Surgery scheduled! Shands hospital on Dec 14th

[lawmama]

Congratulations, Lyn! You and your story are a hope and inspiration for me.

Hey I just checked out your blog and low and behold your doctor also quoted you a 95% chance of facial nerve preservation. That's consistent with my doctors "stats".

And that fact you are here, posting your story just a few days after your surgery.

Wow.

http://lynettewp.blogspot.com/search?updated-max=2009-11-09T11%3A10%3A00-08%3A00&max-results=7

Odds of facial nerve preservation: 95% He says this can sometimes depend on factors outside of his control (my anatomy, swelling after the surgery, etc) but he has a very good record in this area.

EDIT:

I just took a good look at your blog. Your situation sounds like mine - my balance is what is out of whack and that is what brought me to the doctor. Thanks for documenting all of this ..... really, really, great stuff you have shared.

Hi!

I just wanted to be clear about the facial nerve statistics.  The stat of "95% facial nerve preservation" doesn't mean that 95% will have no facial issues at all.  My doctor was very clear with me that they can perfectly preserve the nerve and sometimes patients will still have some level of weakness that ranges from very temporary to permanent.  After surgery, he told me that he felt very good about my chances of escaping any issues because of where the tumor was located (although it was bad for my hearing nerve).  I have been very lucky.  I never had any weakness of any kind (that I could perceive, anyway).  Others have different results, but I went with the retrosigmoid approach specifically to try to have the best possible chance of facial nerve preservation, even at the peril of my hearing nerve (which it turns out, could not have been saved by any approach, but that was dumb luck). 

Thanks.  I'm glad anything I've shared has helped someone.   

[Pooter]

Others have different results, but I went with the retrosigmoid approach specifically to try to have the best possible chance of facial nerve preservation, even at the peril of my hearing nerve (which it turns out, could not have been saved by any approach, but that was dumb luck). 

Lyn,

I could be wrong here, but the RetroSigmoid approach doesn't offer a great advantage to facial nerve preservation over the Translab approach, does it?  I thought it was the other way around?  Or was it that in your case, it did?  I always thought that Translab offered a better view of the tumor and/or nerves, but sacrifices hearing outright to do it (because the inner workings of the ear were removed to "get there")..

Can you clarify a little?

Thanks,
Brian

[lawmama]

Sorry, Brian.  I meant retrosigmoid v. Middle Fossa.  Translab was never an option for me because I had hearing to preserve, so I always wanted to at least give myself the chance for that, even if it wasn't a great chance.  Although, I haven't heard that there is much of a difference between translab and retro for facial nerve preservation, but admittedly, I didn't do much research about it because of the hearing thing, so I'm not so educated about the stats for translab.

Lyn

[Pooter]

Lyn,

Now THAT makes sense based on what I know..  Between those two approaches, Retro would give the doctor a better view of the facial nerve (and other nerves) because inherently the Middle Fossa works within a much more confined space and therefore a more limited view of the nerves.

Thanks for clearing that up..  I knew if I was confused, there was at leave 1 or 2 others (especially 'newbies') that were..

How are things going for ya now?  Up running marathons yet?  (Just kidding) 

Regards,
Brian

[leapyrtwins]

Pooter -

thanks for asking Lyn for clarification.  When I read this post earlier today, I too was confused.

I've heard numerous times that the retrosigmoid approach generally results in a greater risk of both facial nerve damage and headaches for patients.  As with everything, though, there are always exceptions to the rule.  I had retrosigmoid and didn't have facial nerve damage for more than a day or two and I suffer no headaches.

Jan

[lawmama]

No marathons yet!     But I did go out to lunch and grocery shopping yesterday, so I think that's pretty good.

I'm having some pretty awful headaches, but I'm hopeful that they're related to the swelling I still have.  I'm on a type of migraine medication that works wonders for the headaches, but it also makes me loopy, so I would rather not have to take it.  The headaches feel like pressure-type headaches in the back of my head and are the worst when I wake up during the night and in the morning (after my head has been laying on the pillow).  Otherwise, I think I'm coming along nicely.  I'm ready to get the staples out, or as my daughter calls it, my "zipper."  LOL  That's tomorrow morning, so it will be an early Christmas present.

Thanks to both of you for clearing up the confusion about the stats.  I would hate to mislead any of the newbies.  Like I said, I'm just unfamiliar with the stats on translab.  I only researched Middle Fossa v. Retro.

Lyn

[Pooter]

Heck, if you're up and going to lunch and shopping, then marathons are just around the corner..    Sounds like you're doing pretty well.

Be mindful of the headaches.  If they feel like pressure-type headaches, it could be a build-up of CSF.  I also was getting pressure-like headaches and was put on diamox (a diuretic) to reduce the CSF production.  After I got my stiches out, the area by my scar bubbled up (but not out) with CSF.  Little did I know that I would have a slow acting allergic reaction to the diamox that ultimately landed me back in the hospital for 4 days a month after my surgery.  So, pay attention to them and make sure you tell your doctor about them when you get the staples out.  I'm not saying it is or will be a problem, but just be super aware.

No sweat about the confusion.. Like most here, I like having accurate (not saying you weren't accurate) and complete information about certain topics in case it comes up later.  Confusion cleared up, so it's all good. 

Regards,
Brian

[lawmama]

Brian,

Wow, I never considered that it could be due to something like that.  l'll make sure I mention the headaches to my doctor when I get my staples out tomorrow.  Something to watch for.  Thanks for the info!

Lyn

[loose screws (tightened)]

Staples! Ouch. And I thought stiches were bad.

Lyn I had a lot of swelling around the temple area and one of the house doctors who wasn't my surgeon thought I was leaking CSF during a routine check-up in the hospital. My doctors looked and determined it wasn't anything to worry about. When I got my stiches out 8 days after surgery he took a close look at the temple area and asked me about fluid leaking from my sinus. I didn't have anything leaking. I had a lot of pressure from the temple area and what felt like behind the eye for about 4 weeks after surgery. I took some of vicaprofen and it worked great.

Mike

[lawmama]

Staples were no big deal at all.  Just a tiny pinch on the ones closer down my neck, but I barely felt the higher up ones.

They said my swelling looks great and the incision is healing nicely.  I'm still not sure what is up with the headaches.  I'm still thinking it is a muscular issue.  It isn't in my temples or in the front of my head at all, it is across the back of my skull, so that seems most likely.

Thanks so much for all of your great comments and suggestions.  I love brainstorming, it makes me feel productive even thought I know that time is probably all that is going to fix this.   

[ombrerose4]

Hi, I am suffering from the same type headaches. They start in the back neck muscles and if I don't catch it in time, it spreads to my entire head. I am three months post op and the headaches began on and off after the first month. I was put on steroids and antibiotics and they were better while I was on the meds, but eventually they came back worse than before. For the past 3-4 weeks I have had them about 2x's a day. Spoke with my neurotologist again and we decided to try Botox injections. So on thurs the 24th I had 4-5 injections. My doctor said it takes 4-5 days till it works. So I am keeping my fingers crossed and hoping that in 3 more days I won't have these horrible headaches anymore. Just to let you know Botox was not his first suggestion, but the medication he wanted to try interacted with meds that I take daily, so that option was out. So Here's hoping all our headaches become a bad dream