ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: BostonJake on October 14, 2005, 09:29:20 am
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Hi guys,
Well, I've been diagnosed with a large AN for a few months and am having surgery (suboccipital) on tuesday. I have great doctors and am confident in t he procedure and have been accepting about the whole situation. However, that sense of accepting calm is starting to wane into anxiety. I'm getting scared about how all this is going too play out. I mean really scared. I have no symptoms except for some mild hearing loss in my right ear, and from what I hear, after surgery it's symptom city! So I'm scared. Dont want to tell my girlfriend how scared I am cause she's nervous enough. I have some great friends and alot of support, I'm just worried that I'm missing something I should get done before surgery. Any advice? Anyone out there have any advice on what to do leading up to surgery. I just feel like the clock is now ticking. This seemed so far away back in June! I can't belive it's here. ???
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Hi, Jake. It's pretty normal to start feeling a lot of anxiety right before surgery. I'm not an AN patient, but my husband is. He had a 3.5 cm An removed on Aug. 22. And he is doing great now! No complications. Went back to work 4 weeks after surgery and feels good. His only symptoms were some hearing loss, too. It's not a given that you're going to have a lot of problems or symptoms after surgery, so try to be calm and confident, think positive. You know you have a good surgical team, so great! You might think that based on the postings here, everyone has lots of problems post surgery, but that's not necessarily the case. People who don't have problems just go on and live their lives and don't post, so you don't know about them. We are involved in a support group in our area, and a lot of people with that group did well after surgery, too. LIfe DOES go on after the surgery. My spouse and I both had anxiety before the surgery, and it's hard to deal with that. There's not much you can "do" other than try to be positive and take care of yourself. Talk to someone if that helps, or seek counseling if you don't want to burder your loved ones with your worries. We both found that WAITING for the surgery was actually harder than AFTER the surgery!! Once it was over, we felt so much relief  like a huge weight had been taken from us. So hang in there and keep your chin up. :)
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Hey Jake,
I'm in the same boat, just a little farther back: my surgery is November 7. Now that it's quickly approaching, I find myself a little more nervous as well. Becknell, thanks for the encouragement!
Now, I'd like to point out a few nice things about your recovery: Pizzaria Uno and Dunkin' Donuts. ;D
My wife and brother both went to college in Boston, and I loved going to visit - it's the best city around. Now that I live in Vegas, I'm in Uno and Dunkin Donuts withdrawl - big time! The closest Dunkin Donuts we have is in Phoenix, and the one Pizzaria Uno closed. Depressing.
Seriously, I'm hoping everything goes smoothly for you, and you're better soon. Hang in there, and keep us posted!
Josh
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Thanks Guys, I guess I'll just stay busy!
Wow, no uno's or dunkies in vegas, I am so sorry!
Jake
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I had surgery Sept 19th, I know exactly how you feel, keep busy.The day before my surgery we had so many visitors my husband ended up barbequeing for everyone. Now everyone has been such a great help to my family and me.Everday is a better day toward recovery. I had the Middle Fossa, and after they went in my tumor had grown another cm in 2 months time it was almost 3 cm. Best wishes for a speedy recovery....Bernadette
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Hi to all
I feel your same anxiety. My surgery is not until Nov. 10th but it's all I think about except when I am really busy and things seem somewhat normal and then I remember and I can't believe it's all happening. I have a 2.5 cm AN left ear, only symptom, mild hearing loss and almost constant tinnitus. Have a great doctor here in Chicago who has done 950 of them and I found 2 people who had theirs done by him. Makes me feel a lot better - they are both doing well but still can't wait for it to be over and to wake up and get on with my life. I wish you the best with your surgery. We DO have Dunkin Donuts and the ORIGINAL Pizzeria Uno here in Chicago so I will take that advice!
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I am 18 mos. post op and feel great. That tumor and surgery is an old memory. As the weeks and months go by your body will adjust and recover. Almost every morning I have Dunkin' Donuts coffee and can't live without. Maybe I'll send you a few bags ;) Best wishes to all on your surgeries and keep us posted!
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Hi Jake,
I know exactly how you feel. When I first set the date for surgery it seemed far away but it got here really fast.I tried to tie up loose ends and keep busy.The unknown is always scary and each an patient has their own journey. I had surgery 8-2-05 and I am doing good. I agree with Becknell that most an patients recover and resume their lives without posting their good reports.Feeling confidant about your surgical team is great.Take a deep breath,think positive,let your family and friends take care of you and know that you are in our thoughts and prayers.We pray for peace for you,guidance for your doctors and a speedy recovery.
Take care and God bless,
Lynn
Josh and judy we're praying for you Too!!!
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Hey everyone,
Thanks for the good stories. I've found that people often share more difficult/problematic experiences than good ones, although AN folks seem more balanced. If you read travel reviews, though, you'd get the impression you should never travel anywhere! ;)
I'm looking forward to a smooth surgery and recovery. Although I'm convinced Unos and Dunkin Donuts would only help... oh well.
Jake - keep the faith, and keep us posted.
Judy - we'll share stories as soon as we can.
Thanks again!
Josh
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Hey Jake
My surgery is Tuesday also, when I saw your post, I thought 4 days! Thats soon! I'm still fighting off a cold, I need all 4 of those days. Having middle fossa surgery at Kaiser, Redwood City, CA.
Linda
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Josh - I was just in Vegas (my first time) and they have soooo many wonderful restraunts. Now that I think about it, I did not see any donut places. It was way hot and crowded and I left some money there as well. Last year my son turned 21 and went to Vegas, the highlight of his birthday was shooting machine guns, tommy guns, etc... at some place on the strip. I was not allowed to go. Boys!!!!!!!!!
Linda, Jake, Judy and Josh - I know how you feel, I kept myself so busy the days before my surgery and tried to be strong for everyone else, but that anxious feeling was certainly there. For me the worst part was the days before, relief and calm set in right after surgery and I looked forward to my recovery. I am 7 years post op and doing GREAT!
Please know that you are all in my thoughts and prayers and let us know how you are doing.
matti
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Hi, Everybody,
This is a very positive post that I don't often see in this forum. Not only supporting each other and sahring the experience, it seems that showing some connection with others is also important here. OK, I also went to graduate school in the great Boston area and do miss Dunkin Donut which I can not find in Houston now. I did visit Chicago many times but have not had the original Pizzeria Uno yet. As for Vegas, ....
Be serious, I do agree that people tend to overlook the importance to share their "successful" stories in this forum. I just want you to know that I had a very successful surgery to remove the 2.5 cm AN on my left side. Other than loosing my left side hearing ( a given in my case) and a few minor/temporary symptoms, I have been doing great since the surgery in Jan'05. Back to work full time after 4 weeks.
Among all the good things in my case, I am most grateful to the peace in my heart even before the surgery. You will be in my prayer and I wish you all have the same kind of peace as I had. God bless you.
David
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Wow,
Thanks you all for your kind words, after the hectic day I've just had, it was nice to sit here on my couch with my laptop and read your heartwarming thoughts. Thank you.
Linda- You and I have surgery the same day, keep in touch, I'm sure all will be well.
I am a little bummed about a few things.
1) I feel fine. Slight hearing loss in my right ear. But other than that, no symptoms whatsoever! So it's kinda a bummer to go into the hospital feeling just fine and not knowing what you'll come out like. Like I said in my first posting, I know I have a great team, and supportive friends, so I'm going into this in good shape.
