Describe your surgery experience in a paragraph ...

[msuscottie]

We all have stories, most of which are extremely interesting and loooong! I thought it might be a good idea to try to share each of our experiences in a very condensed form so that new-comers to the site can get an idea of what to expect without having to read (in my case) a 15-page blow-by-blow recount. I also thought it might be fun, for those that have photos, to post a photo of yourself so that we can get to know each other better. It doesn't have to be a scar photo or anything like that, just something to help personalize this forum a bit. I'll start ...

[msuscottie]

I was diagnosed in Aug of 2004 with a 3.5cm AN, My surgery was Oct. 7th of 2004 and I had to have it in two stages, the second being on Feb 1st, 2006.

I went into the hospital (first time ever!) at 6am, changed into the buttless gown, cried for the first time in a long time and within a half hour they had knocked me out. Because of complications I was unconcious for quite a while, but when I finally woke up I was in ICU and it was over. No real pain, just annoying beeps and constant needle pricks and exams. Very little sleep. Nurses are checking on you constantly so you can't get into that deep sleep, even though that's all you want.

When you wake up you're pretty sedated (or I was) so you don't really realize (or I didn't) the hearing, the dizziness, the balance or anything else, that became more evident a few days later for me. I'm one of the unlucky ones that have to do this whole thing twice, but I imagine it's a great relief once it's over and that feeling alone should probably superceed anything else you're feeling.

Recovery was tough for the first few days, but once you realize that you get a little back everyday it makes it much better. Work hard, stay positive and listen to your Dr's. The fear and anticipation is probably worse that anything else. (Was for me anyway).

Ok, I violated my one paragraph thing, but you know what I mean.

I'll look for a picture to get up here soon.

Scott
30 yr.old male
3.5cm AN diagnosed - August 2004
Stage 1 Surgery - October 2004
Stage 2 Surgery - February 2006
Dr. Pieper & Dr. LaRouere
Providence Hospital - Southfield, MI

[Kathleen_Mc]

I am currently 38, when I first experienced symptoms I was around 18-19 and missdiagnosed. When the tumor was found it was very large. I underwent 17? hours of surgery, lost my hearing and proper facial function. Since then I have had 6 or 7 plastic repairs to my face, found out the tumor regrew and have had the regrowth removed. I have vertigo, dry eye and Post Traumatic Stress Disorder. Life has gone on dispite this all. I have continued to work full time, have married twice and have two children currently 4 and 7. I am a nurse and work in psychiatry. (how's that for a paragraph). Kathleen

[Larry]

I am 49 (male, last time I looked) had middle fossa op 3 years ago after hearing degradation. My op was around 7 hours. In ICU that tried pumping pottasium into me which hurt like hell so make sure you increase your pottasim levels first. Also had severe nausea for 24 hours. brushing my teeth caused me to be ill (toothpaste and anasthetic combo I think), have had severe headaches for 3 years and still going. I am very fortunate to not have other complications excpet the AN has regrown.


Larry

[Pembo]

I was 35 when I had my surgery on June 3, 2004. I turned 36 the day I was released from the hospital. My surgery was 20 hours for an almost 4 cm tumor that my doctor tells every med student I meet, was the largest one he's seen. I was in the hospital for 8 days and then inpatient rehab for 8 days due to complications with the pain meds. Once they took me off those meds I rebounded very quickly.  I lost 16 pounds in 16 days. Life now is still challenging. I do battle with some depression, I have facial paralysis that is still healing but I got the Baha implant last fall and that has been a good thing.  I have 3 kids that are now 10, 7, and 3 so not getting better fast was never really an option.

Just a side note....when I was reacting to the pain meds (vomiting, drugs for that, sleep) the nurses kept saying to me that I had to get better to take care of my kids. I remember thinking being away from them wasn't all that bad. LOL

[Jsoule]

Hello, Age 47, found a 1.5 cm tumor left side after hearing loss and balance issues. Surgery  3 months later, surgery was 3 1/2 hours long , translab approach and total removel of the tumor. No facial paralysis , deaf in left ear as informed. Very sleepy the first 24 hours, some shoulder and neck pain, no nausea, actually wanted food, but only gave me ice chips....sutures removed post 7 days and flew home from California to Minnesota on the 9 th day after surgery...Resumed all activities. Returned to work after 5 weeks of resting. Doctor said MRI in 5 years. Julie

[luv2teachsped]

Scott:
          15 pages down to 4 paragraphs...hey we'll let that one slide.
    I had a 2.5cm tumor removed trans lab, on May 18,2005 at University of Michigan.  My surgery was 10 hours long, with 2 of those hours spent scraping the tumor off the facial nerve, for which I am very thankful!! My surgery and recovery went very well. I was in ICU 2 days, 4 days later I was released.
    The only negatives I've really had were my migraines and vomiting reaction to the anesthesia(every surgery I've ever had, and I'm having out-patient, general anthesia this Friday  ugh...) and I had an allergeric reaction to the neosporin they used on my incision. After a day at the clinic, IVs, drugs and many blood tests, I went home and was fine.  Oh yes...
    One minor problem I have had a few times(I'm a slow learner, I actually teach special education!)My  incision became absessed and infected and had it drained as a few tiny hairs were in it. I wear(wore) my hair short.  Well, I've finally caught on, every time I have a hair cut I have small scabs on my scar.  Thanks to the small(?) dent in my head, my hairdresser must nick it with the clippers.  I think I'll just grow it out a bit.  Sorry Scott, so much for the one paragraph!    :Pluv2teachsped

