Support

[Lupy]

Hey guys,

Just looking for a bit of support. Have recently started having much more face pain/numbness, balance and hearing issues than normal. I am still at least 2 months away from surgery as my surgeons are away (Briggs and Kaye from Melbourne). As I have mentioned in my other threads my GP has me on cortizone but so far it doesn't seem to be working and if anything making me feel worse (especially emotionally). I have the option tomorrow of changing to another drug - Predisolone - to see if that helps, as it has in the past. But this is really up to me, as my GP isn't quite sure what to do without the guidance of my surgeons (and I dont blame him, he is great but this IS a tricky one). I am having an emergency MRI this week to see if the tumour is doing anything too crazy, but even if they find something I am not sure what they can do. I am trying to stay as calm as possible, because you cant change what you cant change, but the drugs aren't really helping that much! I just wanted to hear about how long other people had to wait for surgery?

Sorry for the ramble, my partner is away overseas and just needing a bit of input.

Lupy

[EJTampa]

Hi Lupy,
 
I'm sorry to hear that you are having these issues with your face.  I never had to take any medications prior to surgery as the only symptoms I had were hearing loss, tinnitus and some balance/vertigo issues.
 
Accoustic Neuromas rarely grow very fast at all, but even the slightest change can cause a huge increase in symptoms.  I was diagnosed at the end of September 2008, but didn't have my surgery until March of 2009.  During this time, my tinnitus became signifcantly louder, so I was sure that my tumor had grown much larger.  After surgery, I was told that the tumor had grown hardly at all, about what would be expected in 6 months.
 
Your hearing will most likely not get any better, even after surgery.  In fact, on average, there is a 60 percent chance of preserving "useful" hearing after surgery.  Very few people have improved hearing after surgery.  I would talk to your surgeon ahead of time about hearing preservation if that is important to you.
 
Your balance will improve slowly after surgery, but chances are you will be quite imbalanced and dizzy right after surgery.  Most surgeons, if not all now, completely remove the vestibular nerve on purpose.  Leaving a damaged balance nerve in place causes the brain to struggle with the mixed signals it receives, resulting in continuing balance problems.  Removing the nerve allows the brain to adapt to having just one vestibular nerve, although it takes some time.
 
I will say a prayer for you and hope you can get some relieve from at least your facial pain and numbness issues prior to your surgery.
 
Ernie

[Jim Scott]

Lupy ~

These symptoms certainly are troubling - and annoying - but the 'emergency' MRI should help explain what's happening.  We can only hope the answer is 'not much'.  Your GP is being prudent with your drug prescriptions but he has to acknowledge your symptoms and try to prescribe in your best interest.  Predisolone sounds like it may help and I don't believe it should have emotional side-effects (just a guess - I'm not a doctor).   If it becomes necessary, I would consider calling the absent doctor's offices to inquire if they have another doctor 'covering' for them and if so, try to consult with this physician regarding your symptoms. 

In my case, by the time I presented to the neurosurgeon, my AN was huge (4.5 cm) and pressing hard on my brainstem.  He was very alarmed and scheduled my surgery almost immediately.  A 2-month wait for surgery, if voluntary on the part of the surgeons, seems to indicate that they don't see your AN as big enough to be a real problem.  I hope they're right.

You have my wishes and prayers that your symptoms will soon subside.

Jim

[Lupy]

Thanks guys.

I decided to start Predisolone this morning as the other drug just wasn't helping my symptoms that much and was making me feel awful. I should hear about the MRI today so I can get to the bottom of all this. It's never an easy path is it? I think the thing you dont realize is how many decision you have to make along the way! Teher is no simple step by step guide you can just follow! Anyway, we'll see how things go on the new drug!

Lupy

[cherrypiper]

the face issues for me got worse after the surgery but only minimally so in retro spect. now the running into walls , the leaning to the opposite side from my An when tired? it hasnt changed much. BUT i know whats going on . so does my wife and we deal with it.

there are big deals in this surgery , like all i suppose. The tumor came out, it wasnt cancerous 90+ % or more arent , and at my 1 year  review MRI a few months back they could find nothing. so all in all it gets better Lupy. hang in there.......