2) I've never spent a night in a hospital before. In fact, I really hate hospitals. I dunno, my mom was sick a lot when I was a kid and I think it's left me a little uneasy about the medical world. I don't like things that beep, needles, pain, and my biggest fear....a CATHADER! I have no desire to have a straw placed up my Capatain Winky. That just can't be a pleasent feeling! So the bottom line....I just dont like hospitals. I wish this was all over with....
two days to go. Gotta be at the hospital at 5:30am on Tuesday.
Thanks everyone,
Jake
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Oh, and I just thought of one more thing thats buggin me! I really like hearing in stereo. I'll miss that so much.
Jake
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Jake
I feel pretty much the same way you do...I have a very slight hearing loss and feeling of fullness; but I would rather get it out and over iwth and be able to move on. You have a good doctor, as I do, and they will do the job!! Think positive. Hey and don't worry about the catheter, you'll be asleep! The removing thing is quick. The thing I worry most about is the nausea, tomorrow I go in for pre op and am going to make sure they give me anti nausea drugs as soon as i wake up. I go in at 6am Tuesday, these docs like to work early!
Good luck and let me know how you do.
Linda
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Jake & Linda - Best wishes for Tuesday. Our prayers are with you. I wish you an uneventful surgery and an easy recovery. May you both be one of those people who recover so well & so quickly that we never hear from you again! (you know what I mean)
Josh - What about Krispy Kreme? The Excalibur has a small KK donut store there. And I recall that Walgreens partway up the strip has an outlet. Up here in the GWN (Great White North) we have few KK donuts. Whenever I get to Toronto, I always stop at the one in Scarborough. We have millions of Tim Horton's here, though. They're the GWN's official donut chain. Where I live (just outside of a city of 70,000 people), there must be at least 12 Tim Horton's donut stores. Counting the other companies, we'd have close to 30 donut stores, I'll bet. You see, it gets so cold here we need our coffee & donuts to get us going. The heat of the coffee helps to defrost the window. How about I send you a can of Tim Horton's coffee for your recovery?
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Hi Gang,
Well, it's 625 am on monday morning, just 23.5 hours until it's time to start cutting. I don't know what's up with these doctors getting up so early, so I asked. Get this, they say after I'm asleep it's a good 1 1/2 hours of connecting monitoring equipment for your nerves. Then the doctor said he might not come out to the waiting room to tell my girlfriend how everything went until 9-10 that night. Here is what I want to know. If I was a doctor, how do you go that long in surgery without becoming absolutly exhausted. Do these guys even take a break for lunch??
Well, I'm scared. I'm thinking about heading down to the hospital today just to look around and see what it's like. I just plain old don't like hospitals.
Thanks again for all the kind words, hopefully I'll have a chance to get on here again before tuesday morning and read more of your great thoughts.
Thank you all,
Jake
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What does resection mean? As in resect the cerebellum?
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Hi Jake,
I know how you feel. I went through all the motions those last few days before surgery but the whole time as I was doing "normal" things, inside I was screaming I'M HAVING BRAIN SURGERY !!! Just know before long this will just be a memory. I pray things will go good for you.There are lots of us that have successful outcomes.
The doctors don't come out until surgery is complete but if you ask the nurses will keep your girlfriend updated. My surgery was 8 hours but I was back there about 10-11 hours. The nurse kept my family informed.We really appreciated that because the wait is misreable.
You are in my thoughts and prayers,
Lynn
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Resection means removal of the tumor. It's a surgical term. Usually there is more than one doctor doing this surgery so, as it was explained to us, they sort of tag team, one works for a while and then the other works for a while, which gives them each a chance to take a break, I would presume. But doctors must have unbelievable stamina. Our surgeon did a different brain surgery before my husband's 9.5 hour surgery, which means he was doing surgery from 6:30 a.m. to 10 p.m., and then still had patients to see in the hospital. They did a great job.
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Thanks Gang, well this morning has been crazy, all the proxies, work forms, and last minute details, I'm going to take the afternoon off, go apple picking, and just sit on t he beach and breath.
Jake
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Jake,
You'll be our thoughts and prayers tomorrow. Try to enjoy today (sounds like you're already on your way), and know that there are a lot of people pulling hard for you!
Let us know how you are when you feel like it. Take care!
Josh
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Do these guys even take a break for lunch??
I guess this wouldn't be a good time to watch Sienfeld and the "Junior Mints" episode.
All the best for you, Jake. You may not like hospitals, but after the surgery you just might not need to see any for a long time! You're having this experience when you're young and strong, so that you have this fresh in your mind and can avoid them for many years. Enjoy your apple picking, if that's possible today. And think of that during your recovery. One year from now, you'll be out picking apples again, but with happiness that you had your surgery and recovery. Those apples will be sweeter than they ever were before.
I've often wondered the same about the doctors and long surgeries. They probably get so intent on the surgery that time flies for them. I'm sure they rest when they take turns.
Let us know how things work out, but only when you're feeling well enough to let us know. I'm sure you will have a restless night tonight, but remember that there are a lot of people out here that will be thinking about you.
Linda - the same applies to you!! We'll be thinking of you this evening, tonight and through tomorrow. And we're hoping for a speedy recovery.
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Hi Jake, You are not alone. I am glad to hear you are going to take a bit of time to just relax. I personally love the beach. The best news is....this will all be behind you very soon. I will spend some time tomorrow saying special prayers for you and for Linda and for those that love you both. I know you will both be fine. This group will be here waiting for news and for your return. I wish you peace for the remainder of your pre-treatment time.
Oh, my surgery was done using the same method as yours and my doctors told me they do use a tag team approach.   Sherry
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Yea, I'm feeling really jittery and dont know if that the antiswelling medicine they gave me for 48 hrs prior to surgery, or if it the fact I'm about to have brain surgery. My girlfriend Jo is stressed out to the max, I wish there was something more I could do for her. I hate seeing her so sad.
I'm off to feed an 800lb pig at an apple farm lots of apples. Allways a fun time.
Seen the jr mint episode, I got a worse one. Last scene of Hanibal. Yuck!
Jake
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Actually, I think "sitting on the beach" or some other equally relaxing pursuit is one of the best things you and your loved ones can to do prepare for this surgery. A couple weeks before my husband's surgery, we took a beach vacation  it had been planned before the diagnosis, and we wanted to squeeze it in  and just had time to sit on the beach, relfect on the wonder of life and know that whatever the coming treatment brought, we could deal with it together and that we were certain we had made the decisions that were right for US. I felt that this "getting our minds right" as I thought of it then, was very helpful for us. Also, the morning of his surgery, I took time out for two things  one, to spend some quiet time praying, and two, to have a good, long cry, and that helped release a lot of stress for me. Then I felt I could be strong for HIM. :)
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I wonder how Jake and Linda are doing? :-\
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Jake & Linda - thinknig about you two today. Hope all is going well!
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Isn't it funny how you don't have to know someone to truely care what happens to them, Jake and Linda you are in my prayers also. I hope a speedy recovery for you both. Deb
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Deb - I know exactly what you mean.
I have a little note pad next to my computer with everyone's surgery date and on those days the concentration on my work seems to take a back seat. Most of us will probably never meet in person, but we all share a very strong connection.ÂÂ
Keeping you all in my thoughts and prayers!
matti
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To all those going through the anxiety of the "last days/hours" before surgery:
I can totally relate to the anxiety you are feeling at this time, I have come through this twice now the first time I didn't expect to live to get off the table and the second I was seconded guessing my decision to have brain surgery in a "voluntary" type capacity (didn't have to be done at this time physically but want it done psychologically)......you will be o.k., you will cope with what you must once you are on the other side, our imagination can make things much worse than they may end up to be and although we may not be physically the same we are going to be some of the strongest people in terms of dealing with stress the world has to offer. (I laugh at what some people consider stress now).
