HELP! “Translab (T/L) or Retro-sigmoid (R/S- i.e. sub-occipital) for a 4cm?�

[sgerrard]

I'm not a 4 cm, or even post treatment, but I'm in the Pacific Northwest, and that's good enough for me.

I am curious whether the neurosurgeons tended to favor R/S, while the neurotologists tended to favor T/L. It wouldn't surprise me if they tended toward their area of speciality. R/S involves brain retraction, a neurosurgeon task, while T/L is the classic neurotologist solution to ANs.

Since you don't know if it is a meningioma or an acoustic neuroma, I would want to pick a good neurosurgeon with experience with both kinds. A neurotologist might find a surprise, and say "Gee, I've never seen one of these before," right in the middle of the surgery. If you do pick a neurosurgeon, they are probably more likely to favor the R/S approach. The key for that is to have a good surgeon who can minimize the time the brain is retracted.

I like the approach that Jim Scott described, of "debulking" the tumor - I think they can basically vacuum it out from the middle - without messing with the nerves at all. With a follow up MRI, controlling any remaining growth should be straightforward with radiation treatment. I suspect that qualifies as "new school" neurosurgery.

That's my 2 cents. Hope you find the right choice.

Steve

[Jim Scott]

I like the approach that Jim Scott described, of "debulking" the tumor - I think they can basically vacuum it out from the middle - without messing with the nerves at all. With a follow up MRI, controlling any remaining growth should be straightforward with radiation treatment. I suspect that qualifies as "new school" neurosurgery.

Steve:

You're correct. 

Hollowing out ('debulking') the tumor, avoiding damaging or moving facial nerves (my neurosurgeon employed electromyography to warn him of any potential danger to the facial nerves) leaves part of the tumor intact, but cuts off it's blood supply and renders the tumor smaller and easier to radiate.  The FSR radiation is tedious (26 separate 'treatments') but the radiation oncologist, working with the neurosurgeon, can 'map' the remaining tumor to insure that nerves are spared and only tumor is 'hit' with the low-dose radiation. 

This is a relatively new approach to dealing with large AN tumors.  My neurosurgeon is almost 70 years old but he is a very experienced, compassionate physician and once convinced this approach was valid, he was eager to employ it.  According to him, I'm one of his 'star patients' because I met every goal we established for me prior to my surgery.  No facial paralysis, little-to-no residual AN symptoms and regaining the majority of my equilibrium.  I'm not 100% but 90+% isn't too shabby.  You would never know I was harboring an acoustic neuroma tumor inside my skull just over a year ago.  I've underwent so many MRI scans in the past year that I've practically lost count.  However, my last one (June 20) showed distinct tumor shrinkage and visible necrosis.  My neurosurgeon said that one MRI per year should be sufficient from now on. 

I strongly recommend that AN patients diagnosed with large tumors research and ask their doctor about this two-tiered, 'new school' approach. 

Jim

[Cynaburst]

I had a 3+ cm tumor that was severely compressing my brainstem.  I also had severe hydrocephalus caused by the tumor.  My situation was deemed to be an emergency, and I had 2 surgeries... one to implant a VP shunt, and one to remove the tumor, a retrosigmoid surgery done by the chief of neurosurgery at Cedars-Sinai who has been on the cover of Time Magazine -- Keith Black M.D. 

Due to my age and the position of the tumor and the way it was compromising my brain stem, I was told that I had no choice but to have it removed surgically by an experienced neurosurgeon ASAP.  They were also unsure whether the tumor was a menigioma or an AN, although my hearing was severely compromised in a short time and my balance and facial nerve were also affected.  We decided on Dr. Black (it was only a few days before the shunt was implanted after diagnosis, and another week for the tumor resection). 

Although I had significant problems during the after surgical recovery due to swelling and I did lose all of my hearing, my facial nerve is barely compromised.  It is only noticeable to me, and if I had to quantify, I would say it has a 5 - 10% deficit, but in the 5+ years since the surgery, it has improved dramatically.  Balance is really not an issue for me anymore, and I have just gotten a Transear which helps with the SSD, but honestly, I haven't found that to be a big deal.  I am just glad that he was able to get the whole darn thing out.  It was a long surgery, like 7 hours or so, and the resection was very delicate.  I am sure that a lesser surgeon would have made a lot bigger mess.  Nevertheless, I have almost no residual problems.  No headaches.  The mildest of facial palsies, and best of all, no more treatment -- I just have it scanned every so often.

Good luck.