residual tumor

[oregon]

I am 37 years old and had surgery on June 2 for near total removal of a 3.8X2.3x3cm an. My neurosurgeon wants to do another surgery to get the remaining tumor. I am going to explore radiosurgery and perhaps after finding out the size of the residual will wait and monitor. Has anyone else faced a similar situation?

[Omaschwannoma]

Yes, "search" for Jim Scott here.  There are others and I'm sure with time they will come out of the woodwork.  Sorry I'm unable to answer your question directly except with only who has similar experience.

[Melissa778]

I just had my right sided AN removed in May, I do have some residual tumor left behind that I will be exploring GK options for in the coming months.  I know MSUscottie also had several surgeries to remove his AN, may want to look into his posts as well.

Best of luck,

Melissa

[oregon]

Thank you Arushi & Daydreamer....are you chosing GK for residual tumor due to it being the longest radiosurgery around and pretty proven?

[Jim Scott]

Oregon:

Sorry to be so late to post on this thread but I did respond to your PM, which I trust was of some help.

My neurosurgeon decided that he would take a 2-stage approach to my large (4.5 cm) AN.  First, he would 'de-bulk' it, that is, resection it down to a size that was amenable to radiation.  I had no real surgical complications and a post-op MRI showed the tumor at about 2.5 cm.  Three months later, having given my skull time to heal, I underwent 26 FSR treatments aimed at the residual tumor. They were uneventful and I suffered no ill effects.  My last MRI scan, 7 months ago, showed tumor shrinkage and necrosis (cell death).  I have an MRI scheduled for later this month to check on the AN and I'm confident it will continue to die off and shrink.   

My neurosurgeon made the decision to use de-bulking surgery then radiation and I agreed with his plan.  The primary goal was to destroy the tumor but the secondary goal was to avoid nerve damage and resultant complications.  Both goals were met and both doctor and patient are very pleased at this point.  I'm symptom-free and pretty much back to normal, some 2 years post-surgery.  I have no hearing in the AN-affected ear and my balance is not 100%, but closer to 85%.  That's about it.  No one experiences AN surgery and/or radiation with absolutely no ramifications.  Some have multiple post-op issues to deal with, others. few.  I'm grateful to be in the latter group and I hope you will be, too. 

Jim

[Jackie]

Hello oregon,

I can only assume that you live in the great state of Oregon, also?? Who did your surgery??? Very curious to hear your story.
Jackie

[TLC719]

Oregon,         My AN was large almost 3.8cm.The surgerns did not get all the an,they left about 1cm because of my facial nerve.they said if it starts growing  we will need to GK.It's been two years ,I just had a MRI last week.No sign of growth.I'm always so relieved after a good report...    Teresa

[mar50]

Hi Oregan  - I had a similar situation, both to you and to Jim Scott - part of the tumor was left behind intenionally to minimize damage , and then treated with Gamma Knife a few months later.   I am not qute 2 years post-treatment, and had an MRI a few weeks ago - not everything has died as hoped for, but it is unchanged since my last MRI 6 months ago, so now I can go a whole year until my next follow-up, which is postivie news as far as I'm concerned 

I have some minor hearing loss and tinnitus, some facial problems (only after GK, not after surgery), and minor balance problems.  All in all, very positive results.

Please let me know if you have any questions or would like to discuss anything.  I was also 37 at the time of my surgery (6 weeks after the birth of my son).  I wish you all the best with your journey!

[oregon]

Dear MAR 50,

was there a reason why the doctors did gamma knife pretty quickly versus waiting to see if there was growth? Thanks for your reply.

Oregon

[oregon]

Dear TLC790,
I want to be just like you! Your course brings me hope. Thanks so much.

Oregon

[Melissa778]

MAR50

you say you had more facial issues AFTER GK?  I  had translab 8 weeks ago for a approx 2cm AN,....1.6 at diagnosis, but def. growth between diag. and surg. according to doc, I'm feeling great, doing great...but they left about .5cm or more behind because it is attached to my facial nerve....GK has been recommended...And I'm nervous that I'm going to see more facial "effects" from the GK then I did with surgery being the location of the remainder of the tumor.  I have no facial problems now.....and it's a HUGE concern of mine going into GK.....Any info you can give me is appreciated...

Melissa

[mar50]

Hi Day Dreamer and Oregan - hopefully, Ii can answer both your questions......

The plan was from ther outset to do GK after surgery.  I should mention I also had an arachnoid cyst that was large and pressing on my brain stem.  The word that kept getting tossed around was "debulking", which I notice Jim said above as well.  So, my understanding is that the idea was to take as much of the tumor as possible while trying to retain hearing, etc., and then treat what remained with GK.  My understanding was that this was a newer approach. 

As for facial problems, after surgery I had some more severe problems, which faded pretty quickly.  And immediateely after GK, I was also fine, but app. 3 months later - I think about 12 weeks - I started experiencing numbness, drooping, etc etc etc.  It began on a Friday and by Saturday night I went to an ER (of course, I was out of town) and was diagnosed with a Bell's Palsy, and given some Acyclovir (I think).  Upon follow up, my neurosurgeon put me back on Decadron to alleviate the swelling.  It is now about 19 months later, I still have some paralysis.  It is still very very very slowly improving.  I can move my face, but it is assymetrical, I have one drooping eye and the "dimple" in my chin.

There is another member of these forums, Susan, who had the same thing after GK, but I think hers occured sooner than mine.  I  believe I have read the chances of this after GK are very small, like 2%, but you may want to check with your doctors.  I would not let it deter me from going the route I went if I had to do it again.  I only wish I had been more attuned to the possibilty so long after treatment - I kind of felt like I was "out of the woods", and maybe didn't seek treatment as soon as I would have otherwise.  But I don't know if it would have made a difference otherwise.

Please feel free to send me a personal message if you want to talk more, or post again and I'll respond.

Again, I want to stress I would not have done things differently knowing what I know now.

I wish you both the best!!!

Mar50 (Martha)

[Sue]

Hey Oregon!

Just wanted to know whereabouts you are?  I am in Vancouver, WA, but since I was born and mostly grew up in Oregon, I will always be an Oregonian.  Just curious.

Sue in Vancouver USA