You are in my thoughts, Kathleen
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Just a little note to say I have had Linda and Jake on my mind all day. Hoping they are both doing great. I think its wonderful that we all have an "extended" family of sorts here. I feel the connection everytime I come here.
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Jake and Linda are in my thoughts and prayers, sure hope we hear something soon!!!
Lynn
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Hi,
Well I'm home. Feeling exhausted, surgery took nearly 14 hours....willll write more as soon as i'm not druggeeed up too much to type.
Jake
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SOOOOOO glad to hear from you, Jake. When I saw that you were on the board again, I couldn't click fast enough to find out what you had to say......You've been in my thoughts and prayers quite a bit, and it's hard to wait for news of someone else's surgery.....I know everyone else on this board identifies with that whole "waiting" thing...Thought about you and Linda a lot on Tuesday, your survery day. Praying for a speedy and totally UNEVENTUFUL recovery for you. :) Jennifer
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Hi,
Well I'm home. Feeling exhausted, surgery took nearly 14 hours....willll write more as soon as i'm not druggeeed up too much to type.
Jake
Wow! Great to hear from you, Jake!! Good to know that you're home and recovering. ;D
Make sure you get lots of rest, and let us know the details when you feel better! I hope that everything went well, you have few 'side effects', and you continue to recover quickly!
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WooooooHoooooooooo Jake. So relieved to see you back here. Get lots of rest and let us know how you are when you feel up to it. You will stay in my thoughts as you continue to recover.
Now hopefully we will all hear from Linda soon. Loves to you both. :)
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Jake,
Welcome back! Wow - 14 hours - you're the man! Glad to hear from you. Take your time, rest, feel better, then let us know how you feel.
Wishing you Dunkin Donuts and Pizzeria Uno thoughts, my Boston friend.
Take care!
Josh
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Jake,
SO glad to hear from you!!!! You will continue to be in my thoughts and prayers. Praying for a speedy recovery.
Take care,
Lynn
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Thanks Gang,
I'm doing alright, it was a bit scary there for a bit. Have some great friends and grilfriend and family. Had to have a filter intstalled cause of blood clots....more on that later. Glad to be out of the hospital, not a big fan of hospitals in general but I have to tell ya, the doctors, nurses and staff were excellent. Will write more later today....
thanks for your thoughts, its was really comfortng to know.
Jake
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Geez, Jake -
You're already typing well. This puts a lot of pressure on me with my upcoming surgery and recovery. ;D
I can only assume it's the donuts...
You 'sound' great - thanks for keeping us posted. You're in our thoughts and prayers!
Josh
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Hi Jake and everyone
So glad Jake to hear you are home and doing OK. We're done thank God. My doctor,after discussing it in detail with my hubby and me changed my surgery to posterior fossa to make sure my facial nerve was protected. We oringinally had middle fossa scheduled. So, surgery on Tuesday was about 6 hours, facial nerve is perfect but so far no hearing. My doc beleived he saved my hearing and says time will tell. That evening was horrible, I have problems w/nausea and anesthesia and I was soooo sick. The bext 2 dqys were marginally better. Came home Friday and today took a walk outside twice around our court so things are looking better. Really didn't eat for 5 days , what a diet plan. Am eating small amounts now, not much pain, I just have the dizziness issue to work thru. So glad its over, overall from a medical perspective it went well, so thats great. Thanks to all of you who thought about both myself and Jake during our big day, it is moving and amazing how many caring people are out there. My husband has been an incredible rock and a pretty good nurse!!
Thx again, Linda
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LINDA!!! It's really, really great to hear from you. I'm happy to know that you're home, safe & sound. I hope that the next few days continue to progress equally as well. Just take it one day at a time. Since your hubby is a really good nurse, don't be afraid to play it up a bit!! :D
I hope that your hearing does come back. It sounds positive, and from what I've read, the nerves can get bruised and really messed up during the surgery and recovery, so quite often they aren't working very well. If that's the case, once it settles down you should get some hearing back! Keep us posted when you're able to, and make sure that you get lots of rest!
And JAKE, hope that things are going well for you, too. We're thinking of the both of you during your recovery and wish you all the best!
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Linda,
It is so good to hear from you.I pray you are on your way to a speedy recovery.Take care of yourself and keep us posted.
Lynn
PS you deserve to play it up a little(thank goodness for husbands that are good nurses)
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Well you've made my night!!! Yipee!!!! So glad you are both home and on the road to recovery. Keeping you in my thoughts and prayers.
Linda - My hubby was also a wonderful nurse, I could not have gotten through this without him.
Keep us posted.
matti
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Linda and Jack,
So happy for both of you. Will keep praying for your speedy recovery.
Josh and Judy,
We have not forgotten your upcoming surgery while celebrating the success for Jack and Linda. Just want to reassure you that you are in my thoughts and I am looking forward to good news like this from your in a few weeks.
David(707)
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Yes,Yes,Yes,.......Linda is back home too!! So glad to hear from you both and Linda what wonderful news that your docs saved your facial nerve. Get lots of rest and keep us posted as you feel up to it.
My thoughts and prayers are with Josh and Judy also.
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Linda,
Great news, so good to hear from you! I had a small hickup today and was up with explosive diharrea yesterday, so much so that I blacked out and went to the ER to be safe rather than sorry. If my girlfriend Jo handn't have caught be, it would have certainly been much much worse. I feel better now, without being too graphic, I just had to unload a bit.
Lots of gingerale and saltenes on orders for today,
Jake
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Hi everyone,
It's great to read some positive perspective on AN surgery. As I read thru Jake & Linda's progress (after the fact, of course) I was surprised by their quick return to the computer. It gives me relief.ÂÂ
I am scheduled for surgery on Nov. 10th at Stanford in CA. I am 35 years old with a 17-month old son (crazy little monster of mine), so the diagnosis of AN was quite a blow. I thought I just had some residual congestion in my ear from spring allergies. Not so lucky, I guess. Yesterday, I finally sat down and read some thorough information on AN given to me by my doctor, and it didn't seem very encouraging. It was actually a chapter from a textbook, so it focused a lot on technique and complications of AN surgery. Of course, I then had a vision of myself with every complication posed in the chapter. So, I opened the brochure for this website, and decided to find out what real people experienced through this process.ÂÂ
I'm not as petrified as I was last night... thank you all. I'd been pretty confident about surgery until yesterday. So it's been good for me to hear the good news everyone has to share. And no, I don't have dunkin' donuts or the pizza place to look forward to, but I have In-N-Out Burger... which is oohhhh so good!!
Thank you all for sharing your thoughts,
Shawna  (in Reno)
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Shawna who is your Dr in Standford? I just had my surgery there in Sept. Nice hospital, alot of good people to take care of you. Best wishes to you..........Bernadette
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Bernadette -
Dr. Nikolas Blevins and Dr. Chang (neurosurgeon) will be assisting. Who did yours??
Shawna
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ah ha!! shawna! we went to in-n-out burger about 3 times in a row when i was in LA for my surgery! we drove about an hour each way and it was SO WORTH IT! yum! i wish i could convince whoever owns in-n-out burger to start one up here!
just a little word of hope for those pending surgery. i wasn't nearly as incapacitated as i thought i was going to be after surgery. i was on the computer (ok..so i'm an addict) while i was in the hospital. in fact, i went to a mariner's/angel's baseball game the day after i was discharged. i also did a lot of walking around hollywood and santa monica and the beach. i actually felt better when i was up and moving than i did when i was just sitting and watching tv.
anyway, congrats to you two who just got done w/ surgery! you made it!
kristin
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Kristin,
In-n-Out sounds great, but what I really want is some Cracker Barrel. I've driven from Las Vegas, across the Hoover Dam, all the way to Kingman, AZ just for lunch at Cracker Barrel. Dragged the kids along, too.
