Surgical decision - translab and more

[MelB]

Hi everyone,

I am about 2 months post-diagnosis and have spoken with a lot of specialists, neurosurgeons, etc. Originally put on W&W. All 3 of my second opinion AN specialist teams are recommending translab but with completely different approaches.

Here is what they're recommending:
1. translab approach with total resection ASAP
2. shunt then translab w/mass debulking followed by radiation
3. shunt then translab mass debulking followed by second translab for reshaping 15 days later followed by gamma knife and immunotherapy

Can anyone here speak about their experience having a second translab surgery 15 days post-op? It was explained to me that this approach might seem longer at first but my recovery would be better overall. This feels like a lot of anesthesia, surgery, etc. to drag out my recovery even if they want to be conservative/slow in how they remove the tumor. I haven't found any recovery stories that make it sound like this is the norm...

Also, for ppl with a large AN that planned for radiation treatments post-op...Did that approach seem to help with recovery? #1 said that I'm too young for GK/radiation and they strongly recommended against it. 2 & 3 both said that translab + rad has been their norm for ~10 years.

About me:  I'm in my late 30s w/a 4.0 cm AN. I have tinnitus, dizziness, occasional blurred vision, occasional headaches, hearing loss on my AN side, off balance sometimes, and short term memory loss. I also have mild obstructive hydrocephalus.

[SeaCat]

Hi MelB,

Wow! This sounds like a lot in any case!

It seems to me that the size of your growth and your relative youth are distinguishing factors here, together with the fact that the microsurgical area of practice has new things happening all the time.

I hear you with respect to the second surgery; I know that I would not have been excited about another surgery 15 days after my procedure (five weeks ago)! On the other hand, conversations in recovery sounded as if there may have been room to be more certain that my anesthesia process was appropriate; if so, maybe there would be more motivation to get it right the first time if they knew they were going to be doing it twice.

All this to say that I don't have a lot to say, but I hope that someone else does.

[DanFouratt]

Melb,

I have no advice but my thoughts and prayers are with you. I will go looking for it but I believe there was a webinar that talked about radiation after surgery. But my recall it was years after surgery. I do not see where you are but you may want to reach out to some of the leading groups for their opinion. Here is a good webinar: "UCSD - High Volume Centers vs. Narrow Networks" in the library.

Good luck on your decision journey.


Dan

[MelB]

Thanks for the feedback. I've decided to go with #1 and will be traveling to UCSD for translab, as their reputation precedes them. Radiation may be an option later down the road if there is any grow-back but at least now we know to monitor my head and hopefully will not need additional surgeries any time soon.

[skier]

Hi,
I'm one of many UCSD former patients on this chatboard, and I had my translab there a year ago.

I think you have made a great choice of a world class team of doctors and others there. Like many before me, here, I had a great outcome and am so glad that I chose UCSD.

I hope you will feel as confident as I did/do, in their team, and I wish you all the best. You're in good hands.

Best,
"Skier"

[DanFouratt]

Glad you made a decision and i is a great one. Good luck on your journey.

Dan

[UkulelesAreAwesome]

If you take option 1 are you able to avoid the shunt? I may need a shunt and have a possibly growing AN which may require surgery. I had GK 2 years ago.