ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: Pooter on April 12, 2008, 11:32:14 am
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Greetings everyone. I've spent the better part of the day today scouring through information in the forum. Some of it was enlightening, some was disheartening and some was scary as heck! I may have already answered my own questions inernally, but I'm going to post them anyhow.
Background: 2 days ago I was diagnosed with a 3cm AN on the right side. I already have pretty severe hearing loss and tinitus (sp?), but fortunately no other symptoms. I've already met with Dr. Vrabec (highly touted from some that I've seen), and meet with Dr. Trask on Tuesday. Surgery, at this point, appears to be the only option because of the size and location (getting dangerously close to the brain stem). I've also resigned myself to the fact that I will lose all hearing on that side as a reasult of the surgery. Small price to pay if they can get all of it out, I guess. I should find out next week after meeting with Dr. Trask when they're going to schedule the surgery.
Questions: I've read throughout the forum of people taking anywhere from a couple of weeks to 18+ months to recover to be able to return to a "normal" working life. The optimist in me wants to believe that given the size and location of the AN that my brain has already done some level of adjustment already over time and that balance and other issues will be lessoned because of that. On the other hand, I've seen others with seemigly similar situations that took much longer to be able to function normally (to drive to work, to walk without bumping into things or even without getting so nauseous that they throw up, etc..). I guess I'm wondering what I can realistically expect for post-op recovery time. The answer I've come up with myself, and someone please correct me if I'm wrong, is that it all depends. Everyone's body and AN is different so the recovery time is going to be different for everyone, so I cannot realistically gear myself up for a recovery time of X because it likely will be something totally different than that. I don't want to psyche myself into thinking it's going to be quick to set myself up for disappointment when it's longer than that. But, the prospect of it being a significant amount of time really bothers me. If it helps, I'm an IT Manager for a small-ish company, therefore there is a possibility of me being able to do some work from home in bed with a laptop, but I haven't seen anything about how likely that is and how soon post-op it would be possible to do that. Additionally, I'm curious about what the "gotchas" are for post-op? What do I need to prepare myself (and my 2 small children) for how life changes for me afterwards?
All of this has come to light very suddenly and is exteremely worrisome. I am encouraged by all of the posts of people having gone through similar situations and, while sometimes difficult and long recovery times, they do make it through somewhat normally. It's comforting to find a place where others have experienced the same emotional, physical and other issues that I'm now faced with. In short, it's nice to not feel alone with how scared I am.
I'm sorry if I haven't been precise with all the terminology. It's all still new to me. I guess I'll become somewhat of an expert on it as time goes on. ;)
I'll continue to scour the forum and guidance. I appreciate any responses in advance.
Regards,
Pooter... 8)
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Pooter~
Welcome to a fellow TEXAN!!!
Sorry that you have had to join us, but glad that you are here -- there are wonderful people here with LOTS of care and support! I had my surgery in Houston (12 years ago) at Methodist. We come there a LOT as my sweet hubby's family live there - maybe we can get together some time! You are right in deducting that every AN is different as is everyones' reaction to surgery. There is just absolutely no way to say that you will recover in a certain amount of time. I do think that there has been so many advances in medicine since I had my surgery that recoveries are much quicker these days. I also think that when you go in prepared, it makes it easier. We knew NOTHING (not even that I would sacrifice my hearing) b/c it was a kind of rush-rush thing. I had a fairly difficult time, but I came out on the other side and have a WONDERFUL life now!! I would LOVE to chat more with you - if you'd like, you can send me a PM and give me your phone number and I will call you. Also, I have a blog if you want to see what life is like for me AFTER surgery (it starts from the back - newest posts come up first)! The address is below!
Please let me know if I can be of any help!
K
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Unfortunately I have to say welcome to the group (or team). We have several things in common, I'm an IT manager, have two young children (6 and 8) and had my AN surgery in January 2007.
My AN was not the same size, it was 1cm X 1cm x 7mm. I had no complications and returned to work full-time during the first week of March (driving 70 miles a day) I was however doing "laptop work" from home from about day 14 on-wards.
Your assessment is correct in that we cannot predict the outcome of your surgery, what we can say is make the decision that you are comfortable with and stay positive. Also reach out to all on this board for their positive stories...we truly do have a collection of great individuals.