One bite of Country Fried Steak, and I'll be almost as good as new.
(But I'll be sure to wash that down with an In-n-Out Double-Double. Go big or go home!)
Josh
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you're kidding me!? there's no cracker barrel in vegas? wow. i thought we were behind in the times! ;)
how are you feeling?
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Hey Kristin,
Seriously! You can't put a Cracker Barrel in the most rapidly growing metropolitan area in the country!?!?!? :P
I actually e-mailed CB about that - they have no plans to build here as of right now. I then e-mailed them back, demanding money to start a CBA (Cracker Barrel Anonymous) support group. That got a chuckle - but no money and no Cracker Barrel! It's a bitter pill...
I've been feeling just so-so. Lots of headaches, which are occasionally joined by Mr. Fever. Fun. The more rest I get, the better I feel, but my alarm goes off at 4:40 each morning, so a long sleep is a luxury. Still, my last day of teaching is Thursday, so I should be rested up before surgery. Family medical leave is a beautiful thing!
Anyway, thanks for checking up. Honestly, I'm more upset, in the big picture, about the lack of Cracker Barrel. I figure I'll get through surgery and recovery, but no Cracker Barrel? That's tough.
Take it easy!
Josh
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Awwwwwwww Josh...I could'nt live somewhere with no Cracker Barrel. I have eaten there two times in the past week. Next time I will think of you while I enjoy my fried apples... :)
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We don't have Cracker Barrel in Canada. At least not anywhere I've been. I've been to a few of them in the US, and they are very good! I guess "free trade" didn't include your Cracker Barrels. We should have read the fine print on that one!! We also lost the Olive Garden a few years back also. And, the Krispy Kreme donut store (About 2 hours from here) has closed its doors, too. We don't have In-N-Out Burgers, either. I went to one in LV - very good, yes! But we do have Tim Horton's. It's a federal law that Canadian citizens must purchase at least one Tim Horton's coffee each day. We're big on coffee shops up here. In all seriousness, you just can't get a decent cup of coffee in the USA! I think that's the only thing that keeps us going up here. And no more Radio Shack stores, either. They were bought up by Circuit City earlier in the year. We now have The Source by Circuit City.
Well, I have to go and run out to the store formerly known as Radio Shack. I need to get some new vacuum tubes for my computer. I understand you have something called "a transistor" in the USA? Hey, you can give yourself an MRI with the tubes in your computer's motherboard here in Canada.
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Hi Shawna, Dr Roberson and Dr Choe were my Drs. I had the Middle Fossa, was in the hospital 4 days and asked to go home. To far from my sons and there is no place like home. Since there were no problems they let me go, it was nice being taken care of in the hospital though, because having only sons they take care of you in a different way.Gotta luv em......Bernadette
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Bernadette - I was wondering how everything went for you and how your recovery is going. I had mentioned to you before your surgery that Dr. Roberson was also my surgeon in 1998. I am scheduled to see him for my yearly check up on Nov. 11. He is such a wonderful doctor. I also asked to leave the hospital, I am in San Ramon and being at Stanford seemed like a million miles from home. It was hard for people to visit because traffic sucks.
I know what you mean about being taken care of by sons, as I also have boys (19 and 22) and they seem to have a whole different perspective on caring for good ole mom, but I wouldn't trade em for anything in the world.
Have a great day!
matti
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WOW Josh no Cracker Barrell!!! We actually got lost in Raliegh the day before my surgery looking for a Cracker Barrell. I was admitted the day before surgery for antibiotic therapy and my husband wanted to take me to Cracker Barrell for lunch before being admitted. I settled for Lone Star and I do mean settled! As soon as I got up and perking I went to Cracker Barrell!!!!
You will be in my thoughts and prayers as surgery time approaches!
Lynn
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In all seriousness, you just can't get a decent cup of coffee in the USA!
i'd like to take you up on that!! :) i'm not exactly sure where you've tried USA coffee (not starbucks..ew) but i bet my little coffee stand on the corner could take on your Canada coffee anyday!! ;) i have had your chocolate though....and you win! :)
quick side note....i live 70 miles from the canadian border and finally this year went to canada for the first time ever! sad, huh? we had an Ikea urge, so went to calgary and WOW! the Ikea is HUGE!! it was fun too because it was like we had a discount on everything! :)
krispy kreme i can live without, but the olive garden?
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Send me your address and I'll send you a can of Tim Horton's coffee! I won't send a cup of coffee, though, since that didn't work out very well last time. :-[
IKEA. Yes. "Sweedish for common sense." Great stores. Hey, you're right. It's like a discount. You see, we try to be good neighbours up here, so we offer a good discount to all of our 'murican friends. The Olive Garden has been gone for about 7 years now, I think. Your corner coffee stand might be pretty good. I haven't tried the little corner shops. Just your avg. US restaurant or donut shop, though, and they just don't compare. Have you tried our maple syrup?
After the LV get together, we might have to invite everyone up here to Canada for the sequel. What can we call the little get together? Tumor Bloomers?
There could be a competition for the largest scar, best MRI. Perhaps a wrestling contest. Now that would be good. Two people wrestle until they get so dizzy they fall down. The ANcademy Awards!
John
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well...it wouldn't be a long wrestling match, believe me!! until someone gets dizzy? i close my eyes and turn my head and get disoriented! :)
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John,
Would we be allowed to cross the border? What if the Canadian authorities think of AN's as some sort of 'Mad Human Disease?'
Still, I like Canada the two times I've been. Very large. Quite big fish. And tasty, too!
Your MRI scans are hilarious - Thanks!
Josh
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When crossing the border, you're fine if you drive through and your scar is in the rt. side. They won't see it. If it's on the lt. side, just tell them it was from the body cavity search they did last time.
I've also come to an important decision. If it turns out that I don't have AN, I'm going to feel so guilty after meeting everyone here and getting to know you and what you've gone through, that I will have the surgery anyway, and it might just cure my run-on-sentence problem at the same time. I don't think they'll gamma-knife me (and they have to aim at something) so it's best that I don't persue that route.
I can see you leaving Canada now: "So long and thanks for all the fish." (You did see Hitchikers' Guide to the Galaxy, dind't you?)
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Hi Matti...I am doing fine except for the dry eye .When I saw Dr Roberson last week he put in a plug which seems to be helping. My sons are 22 ,14,12.The oldest and youngest help me the most,of course my husband didn't realize howmuch I did till now . Your right though I wouldn't trade them........Bernadette
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I leave tomorrow for my pre-op visit at Stanford... thanks to traffic in the Bay Area, I have to spend the night before to make sure I get to my appts. on time. Next Thursday is my surgery (retitle this string as "10 days 'til surgery"), and I hope not to stay longer than 4 days. My family has to stay in hotels the entire time.... can anyone recommend rooms that are reasonably priced and close proximity to Stanford, within a couple miles ? I get to have my post-op appt the day before Thanksgiving. Hope I'll have lots to be thankful for!
