Author Topic: Over due update  (Read 1950 times)

28Lisa

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Over due update
« on: April 30, 2010, 04:24:45 am »
Sorry all I have been mia for quite sometime, but I'm back. 

I received my results for my second MRI since surgery of 2007 yesterday and I got some good news and not so good news, the good news is my tumor shrunk to almost half its resected size without any therapy what so ever, the dr joked that the MRI technician reported that the shrinkage was due to radiation therapy in which I did not have, they were baffled looking and showing me the scan, comparing it to my 2008 scan.  Im suppose to get a call today explaining why it shrunk, hmm should be interesting lol  The bad news is that since Im almost 3yrs post opt Im going to be partially disabled for the rest of my life meaning low coordination on the left side, the eye issue, the tightness in the face (left side and the tingling burning sensation on the right side, oh and the walker lol sad but true.  My main focus now is Management, learning how to cope with being so young and all lol, (yes you have to laugh cuz if you dont you'll be stressed and depressed), that's my saying anyways lol,  Since the weather is getting warmer Im going to start back with the occupational therapy to work on coordination since the dr said im not weak on either side(which is(good).

Next MRI is 04/11

Will fill everyone in on what the Dr says later today...Anyone here ever experienced that, having your resected tumor shrunk without any medical help?  Just curious.
A.N. 4+cm, 9/11/07 @ NY Presbyterian Hospital, Dr. Phillip Stieg
post opt - partial facial paralysis on left side, total hear loss on left side, speech altered, loss of taste, smell,balance, loss of sensation on right side from shoulder down, low motor skills, eye weight 11/07

sues1953

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Re: Over due update
« Reply #1 on: April 30, 2010, 07:39:30 am »
Hi Lisa,

You have certainly suffered, I am so sorry you have had to go through all of this.  I am pre opp so I can't help with your question but I have one for you.  They obviously didn't get all the tumor out at the time of surgery.  I was just wondering what was said to you about that.

Sue in Michigan
3.2 cm AN Right side diagnosed 12/4/09
Translab surgery May 2010 with Dr. Jack Kartush and Daniel Pieper at Michigan Ear Institute.
Successful surgery .5mm left on facial nerve.  Full facial movement. SSD, Tinnitis, tongue and lip numbness.  No headaches.  Back to living life.

sgerrard

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Re: Over due update
« Reply #2 on: April 30, 2010, 09:02:28 am »
I have heard of residual tumor scraps shrinking up later after surgery. I think the theory is that blood supply has been disrupted, and the residual withers away. Good riddance, too!

Despite all the set backs you have endured, you sound to me like you are doing a little better these days coping with it all. If LOL gets you through it, then LOL away!  :D

I wish you well, and hope you find some peace with it.

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.

Jim Scott

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Re: Over due update
« Reply #3 on: April 30, 2010, 01:29:05 pm »
Hi, Lisa ~

Although I'm sorry to learn that your AN-related partial disability is deemed as permanent, I'm fascinated by the fact that your debulked AN has spontaneously shrunk.  I concur with Steve that cutting off the blood supply to the tumor (via the resection) is likely the cause of it's demise.  My neurosurgeon performed a debulking procedure but had me undergo FSR treatment as a follow-up, to insure the tumor's death.  It seems to have worked.  :)  I trust that time, patience and your youth will all aid in your ultimate recovery.  

Jim
« Last Edit: April 30, 2010, 03:45:36 pm by Jim Scott »
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.

28Lisa

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Re: Over due update
« Reply #4 on: April 30, 2010, 02:46:06 pm »
Thanks guys, I just got the call back from the dr and they are still unsure but they gave me the possibility of removing the blood supply of the tumor therEfore causing the shrinkage since 2008. 
A.N. 4+cm, 9/11/07 @ NY Presbyterian Hospital, Dr. Phillip Stieg
post opt - partial facial paralysis on left side, total hear loss on left side, speech altered, loss of taste, smell,balance, loss of sensation on right side from shoulder down, low motor skills, eye weight 11/07

 


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