If you want please do not hesitate to contact me via a Private Message.
Joe-
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Pooter -
welcome to our little AN club. Sorry you have to be here, but there are worse things. It's normal to feel scared and overwhelmed when you are diagnosed, but you will get through this. And the good news, is that we will help you.
Like you say in your post, everyone is different and everyone's recovery is different. Some have lots of problems post op, some have a few. Most docs will tell you that recovery from surgery will take approximately 6 weeks. From the description of your job, IMO you could be working from home within a few weeks of your surgery if all goes well.
As far as the children go, I can't stress enough that you will need help during your recovery, especially if they are young. My two children were 11 when I had my surgery last year and I couldn't have gotten through everything without the help of my family. Post op you most likely will be very tired and it will be a little while before you can drive. Typically the hospital stay is 4 to 7 days. In addition, your balance will be affected for a period of time and possibly your eyesight. You will make improvements daily, but recovery takes a lot of patience.
I don't want to give you the impression that AN surgery is the most terrible thing in the world, but it is major surgery and it takes time to recover from it.
There a lot of scary stories on this forum, but there are also many inspiring stories and many success stories. Rest assured that there is usually a solution to all the problems that an AN can cause. There is a lot of support here and the people on this forum will be more than willing to help you through anything you may encounter.
If you do lose all your hearing in your AN ear, there are options. The BAHA or the TransEar are both excellent solutions to SSD (single-sided deafness). I just had BAHA surgery five weeks ago and I can't say enough about it.
Hang in there,
Jan
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Hi Pooter: So glad you found this site - I found it a few months after my surgery.....
Everyone's given such great advice. All I can add is: YOU ARE BIGGER THAN THE AN IS ! !
Try to keep a peaceful heart during this journey.
Always good thoughts, Nancy
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Welcome ! I too am in IT (Programmer) .. and yes I worked from home a couple weeks. Large tumor and was very slow in recovery ... everyone is a little different... the key is to just keep at it ... it does get better with time ... I left the hospital in a walker .. and today 2+ years later.. I'm out Kayaking every chance I get..
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Pooter,
Welcome to the forum. Yes, a diagnosis is a shock especially when a word like "tumor" is used.You are doing the right thing by going out and trying to find information before making a commitment to a treatment. As you may know, there is no *best* way to treat it. They all can have unanticipated
consequences--even waiting and watching. It ends up being an individual
decision.
After all my reading, I learned that the treatment choice depends on the
size of the tumor, its location, and your hearing level mostly. It took me
until September (and I was diagnosed in May2001 and my treatment was at
the end of November2001) to know what I really wanted to do and where to go.
I considered each treatment option seriously and oftentimes felt overwhelmed
with all of the information.
My right sided growth was 1.5 cm. After reflecting over my experience, I
want to *emphasize* one thing: the experience, expertise and passion of the
doctor you select for treatment means everything no matter which treatment.
Most agree that they need experience with more than 100 cases.
Through my reading, I also learned about potential side effects and about
the many excellent facilities throughout the country. One of the first
decisions I made was that this was unique enough of a condition that it
warranted going where the expertise was. I looked for patterns in the posts on the listserv related to
treatments and doctors. The listservs and guest books provide great info,
but it can also raise anxiety because each tumor is individual.
Then it dawned on me that I didn't know how listserv member's posts and the
side effects they were experiencing fit into the larger picture.How frequent
were side effects related to the various treatments? Could I generalize
from the qualitative data?
That caused me to put together a chart. I wanted to know
the data related to
hearing preservation, facial nerve preservation, in relationship to the
size of the tumor etc... It is another way to look at treatments.
This chart compared some of the various treatments using citations from
medical professionals, websites, or physician's e-mails. It is a laypersons
attempt to condense medical citations and information and that makes this
chart different from most. However, I am *not* a medical professional and no
decision should be made based on the chart. It was meant
to be a starting point for a conversation with your doctor. Please e-mail me if you'd like a copy.
The chart also includes some of the most common websites.. I also put myself
through some questions that helped me make my decision. They are included
under the heading "One Size does not Fit All" at the http://anworld.com/
Here is another link that you may find useful when you go to the doctor. I found it absolutely necessary to come in prepared with a list of questions to ask the doctor. Otherwise the doctors say what they want to say and are out of the room before you have a chance to digest what they have said and then to gather your thoughts enough to ask intelligent questions.The beauty of it is that you can print it out as many times as is necessary and there is a space for you to write notes.
http://anworld.com/questions/
Kindest Regards,
Kate
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Thanks to everyone for the kind posts. And, a special shout out to Boppie for the private messages!