On the sons topic, I have one son, and of course @ 17 months old he makes me dizzy just trying to keep up. But, ooohh how he makes me smile!! He is the greatest thing in my life, and the big reason I'm nervous about the surgery. I don't know what I'll do without him for 4 days. :'(
On another note, it's amazing how many people you find that have had AN surgery. It's like a whole world has opened up. In fact, a sales rep that came to my work last week mentioned he had a "congested" ear, and I asked if he also had tinnitus? I told him he should get an MRI, cause, quite frankly, I think everyone with hearing and balance issues has AN. Hopefully not, but it seems more common than I ever imagined. Funny how something can be totally unknown to you, suddenly it pops up and your whole perspective has changed. Anyway, I'll shut up for now.... it's more fun reading everyone's humorous notes. Keep em flowin'!!
Shawna :)
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Shawna,
I wish you all the best with your surgery! I hope you have the best possible outcome and have a fast recovery. Please keep us posted on how you are doing if possible. Who is doing your surgery? What approach are they using? How big is your AN? Do you have any hearing loss?
The four days without your son will be hard. I have two children and have never been away from them for more than a night or two. I am sure it breaks your heart to have to leave him, perhaps he will be the motivation that helps you heal fast and stay healthy.
Good Luck and Best Wishes, Suzanne
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Suzanne,
My AN, according to the radiology report, measures 1.4x1.0x0.7 on the left. And yes I do have a little bit of hearing loss, but not much. The symptom that I have the most trouble with is the dizzy spells. Three times now, the dizziness has put me over the top with the N/V/D side effects. It had been a month since my last spell, so I thought I was over the bad stuff, but Friday it hit me again. One of my coworkers had to drive me home, and I almost didn't make it inside before "hurling" :P (sorry for the visual). In that respect, I can't wait for surgery!!ÂÂ
I think I'm going with the MF approach. My doctor thinks it's best, and it sounds like most people don't have too many issues with the facial nerve as far as approach goes. How much the tumor is entangled in the nerve seems to be more of a factor than how they go about it, so I guess I'll just hope I have a nice, clean, cooperative tumor:)ÂÂ
Of course, on Wednesday I have to commit to my decision. Well, my son is trying to press the blue button on the computer (power), so I guess my time here is up.
Shawna
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Shawna,
I had MF approach 3 years ago and lost more hearing through the op than I had pre op. That is hearing I will never have again. Have recently discovered that it has grown back and am really p....d off. The possibilities of it returning were advised to be slim / virtually non existant. Radiation treatment was never discussed - surgeons only want to operate.
Since the regrowth, I have lost more hearing and will be undertaking radiation treatment this time around. I know you only have a few days to go but you should look into the alternatives.
Larry
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Shawna, only my husband came with me, the first night he slept in our car.I didn't know till later he said he didn't want to be far.The other nights the nurses gave him a pillow and blanket and he slept in some waiting room, got up there was a shower down the hall, cafeateria downstairs. Now I'm not saying he was excited about this, but like I said he didn't want to be far.So he was pretty happy to go home as well.     Larry I was wondering did they take the whole tumor out?I had the MF also and you just spoke of my second worst nightmare ..........regrowth. The first nightmare was finding out about the An .     Bernadette               ÂÂ
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Bernadette,
I was told post op that they got it all out then when it was discovered that it had grown back the ENT guy told me they leave the crust of the tumor on the nerve so as to not damage it. I understand that they scrape out the tumor and in my case obviously left some of it behind. Maybe you should clarify with your surgeon as to whether any part of the tumor was left behind. You are right about the second worst nightmare.
However, thanks to this web site, I have learned a lot about AN's and different treatments. I would certainly recommend having regular (annual) MRI's just to make sure.
I hope your AN was completely removed.
Larry
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Larry my youngest son was surprised they did not give us the tumor in a jar.(ick!)Then I would already know if the whole tumor is out.I am going to ask my next appt.(not for the tumor) If they did take it all out, and hope for no more nightmares....Bernadette
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when i had my surgery in LA, my 6 year old daughter (then 5) stayed home with my sister. i was ok when i was gone (11 days) because Sydney had spent time away from me before at her dad's house and i was used to it. but when i got off that plane and went down on my knees to hug her...i totally broke down... sobs and sobs.
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Just got back last night from my preop visit at Stanford... Yes, the neurosurgeon said that if the tumor was too difficult to remove from the facial nerve that they would opt to leave miniscule amounts rather than risking more damage to the nerve. But I opted for surgery because of my age, and the effects radiation has on the tumor. I didn't want to start with radiation then have my tumor grow in leaps and bounds and need to be surgically removed anyway. I don't want to do surgery on a "sticky" tumor. If you don't mind my asking, Larry, how old were you when you had your surgery??
My husband is planning on staying at the lovely Travelodge in Palo Alto with his dad, only 3 miles away. He says he won't be able to leave me "alone" at the hospital, but he b*&%ched and complained when he stayed with me when our son was born. And that was on a recliner type chair. He hates hospitals anyway, so he'd be better off at the hotel.
I was wondering if they would give you the tumor in a jar?... I work as a Microbiologist, so I'm used to, and fascinated by all things gross and disgusting. You don't want to know about some of the dinner conversations I'm capable of. I would really like to see my tumor when they take it out though. Then I can shake my finger at it, and tell it a few things...
what is it with the surgeons not wanting to throw in a tummy tuck at the same time as the craniotomy closure? I asked him, and he just laughed. But I'm serious!! My OB wouldn't do it when I had a C-section, and now my AN surgeons won't do it either. They're there...what's the big deal?
Josh-- good luck to you in a few days... I don't know if I'll hear from you after yours, but before mine, so I hope all goes perfectly!
My butterflies were stirring yesterday, I can only imagine what they are doing to you. I'll be thinking about you, fellow Nevadan!!
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My husband asked his doctor if he would "save" him a piece of the tumor so he could take it home with him in a jar and was told by the surgeon that it was against hospital policy to do that because of hygene standards, etc. I thought that was so weird that he wanted to keep it! lol :)
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I think it would be considered a biological hazard. If the patient had hepatitis, it could spread it.
What about asking them to take a picture of it during surgery?
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I didn't want to start with radiation then have my tumor grow in leaps and bounds and need to be surgically removed anyway. I don't want to do surgery on a "sticky" tumor.
Just curious, did somebody lead you to believe that radiosurgery would cause your tumor to grow in leaps and bounds?
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Hi Gang,
I thought I would send you all an update. I had my surgery oct 18th, it was scary as hell. Here I am, not even three weeks later and I feel great and am starting parttime back at work today. I can't belive it!
So I guess they had to leave part of the tumor behind, anyone have any exprience with this. I have the utmost confidence in my surgical folks, my Doc is great. But I guess my tumor was partially around a major blood vessel in my brain and removing it would have caused me a big risk of stroke. So now I'm waiting to have an MRI at the end of the month and going to take things from there. Ah, the next chapter begins, I guess its the fear of the unknown that frightens me the most.
Jake
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Wow! Well, it's great to hear from you, Jake! And that's tremendous news about 3-weeks later going back to work part-time. Don't forget to take time out to rest. Remember, you've had brain surgery! I wish you all the best in your continued recovery! The unknown is always the worst part. But at least the majority of the tumor is gone and you can breathe a lost easier. Of course, you've now set the benchmark for recovery that everyone else has to try to meet. After Josh is through surgery today, we'll have to tell him that we expect him to be back to work in 2 weeks!
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Larry - no, no one told me it would grow in "leaps and bounds" but I'm feeling lucky enough to be the first patient that would happen to!! :) ÂÂ
Well, I wish I were Josh right now... he's done with surgery. I still have 40 hours of anticipation!! Hope all is well in Vegas.
