Marci's (MAlgent) Surgery Update

[Debbi]

Great news, everyone!!!  Here's Brian's email to me last night - read it and smile!

just an FYI.
It turned out not to be an acoustic neuroma, but a trigeminal one; the tumor grew out of this nerve. As a result, what looked like an awful mass on the MRI was in fact located in a terrific place; as a result, the surgeons were able (a) to preserve the vestibular nerve, (b) remove all of the tumor; (c) leave intact (that is, avoid) all of the cranial nerves. Hence, a tumor roughly 4.0 cm in size was removed in its entirety, with no paralysis of any of the nerves. Truly, truly a remarkable outcome. As a result, the surgeons feel strongly that radiotherapy is not needed at all, and that all of the tumor was removed. [We would've been delighted with a "debulking" of 80% followed by gamma-ray treatment.)

As a husband who has watched his wife go through such a a difficult and terrifying ordeal, I want to say that the a-n website was a remarkable source of support and information for Marci. I can't tell you how grateful I am for the support, and how thrilled we are with the outcome. When I left Marci this evening (about 9:00 pm) she was in pain, but otherwise fabulous.We are, indeed, lucky.


So the news is wonderful!  I have just copied Brian on all your posts so he can read them to Marci in the hospital - I know they'll make her smile.   Stay tuned ...

(And, actually, this job pays great just in terms of feeling good and doing something to "pay it forward".   This is what so many of you did for me so recently.)
Debbi, beaming

[Omaschwannoma]

Marci,

I'm very happy to hear you have made it through surgery and you have all your cranial nerves too!  I must say your trigeminal tumor is the first time I've heard about one and will be looking this up to educate myself more.  I hope your pain levels decrease quickly as having a craniotomy AND pain is tremendously difficult to bear.  I pray you heal quickly. 

Brian, you are able to breathe easier now knowing your loved one made it through surgery, I know how hard this time was for my husband as he felt completely helpless until we arrived home then he became quite creative in helping me through the tough days as I'm sure you will too! 

[leapyrtwins]

Marci -

sounds like things went wonderfully.  I have heard of trigeminal tumors, but I'm not very clear on what they are and how they differ from an acoustic neuroma.

In any case, glad to hear the surgery went so well - no paralysis of any of the nerves is excellent!     I don't think you could have asked for a better outcome!

I hope the doctors are able to manage your pain and that you are home soon. 

Many thanks to Brian and Debbi for giving us this update.

Jan

[Debbi]

Oh, and btw, Brian was on his way to the hospital this morning with a chocolate croissant for Marci!  There's a man who knows exactly what his beloved needs!

Debbi

[sgerrard]

That does sound good.

Jan, I think it just means the tumor grew off of the trigeminal nerve instead of the vestibular nerve (where a classic AN starts). I hope it doesn't mean trigeminal nerve issues; it sounds like they got it out cleanly, which is great.

All the best, Marci!

Steve

[yardtick]

Marci,

I'm so happy your surgery was so successful.  Rest, heal and keep kicking butt. 

Thanks to your husband and Debbi for all the updates.

Anne Marie

[Kathleen5306]

Marci

I have the biggest smile on my face for you with this wonderful news.  I celebrate your success and know that you are recovering and healing after your surgery.  I take a deep breath knowing that my surgery is one week from today and I want to share in your successful outcome.  Let us know how you are doing when you feel up to it.  Until then, rest.

All the best,

Kathleen

[ppearl214]

debbi

thank you SO very much for this update... and Marci..... GET WELL SOON!!!!!!!!!!!!!!!!!!  Healing huggles to you!!!!!!!!!!!!!!!


Phyl

[Tamara]

Marci -
  So glad to hear the surgery was such a success!  Rest, Relax, and enjoy the croissant!

Tammy

[JulieW4]

Marci,

I am so happy for you.  It sounds like you made the right decision about surgery.  Your story sounds similar to mine in that the docs thought they were going to remove one type of tumor but ended up removing a different kind and with great results.  It is great to know that you may not have to have radiation. 

Just take it easy and rest.  Hope you get good pain meds soon so you are out of pain. I hope you enjoyed that croissant.

Julie

[Syl]

Marci,

Welcome to postieland. I'm happy to hear the great news. Let the healing begin.

Syl

[Debbi]

Just got another update from Marci's friend, Andrea - and here's what she says:

"Hello again everyone,

Marci is working through the post-operative period beautifully well. 
She’s in pain, of course, but her spirits are high and her determination very much intact.  They are moving her from ICU this afternoon, and are also doing a routine post-op MRI.  With any luck, she will be out of the hospital very soon.

To fill you in a bit, the surgery was completely successful.  The surgeon was able to remove the entire tumor, and without any apparent trauma to the proximate nerves.  We will be eternally grateful for the amazing talents of her surgical team at UH.

Thank you again for all of your tremendous support.  I know it has meant an inexpressible amount to Marci, Brian, and Jordan, and will bolster them through the recovery period ahead.

We'll let you know when Marci is able to receive visitors or phone calls. In the meanwhile, please don’t hesitate to call or email if you have questions.

Best,
andrea"

I also sent Andrea an email with all of your comments and well-wishes pasted in, and here's what she wrote back:

"Hi Debbi,
What an amazing group of people--they've certainly brought a great big smile to *my* face!!  I'm printing these out (in great big print, so as not to tax her eyes) so she can read them over and over while in the hospital.
Thanks so much,
andrea"

It's a good day...

Debbi

[Debbi]

Breaking news!!!!!         

Just got this from Marci, from her hospital room....

"Dear Debbie and everyone,
I can't quite see well enough to type so Brian is typing this for me. I'm finally in a room (out of the ICR), which is a great relief after spending overnight in the ICU. The caregivers here are outstanding. Tell Steve that I appreciate his comments about wild applause, but in this case it's the surgeons who deserve the kudos. Other than feeling weak, dizzy, and sore, I'm pretty damned happy to be alive. Thanks for your prayers and wishes.
Marci"

[ppearl214]

debbi,

response back to Marci from me:

"ENJOY THE DRUGS!  Get some rest!  Milk all the attention! Feel better!!!!! xoxoxo Phyl"

(ok, nuff said!)
Phyl

[leapyrtwins]

Jan, I think it just means the tumor grew off of the trigeminal nerve instead of the vestibular nerve (where a classic AN starts). I hope it doesn't mean trigeminal nerve issues; it sounds like they got it out cleanly, which is great.

Thanks for the explanation, Steve.

Question - may be a dumb one, but I'm not sure  - does this mean that Marci's hearing isn't an issue?  I know it was a big concern and I'm assuming she can still hear; am I correct?

Also wanted to address Andrea's comment about Marci being "in pain, of course". 

This is the 2nd time today that I've read mention of pain post op and I can't stress enough (because I don't want newbies to freak out) that pain isn't a given.  Some patients have pain post op, some don't.  I had more pain in my neck from the position I was in during my surgery and the way I had to sleep post op due to the mastoid bandage than I had from the actual surgery.  In addition, this neck pain didn't lead me to pain drugs.  I know everyone's AN journey is different, but I'm sure there are other forumites who experienced this same thing.

So I just want to say it loud and clear - surgical pain doesn't always exist.

Jan