Jan: Thanks for the advice on the kid(s) front. I definitely have that covered. My wife will be here, obviously, to help on that front. Likewise, I have my mom and sister in Austin who are already making plans to come and help if needed. And, I have had several friends tell me to give their numbers to my wife and to have her call them if help is needed. Some of them called her directly and offered their help. It's truly amazing the outpouring of offers from friends and family.
Kaybo: Thanks for the offer to talk. If I find myself in a position where that's needed, then I'll definitely let you know. Luckily, I have a very good support system that reaches not only in the Houston area (where I am) but also to Austin (friends and family) and all the way to Pittsburgh (family). As stated above, there has been an absolute outpouring of support from friends and family. It's almost to the point of being annoying with people calling me daily (or multiple times daily) to make sure that I don't need anything or just to offer their support. Of course, none of these people have ever gone through what I am, but they all have their own unique experiences to draw upon. Anyhow, if I feel the need to talk personally to someone who's "been there", I'll definitely keep ya in mind. :)
Joe: Fellow IT Manager, eh? Did you have issues with multitasking postop? I'm assuming you do similar things to what I do and multitasking is a requirement of what I do, and I've heard that multitasking is problematic for some period of time post-op. I mean, it's a daily thing for me to working on small programming project, talking on the phone solving someone's technical issue, responding to an email request for help, and trying to plan my next system upgrade all at the same time. How difficult is that going to be down the road?
JoeF: Very encouraging story. I'm not so much into kayaking, but I am involved with a YMCA program with my daughter where we go camping 6+ times a year. I'm really hoping that we can continue that program. It means so much to her (and to me) that we get to spend a lot of quality time together during those campouts. In fact, we may miss our last campout this "season" in 3 weeks depending on when the surgery is scheduled and I'm really not looking forward to telling her that we can't go. On the way home from the last one (last weekend), she asked me when we were going again. The good news, I guess, is that after this next one, we won't be scheduled to go again until September, so that gives me a goal for recovery time. ;)
Nancy: Thanks for the encouraging words. I'm trying to stay positive. At least I'm over my fear of dieing on the table, which was my first great fear. ;)
Kate: Thanks for the link. I looked through the site and found some good information.
Thanks again all. I'll be around scouring the forum trying to gleen as much information as possible before surgery.
Regards,
Brian (Pooter)
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Brian -
I camped with my daughter and her Girl Scout troop 3 weeks post op and didn't have any issues. But you can always wait until your last campout of this season is over to have your surgery. ANs are typically slow growing and in most cases you don't have to make an immediate treatment decision - unless of course you want to.
In addition to searching the posts on this forum for information, you might want to contact the ANA and ask them to send you some brochures. Or you can get more information under the "overview" section on the opening page of this website. There is also a "medical resources" section that lists doctors who have lots of experience in treating ANs.
Jan
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Pooter,
Welcome to Houston! So sorry you found us because of an AN, but welcome to the club. I've heard the doctors you chose are excellant.
I had trans lab for a 3.5 cm AN. I think that your age has a lot to do with the outcome, as does your attitude.
It has taken me longer than I expected to bounce back, but I am bouncing. I am keeping you in my thoughts and prayers.
Brenda
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Hi Brian and welcome. I see the gang is showing the support we all come to love on this site... and hoping all you are researching is helping. I'm just going to add my "welcome" with everyone else's and sending wishes for wellness to you.
Again, welcome.
Phyl
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Just to update everyone. I have an appointment with Dr. Trask (neurosurgeon) tomorrow. And, I found out today that my surgery has been scheduled for 5/8! So, the countdown begins.
More questions that have come up since I first posted that perhaps others can share their wisdom:
1) What sort of pain issues should I expect either that first week (or so) in the hospital? Is it bad enough that pain meds will be necessary?
2) Are headaches (severe ones) expected? Early on? How about later?
