another re-growth after 8 years

[JB914]

Originally diagnosed with right side 8mm AN in 2000.  removed at St. Vincent's by Dr. Luxford and Dr. Day from House Ear in Dec 2000 Middle Fossa approx 11mm.  Right SSD and major balance issues.  2003 MRI report was normal.  2009 report shows 3-4mm enhancment. 

i'm watch and wait for now w/ follow up MRI in 1 year. 

I have noticed some hemifacial spasm yesterday on the right side.  I'm just getting over a severe ear infection on that side, so, i'll see if this continues as it could be related to the infection and stress from the re-diagnosis.  i have a appt with an ENT on Friday to follow up on that and get a consult on possible TransEar device and hearing tested in my good ear.
A Little MRI Hx is in order. 

In 2000 my first MRI was ‘normal’.  But, they didn’t order the MRI with contrast, so, I had to repeat the MRI.  I literally had a verbal argument with the head of Radiology who said “you don’t have cancerâ€? and there wasn’t anything on the MRI.  The repeated MRI showed the tumor.

When I requested the new MRI this year I was very specific that I needed to have check for right and left AN with and without contrast.  The first MRI authorization came back as “MRI of the Brainâ€? which was exactly the same thing done in 2000.   Once I got the correct MRI authorized  the radiology report said 'no changes' but, i asked for a fax copy of the report.  i had dropped off my 'pre surgery' MRI from August 2000 with the imaging center, so, the Radiologist could have the 'before' films.  the 2003 films were not available before my MRI since the other imaging center couldn't find them.  So, my 2009 report says 'no changes' from previous study.  Huh?  the 'previous study' was done in 2000 BEFORE  surgery.   

So, I had the center where my 2003 MRI was done find my studies and took all 3 sets, 2000, 2003 and 2009 to House Ear in LA.  Dr. Luxford called me to confirm the 3-4mm enhancment and that the 2003 study had some enhancment, but, could have been interpreted as scar tissue. 

you really have to take your care into your own hands!!

[satman]

hi jb,was the tumor fully removed on your 1st surgery and now growing,or was a little left due to location ?

[Kaybo]

Hi JB914~
Welcome to our little group.  Sorry that your AN has come back but glad you found this site.  We are here to support you and help you in any way that we can!

K

[bell]

JB,
 I am so sorry for your regrowth.  I am glad you are now at HOuse, Ear.  Yes, you really do need to take things into your own hands and be proactive.  Try to keep positive and I am glad that they caught the AN when it is small.  Keep you in thoughts and prayers.   Bell

[JB914]

hi jb,was the tumor fully removed on your 1st surgery and now growing,or was a little left due to location ?

the surgeons thought they got all the tumor, but, apparently a few cells remained and decided to spawn.

[EJTampa]

Hi JB914,
 
I think regrowth will be in the back of my mind for a long long time.  I figure I must have some genetic marker that made me one of those 1 in 100,000 to grow a tumor.  If so, I would imagine that, even without a piece being left behind, the schwann cells could decide to grow out of control again.  It's something that all of us have to deal with, the possibility of regrowth.
 
That said, I am sorry that you have to deal with it now.  Being so small, I hope that's not the total cause of your hemifacial spasms.  I've heard that some tumors are small and mighty, but this one would take the cake!  I am very interested in hearing if the spasms subside when your infection is gone.  Watch and waiting for a year wouldn't be much fun if you had to deal with the spasms all the time.
 
You sure seem to be taking all this in stride!  I don't know if I could keep such a positive attitude if I was told my tumor was growing again  .
 
Ernie

[Jim Scott]

JB:

Hello - and welcome.  Thanks for joining.  Of course, I hate to see any AN 'veteran' have a re-growth, but it can and does happen.  We all know that if even one cell of the tumor is left behind, as it often has to be to preserve facial nerves, re-growth is possible, even if it isn't probable.  That's why I welcomed my neurosurgeon's suggestion that he debulk my large AN, then attack the remainder with FSR.  I'm very optimistic about the future and don't dread my annual MRI scans, only the co-pay.    I completely agree that we have to be pro-active with our medical care. 

I hope and will pray that your AN does not grow and that whatever symptoms you're experiencing will soon abate and be attributable to the ear infection you mentioned. 

Jim

[klangel]

JB, so sorry to hear of your regrowth. mine started growing back recently too and it terrifies me. they left some of mine in to try and preseve the face but now... well now i have to have the mri every 6 mos instead of every year which also scares me alot. that thing does real bad stuff to me all kind of uncontrollable twitching and cant walk for about 3 hours after and terrible noise and headache after. the surgeon i see now said probably gamma knife in the next couple of years. a little more comforting but who knows? im 4 years out of 18 and a half hour translabrynthe in june. sorry you had to go through all this but im glad you found this forum. it really helps.     kerri

[JB914]

 
You sure seem to be taking all this in stride!  I don't know if I could keep such a positive attitude if I was told my tumor was growing again  .
 
Ernie

i got two girls 8 and 5, so, it's all about them Ernie!     the infection seems to linger, but, the spasms seem to have stopped.  being out of warranty sux.