Surgery This Wednesday

[Joanne7151]

Wednesday's the Big Day - Surgery! I'm terrified!

I'm a newbie!  My AN was diagnosed in July 2009. My symptoms began in the spring, balance issues, headaches, hearing loss. MRI showed AN measured 0.4 x 0.5 x 1.1cm within the right auditory canal. August 6th I had the Gamma Knife procedure. First 2 weeks after surgery, I lost balance, and felt like there was a mini construction company in my right ear. Felt pretty much okay thru most of September. In October symptoms began again and got worse. Oct. 14 MRI showed some growth, but they weren't sure if it was swelling or growth. December 1 MRI showed significant growth. I am now scheduled for surgery January 20 at NYU medical center. The surgery will be Posterior Fossa Craniotomy (Translab), resection of intradural tumor with abdominal fat graft & facial nerve monitoring/microdisecction.

Needless to say I am TERRIFIED. Just the thought of my head being opened is freaking me out. Can anyone tell me what I may experience right after surgery. I know everyone reacts differently. Is it nausea, vomiting, pain, total loss of equilibrium, etc. I appreciate any input you can give me.
Joanne

[stevecms]

Hi joanne,best of luck for wednesday.i had a 4cm an removed by translab back in sept.luckily not too many problems ie double vision for about 2 days,i was sick once but the docs soon stop that with drugs.my balance was wonky for about 2 weeks,and not sleeping too good.things do get better lol

[leapyrtwins]

JoAnne -

left you a response on your other thread.

Jan

[kimmccann]

Hi - having just come through a posterior fossa craniotomy myself (Jan. 5 @ Sloan-Kettering), I'd like to offer a few words of encouragement ...

NYU's AN surgeons are among the *very* finest in the world - you are in GREAT hands, as I was at Sloan-Kettering.

Something I learned from direct personal experience is that putting one's focus on completely positive thoughts and hopes is the way to go; if you can direct your attention to that, you won't have any energy or time left over to worry about or dread any physical challenges that may be associated with the immediate aftermath of the operation. In this sense, the patient is every bit as much a member of the team treating him/her as the doctors, nurses, lab technicians, etc. The medical folks can do their part and you can do yours - also know that on your team are a whole host of people you don't even know (like me and the ANA Discussion Forum folks) who are sending you their good wishes, upbeat vibes, thoughts and prayers! You can use our positive input to bolster you - you don't have to feel like you're heading into this alone - REALLY!!

All the best tomorrow - I'll be remembering you and sending cheerful energy waves your way ...

Kim McCann

[Joanne7151]

I'm finally home! Had surgery on Jan 20, got home on Jan 28. Surgery went well (7 hours). Spent 6 days in ICU because of a spinal fluid leak. The spinal drain was a nightmare, I don't think I have ever experienced that much pain! On the second attempt I insisted that they put me to sleep..That was a blessing.  A few words of advice, DO NOT TRY TO GET UP WITHOUT HAVING THE NURSE ADJUST THE DRAIN HEIGHT FIRST. I didn't listen, when I tried to get up, I felt the fluid in my head drain and instant massive head pain.

As for balance & equilibrium issues, they were gone when I woke up! No nausea. I feel so much better now even though I get really bad headaches, shooting pains in my head, fatigue and some facial issues (temporary). The facial nerve was not damaged, just irritated. My eye and right side of my face are very sensitive and hurt to the touch. My follow up is Friday, Feb. 5. They will be removing stitches (head, belly and spine).

The entire staff at NYU were wonderful (except for one intern). My doctors, Dr. Lalwani & Dr. Parker are the best! Experienced, attentive, comforting and really cared! I am thankful to have had these doctors take care of me. I highly recommend them!

The doctors informed me of possible post-op problems, but I found it more comforting to know what others have experienced.
Thank you so much for your support.
Joanne

[opp2]

Hang in Joanne. I wish you to feel better every day!

[leapyrtwins]

Joanne -

glad to see you're back among us and congratulations on your postie status!

Sorry to hear about the CSF leak - some get them, some don't - wish you could have skipped that part.

Get lots of rest and don't overdo it; listen to your body.

Recovery isn't a race, find your own pace and stick with it.  Also, try to have patience.  I still recall how frustrated I got post op because things weren't moving as fast and I wanted them to.  All good things come in time.

Welcome back!

Jan

[Jim Scott]

Hi, Joanne ~

I'm pleased to learn that your surgery went well (with a few exceptions, i.e. the drain) and that you're recovering on schedule.  Thanks for posting. 

Jim

[moe]

Congratulations, Joanne on a successful surgery!
I'm sorry to hear about the CSF leak, just an extra little bump (okay a big bump) in recovery.
Easy, easy activity, watch the bending. Lots of fluids, rests, naps, you know the routine
Don't feel guilty about taking it easy OK?! You had brain surgery AND a CSF leak. Whew..
Maureen

[Joanne7151]

Thank you ALL for your tremendous support and advice.  You have no idea how much you guys/gals words comforted me and eased my stress.
It is actually better to hear from other people who have been through this ordeal! (I didn't panic when spinal fluid started coming out of my nose, I knew before the nurse what it was.)

Follow up Feb. 5
  My belly and back stitches were removed, but not the head yet. Have to go back next week for them to check them again. The incision site has flared up, red & swollen.
They gave more steroids and Lyrica for nerve pain in my back, leg and shooting pains in the head. It was like a miracle..........the pain is almost gone,  just a few here & there and not that bad.  They feel the spinal fluid is causing the swelling and the body has to absorb it.  Dr.Parker sat with me for about half an hour just explaining what was going on. Wonderful Doctor! 

I'm pretty much "wonkie headed" right now, but I think it's getting bette each day.
THANK YOU ALL!!! 
Joanne

[Kaybo]

Joanne~
So glad things are OK - slow and steady and you will be out and about in no time!

K   

[Lita]

Hi Joanne, I'm scheduling surgery with Dr. Parker and Dr. Lalwani too, so relieved to hear you were happy with them. The surgery is planned for June 22. When I met each I found them so clear and calm, with such patient explanations. I heard good things about NYU and their area of expertise is skull base and AC. Did you find them available through your whole ordeal with the spinal fluid leak?  Was NYU good in general?

Do most people keep family members or aides with them during their stay? How soon is it that a leak is noticed? How will I know I am well enough to go home (how to judge for myself)?

I have heard it is best to leave the hospital as soon as possible to avoid the nasty infections. I have heard though that hospitals also discharge people as soon as possible, not just because the insurance companies don't give a choice, but because they don't want you to be in the hospital if you DO get an infection. A nurse friend says she was told some insurance companies are refusing to pay the hospital for care for an infection acquired FROM the hospital from that stay. Has anyone heard of this?

Now that I have decided what I want to do I am trying to prepare for it. Thanks, Lita

[Lizard]

Thanks for the update and congrats on your continued upward progression.  I'm sure you still feel like a wonky head, but give it some time.
This forum really is a God send!

Take care,
Liz

[a.m.]

Hey guys, I had Dr. Parker and Dr. Lalwani as well and they were great! I loved NYU!!!