And on taking the tumor home with me... yeah it's pretty gross, but I'm not afraid of catching any diseases from myself (ha-ha). They usually throw it in some formalin, which is carcinogenic, so unless they sent it "officially" to the pathologists I work with, I probably won't be seeing it. :( ÂÂ
I probably won't be getting back here til after my surgery... keep your fingers crossed for me, and thanks for the support :D
Shawna
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Good Luck, and we'll be thinking of you. Drop us a note when your feeling up for it!
Jake
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Yeah, I wanted to take the tumor home too and made a half hearted comment to that respect to my neurosugeon. Needless to say, I didn't get a humerous response. The way I figure, all that insurance money I'm sorta paying for, I should get a soveneir other than a deaf ear! Maybe a bronze scalpal above my desk?!
On another note, I started work today on monday. I went into the office from 9-12, it was great to be back. Its amazing to think that three weeks ago this minute, I was 12 1/2 hours into surgery and had several hours to go. Work has been going well, but like my usual self, I'm probably triing to undertake too much at once. I;m 28, and just really want my career to take off in the right direction, it's hard to manage how I'm going to change careers, do a good job at my current one, and recover from surgery. You know what I mean? So I'm stressing out, even now I'm writing this after taking a break filling out an application for a very cool job. So today I worked from 7:30-12:00, got some lunch, came home and slept till 3:00 and have been working on my application since. (its not almost 7:00pm) I guess I just want to move on, immerse myself and hope for better things. Not too mention I don't want to run the clock out on my vacation time. Working for the government can be a real pain when it comes to sick leave.
Otherwise, I'm feeling great! My night vision and balance in the dark is a little weird. Anyone else ever have that problem? I'm just a little tired otherwise.
ok, I'm done ranting for the night, I need to finish this job application.
Everyone whose having surgery today and in the coming few days, good luck, my thoughts are with you. It's scary, but it will be ok.
Jake
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Hi Jake,
I also had my surgery at Mass General back in Feb. 2005. Drs. Barker and Poe were my team and I was very pleased with them as well as the outcome. My tumor was approx. 3.2 cm and facial nerve preservation was for me very important- I had already lost the hearing in that ear from surgery done in 1996, my AN was a reccurrence. A portion of the tumor that had adhered itself to the facial nerve was left and I followed up with FSR at Mass General. Dr Loeffler was my Dr. for that. In December I have my first MRI since treatment and I am hoping that the tumor has remained unchanged. I thought the hospital staff at MGH was exceptional. It is great to hear that you are back at work already! Keep it up-
Jane
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hey jake...i was just barely driving after 3 weeks! please don't overdue it, ok?
i still have trouble w/ night vision and balance in darkness. i did a bike ride this summer on the Hiawatha Trail in Idaho. it's on an old train track and you go through like 11 tunnels and over 6 tressels or something. the tunnels were complete and total darkness....the first one is 2 miles long...the darkest dark i'd ever been in. i had a crappy head light and fell twice and was scared out of my wits! i had no idea what was up or down, left or right.
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I remember the week before my surgery. I made sure the kids had enough lunch money for school for 2weeks. Wash was finished . My son had a ride to ball practice every nite, suppers were made ahead and froze. All my unfinished business was tended to, and the house was cleaned to perfection. thecakes
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I,m shure you have done your research.It is scarry reading the post ops. I dont know if I could go through with it. Im a coward and electing for proton radiation. It may prove over time to be a mistake ,taking the easy way out.hope not.Best of luck to you. keep everyone informed. Ken
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Ken,
Don't be hard on yourself. I a the biggest Chicken Woman out there and I know I am not alone. Surgery scared me so bad I cannot even tell you how bad. I read all of the posts and know not all are a cake walk. I opted for CK and feel very comfortable with my decision. Even surgery is not a 100% sure thing. Be confident in your decision. My neuosurgeon thinks surgery was be reserved for only large tumors in the near future. She does less and less of them.
Good luck with your treatment.
Sandy
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Ken: I don't know about you being a coward, I see it rather that you just doing what you feel more comfortable with....I was not comfortable with a proton beam being shot at my head to treat my regrowth and instead preferred to stick with what I know and have my head cracked the second time! You have just made the right choice for you!
Kathleen
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hi guys, i'm kat from Australia G;day from down under :)
I'm 28 and have an AN 2cm's on the left side.
I would have loved to gone with the radiotherapy, 'cept for the tumor pushing on my brain stem, Bummer! a year ago i could have avoided surgery, lol.
I'm going in in 6 weeks, and i'm nervous as hell. I've read all the post-op symptoms, and i'm hoping i won't be too bad, i've no hearing loss, a little tennitus, and a little vertigo, no facial paralysis, but the fear of the unknown is ever present! lol
I'm so glad to hear that you are recovering so well guys! It's inspirational!
i'm an optimist, i believe it will help me a lot :)
To be quite honest, i'm more worried about my hubby and 3 little boys coping without me for weeks, possible months, they are all very dependant on me, and i hate to leave them alone. It's amazing how perceptive they are to my emotions, they know something's up...It breaks my heart that they are going to ahve to see my head, i may have to invest in a beanie, :D
well take care, i'll try and come on again in a few days :)
It's really nice to have somewhere to vent... really nice :)
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Wecome aboard Kat from Down Unda!
This is a good place to be for lots of reasons--good information, reassurance, not to mention lots of laughs! Check out the "good morning" thread if you want a really good one.
Feel free to vent all you want--we are here to help.
We are Your new "Cyber-family"!!!
Captain Deb
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Hi kat,
there are a few of us from down under. Where are you having your surgery (city etc)
Larry
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Hi Kat,
Every situation is different, you must be prepared for complications, but hope for the best! In my case, I came through surgery with flying colors. I had my AN removed in November (so long ago now) and I'm back to working overtime and tumbling on the floor with my son, who is now 22 months. It's a lot like childbirth, you forget the details and the "discomfort" and only remember the good parts. My tumor was about 1.5 cm, hadn't reached the brain yet, and I opted for middle fossa approach surgery. I am so thrilled with my results, that I wouldn't hesitate to recommend it to someone else in my situation. I no longer have dizziness or vertigo (yeah!) and in fact I don't suffer from motion sickness as bad as before. As my doctor said, no equilibrium can sometimes be better than bad equilibrium. I still have tinnitus and some loss of hearing, and I'm a little wobbly at times, but otherwise I feel great.
Surgery is a huge undertaking- if you keep a positive attitude, have great doctors and great family and friends to help you through, you will be surprised at how quick you can recover. Just prep everyone for your "downtime" and don't plan too much for yourself afterward. Sometimes a stroll around the house is plenty for the first couple of weeks. Unfamiliar places made me feel a little more "unsteady" on my feet than home. There's something to be said for familiarity.
Anyway...I am so happy with my decision to have had surgery - I no longer have that "thing" in my head to worry about (so much). I go back next fall for my follow up MRI, and just hope everything is clean and clear!! Good luck to you!
Shawna :)
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Shawna thanks for sharing such a postivie experience.. ;D We need more of that around here to give us hope there is life after AN...
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Thankyou cant'n Deb :D
Larry i'm having my surgery at St.Vincents in Melbourne on Apr. 26th YIKES!
I'm so glad you had a speedy recovery shawna :) if i do as well i'll be over the moon!
