Author Topic: Another newbie  (Read 3275 times)

gabberdoo

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Another newbie
« on: September 18, 2011, 01:27:15 pm »
Hi all,
I was just diagonosed this week. Mine, so far, on MRI is 1.9 sms. Here are my questions: I am symptomatic...and wondering how long the whole consult/ surgery  wait is. I'm having severe headaches, bad nausea, balance issues, facial numbness and now eye twitching. I've read may have no or few symptoms other than the hearing issues (which I do have too). I want to move on this. I'm in Oregon and all my familiy and support is in Ca. So I need to get the logistics moving. Also, I have Fibromyalgia and Chronic fatigue syndrom...I'm wondring if anyone else does and what tips they can share? While I realize everyone is different, I'm really needing the reality of post op and recovery. I usnderstand this isn't as much about size..but how bout symptoms? Will they subside with removal of this tumor? I've done all the research...I want REAL life stories now. I need to be able to plan who, how long etc. for helping with me and my zoo afterwards.

Thanks,
Debi

Jim Scott

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Re: Another newbie
« Reply #1 on: September 18, 2011, 01:43:35 pm »
Hi, Debbi ~

Welcome.  You list some very valid concerns.  Normally, once diagnosed and if symptomatic, as you are, one wants to get the surgery underway in a reasonable period of time.  Depending on your chosen doctors schedule, this can be done within a few weeks, in many cases - but you don't want to rush.  When I was diagnosed with a large AN (4.5 cm) my neurosurgeon had me scheduled for surgery within ten days.  Due to your location, my first recommendation is the House Ear Institute in Los Angeles, California.  http://www.hei.org/  Many of your symptoms will drastically subside or disappear post-op but the possibility exists that other issues could arise, including balance problems (usually temporary) double vision (also usually temporary), headaches, (temporary) nausea (temporary) and , almost guaranteed, fatigue.  Other posters will fill in the blanks with more detail but we all wish you good luck and will support whatever decisions you ultimately make.

Jim     
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

gabberdoo

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Re: Another newbie
« Reply #2 on: September 18, 2011, 03:13:22 pm »
Hi Jim,
Thanks for the prompt response! I'll probably be going to Sacred Heart in Eugene. I'm a Medicare patient and disabled. I also live alone and have no local support...so traveling isn't really a viable option. Your tumor was pretty large...what was your post op like? What can I expect in the first few days? What is the length of time for surgery, realizing again, this is all dependent on many factors. I watched youtube and that was fascinating. Lots of people, lots of outcomes. Somehow I had it in my mind this was gonna be a no brainer, easy breezy surgery. I'm thinkin I was in deep denial! I'm super proactive and want to know everyone's story!!

Jim Scott

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Re: Another newbie
« Reply #3 on: September 18, 2011, 03:42:54 pm »
Hi Jim,
Thanks for the prompt response! I'll probably be going to Sacred Heart in Eugene. I'm a Medicare patient and disabled. I also live alone and have no local support...so traveling isn't really a viable option. Your tumor was pretty large...what was your post op like? What can I expect in the first few days? What is the length of time for surgery, realizing again, this is all dependent on many factors. I watched youtube and that was fascinating. Lots of people, lots of outcomes. Somehow I had it in my mind this was gonna be a no brainer, easy breezy surgery. I'm thinkin I was in deep denial! I'm super proactive and want to know everyone's story!!

Hi again, Debbi ~

My large AN was 'debulked' (basically hollowed out and it's blood supply severed) and was approximately 2.5 cm after the neurosurgeon was done.  My pre-op symptoms, i.e. dizziness, intermittent  'stabbing' pain at the AN site, loss of the sense of taste (and 35 pounds) as well as heavy fatigue all disappeared almost immediately after the surgery (the AN had been seriously pressing on my brainstem, hence, the urgency to debulk it).  I later underwent 26 FSR treatments (low-level radiation) to destroy the remaining tumors DNA.  Apparently, it all worked.  My last MRI (2008) showed tumor necrosis (cell death) and the beginnings of shrinkage.  It's 5 years since my surgery and I feel great!!

