ANA Discussion Forum
Archive => Archives => Topic started by: TT on July 13, 2006, 12:04:19 pm
-
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
-
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
-
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
-
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
-
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
-
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.ÂÂ
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
-
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
-
Terry,
I forgot one important detail. The meeting is at 1:00 pm. My daughter says it's the Alzhimers.
Kathy
-
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
-
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
-
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
-
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 :o. 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.
-
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
-
My typing is very bad. Nothing to do with the AN. Glenn
-
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
-
Sorry to say, the odds are almost none in regards to gaining back any hearing. I was told, once it's gone, it's gone. Sorry about that, for all of us.
-
Hi TT:
Please let us know when you are home from the hospital. Everyone is always waiting for that first post-op post.
As for the hole filler, yep - its belly fat. I forgot all about that part of the surgery until a nurse wanted to check my harvest sites.
Good luck to you and let us know how your appt. goes on the 25th.
Kathy
-
I didn't have surgery as such... i had fsr....
but do you know,
no doc when discussing possible surgery treatments mentioned anything at all about where/what/how any other body parts might be involved in an AN op?????? like , i had to ask where anything might be taken to plug anything in my head? such as from my stomach etc.?
i don't think it's a big deal for most patients with ans etc....
i do, however, think that anyone having a surgical removal of an An should know what is involved
Windsong
-
I had retro and didn't have any fat fills or anything harvested from anywhere. I do feel a slight indention on my left side that I don't have on my right which isn't really noticeable (of course I have no one running their fingers through my hair either >:( :-*)
You can't regain your hearing but with retro you might be lucky enough to keep what you had :o) For me it I had no hearing prior to an actually do have a slight bit now which took away that one sided feeling. It's not serviceable hearing but it's something :o)
Best of luck, and lots of prayers to those waiting for treatment!
-
Hi Terry.
I had retro surgery seven weeks ago. They did not fill in the gap with tummy fat (and I had plenty to give them). I assume they put the bone back in place as I don't have any gaps or sunken areas behind my ear. Check out this website and it may help you understand the different procedures:
http://www.earsite.com
Or http://www.earsite.com/tumors/index.html
When you get to this website, click on tumors and then on "more about acoustic neuromas" and that will bring you to a page that has pictures of where the incision is made for each surgical approach. Click on each picture and it will bring up step by step picture drawings of how they make the incisions and how they get to the tumor. Every surgeon's approach is probably a little different, but this helped me have a better picture of the whole ordeal.
Before my surgery, I was concerned that post-op headaches would be a problem due to bone dust from them drilling thru my skull. I had read about this on the ANA forum, so I asked my surgeon and he reassured me that they used a small instrument that would vacuum up all the particles before they exposed the area of the brain. Well I'm optomistic, but I know dust particles including bone dust cannot all be sucked up, but after looking at the drawings on the above website I understood that it was possible for them to make it as dust free as they could before they opened the next layer which is the dura. This site also mentions that the spinal fluid is drained off to let the brain relax, so that it can be moved away from the side they need to remove the tumor from. That was a scary thought to me. I think that is why most people feel so drained after surgery; besides the effects of anesthesia, they have to allow time for the fluid to build back up around the brain and let it recover before they feel normal again. It's a good thing our bodies can adjust to all kinds of situations. I am thankful to say my recovery has been super and I have no headaches to speak of; back to work in 23 days after surgery (office job).
Best wishes on your surgery and recovery.
Mtn Gal
-
Greetings,
I just read my initial post; what a typing mess. I was an emotional wreck that day and I've yet to find spell check on this site. My big day is closing in fast and I'm as ready as I'll get. The waiting as been pretty tough. I think about it and talk about it way too much. I know it's been an emotional drain on my family, but they hide it well. I've come to grips on knowing my life as I now know it will be somewhat altered, but as they say" That's Life" and I've learned to appreciate living. I went out and bought myself and my wife new vehicles last week. I'm ready to start the rest of my life with a whole new meaning. This is nothing but a minor setback, I know I'll be fine. I have faith and the amount of people praying for me has been over wheming along with the support extended from club members; I won't forget.
I will post my results as soon as possible, look for an encouraging note soon.
Terry
2CM
Diagnosed - June 22, 2006
Surgery  - August 24, 2006 7:30 AM @ St. Johns Hospital, St. Louis, MO - Retro Procedure.
-
Hi Terry,
I'm sorta a newbie too (may22), but I'm still waiting and watching...or more correctly researching in my case.
My tumor is also a little of 2cm. Did you get a second opion besides from a surgeon? I've seen 5 different docs now, and they almost all differ in their opinion, although if you have to have it out I understand that too. Retrosimoid it the best approach I was told for me if thats the case for hearing preservation...please keep us posted.
best wishes, melinda
-
Hi Melinda,
I commend your courage to wait and watch. I could never do it. I wanted this demon out the instant I leaned about it. I wish I could have had surgery the the same day I was diagnosed; sort of like heart patients. I am fortunate to live near a city like St. Louis who has many very good doctors. We were recommend to see Dr.Peter Smith by two ENT's who I know very well. They told us he was one of the best in the country and has over 800 AN surgeries to his credit. That's what I needed to hear. It took one meeting with him to know we didn't have to look any further. I made the surgery appointment on the spot. I'm praying to presevrve the little hearing I have although I'm prepared to lose it. Now, all I'm doing is counting down the hours (64).
Good luck with your decision. I'm sure you'll be comfortable with it as I am mine.
Terry
-
Terry:
I am very happy for you that your date with the surgeons is almost here. My wish for you is that you will be as calm right before surgery as I was. I was so at peace with my decision and the surgeons I chose that I was as calm as any other day the morning of surgery. I hope for the same for you.ÂÂ
My family was not as relaxed but that is to be expected. We get to sleep through the whole thing and they get to worry. They could not figure out why I was so calm. I was calm because I wanted it out BAD.
Best of luck to you and your family - Kathy O'Brien
-
Good luck, Terry, on your upcoming surgery. I hope everything goes as planned and that you are on the road to recovery soon. I know you have a lifetime ahead of you that will be all good.
Thinking of you,
Sue in Vancouver
-
Good Luck Terry. We will be thinking and hoping all is well for you on your upcoming surgery. Just try to remain calm- it will be over soon and you can start your new life.
P.S. What kind of cars did you buy? My husband is wanting a mazda 3- he has a ford F-150 now- with all the gas prices now.
We will be waiting to hear how your recovering.
Lisa
-
Hi again Terry,
Ironically, I used to live in St. Louis near hospital row (central west end) in an old 4 plex...my neighbors were all doc's and students. The guy above my was a neurosugeon. When I think of St. Louis I always think of the top medical facilities and doctors in the world. I'm sure your in great hands!
best wishes for you and yours, melinda
-
I wanted this demon out the instant I leaned about it. I wish I could have had surgery the the same day I was diagnosed;
Terry
Don't mean to take this out of context, but I felt the exact same way about my AN--you are not alone! The stress of the waiting was way worse than the actuall surgery. After all, who doesn't like being the center of attention and getting waited on hand and foot! Can your wife get access to a computer and give us updates--maybe start a thread for us? We are all walking around on eggshell the day one of the "family" has surgery, believe me. We'll be praying for ya, too!
Capt Deb 8)