I'm going in for another app. with my specialist this week, I really need to know why i have a 90%chance of losing my hearing. I've seen some conferences from over in America that have a 50% chance of saving hearing in those that have good hearing. Ah well, either way it's gotta come out! ;D
I'll let you know how i go :)
take care
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Hi Kat from Australia,
I was just reading your initial post and thought I would ask how many doctors you asked about doing radiosurgery and if they were ones who are actually doing it? If you just asked a surgeon and got that response then I would be concerned with the accuracy of the answer you got. If you also asked a doc who does radiosurgery and got that answer then obviously there is something in the MRI that dictates it's not the right course of action. The typical rule of thumb for treatment by radiosurgery is being less than 3 cm. Mine is the same size as yours at 2 cm which is well within that treatable range. Virtually all AN's start within the IAC and that isn't that long of a structure to create much variance between one 2 cm and another or a 3 cm vs another and so on. Mine was starting to indent on the cerebellum but was certainly not threatening the brain stem and I doubt that many of that size do. You certainly may still feel that surgery is still the best course of action, but I would encourage you to talk to a radiosurgeon to make sure you really don't have a choice.
Best of luck
Mark
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Kat,
I'm sure you have researched your decision and once made, the rule of thumb is to "just get on with it".
I was born and bred in Melbourne but have been living in Sydney for the last 7 years.
Just note that this forum is a great support for you when you need it
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Finally had my app. with the surgeon, yay. I was surprised to get very simple, thorough answers :D
Mark I have only seen 2 Specialists, both are surgeons. Most of the info i had recieved was off here, and most everything i read was confirmed by the specialist. My tumor is apparently not 2 cm, but 2.5 cm's, which isn't a lot, but surgery wise it's a big change. The mri shows that the centre of the tumor is filled with fluid, suggesting a growth spurt, but the most important thing, Doc said the radio therapy would not be so effective on the fluid part, beause it's not a solid mass. Pretty much what i had read also, feeling much more relaxed about the whole thing now :)
The only bummer is the size of the tumor means no Middle fossa, but retro sigmoid, less chance of saving my hearing, ah well, cest la vie.
Only 1 month till surgery go already!
take care guys
Kat
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Kat,
Certainly I'm not a doctor and wouldn't presume that a radiosurgeon would give you a different answer without seeing the MRI scans. However, I'll still standby my previous suggestion that relying on someone who just does surgery to judge what a treatment option they aren't involved with can or can not do has some risks. An AN with fliud in it such as you are describing is typically referred to as a cystic AN. The issue of radiosurgery effectiveness on such AN's can be found in both the ANA archives and over on the CK support board. At the end of this post I will copy a string from last November where another patient asked that question.
It is paramount that each of us go with what our heart says is best for us and it sounds like like you reached that point with choosing surgery. I certainly am not questioning that but did want to clarify what I would consider erroneous information from your surgeon on a cystic AN
In terms of the surgical approach, for my 2 cm AN I was given about a 20% chance of saving any usable hearing with the retro. That % goes down as the size of the AN goes up , so I would guess that a 2.5 is even lower. From having read this board for several years as well as several studies, there is a fairly common perspective that retro creates more post surgery issues such as Headaches and does not provide the surgeon with as good a view of the facial nerve as the translab. I am curious as to what % chance your surgeon gave you for hearing preservation. If it matches up with my stats and is very low, the question to ask is whether he feels there is any lower risk to the facial nerve and potential for post complications doing the translab instead. There are a ton of folks here who have done one or the other and can voice their pros and cons to you, but that would be a question I would ask.
Anyway, Best wishes to you for a great outcome
Mark
Here are the Cystic AN posts
Patient
I was wondering if one of the doctors could give a brief description of what makes an acoustic neuroma "Cystic" and what complications that creates. Specifically, if a patient has a cystic AN are there any reasons that CK or radiosurgery in general is not an option for them. There seems to be a theme from patients on the ANA support board that some doctors are telling them that radiosurgery is not an option for a cystic AN
Thanks for your thoughts
Dr. Rosenberg
Cystic" merely describes the presence of a significant fluid collection (or cyst) within the tumor. While very descriptive radiologically, we don't really use this to determine much. In fact, I just saw a 96 month follow-up from Gamma Knife of a large cystic AN that has shrunk to almost nothing and continues to shrink with each follow-up study. I would not say that being cystic, in and of itself, precludes CK or radiosurgery in general.
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William S. Rosenberg, MD
Medical Director, Menorah Medical Center CyberKnife
Patient 2 in the string
Dr. Rosenberg
I recently had a 2nd MRI and my AN has grown from 1.0 cm to 1.3 cm in 6 months. My neruotologist suggested there was an urgent need to make a decision about treatment because the Tumor had a cyst in the center and he thinks that is why it is growing. The MRI report did not mention the cyst. He also said if I had Radiation treatment that I would never know if this was cancer.
I was scheduled to have Translab. and had to cancel. I have been researching radiosurgery for treatment for my AN. My Neurotologist said I should not have GK or CK for this because it is now cystic. Why has it become cystic and which method would be best to treat it? There has been some discussion on fractionated failures for AN also on some of the forums. Where could I get information on the long term outcomes of radiosurgery on ANs? Also does it make a difference where you have GK or CK? Everyone says you should go where they have done the most.
Dr. Medberry
Yoiiur neurotologist is simply giving you the usual arguments that they give everyone to convince them to have risky surgery. There are occasions when surgery is the best treatment for AN's, but not usually when they are 1.3 cm. I don't know why he says it is cystic since the radiology report does not mention that. Even if there is a low-density area, it could be treated with radiosurgery. We have seen this many times. YOu can be sure that this is not cancer.
THere are real arguments with validity on both sides regarding CK versus GK. Data are not as complete as we would like. The issue is whether fractionated treatment spares hearing. THere is information suggesting that it may, but a final answer is yet to come. At any rate, CK is at least as good, and avoids frame placement, and either treatment avoids the risks of surgery, which are not insignificant. I am overseas but will be back this weekend and if you e-mail me I can send you a presentation comparing various treatment methods.
I personally think you should change doctors since the neurotologist is misleading you. THere are many good neurotologists whho are honest with their patients and honestly tell them reasons why they think surgery is better, and I respect their opinions, although we disagree. I do not have the same respect for practitioners who try to scare people, and the argument that "you won't know if it is cancer" is about the worst abuse in that regard tht I have heard.
Dr. Rosenberg usually monitors this board and hopefully he will also respond, but I answered you because our system for notifying us when there are new messages has recently proved to be imperfect.
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Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
Dr RosenbergI could not agree with Dr. Medbery more. As above, the whole "cystic" issue isn't particularly relevant. There are reasons to consider surgery but that is not one of them. Moreover, sometimes radiologists call them "cystic" when it means that the tissue in the center has a different water content than that at the periphery - but it's not actually a cyst (fluid-filled).
I would stand by my previous answer. It sounds like getting another neurotologist is quite reasonable.
--------------------------------------------------------------------------------
William S. Rosenberg, MD
Medical Director, Menorah Medical Center CyberKnife
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My husband Jeff had AN surgery March 9th. He has amazed me with his recovery. He loved just coming home. He is a great guy and things are getting better each day. We have three young daughters that are his cheerleaders through this.
Go somewhere special the day before surgery. We went to the beach. Spend the days leading up to surgery with the ones you love. Prepare a list of your wishes while in the hospital and give them to someone who will advocate for you if needed. Let your feelings out to your loved ones. Have a support person with you at the hospital :). The first few days were foggy for my husband and I was glad to speak up or hunt down a nurse, resident etc. While at the hospital ask, ask, ask, this is not a time to be polite or passive. Set goals but know there may be setbacks. Praise yourself every step, every acomplishment. Seek out positive support from others.
