First post-op with neurosurgeon on Jan. 10th

[emom]

Hello everyone.  I'm a month out from my surgery now, and physically and mentally doing much better.  I'm even getting less 'wonky-headed', yeah!!!

I really dread seeing the neurosurgeon again, mostly because I would like to go pretend this never happened and that I don't ever have to have anything to do with doctors again (I know, I know.....let's have a little realism here.  But I CAN wishful think, can't I?)

At any rate, my 2cm by 1.8 cm tumor was alllllllllllllllllllllllllllmost completely removed on Dec. 7th.  They had to leave a 1mm portion of the tumor in order to avoid facial paralysis, and I really am grateful for that.  I'm also grateful that I have had such a smooth and easy - relatively speaking - recovery.  But I got to thinking about some things, and reading some articles and an awful thought occurred to me.  I'm hoping someone here can tell me to not sweat it.

Here goes.  I know there will be 'watching' going on to keep an eye on any regrowth, and while I hate the idea, I can live with it.  I'm hoping that they will say "See you for your first followup MRI in a year."  I have to explain that I am so claustrophobic that I came out of surgery fighting tooth and toenail (with my nonexistant strength, lol) to get the oxygen mask OFF MY FACE!!!!!!!!!!!!!!! So you can imagine with what joy I look forward to MRI's and how I would love to have a year free of them.  Then I read on some AN explanation site that sometimes radiotherapy type 'knife' surgery is done on the remaining tumor area to make sure it doesn't grow.  Tell me that that is not the 'norm'.  I'm not sure I could handle any more at the moment, after the first 12 hour surgery.  Cowardly though that may be, I would like to be doctor/proceedure/etc. free and get on with my life for a bit.

Any infor on this is appreciated.

emom 

[Jim Scott]

Hi, emom ~

I'm not a doctor nor do I claim to be omniscient in matters involving acoustic neuroma surgery and radiation treatment.  However, I do know, from my own experience and reading the experiences of other AN patients on these forums over the past 4¾ years, that when the surgeon chooses to leave a small bit of tumor behind, usually for the purpose of protecting the nerve and avoiding facial paralysis, they either observe the remaining AN for possible re-growth with annual MRI scans and/or go straight to radiation treatment following the surgery to head off any possible re-growth.

This was my experience.  My neurosurgeon 'de-bulked' my large (4.5 cm) AN down to approximately 2.5 cm, then, (90 days later) I underwent 26 FSR 'sessions' to destroy the remaining tumor's DNA and, in effect, kill it.  MY AN symptoms disappeared within 24 hours of the (retro) surgery and I enjoyed a rapid and complete recovery.  The FSR sessions were uneventful (I'm not claustrophobic) and successful. My last MRI showed necrosis (cell death) on the tumor and the beginnings of shrinkage.  I had to skip 2 years of MRI scans due to financial reasons but hope to be able to have an MRI in 2011.  However, I feel great, not a hint of any AN symptoms, and my very (medically) conservative neurosurgeon hasn't requested that I have another MRI so I'm not overly concerned.  

So, to answer your question, yes, post-surgical radiation is common on ANs not fully removed but it is not necessarily 'the norm'.  Some doctors don't want to take the chance the remaining tumor cells will re-grow so they have the patient undergo radiation.  Some simply observe the remaining AN via the annual MRI scans and only recommend radiation if and when growth is clearly noted.  In my case, the radiation was part of the overall plan to rid me of the AN and do everything possible to avoid facial immobility, later.  It worked.  

In your case, with only 1 mm of tumor remaining, I doubt your doctor will recommend radiation.  However, even if he does, ultimately, the decision to undergo radiation to kill the tiny bit of tumor that remains is yours, alone.  If the very thought of radiation is depressing to you - and you feel symptom-free and not concerned with re-growth - then radiation does not necessarily have to be in your immediate future.  

Jim  

[emom]

That's kind of what I am hoping - that unless and until there is regrowth.......they leave me alone.     Need I also mention that not only am I claustrophobic but I am doctor/nurse/needle/drug/hospital/procedure phobic???  Sigh.  I am sure I will get over some of that, but as I said, I am full up at the moment and want a vacation.

Here is hoping the doctor agrees with me. 

Thanks,
emom

[leapyrtwins]

Slight bit of a hijack here - sorry yet again, Phyl  - but did others see their neurosurgeon post op?

I'm just curious because after my AN surgery in May 2007 the next time I saw my neurosurgeon was at the August 2009 ANA Symposium where he was speaking.

Post op all my follow up was done by my neurotologist.  Is this normal 

(And please note I said is "this" normal; not "am I" normal)

Jan

[emom]

That's an interesting question.  

My surgery was done at UNC Neuroscience Hospital in Chapel Hill, NC.  My ontolaryologist was Dr. C. Buchman, and my neurosurgeon was Dr. M. Ewand.  I was released from the hospital on the 11th of Dec., and had a followup with Dr. Buchman on the 16th.  He decided my stitches weren't ready to come out and said to come back to see Dr. Ewand in a week.  It turned out that Dr. Ewand wasn't available on the day Dr. Buchman had indicated, so when we called, Dr. Ewand's office said "We'll be in touch after the holidays.  I was sent notice of an appt. with Dr. Ewand for this coming Monday.

I am assuming (and I do know what an ass that can make me, lol) that we are going to talk about the remnant of tumor that was left to preserve my facial nerve?  Neither Dr. Buchman nor Dr. Ewand officially 'released' me from care, so that may be what this is, along with the discussion of what we do with the tumor remnant situation.

They told my husband that they thought the tumor remnant might die from lack of blood.  Here is hoping that's true and this is to tell me about the timing of my first MRI followup.

Also, because UNC is a research/teaching hospital, there may be slightly different protocals.  I will let you all know!!
emom

I forgot to mention my stitches were removed Jan. 3 by my PCP here in Charlotte, NC.

[opp2]

I did Jan. I saw him 3 months post surgery, flew back to BC for a whirlwind 24 hour trip with visits to the doc and two AN friends...didn't get to see our Adrienne though.

Back on track...hang in there emom. Jim gave you some sound advice. He's quite knowledgeable in regard to the experiences of the members of the board and what seem to be common practices for some neuro surgeons vs others.

[emom]

Thanks.  I will.  And I appreciate Jim's advice.

One of the things he said about some neurosurgeons wanting to go ahead and do the radiation therapy - well......I don't think I will go that route.  As I understand it, an AN can regrow or start growing even after CF or GK....right? 

If that is the case, why undergo the unpleasentness of radiation treatment UNLESS there is actual growth?  In other words, if I have a chance of any regrowth, why not wait til it is ACTUALLY necessary instead of doing it, and finding out somewhere down the line it's still necessary.  I don't know if I am being rational , but am coming from the "if it ain't broke - don't fix it!!!" angle here.

Hopefully, Dr. Ewand and I will just discuss first follow-up MRI timing.

Thank you all for the advice.  It's always a comfort to be able to ask even dumb questions here and get practical answers.
emom