Radiation post-op??????

[TNAN]

Hi all,
I will try to keep this short and sweet. First thanks to everyone for this site!!! Without it I would have been more of a basket case. I was diagnosed just before x-mas 2010. Large(3.2 x 2.5 x 3.3) AN left side. Chose drs. Pensak and Theo in Cincinatti, OH. I had the translab approach 2/16/11. I consider myself vey lucky in that I have never had many facial issues and after 14 hours of surgery... I woke up!! Granted I was sicker and far more off balance than when they put me under, but as we all know, it could have been worse. So anyways, my tumor is very "vascular" and they spent as much time dealing with the blood as they did trying to remove the tumor and after a malfunction with one of the sensors monitoring my body they stopped the surgery after removing only 40%.  I met with my doctors last week and they said I have two options; Radiation or another surgery. I realize that this is a decision that most all of you have had to make. The size of my tumor didn't leave me with much choice and honestly now that I have the choice I wish they would make it for me.  My neurosurgeon said that if it were his brain he would have radiation to try and kill some of the blood supply. Either way I guess I will probably end up needing both and that is where my fears and concerns are.

1)Which one first?
2)Has anyone had any experience with surgery after radiation?
3)If so, does it really make things more complicated?

[ppearl214]

Gonna try to help.

You had a terrific team in Cinci and suggestion is to attend the ANA Symposium in Cinci the weekend of June 17.  Dr. Tew/Theo are co-sponsors of the symposium and it's a great opp to discuss and research with multiple AN treating professionals that will be in attendance (surgical and radio).

1.  Going to suggest Jim Scott, a moderator on this site that had his tumor "debulked", then the remaining/residual radiated. I believe he had FSR and was treated in CT.  He would be a terrific referral.
2.  Surgery after radiation.... I know of some but names are escaping my poor, old, zapped noggin but Stoneaxe/Bob comes to mind as fairly recent (in past couple of years). He had Proton Radiation at MGH (Boston) and didn't achieve as hoped, so he had the AN surgically removed at MGH.
3.  There has been discussions in the professional realm that if a tumor is radiated, that it can make surgery trickier to remove the tumor.  Try doing a "Search" option here on the Forum home page..... I believe there have been discussions in the past re: this.

Phyl

[CHD63]

Hi TNAN .....

Adding my welcome to the forum and hoping to meet you in Cincinnati in June.

I did not have radiation, but I am facing a second surgery for regrowth of my AN.

In one of the workshops at the Chicago ANA Symposium, two doctors presented a session including a video of the surgical removal of an AN.  During the Q&A following it, the question was raised regarding difficulty of surgery after radiation.  Essentially what they said was that yes, following either radiation or previous surgery, there is always more scar tissue to work around, but that did not preclude a successful outcome ...... just extended the time it took to do it.  They also said that where possible, they go in from a different surgical approach, if it is following a previous surgery ..... to avoid as much scar tissue as possible.  Hope that helps.

Let us know how you are doing.

Clarice

[leapyrtwins]

TNAN -

first let me stress that I'm not a doctor and second let me stress that I have absolutely no personal experience with this.  My AN was completely removed by surgery.

That said, you've got a couple of stellar doctors (I was really impressed with Dr. Pensak when I met him @ the ANA Symposium in Chicago in 2009) and I'd take their advice very seriously.  Most docs though won't make a decision for you - they want you to make up your own mind which IMO is how it should be.

Debulking has become more common than it used to be and from what I've heard it's very effective.  On the other hand, having had surgery myself, I personally wouldn't hesitate to have it again if my doc thought it was a good idea.  I can say that because my surgery was almost 4 years ago and the "horrendous" parts (like the sicker and far more off balance issues you refer to in your post) are pretty much a distant memory these days.  Your surgery memories are obviously a lot fresher, which might have some bearing on your decision.

Do you get the idea that I'm on the fence here?  If so, you're right.  I honestly don't know what I'd choose if I were faced with regrowth.

My best advice is listen to your docs, then follow your heart, your head, and your gut.  Whatever option you choose, you need to be comfortable with your decision.

Best of luck,

Jan

[Jim Scott]

Hi, THAN - and welcome.

I'll get right to the point and state my experience.  I was diagnosed with a 4.5 AN that was impacting my brainstem.  Surgery was the only option - and my neurosurgeon considered it to be urgent that I have the surgery.  However, I was very concerned about facial paralysis and headaches, post-op.  He assured me that "my AN patients don't get headaches" and he was proven to be correct.  No headaches, post-op.  He proposed a 'de-bulking' surgical procedure where the tumor is peeled away v-e-r-y slowly and it's blood supply severed.  Then, following a 90-day 'rest period' (while I recovered from the surgery) I underwent 26 FSR treatments intended to destroy the tumor's DNA.  I had recovered from the surgery relatively quickly with no complications (no facial issues).  The radiation had no negative effects at all.  A two-year MRI showed the beginnings of necrosis.  Today, I'm doing great and happy to pass along my experience to you in the hope it will help you with your decision.

Jim

[tichinose]

I would never do radiation.  My symptoms have gotten worse since radiation in May 2010.  My Drs. were Pensak and Theo.  Now he doesn't know what to do.  For the last 6 mri's the tumor has grown so I am looking at HEI in Calif.  Who knows!!!  Praying for a miracle,,,Good Luck