Newly Diagnosed

[TT]

I was diagnosed on June 22nd; two days before a scheduled vacation and three days befor my 53rd birthday. Yes I've had much better vacations and Birthdays. On June 22nd my ENT called with the news that I had a AN measuring 1cm. He wasn't too sympathic abouth the news. He just as well could have been telling me I had a sinus infection. Anyhow, he did recomend me to a brillant specialist that my wife and I feel very comforatble with; Dr Peter Smith, St. Louis, MO. We had our initial visit with Dr. Smith on July 10, 2006 which was four days ago. The man is great , but right off the bat he informs us that the radiologist measured it incorrectly, It's actually 2cm. Well, most of those people reading this can relate to my feelings. I want this out of head as soon as possible so I scheduled surgery on August 24, 2006. This was as soon as they could accomadate me. I will have the Restrosigmoid surgery since I still have some hearing in my right ear although it's not good at all now with the ringing and stuffed feeling. My doctor told me I should be in hospital for four days and home for an additioanl 2 weeks before returing to my managerial desk job. He gave me a 30% chance of saving some of the hearing; I'll take that at the point. I'm as scard as anyone would be after hearing that horrible sentence, " You have a brian tumor". The waiting is just as bad as going in for my me. I've had two sinus surgeries, back, knee and a few minor procedures. I was Ok then, but this time it's different and I know that's understandable.
I have read a lot of disturbing storties and many good ones. My wife can always tell after I've been on the internet because of my depressed mood. I have always found that when I write or type about something that's bothering me, I feel a bit better. I know I'll be in good hands; Dr. Smith has performed over 800 AN surgeries. Perhaps, I'll drop in again afterwards to report my results.

Terry

[Desilu]

HI Terry,

What's the rush? You could try to get a second opinion. House Ear Clinic in Los Angeles will give you a free phone consultation if you send them your films. You are correct, there are a lot of horror stories on this website but there are also many success stories. The problem is, that the people that have good outcomes don't bother to post their experiences on this website, they just continue on with their lives as if nothing has happened. We are here to support one another! I wish you the best! Ann

[TT]

Dear Ann & Bruce,

I thank you both for your kind advise. My decision with the doctor, proceedure and type of surgery is typical for me. I do not believe in putting off the enevitable. I'm comfortable with my decisions and my wife is also in ageement. I want the normal life back I had until a few weeks ago. I have come to grips on the possibility of total hearing loss although I still stress myself out when I actually think about it. I have too much going on in my life both a home and at work; I don't need this added worry and stress. August 24th can't come fast enough. Other than the hearing loss issue I am not going to worry myself with all of the other possible conciquences; what good will it do?
Terry

[Raydean]

Hi Terry

If being told that you have a brain tumor wasn't scary enough,there's alot of scary stuff out there on the net that it's easy to overlook the fact that the vast majority of persons that have been treated for their AN's have positive outcomes and are pretty much able to resume the life they led prior to discovery of the tumor.  It's important to remember that the postings and some of the stories you read that are less then positive may be due to the tumor being very large, it's location or by being treated by a medical team that isn't experienced in the treatment of AN's.

The good news is that it's a very treatable tumor using which ever treatment option that you choose.
Know that we wish you all things good and positive.  Please keep us updated.

Best to you
Raydean

[Sue]

Hi Terry, and welcome to our little club 'med'. Well, obviously you are a man of decision because many people who come here are upset and confused and it takes them awhile to deal with and then make the decision that they are comfortable with. I know I was, but I was also rather quick with my treatment too, as I had it only a month later.  Your ENT was probably not sympathetic because he was passing you along to a specialist and he wasn't going to have much more to do with making any money from you!!     At least your ENT found it. Mine didn't and it took another symptom (facial numbness on the AN side) to develop before I was sent to a neurologist by my primary doctor. If I'd googled the right terminology, I think I could have diagnosed it myself!  THEN came the MRI and the diagnosis. My neurosurgeon recommended Gamma Knife to deal with my AN and I was comfortable with that and that's what I had done. He does both surgery and radiosurgery and thought GK was in my best interest considering my age and such. I am sorry you are among our numbers now, but I'm sure you will be able to manage the AN that has now changed your life. We all want our life the way it was...but now most of us have a new "normal" that we have to get used to. Hearing loss being the least of it, I think. The tinnitus, for me, is much more annoying along with the facial numbness which includes the left inside of my mouth and tongue.  It may get better, but I'm not expecting it to. The 'fullness" that you have I had to, but that has subsided, thankfully.  Good luck with your treatment and come back and let us know how you are doing. 

Sue

[Obita]

Hello TT:

I am one of the lucky ones.  I have no major post op problems other than being deaf in my AN ear.  My usable hearing was gone anyway so I had the translab approach which does make the ear deaf. 

I had a few minor (and normal) post op problems, dry eye, facial numbness......all was back to normal by returning to work at 8 weeks.  I was in the hospital three days.

As with you, I wanted it out of my head.  The waiting was the hardest.

