5 cm and darkened thru center on latest MRI's, Dec 2007 and Mar 2008
Shrinking! back to 2 cm, Aug 2008
Still shrinking (a little), I think about 1.7 cm now, Aug 2009