Author Topic: new symptoms..can't be good  (Read 2603 times)

madison

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new symptoms..can't be good
« on: April 03, 2012, 04:54:04 pm »
Hello. It's been awhile since i've posted on the forum. I had gamma knife in 2008.  I've been getting MRI's every 6 months since then.  I've had issues, but nothing too bad..However, I am starting to experience some intermittent tingling/numbing sensations on the side of the A.N.  around my lower cheek area.  I just got my MRI done a couple of days ago and I see my neurosurgeon at Jefferson University in Pa. on Thursday. I also have some meningiomas that are small- except for one- that the doctor says isn't all that big, but it does keep increasing in size.  I'm really glad I have all of you to relate and share our experiences.
Has anyone heard good things about Jefferson for A.N. surgery?  I was going to univ. of penn. but my surgeon transferred. Thanks for any info you can give. Also, I'm not very computer savvy...could someone tell me how to post a pic on the forum?  :)
Pennsylvania:female: 40 yrs. old
R ACOUSTIC NEUROMA;GAMMA KNIFE FEB. 2008
multiple meningiomas
scheduled for translab @ Thomas Jefferson in Phila. Pa. on 6/18/2012

windy

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Re: new symptoms..can't be good
« Reply #1 on: April 03, 2012, 11:27:18 pm »
Hi Madison,

I am sorry to hear of your new symptoms. Unfortunately, I do not know how to advise you on how to post a picture. Also, I am not familiar with Jefferson in PA. I do relate to your timeframe of GK and possible growth though. I, too, had GK in 2008. I am also experiencing some new symptoms of pain in my cheek, gum area, and most recently nose. I have not had these symptoms until this year. It definitely seems to be trigeminal related. I am questionable about growth recently and am dreading my next MRI in July for fear that the growth is definitive.

You could enter Jefferson in the above "Search" to see if anything comes up. You never know. I have used the search feature more times than I can count.

Please keep us posted on your case. I sincerely hope all is going to work out well for you!

Windy
* Diagnosed w/AN (9mm x 11mm x 9mm) - 6-10-08
* GK @ UPMC w/Dr. Lunsford - 8-5-08
* Stable MRI - Aug. 2009
* 2 MM's Growth - Aug. 2010
* Lost 60% Hearing - Dec. 2010
* More Growth?? - Wait & Watch - Jan. 2012
* 1 MM Shrinkage - Aug. 2012
* 2 MM's Shrinkage - Aug. 2013
* Slight Shrinkage - Aug. 2014

chloes mema

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Re: new symptoms..can't be good
« Reply #2 on: April 04, 2012, 04:10:08 am »
Look for Posting a Picture in the search box, it should bring up good instructions from Jim. 

It took me a while but I finally got mine posted.

Good luck with everything, sorry to hear about new symptoms.

Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

FlyersFan68

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Re: new symptoms..can't be good
« Reply #3 on: April 04, 2012, 10:24:46 am »
Hi Madison,
  We briefly spoke a long time ago about a local support group here in Philly. I had surgery at Jefferson back in 2004. Rosenwasser and Wilcox. There were a few others on here that went to Jeff but I have not seen or heard from them in the longest. If surgery is eventually needed you may need a more experienced surgeon that deals with radiated tumors. I've heard that these tumors may become less defined following radiation but good outcomes have been reported especially with House Clinic in L.A. Maybe Jefferson has experience too. I believe Jeff opened this state of the art neuro center shortly after my surgery. Is doctor Bigelow still at Penn? Anyway, I just wanted to wish you the best and hope things turn out okay. Send me a message if you would like to speak further.
 -Steve

madison

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Re: new symptoms..can't be good
« Reply #4 on: April 04, 2012, 03:06:51 pm »
hi steve-
yes, Dr. Bigelow is still at Penn.  How are you familiar with him?  What are the details of your case/surgery?  I go to Jeff for the first time tomorrow, but it's the same neurosurgeon.  how are you doing now? I've heard great things about House, but most likely I will have surgery at Jefferson if it comes to that. It is brain surgery so part of me wants to go to House, but with all that entails and the fact that I have super hospitals so close to me makes me sway toward staying close to home. I guess i'll see what happens tomorrow. Hope to hear back from you! :)
 
Pennsylvania:female: 40 yrs. old
R ACOUSTIC NEUROMA;GAMMA KNIFE FEB. 2008
multiple meningiomas
scheduled for translab @ Thomas Jefferson in Phila. Pa. on 6/18/2012