Make sure your support person has a support person they can at least call, they will need it. Also eat somewhere really good, my husband lost 12 pounds while in the hospital. Take care of yourself, physically and mentally.
Judie
Hi Judie and welcome to you and Jeff. I highlighted the most important thing you could have shared with us, regardless if micro-surgery or radio-therapies are performed. Keeping your mind and body in positive spirits really is the key. Easier said than done... absolutely, but with the love and support of family/friends.. and those here on the ANA board are helping me prep for my treatments next week. I truly am a believer of the "glass being 1/2 full" and your words hold dear to me... Thanks for sharing and please tell Jeff we are cheering him on for speedy recovery!
Phyllis
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Hi Jake,
I've been browsing here and saw your posts and what made me reply is the comment about so surgeons take a break for lunch ..... and i actually wondered yeah, do they? I mean 8- 10-15 hr surgeries , one has to wonder if they break for a coffee and lunch......
Do they feed the patient during that time too?
Sorry if this is black humour, but sometimes the logistics of treating these Ans is mind boggling lol... ::)
be well,
windsong
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Well today's the day, i'm going in with a smile :) (and hopefully coming out with one ;D)
Strangely i'm really not so nervous, i have a lot of faith in my surgeons. Yay it's finally going to be over with, and i can start recovering. I'll try and come on again in a few weeks or so and let you konw how it went.
Take care guys :)
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Good luck!! Please let us know as soon as you can...or have someone sign on as you and let us know how you're doing!!!! My fingers are crossed for you!!! Please take care!!!!!
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Katmumof3 - Keeping you in our thoughts and prayers.
The day I went in for surgery, I was also very calm, and was so from the first moment I met my with my surgeons. Luv those guys!!!
Hugs to you and keep us posted
matti
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kat,
sending you LOTS of huggles and warm wishes and good thoughts! You are going to be fine and now, when you read this, you will be a "Postie" (post-treatment) and on the speedy road to recovery! Gawd Speed!
Phyllis
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Sending warm thoughts your way Kat!
My tumor was about the same size as yours and I was told retro which had a greater chance of preserving facial nerve and hearing.
Well hopefully you saw in a post I did I went from no hearing so a teeny tiny bit of hearing that had I of gone translab I would have lost completely...
Please post in as soon as you're able to let us know how things went!
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good morning peoples! I am now 10 days post-op, and doing great ;D
My surgeons did a fantastic job, and i was very very relieved to learn, that out of all those post op symptoms, i did not get one!
I lost my balance nerves (to be expected, hehe) The real shocker for me was my hearing test, 80% usable hearing!!!!!!!!! WOOHOO. Needless to say i am doing better than i ever hoped i would, and i've got a great support team looking after me :)
I'll try and come on again in a few days and let you know how i'm going. Take care guys HUGS
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Kat...that is so cool!!!!! Congratulations!!!!!!!! You sound great!!!!! Keep up the good work, it's inspiring to those of us awaiting surgery!
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Way to go Kat.
Laz
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;D ty ty, although i really can't take all the credit, my team of surgeons did all the work, hehe. They did a great job! yay for great surgeons. I'm still doing great here, apart from the imbalance and the big cut into my head, you'd never know i'd had major surgery, lol. How are you guys holding up?
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Yeah Kat..glad things went so well for you!
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OH, Kat! Terrific news! I'm doing the happy dance for you and can't wait for further updates!!! Welcome to the wonderful world of being a "Postie!" :)
YAY Kat!
Phyl
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hi guys! :) I'm 4 weeks post now and doing great! I'm getting stronger and more energetic every day. I have 2 of my 3 boys back at home now and am able to keep up with everything, woohoo! Hopefully another week and i can have my 15 month old back home, i miss him soo much! The balance is coming along very well, still can't turn around fast, but i'll get there, hehe. I even did some spring cleaning, it's amazing how much 'crap' you can accumulate over a year. ;D
Hope you guys are doing well, keep your chins up!
Kat
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Hi Kat! So good to hear!!!!!! I'm so glad that things are going well for you!!! So is time flying these 4 weeks, or has it gone slowly? I'm kinda wondering how I'll feel about time 4 weeks out. I don't remember, were they able to get all the tumor out?
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Thats great news Kat
hey, if ya want some more practice at cleaning, you can come over to my place. And i tell ya what, I won't charge you anything for the training! ;D
laz
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gennysmum time has gone by really slowly, every day is a new adventure, and they're pretty sure they got all of the tumor out, will have to wait till the 18 month follow up MRI to know for sure :) I can't wait 'till my head stops itching and i can sleep on that area again, hopefully won't be too long :)
Gees thanks larry, more housework, just what i need ::) hahaha. I'll make you a deal, i'll do your housework for you, and you can look after my 3 young very energetic boys.... seems like a good deal from this end, hehehe ;)
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Kat,
Now listen here ya cheeky young lass - I've had my turn at looking after youngens. Deal is off!!!!
Laz
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Hi, Jake:
How was your surgery? I am going to have it in early December 2006 and am in the process of getting my affairs in order. Do you have any side affects?
Like you, it was out of the blue ... the only thing i experienced was hearing loss and nothing else for the past five years .... now it is 3" cm and growing ...
I wish there is more of an educational process out there to get medical professionals and lay people to order MRIs instead of dismissing it as allergeris clogging the ear canal ...
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Hi joe94121:
The same thing happened to me. I was treated for fluid behind the eardrum. Thanks to my orthopedic surgeon suggesting I get to the bottom of the ear thing before hip surgery, my PCP referred me to a ENT ASAP. The ENT looked in my ear, said no fluid and he then gave me a hearing test. The results were bad so the MRI was ordered.ÂÂ
That was two years ago last March. I am deaf in the left but just fine.
I sent an email to a reporter at one of the local stations in the Mpls./St. Paul area asking if she would consider doing a news story on AN awareness. She said she was very interested but would have to run it by her peers etc.....and that she would get back to me in a few weeks. It really scares me knowing how many people are out there with small ANs and symptoms that are dismissed by their doctors. Hell, most PCP's don't even know about these tumors. Mine didn't.
Good luck to you Joe. If you have any questions you can email me anytime. Kathy
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Obita and Joe94121 - I'm in the same boat. I was treated for fluid in my ear/allergies for years!!!! I just changed my PCP and made sure my new one KNEW what an AN was and what all was involved with my treatment as I'm watching/waiting.
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You are in my prayers, babe!
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This is Linda in Texas. My husband, Larry, is scheduled for his surgery on November 6. Will be translab and they are going to stay away from the swallowing nerve. It is a large tumor and they are "going to cut the head and the tail off it". He has already had Gamma Knife which did not do anything positive for this tumor but make it sticky and possibly more difficult to remove. It is so good to get on here and read something positive from someone. The waiting is really getting to both of us. Thank you all. It is just so good to hear something positive from someone who has been through this ordeal. Keep us updated. We need to hear from you.
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hey bostonjake good luck with your surgery. I was going to post something about pre-surgery and then found your's. It sounded just like what I was going to post. One week from right now I will be at the hospital getting ready for the surgery. I am FREAKING out. I never have anxiety about anything, but I have it now in a bad way. Just like you I really don't have any symptoms. The only ones are loss of taste in my mouth and very little numbness on the right side of my face. The symptoms have actually gotten better since diagnosed. What about this cathater (sp?) you speak of? we have to get one? Anyway, I have to get ready for work (probably my last day). I'll talk to you guys later.