My bad boy has been whittled away--Day 6

[sharonov]

My tumor was diagnosed 14 years ago, and I thought we had a deal. I wouldn't bother him and he wouldn't bother me. Well, he reneged on the deal and started pressing on my trigeminal nerve, just to get attention. Little bastard. So I flew to LA last week, had my pre-op with Dr Stefan, and Monday morning got my revenge. Sadly not completely, but well enough.

I may be 74, but I'd rather keep my facial nerve and balance as intact as possible. So I asked Dr. Schwartz if he could just carve out the chunk of tumor pressing on the nerve and also perform an MVD (micro vascular decompression), which is when they put a little piece of Teflon between the trigeminal nerve and whatever is irritating it.  That's exactly what he did. The rest of the tumor was pretty well wrapped around my facial nerve and still is.

So what are the odds it will grow and do its thing again?  I don't know. It took 12 years to grow from 1.4 to 1.7, so is considered slow growing. I'm doing really well in recovering, but would not like to go through it again. My husband and I are at Seton and will go home the day after Christmas. My TN pain is gone, I'm walking all over the place and not staggering, my face is the same as it was, and maybe I'll die before trouble returns! 

[keithmac]

My tumor was diagnosed 14 years ago, and I thought we had a deal. I wouldn't bother him and he wouldn't bother me. Well, he reneged on the deal and started pressing on my trigeminal nerve, just to get attention. Little bastard. So I flew to LA last week, had my pre-op with Dr Stefan, and Monday morning got my revenge. Sadly not completely, but well enough.

I may be 74, but I'd rather keep my facial nerve and balance as intact as possible. So I asked Dr. Schwartz if he could just carve out the chunk of tumor pressing on the nerve and also perform an MVD (micro vascular decompression), which is when they put a little piece of Teflon between the trigeminal nerve and whatever is irritating it.  That's exactly what he did. The rest of the tumor was pretty well wrapped around my facial nerve and still is.

So what are the odds it will grow and do its thing again?  I don't know. It took 12 years to grow from 1.4 to 1.7, so is considered slow growing. I'm doing really well in recovering, but would not like to go through it again. My husband and I are at Seton and will go home the day after Christmas. My TN pain is gone, I'm walking all over the place and not staggering, my face is the same as it was, and maybe I'll die before trouble returns! 

Great result I'd say! Fingers crossed for no more pain from the little bugger and no more growth.

[ANSydney]

sharonov, great result. it sounds like you researched your treatment and guided the neurosurgeons for you preference. And the outcome speaks for itself. Congratulations.

[ANSydney]

Did some research into microvascular decompression. Interesting concept for those with brain tumors to know. Wiki has an entry for those that are interested https://en.wikipedia.org/wiki/Microvascular_decompression

sharonov, did your tumor also get cut down in size or was it pretty well left intact?

sharonov, your story is an interesting one in which in 12 years the tumor grew only 3 mm. However the trigeminal nerve problem is sad. It's so great to hear that the operation was so successful and that now, presumably, you have no trigeminal nerve pain. Do you have other problem?

[sharonov]

According to Dr. Schwartz, some or even most of my tumor was left intact, as it was largely wrapped around the facial nerve. Growth of ANs can be sporadic--it may now simply lie dormant, or it could conceivably have a growth spurt. If that happened, he said the next step would be to burn the nerve with radiation. I'd accept the resulting facial numbness over the intense, electrical pain of trigeminal neuralgia. But for now I'll take what I've got, namely the expected post surgery pain by itself. That is getting better by the hour!

Thank you for your kind thoughts and words.

[keithmac]

A great account and a great outcome.      

I hope you won't mind my having taken the liberty of posting the details of your treatment on the UK's acoustic neuroma website.  A sufferer there also is experiencing trigeminal neuralgia pain.

[sharonov]

Keithmac, I don't mind at all. I'd be happy to share any information or answer any question. Both conditions are so rare that it's very difficult to find support. Luckily I am retired and have time to research.

[keithmac]

Keithmac, I don't mind at all. I'd be happy to share any information or answer any question. Both conditions are so rare that it's very difficult to find support. Luckily I am retired and have time to research.

thanks for your understanding.....  I hope your situation and experience may help the sufferer who posted on 'my' other website.  Thanks, too, for your further offer of help and I wish you a speedy recovery.

[Jet747]

sharonov,

Thanks for the update!

Hope you have a speedy recovery and wish you all the best!

Jet

[JLR]

I know first hand the miserable pain of TN! My AN was leaning on that nerve as well as the brain stem I originally had CK but the radiated tumor was causing problems. On 11/1 had tumor removed. I have no more pain BUT was in hosp and rehab 7 weeks. Just got balance back and have facial and eye paralysis. Temp I hope. I applaud you for your actions!!!!  Best regards, Joan

[ANSydney]

sharonov, how are your going following surgery?

[sharonov]

Thanks for asking, AN Sydney.  I'm at 6 weeks now and feeling wonderful!  No more trigeminal neuralgia, and balance is fine.  I'm back to walking 5 - 7 miles a day (if it isn't too cold/windy) and tend to forget I ever had surgery. 

But there are times I remember--such as if I'm reading with my head down for too long.  For some reason this causes a slight headache, which is relieved when I hold the book or iPad at eye level.  That is annoying, but livable.  Sometimes when I'm walking I feel a sensation in my head that is somewhat strange, but not in a painful way. 

I read my surgical report, and am again so glad I chose Dr. Schwartz at the House Clinic.  He did exactly what I asked him to do (he agreed my requests were spot on) and so far the result has been exactly what I had hoped for.  Only time will tell if the remnants of the tumor will decide to begin growing again.   I don't think about that possibility very much, as control is out of my hands.

[researcher]

Sharonov,
So happy for your wonderful outcome. Thanks for sharing your story.

Maybe an I-pad holder would help with the head pain. They sell many types on Amazon. 

https://www.amazon.com/Best-Sellers-Computers-Accessories-Tablet-Stands/zgbs/pc/3015412011

Take care,
Researcher

[keithmac]

I reckon that's a mighty fine outcome! 

Fingers crossed for your future but I'm pleased to hear you're not fretting unduly about the possibility of a return of your problem, something outside of anyone's control - great job.  I'm so pleased for you.