Immediately following the surgery I was super-tired and slept - a lot.  By Day 3 post-op, I began to eat and sit up in a 'recliner'-style chair for 30 minutes at a time.  By Day 4 my appetite was returning, my double vision abated and I was sitting up for 45 minutes and attempted a few strolls around the hospital hallway, with my wife holding on to me (unnecessarily, as it turned out).  By Day 5 I was feeling pretty good and anxious to go home.  My doctor released me but the hospital insisted that I pass some balance tests, first, i.e. walking up and down stairs, walking a straight line, etc.  I passed and was released.  My wife drove me home (30 miles) and we stopped and had a nice brunch on the way.  Once home, I was still a bit fatigued and mostly sat around and watched TV or napped.  Within about 5 days I was feeling stronger and we began taking 2 mile walks at a nearby park.  My doctor gave me permission to resume driving within two weeks of my hospital discharge.  As the weeks rolled on, I did more and more (but no heavy lifting) and within a few months I felt pretty much 'back to normal'.  Fortunately, I was retired and did not have to deal with returning to a work environment, as many AN patients do.  I had lost all hearing in the AN-affected ear prior to the surgery (the price of denial and procrastination) and, as expected, the hearing did not improve, post-op.  Frankly, I didn't really expect that it would but my neurosurgeon did hold out a tiny hope that it might.  Oh well.  My experience was one of the better ones but not really an anomaly  Some AN surgery patients do experience headaches (I had none whatsoever - before or after surgery) and some have to deal with facial immobility (one sided) which can be problematic.  'Dry eye' is a common issue for many and of course, being SSD (single side deaf) is always a challenge.  If you desire even more details on my AN surgery experience, please send me a PM and I'll try to accommodate your request as best I can.   One thing I can tell you with certainty: AN surgery is not 'easy breezy' by any means - but it isn't the end of the world, either.  You'll get through this, Debbi and we'll be here to support you - all the way.  :)

Jim    
« Last Edit: September 18, 2011, 03:56:06 pm by Jim Scott »
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

CHD63

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Re: Another newbie
« Reply #4 on: September 18, 2011, 03:52:26 pm »
Hi Debi .....

Welcome to this forum!  I will have to admit when I saw that you have family and support in California, I immediately thought of House Ear Clinic in LA.  I had a fabulous outcome from my surgery there four months ago.  If it helps any ..... while I was there another man was there for his AN surgery who was legally blind (along with his wife who was also legally blind).  They were by themselves with no other family members with them.  We (my husband with me, as well as many other AN patients & families) all stayed in Seton Hall next to the hospital and everyone pitched in and helped however we could and this couple seemed to do just fine.

Please do not rule out going to House, unless you simply physically cannot travel.  I, also, am on Medicare and there were no insurance problems whatsoever.

This is not an easy, breezy surgery, but going to specialists who have done many, many AN surgeries certainly increases the odds of a good outcome.

I was in the hospital 4 days ..... flew home (across the entire US) 12 days post-op with no difficulties whatsoever.  Because of my situation, I am SSD (single side deaf), but an Oticon Ponto Pro abutment was put in during surgery so I now have sound input from my deaf side ..... life is good again.

PM (private message) me if you would like additional information.

Many thoughts and prayers.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

JAndrews

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Re: Another newbie
« Reply #5 on: September 18, 2011, 06:44:29 pm »
Hi there--I went to House Ear in LA and had Dr. Brackmann and Schwartz. I am fine. Had multiple consults- they are the best
2.5cm x2.0cm cerebellapontine angle meningioma. 100% removal 2/2009. House Ear Institute. Dr Brackmann and Dr. Schwartz. SSD right ear. No balance problems except when really tired, no headaches. Transear hearing aide made no difference, tried it for 4 months.