[matti]

Misdiagnosed for several years, finally diagnosed by my dentist. It was in 1998 and I was 40 years old.  I had Surgery 7 days after MRI. .  8 hour surgery at Stanford, 3.5 centimeter AN, Middle fossa, lost hearing and had facial paralysis. Was not expecting either one. Severe nausea in ICU, turned out to be the morphine, once off that, no more nausea. Only other thing I remember is being aware my family was with me and talking to me, yet I could not wake up. Spent 5 days in the hospital. My husband took 4 weeks off to help me out. I did not start driving until 4 months after surgery because of balance and eye problems. I still struggle with balance issues, but I am in vestibular rehab and finally coming along even after 7  1/2 years. My facial paralysis started to improve 4 months after surgery and I am 85% back to normal.

It has been a long ride, a little bumpy here and there, but it sure has shown me how strong I am emotionally and physically.

matti

[DeniseSmith]

I am 44 yrs old. Diagnosed 4/5/05 after MRI w/contrast. Tumor 3.1x3.8 cm. Had surgery 5/9/05, 10 hrs., tumor emeshed like speghetti in facial nerve, had to cut to get all of tumor, blood vessel feeding tumor, at time of removal tumor over 2 inches in size., ICU 24 hrs, hospital 5 days, rehab hosp 10 days. Unable to walk, left side, uncoordinated, used walker, then cane, now walking on my own, still have uncoordinated left hand and shaking.OT and PT for three months. I have facial paralysis left side, no hearing left side, platinum weight in left eye. CSF leak June, second surgery 6/23/05 to repair leak.  Back to work part time middle of July, full time in Sept.  Started back at Y in November, treadmill, 1.5 mph, 10-15 minutes, still I feel like vomiting.  Facial nerve returning up in the air,  6-18 months per surgeon.  Next MRI on 1 yr anniversary. 

[FlyersFan68]

I am 37-year-old male that had translab surgery for 1.cm AN April 2004 at age 35. I was losing my hearing for maybe six years prior which like others also went misdiagnosed so I never followed up with MRI until a doctor suggested one following a car accident. I also had some very nasty shooting pains in the AN ear. Hearing tests later revealed 0 percent speech discrimination which I wasn’t surprised. Hospital stay sucked and til’ this day don’t even like walking in a hospital. In fact, I almost threw up when my wife and I arrived at the hospital for her scheduled c-section ten months ago. That feeling of sickness later doubled while witnessing birth through c-section. I have no facial, eye or taste problems. No headaches or CSF leaks. I even had the stitches that dissolve on their own. Did have terrible neck pain on and off for first six months. Balance was challenging for a few weeks but other side compensated well. Back to work full time less than 2 months after surgery. No restrictions or setbacks. Eighteen month MRI looks good and doctor stated, “very pleased mass gone.. see you in 12 months.� I do consider myself lucky despite experiencing a long serious surgery. It wasn’t easy but I checked all grudges and depression related to AN at the door.

[Angela]

Took 1 week off work before surgery to prepare stuff, thinking I might die.  Thank God I am alive!
The 13 hour surgery itself was easy because I was asleep.  In ICU for 1 night, could hardly see the nurse.  I needed 2 units of blood but I had only donated 1 and had enough sense to refuse anyone else's. 
Nose started dripping fluid the next day but nurses didn't believe me that it was a brain leak.  A 2nd day of dripping and me complaining then the doctors put a shunt in my lower back and I had to limit my liquid consumption.  Each change of shift, my husband had to re-teach the new nurse how to arrange the collection bag and my shunt.
I had the strangest sensation that the backs of my thighs were HOT, as if heating pads were on them constantly (finally went away about 1 month post-op).
No dizziness, no pain and no extra meds after day #4.  Hallelujah!
I could hardly shuffle to the bathroom or down the hospital hallway for exercise.   No appetite and extremely fatigued.
10 long days in the hospital waiting for the leak to close.  At home, really out of it for about 2 months.  I sleep like a rock!
Recovery was tough, still is some days. 