Best wishes for a speedy recovery.  Fatique is very real after AN surgery.  Don't push yourself as the brain takes a while to heal and it heals from rest.  Back to work in a few weeks is not too common.  More like 4 - 8.  I hope you prove me wrong......

Kathy

[TaylorsMom]

Hi Terry,

I am also in the St. Louis area.  My 18 year old daughter had a 4.8 AN removed at Children's on Feb. 3rd of this year.

Tomorrow, Sat. July 15, there is a AN support group meeting in St. Louis.  My daughter and I will be there.  You should definitly come, too.

It's at St. John's Mercy Medical Center
Gillis Boardroom
615 S. New Ballas Road
Creve Coeur, MO 63141

Enter through the front door of the main hospital.  The Gillis Boardroom is on the left, before the info desk.

You can call Agnes Garino at 314-821-1905 or Peggy Wangrow at 636-227-7673 for more info.

You will be warmly welcomed and realize you are not alone in dealing with this.

Hope to see you there.

Kathy

[TaylorsMom]

Terry,
 
I forgot one important detail.  The meeting is at 1:00 pm.  My daughter says it's the Alzhimers.

Kathy

[TT]

I truly appreciate the considerate replies from everyone; it is very comforting sharing my thoughts, concerns, fears etc... with other unfortunate souls who share the same mental anguish. As of this time my decision remains to have the scheduled operation. I have a second appointment on July 25 to meet with a Dr Backer who will be performing the neurological proceedure. I plan to ask more questions especially concerning recovery. I can't stop thinking about having a hole drilled into my skull; what an eye opening nightmare. It forced me to call and ask, "How is it filled? The doctor informed me it's packed with stomach fat. I will confess that statement sat me back in my chair. Oh well, I better move on; it's time to get my mind moving into another direction.

Thanks Again Everyone,
Terry

[Jim Scott]

TT:

Welcome to the AN 'club', (as it were).
 
My personal experience with having my 4.5cc AN tumor surgically removed is posted on other threads and I won't re-hash all the gory details here,  but I can tell you that, just like you, I wanted that thing outta my head! - just as soon as I received the diagnosis from the MRI scan.  I think that is a pretty normal reaction. 

I received the news of the AN tumor from my PCP (Primary Care Physician) on May 8th and I had the tumor-removal surgery on June 7th (2006).  It would have been done sooner if I had my way but some none-AN-related 'complications' made it take an extra few weeks.  I had retrosigmoid surgery - and it went very well, with over 90% of the tumor removed (the remainer will be treated with radiation in a few months) and no nerve damage to speak of.   I was home from the hospital five days after I was admitted.   It took about 2 weeks before I felt anywhere close to 'normal' again (I slept a lot) and about 4 weeks to get back to my usual routine, including getting my surgeon's O.K. to drive, etc.  I'm retired, so returning to work was not an issue for me.  Returning to my former (pleasant) life was.

 O.K., so my balance isn't always perfect (no one notices) and maybe I don't have quite as much stamina as I once did...so what?   I'm 5 weeks out from my surgery and doing pretty darn well for a man of my age (63).  My doctors are near giddy with a mixture of surprise and satisfaction with my ability to not simply survive the AN surgery but actually return to near-normal at a record pace.  I don't claim that everyone else will be as fortunate and I have compassion and concern for those who may have a difficult recovery, but AN surgery, while a serious business, is not always doom-and-gloom - and that needs to be said, too. 

I hope and pray that you are as fortunate as I have been with both your surgery and your recovery.


Jim

[Suzy]

Terry,

I also have an AN but is only about 8 MM which is still small.  I am scheduled for retrosigmoid surgery 8/8.  I would like to know why you decided surgery vs FSR for a small AN.  The reason I am asking is because FSR sure does sound good, but my gut feeling is to get the thing out and get this totally behind me.  Can you also let me know why you are choosing retro surgery versus middle fossa.

Thank you and good luck to you!

Suzy

[Sefra22]

I can't stop thinking about having a hole drilled into my skull; what an eye opening nightmare.

I can relate to that. For the first few weeks after I found out about my AN, I was so concerned (obsessed )with possible side effects and recovery that I never really thought about the actual procedure. Then one night last week I woke up in the middle of the night having a full  blown panic attack, as I had envisioned the drill in my skull, and my brain being exposed  . I had to wake up my husband and I just sat in front of the TV for hours until I could go back to sleep. I still think about it every day, but I try not to let it consume me, especially since I decided to wait until January for the surgery.

[gemaste]

I hope you were able to attend our Support group in St. Louis.  I ran into traffic and was too late to attend.  I had surgery last Aug. in St. Louis with Dr. Grubb. doing mine.   After a year i ;am almost back jto normal.  Only deaf in one ear.  Please let me know if I can help. 
Glenn

[gemaste]

My typing is very bad.  Nothing to do with the AN.  Glenn

[TT]

Suzy,
I deceided on the retro proceedure because my doctor advised it and it made sense to me after he explained it.
You mentioned the size of your little deamon at 8mm. Mine is a bit larger at 2cm and I still have some hearing left although the odds are slim in regainning any hearing, I'll hope for the best.
Good luck on August 8th, I'm sure everyting will be fine.
Terry