I have a 2nd one cooking in my brain again, Same Side. Go Figure!!

[justafactoflife]

Hi All,

I was just wondering if anyone new the percentages of a regrowth of an AN on the same side.  Cause,...I have a 2nd one cooking in my brain again.  1cm so far in size.  I have been weighing which way to go with it this time.  Surgery or Gamma Knife and where to have it done?  The last time was at St Louis with a surgeon who no longers performs AN surgery.  I lost only 40% hearing and my balance was near normal after the first surgery. I did have some temporary complications with my facial nerves (drooping eyelid, and mouth) but that pretty much cleared up after a few months.  He did a pretty good job except for the fact that it regrew almost 3 years to the day.  I know to be careful not to allow them to use Decadron(sp)steroid to reduce swelling.  I had a Diabetic reaction to that and it was a mess.

I am going into this again with the outlook that I won't be as lucky this time.  I appreciate your input on traveling far away or doing it locally. Also,...I'm concerned about Radiation (Gamma Knife) and the effects it has on your good tissues in the brain.  What's the chances of it causing cancer?  I still am leaning toward Micro Surgery but I'm being really cautious and rethinking this,...this time.  I'm not so sure I want to travel and have my family pretty much left out of this.  If I do it locally, I have a great AN skull based, board certified, surgeon who was trained by the best hospitals and etc, etc, etc.  Does it really matter?  I have read posts here that show some of you travel to the distant hospitals like I did the first time but as you see, even the best have days where they didn't get it all.

[Battyp]

did they tell you they got it all the first time? 
I think I'd at least send my mri and reports to house to get an idea. 
I'm so sorry you have to go through all this again!  I honestly think once in a lifetime is enough!

[justafactoflife]

Yes, of course....He told me he got it all and I believed him until this year.  I'm not too concerned about it.  I know it's "Just-A-Fact-Of-Life".  This is better than saying the alternative you all have heard: "Shxx happens......

[Battyp]

I think you are going through one of my biggest fears....the return!
I've had three mri's and am not even a year out and my mom keeps telling me but they got it all...duh...it can still grow back!  of course this usually starts an arguement  lol 

I just don't see myself going through surgery again so I think I'd have it zapped if I have it come back. 
Big Hugs to ya!

[Obita]

justafactoflife:

I am so sorry you are faced with an AN again.  I found this board when I was waiting for my 2 year MRI results.  I was stressing and trying to find out how often they come back. I never did find out.  I did ask my doctors the day after surgery if they got it all.  They said:  We think so but it could re-grow if one cell is left behind.  ONE CELL.  How in the world do any of them NOT come back?

Best of luck to you, Kathy

[cookiesecond]

justafactoflife,
I am really sorry you are having to face this again. You will certainly be in my thoughts and prayers.
Lynn

[Static]

Justa,
  I hope you are at peace with whatever decision you make, I'm sure it will be a tough one knowing what you already know.   A piece was left of mine to save the facial nerve but that was my choice, I'm hoping I outlive the next one.  I'll  be thinking of you.
Stat

[justafactoflife]

BattyPrincess,Cookiesecond,Obita, Static, and others who are reading,

I've resigned myself to the fact I'll probably be deaf in the right ear because I was lucky the first time and somehow, I feel my luck has runout.  It's sad, but you just don't have any guarantees in Brain surgery except that it's Brain surgery.   Static, The facial nerve loss is a bit unnerving (no pun intended) but I personally think I'd rather lose it and hopefully know that I'll never have to have brain surgery again.  I've already filed for disablity based not only on the AN tumor(s) but other health issues.  See my replies on Social Security Disability. 

Thanks to all of you for your support here on the ANA Discusson forum.  Even your friends & family don't always understand all the health, work, and issues we are having to go through sometimes.  So,...I appreciate the prayers and support.  I feel so much better knowing that here on this forum, others have gone through the same thing I have.  I don't know what I'd do without it.

[Larry]

Justa,

You are right shXX happens.

I am in the same boat as you. My regrowth is 19mm at this stage and i am watching and waiting. If and when it gets bigger, then i will do something to it. I had middle fossa surgery the first time. I won't have surgery again. It's GK for me. Risks are everywhere. If you have surgery again it would be translab and total hearing loss. There are posters on this site that have had translab and their AN has grown back. There are no guarantees which ever way you go.

My advice is to go with the procedure that you are most comfortable with.

My empathies for you.

