Retrosigmoid Surgery Recovery?

[tkane]

Hi everyone.

I just wanted to give an update on my situation and surgery. 

I had my surgery on 5/23.  My experience with Sloan Kettering & Weill Cornell was great.  Dr. Selesnick is excellent.

I woke from surgery, I remember feeling pretty good for what I had just gone through.  No nausea, no dizziness, no CSF leaks, I felt like a million bucks.  then they hit me with it.  "We did not remove your AN".  My facial nerve is running directly over my AN (which is apparently extremely rare), and had they even touched it, my face would have been paralyzed.  I feel fortunate that the doctor noticed this, as I am not so sure had I decided to have the surgery at my hometown hospital, they would have had the experience to notice this.

So essentially I am watch and wait now.  I am scheduled for an MRI in September.  If there is no growth from my last MRI (March), they will continue to watch.  If it has grown, which we all know it will at some point, then I will have radiation. 

I initially opted to have the surgery, because like most of us, I just wanted it out of my body. So while not the outcome I was hoping for, i am staying positive.  The doctors are very optimistic that radiation will work, and tell me that in general radiation is very effective. 

I do want to ask however, since my facial nerve was not in the location they expected using the retro sig approach, maybe a different surgical approach would be more effective?  Something I suppose I can talk to them about. 

Hope everyone is well.

[ANSydney]

The medical profession needs to be able to identify the course of facial nerve and facial nerve involvement ... in a less invasive way.

Sorry to hear about your experience Tim. Hope your MRI in September has little or no growth.

By the way, "If it has grown, which we all know it will at some point, then I will have radiation" isn't necessarily so.  Stangerup et. al. in their 2006 paper showed that after 4 years from diagnosis (5 years from any symptoms?) no observed tumors grew. Tumors in general appear to go through three phases. A rapid growth phase, a linear growth phase and then asymptote and stop growing. There are various models and I'm not sure which fits best or is applicable for schwannomas. Below is a graph of four different growth models. The Mendelsohn model is not good news as tumors grow unabated. However, most of the models show tumors grow to a certain size and then stop growing. This is consistent with the Stangerup reported findings.



The graph below discusses the Gompertzian Model of Tumor Growth. Here you can see the three growth phases. According to the general model, by the time a tumor is clinically detected, it's getting close to its terminal size. Don't get alarmed by the "Death" in the growth, this is tumor death (good), not patient death (not so good)!



Some people assume that tumors just keep growing. Most models suggest otherwise and the Standgerup paper, specifically for vestibular schwannomas, says that he has not detected any tumor growth beyond 4 years from diagnosis. He has revised this later to say that growth after 4 years from diagnosis is very rare.

See this post for more details of Stangerup paper https://www.anausa.org/smf/index.php?topic=23249.msg979772795#msg979772795

[tkane]

Thanks for the info Sydney.

I am not sure what stage of growth my AN might be in.  Seeing as I have unknowingly had my AN for the last 12 years, and only found it this past March because my hearing was worsening and was sent for an MRI, it seems that it is VERY slow growing as it was only 10mm after 12 years of existence. Though I do feel that it has been through a growth stage recently, as stated above, my symptoms had become more obvious. 

I guess I will find out in September whether or not it has been growing and go from there, knowing that there will probably be a difference just because my first MRI was done here at my local hospital and my next will be done in NYC, and different machines will probably give slight differences.  Luckily I am good at letting things roll off my shoulders, so I am not too stressed out by it.  I know, quite literally, in the back of my mind that it's there, but I don't let it bother me and I trust the doctors are making and will make the right decisions. I'm not a big fan of the thought of having to go the radiation route, but I also do not need a paralyzed face either.  I know surgery (and facial paralysis) is always an option as a last resort if the radiation is not effective, albeit more difficult to do after radiation, so I take solace in knowing there are options.

Tim 

[ANSydney]

If you've had your symptoms for 12 years and you only have a 1 cm tumor, then I think you're a perfect candidate for observation. Let's see what your September MRI says. I'll bet (but I don't know) that you will have no growth.