How many people have had regrowth.. AN"s

[lmurray69]

I am courious how many people have had regrowth? This is very alarming to me..Are the DR.'s not getting all the tumor or are they new ones that have showed up...

[palms0@hotmail.com]

Hi my husband had surgery on 7-20-06 retrosigmoid to remove a 9mm an VERY SMALL and it seems from the 1st night post op there is a 4-5 mm enchancing area  the op reort says the tumor was removed BUT the dr feels part was left behind HOW CAN THIS BE WHEN IT WAS SO SMALL TO START?? i feel the dr did not get it all but WHY and this was never mentioned to us i found out by getting a copy of the mri report he has had an mri every 3 mos since surgery

it's really scary to think these things are not being totally removed, if we did not want it totally removed we would have opted not to do surgery in the first place. he just had another mri on good friday and now we wait till wed to see the dr again. i agree something seems very wrong.. are they really regrowths or just pieces left behind in the 1st place that the dr's are trying to claim are regrowths to cover their mistakes?
i can see with larger an's leaving some behind to preserve function but this is not the case for my husband.

[Jim Scott]

My neurosurgeon said that it's very difficult to be positive a surgeon has removed every single cell of AN tumors, especially large ones.  This is why he has adopted the two-tiered approach for large tumors, like the one I had.  He surgically 'de-bulks' the tumor- using the retrosigmoid approach in my case -  down to a smaller size (again, in my case from 4.5 cm to about 2.8 cm) then he and a radiation oncologist 'map' FSR treatments to kill the remaining tumor's cells and avoid 'zapping' facial nerves while doing so.  Both doctors stated that they have seen zero re-growths of AN tumors treated in this manner over the past 5 years.  Its certainly worked out well for me. 

Granted, I'm only 10 months post-surgery and 7 months post-radiation but my last MRI (in December '06) showed the beginnings of necrosis in the remaining tumor. I have another MRI scheduled for the end of this month and I'm almost looking forward to it.  I realize that acoustic neuroma tumors are problematic in many respects and no one guarantees anything but, as my signature says: 'so far, so good". 

Jim

[nancyann]

Geez,  I'm not having my 1st post-surg. MRI until 1 year out.    I had one the day after surgery & was told they got the whole tumor.
          I'm not looking foward to another one -   I'm so sorry this is happening to your husband Palms.  I don't know what to say....

[Jwh]

Hi,

I was just diagnosed with a regrowth!!  I had the retro surgery done in 2001.  The doctor told me he removed the whole tumor (1.2 cm).  Now it looks like he didn't remove it all - looks like residual tumor regrowth.  At my 3 month MRI there was enhancement of 4 mm ( I was never told that).  Now I'm looking at the Translab surgery in the future.  I thought after my first surgery that I would go on my merry way and not give it another thought - I guess not!

Jen

[jimmy r]

My 3cm tumor was removed by DR House and Hitselberger 20 years ago. The surgical report says that the entire tumor was removed. I recieved a letter about a year ago from HEI that there is a small chance for regrowth. I strated having pain in November( which i am told has nothing to do with the AN) so i had an MRI and discovered a 2.8cm tumor. If I remember right from my research, the odds of an AN are 1 in 100,000 and the odds of a recurence are .2%. The theory is that a cell remained and slowly grew. So have a periodic MRI  as directed but the odds of a recurence are slim.

Jim Scott - were you told that at 2.8 cm radiation was risky?

[MLB57]

Hello--I had a 1 cm rt AN removed Retrosigmoid Jan 2001--OR report said total removal, but yearly MRIs showed first what appeared to be scar tissue, but now last June (2006) I was told by several specialists that residual tumor had been left and AN is growing--so it actually is not re-growth per say, it never was totally removed so the little microscopic tumor cells left continued on their merry path of growth..  I will have radiation this summer, probably FSR at Mass General (Boston, MA) to protect my weakened facial nerve...

Regards, Mary from MA

[ppearl214]

Hi Linda,

great question..... so, for those dr's that claim they removed the entire growth, it is then possible they didn't and thus, the regrowth?  Or, are the dr's not fully disclosing that they left a residual, thus, potential regrowth?

I have no clue and I send huggles to all those that have endured regrowth. 

Phyl

[Jim Scott]

Jim Scott - were you told that at 2.8 cm radiation was risky?

No - because it isn't. My doctors are highly respected men of integrity and would not perform or recommend 'risky' treatments.  Is there a misunderstanding here?  The approach to acoustic neuromas has changed a lot in 20 years.  Now, both surgery and radiation are employed to lessen the possibility of nerve damage and ensure the tumor is rendered lifeless and unable to re-grow.

Radiation treatments are generally confined to tumors of 3 cm or less because larger tumors do not respond well to radiation for a number of reasons.  Hence, the recent practice of surgically 'hollowing out' a tumor larger than 3 cm, thus reducing it's size and then radiating it in small, daily doses (FSR) to avoid nerve damage and/or radiation complications while killing the tumor's DNA .  This was done in my case and was extremely effectively and hardly 'risky'.

Jim

[1wareagle]

To read about all these regrowths is so scary! I had my AN taken out 3 months ago and was told by Dr. Brackmann that a sliver of the tumor was left to preserve the facial nerve. He said that the sliver was so small that it would not show up on a MRI.  I was glad about the facial nerve being saved but was told that AN rarely grow back and if it does there was other options to kill it other than another surgery. What some of you are saying is that even if a small amount of the tumor is left it can start to regrow. Well in my case I know a little was left so I will have to continue to get yearly MRI and pray a lots!

Ellis

[Lainie181818]

Hi Ellis'
I also had Dr's Brackman and Hitz from house. I had my 1st MRI [ 1 year post surgery ] on Monday and I posted my results on this sight. It is titled " 1 year post surgery MRI " hope it helps.
Lainie.

[Kathleen_Mc]

My regrowth was found was found around 7 years post-op, this was my first post-op MRI. The surgeon who did the orginal surgery said he was unsure if he had left a cell or two behind or if I was just lucky enough to grow another tumor in the same spot. When the first surgery was done he had said he thought he had got it all but given the length of the O.R. I wouldn't be surprised if he had left a cell or two.
Kathleen

[lmurray69]

I think you all for your replys .I had mine removed in nov 06, DR House, he is really good. I know that the retention cyst is still there but he said .I didnt need followup MRI's .Now do i take my chance and say they got it all or what. I have had alot of ear infections in this ear. I put cotton in the ear to try and keep anything bad from going in .But you still have that risk. I got a really bad pain in my ear. feel like bones are shifting the hole is so small in the ear that i have to use a special eyedropper to put the drops in. I hope I dont give the newbys fause hope .. There is very good DRs at house. and yes I would return there if i had to.

[klg31728]

I had surgery in July of 1997 and they suspected some growth after a year.  No MRI was done right after surgery, so we didn't know if it was residual, scar tissue or actually growth. I started having MRIs every 6 months after that and there was no change until December 1999. In the 6 months since the June 1999 MRI, it grew from just a small spot to almost 2 cm (and they say they grow slow!)  It was larger than it was to begin with!  I had Radiosurgy at Shands/Gainesville, FL in Feb 2000.  I have MRIs yearly and it has not grown any more, but it still shows bright enhancement with the contrast.

[Yvette]

Good afternoon everyone, I am a new member. I had a 3mm tumor removed translabrinth style at the Mayo Clinic in January 2007. I go next week for a post-op MRI. I'm nervous about regrowth, despite my surgical team telling me that the tumor was not "sticky" and came off the nerves easily, and that they got it all. I guess we'll see.