Laz

[Kathleen_Mc]

Justafactoflife: I fully understand where you are now. I found out about my regrowth 8 years after the orginal surgery. I stayed in the "watch and wait" mode for over 6 years and then had it removed surgically. I personally would have had it removed right away but at time of being told it was there my son was like 2 months old and I wanted to have another child so I waited until my daughter was 3. I spent the time weighing my options and in the end had surgery. It was the right choice for me.
Just wanted to let you know you're not the only one to have the same tumor regrow.
Kathleen

[justafactoflife]

Kathaleen,

Did you have surgery both times or was one a GK or other radiosurgery?  Also, was the 2nd time about the same as for recovery or worse?  I'm dreading doing surgery due to the last time (3 years ago) I had it, there were complications and I'm afraid of introducing free radicals into my brain, if I do GK version.  Either way is not without major risks.  I'm familiar with the surgery risks and I'm leaning toward doing it again.  Anyone who has had a regrowth, what are your opinions, ?

[Kathleen_Mc]

Justafactoflife: I had surger both times, one translab and one ret. The first surgery was 16 hours long and with that I lost the hearing balance and facial nerves....I didn't like the idea of gamma etc. and since I had nothing else to loose I had surgery the second time. It was only 4 hours and recovery was very easy compaired to the first time. I felt comfortable having the surgery the second time, I wanted to know it was gone and it was only necessary to have the surgery done for my psychological well being as physically it was not needed (it was driving me nuts knowing that thing was there and how sick I could end up being). It is pruely a personal decision and I mulled it over for a few years before I was able to have the surgery (children old enough for Mommy to be sick and they not KILL Daddy!)
Kathleen

[LCT]

Your are not alone.  I found out about my regrowth on the same side 10 YEARS after my initial translab surgery.  My surgeon still believes that he got all of the tumor.  After 5 years I thought for sure that I was free and clear - NO SUCH LUCK.  I have been monitoring growth for about 1 year now.  I have another MRI in November and I am leaning towards radiation when I have to do something.  The problem?  I am only 33.  My regrowth is about 11 mm right now.

[Kathleen_Mc]

Lct: I was 33 when my regrowth was diagnosed/told to me, that was 8 years after my orginal surgery. My orginal surgeon told me he thought he had got it all after the orgianl surgery and then when I went back to him with the regrowth he said it was possible he left a cell or two behind (who can blame them, a 16 hour surgery is a long day), then again it could be he didn't and I just am really unlucky and just grew another one. Hey if you're gonna have a second brain tumor it might as well be right where the first one was!
Kathleen

[Jim Scott]

The possibility of tumor re-growth was candidly addressed by my neurosurgeon (Dr. Issac Goodrich) before he performed the AN removal surgery and even before I had agreed to engage his services.   I just assumed that all nuerosurgeons planning AN surgery did this - but apparently not.  They should. 

Dr. Goodrich explained to me that no surgeon (who tries to save all of the important nerves in the area being operated on - which he did, very successfully) can ever get 100% of the tumor, so, he routinely recommends fractionalized radiation treatments (30 - over six weeks) within three or four months, post-op.  I agreed.  The radiation is intended to kill the cells of any tumor remnants and thus prevent it's re-growth.  I was told by the radiation oncologist that FR has a very good success rate as well as very few negative side effects.  I'll begin the FR treatments sometime in September (2006) with the understanding that in medicine, especially when dealing with Acoustic Nuromas, nothing can ever be 'guaranteed'.

Based on a CAT scan done 24 hours after the surgery, my doctor believes he was able to remove over 90% of the tumor.   I'll have an MRI on 7/21 to see exactly what is left and we'll find out if he really did remove over 90%.  I certainly hope so.   I'll add the results of the post-op MRI to this post when I have them..

UPDATE:   The MRI (taken on 7/21/06) showed less than 2 cm of AN tumor remaining...probably closer to 1cm.   My nuerosurgeon couldn't tell the exact  size for certain so, being a conservative physician, he purposely gave me a conservative estimate.  If he's correct, that would indicate about 70% of the tumor was actually removed, perhaps even more, which I suspect because, since the surgery, all of my pre-op symptoms have either been relieved or have disappeared completely.  Il have another MRI (scheduled for 9/5/06) - just before the radiation treatments commence - in order to give the radiation oncologist a fresh look at the 'target'.  I am trusting that - between the surgical removal of the mass and the radiation treatments to kill the cells of the (remaining) tumor - I'll finally be done with this thing.