[Jeanlea]

The only symptom that I noticed pre-diagnosis was a slight hearing loss on my left side when I was on the phone.  Family doctor put me on decongestants.  Obviously that didn't work.  Made an appointment with my local ENT.  He sent for an MRI to rule out an acoustic neuroma.  The next week he called and told me I had a benign brain tumor called an acoustice neuroma.  Two days later I met with the AN doctors.  They said my tumor was too big (3.5 cm) for radiation.  Surgery was scheduled for the next month.  Surgery was 13 hours for the translab.  Had a lumbar drain for all of the fluid they found.  Apparently I had a lot of it pre-surgery.  Just thought I was low on sugar. Woke up from surgery with facial paralysis and loss of feeling.  Also had some loss of coordination o my left side.   Spent 3 days in ICU.  Got out of bed on the fourth day and slowly got to the bathroom.  A couple more days and I was walking in the hallways.  Had some physical therapy in the hospital.  After eight days I was allowed to go home.  Finished up the steroids at home.  Sleeping pills helped me sleep the first few days.  Occasional pain pills.  My mom came to take care of me during the day.  Did some short walks with a cane.  Gave up the cane after two weeks.  Physical therapy for two months.  Spend another five days in the hospital for blood clots.  After eight weeks I returned to work.  Have slight facial movement now and feel physically strong again.  Still seeing my eye doctor on a frequent basis. 

[Boppie]

My 2 cm AN was discovered after hearing tests and word recognition scoring that showed decreased losses over a 4 or 5 year period.  The word recognition score was poor.  Hearing loss was my symptom.  My ENT ordered the MRI and referred me to a group in Houston, Baylor Otolaryngologists. Within 10 weeks, 12/15/05, I had Translab surgery. The surgery was 9 hours, and my surgeons got the sticky tumor off the facial nerve and brain stem.  I spent 24 hours in ICU, don't remember a thing until my husband told me to walk and get in the chair so I could get my ticket out.  I had the usual steroids and vicodin in the hospital, walked up and down the halls on the rail side, and was out of the hospital on the morning of day 5.  I rode 115 miles home without pain or sickness.  My balance control was good.  At home I took vicodin for three days and tylenol II for two more days.  I recovered rapidly and was able to celebrate Christmas at church and our house party.  On day 12 post op I developed "late onset facial paralysis".  I had dry eye, small blink, and small smile for 2 weeks after that.  By the fourth week post op my face was 90% recovered.  The dry eye vanished.  This is week five and I expect the strange tastes to go away soon.  Already the tongue sensations have changed three times.  I resumed social activities this week, life is rosy again.  I attribute my rapid recovery to wonderful surgeons, caring hospital nurses, this ANA information board, my caregiving family, and a positive attitude to look forward.  I celebrated my 64th birthday one week after surgery!

[Ron T]

Hi ,just saw your post on the web site. Here is my story...I had my surgery on May 27 2005...I had Retrosigmoid Approach..my tumor was about on the small side of middle...2.5 cm...My surgery was done by Dr Alan Boulous with the Albany Neuro group at Albany Medical Center College in Albany NY....excellent group,,people come from Boston to have it done...My ENT doctor was Dr Stephen Parnes...my surgery was about 9 hrs long,,which included 2 hrs to set up the Halo...Neuro Dr removed 70% of tumor first, then ENT Dr...removed the tumor from my ear...then the Neuro Dr Boulos PLANE-ED the rest of the tumor mircroscopically from the nerves..they took some fat from my back, and put that in where the tumor was,,,then glued it...to prevent Any Cerebal Spinal Leakage...the results were remarkable..usually the room spins for a few days,, not in my case..my only ordeal was the headaches which lasted a little over a month...was on Loritab,,2 pills every 4 hrs. AND Fioricet every 4 hrs 2 pills also...I would overlap so I was taking one or the other every 2 hrs...(had to drink warm Prune juice and stool softerners Every am because of the headache meds sort of bind you up..) lol...other than that I only lost some taste buds,,not to bad..and not with everthing..on my left side....my first MRI...was great...they usually want you to have another mri in 6 months...and they told me to have it in ONE year..Dr Boulous told me that if I opted for Gamma knife Radiation, which would be ok...but if the tumor Started to regrow again,,then surgery would be VERY difficult because of the Scar Tissue created from the radiation...he would not be able to remove the tumor from the nerves,,so I opted for his advice and had surgery.. My surgery took place on a Friday Morning and I went home on Monday noon..
I have NO Facial paralysis,my biggest concern was losing the tearing in my eye,,,that didn't happen either,,i put my contacts in 2 days after surgery with no problem at all.. my balance is great,,was back to playing golf in 6 weeks..i only lost some of my taste buds on my left side..but not that bad...good luck....

Any question..
Email me please..
Ron Trischetta
scoop@nycap.rr.com

[Rc Moser]

Had ringing in the left ear for 15  years, Migraine's for 10. Started failing Manatory ANNUAL hearing tests in 1990.  Base line was readjusted and sent on my way. Worked around REAL HIGH pitched noises for 30 years, Nothing noisier than a F111 Aircraft in Zone 5 AFTERBURNER. When found out I had a brain tumor,  SCARY!. Had my obituary filled out items priced for sale and my house in order. Only thing I remembered when I woke up was my head Hurts!, sideways view from the bed, the PAIN when they ripped the tape from my back when removing the spinal block, I thought they were skinning me alive, and My first good taste of meal. Life now is good! Life before the tumor? can't remember, but only dream!