3) How much will I remember the stay in the hospital (4-7 days post-op)? Will I be so hopped up that I won't remember anything? Part of that question surrounds the possibility of my 2 small kids coming to visit me there. I don't want to freak them out (and I'd like to remember their visit). If I'm hopped up and acting "funny" then I'm not sure I want them to come up there.
4) What's really involved with the balance re-training? I believe I'll be having the translab, so I know that they'll be removing the parts that help control that. Is it a case where I just can't keep myself straight? Dizzyness? What's the feeling? Is it like being really drunk or something else? Typically, how long does that re-training take (or is that what the 4-6 weeks of recovery is for?) I'm trying to understand what I may be feeling or dealing with during this period.
5) Does anyone see any issue with waiting for almost 4 weeks for the surgery given the size (3cm)? I'm not really worried, but some of my family seems concerned that it's "so far away" given the break-neck speeds at which everything has been going so far.
I know, lots of questions. I'm an information freak so I'm just trying to wrap my brain around it (pardon the pun). ;)
Thanks again for all the information and well wishes so far.
Regards,
Brian
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Okay, a couple more questions I forgot about..
I'm basically blind without my glasses / contacts.. what kind of bandages are used after the surgery? Is my whole head going to be wrapped up or just a bandage at the incision site?
Am I going to be able to wear my glasses without much trouble? I'm assuming they won't let me put contacts in (my preferred method to see), but I hate not being able to see clearly so I at least want to wear my glasses. Is that going to present a problem in some way?
Once again, an information freak trying to get as much understanding of what may be coming...
Thanks again,
Brian
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Hi Brian,
I was a radiosurgery patient so I'll defer to those who have gone the surgery route to answer most of your questions but I'll try to help with a couple of them
1) I would assume pain meds will be part of the process for the first few days at least. Having a skull based procedure and spending at least one day in ICU, it would be hard to believe you wouldn't have those prescribed
2) very individual from what I've seen, but also very dependent on the surgical route. Much more common with a sub occipital approach than Mid fossa or translab
3) Can't help you with that one, other than a few moths ago I had a colonoscopy which was only 30 minutes under a sedative and I remember waking up and having very coherent discussions with my wife that I couldn't remember 6 hours later ( according to her). Compare that to being under general anesthesia for 4-8 hours and I would guess you will be out of sorts for some time, but again I'll defer to those who have walked that path before.
4) Translab involves removing the entire hearing mechanism including the balance nerve portion so your body will have to adapt to that. Balance in our brains is really a gyroscope of several parts, our vision, the balance nerves and other cues that affect the brain. For most of us the AN's grow slowly enough that even when the affected balance nerve function decreases the rest of the gyroscope functions adapt. Removing it all at once will cause more adjustment. but you will adapt to it.
5) Nope, AN's probably grow 2 mm a year on average, so odds are you've had a 3 cm almost 15 years. It won't increase in size of any consequence in 4 weeks, nothing to worry about in that regard.
Hopefully others will share their surgical experiences with you, but I'm sure you'll come through it just fine
Mark
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Brian,
I was trans lab. The bandage was a over the incision. I too wear glasses and can't see without them. I took an old pair and they were pretty stretched out to say the least. Some take the bow off on the incision side. I preferred med for the first couple of days was the morphine drip! (I have too many allergies to list, so the normal pain meds weren't available to me) I thought my head and face looked like David Beckmann soccer ball after the game. I had lots of visitors. Would rather not have had any. Most were sight seers!
Read the headache section of the forum. I am a headache sufferer. Not all are. I wasn't prior to surgery. I am almost three years out and my balance is the pitts. Others are doing fine with it. I have been to all kinds of PT and walk daily. I have other health issues, so I am saying that they are the cause. I remember my stay at the hospital very well. I wish I didn't. I do know that I would never be a patient in that hospital again. Others had great experiences.
I had a lousy attitude about the whole process and that is not the way to be. My attitude is much better these days and it shows.
My AN was 3.5cm. It was found in May and because the neuro surgeon couldn't get the team he wanted or insisted on , my surgery wasn't until July 28. (My surgery last eleven hours) I think the longer you wait the more your nerves take a beating, but remember AN's are normally slow in the growth department.
I'm not trying to scare you. I came through the ordeal and as I said my attitude was bad. You will do great and your kids will be fine with the new you!
Keeping you in my thoughts and prayers.
Brenda
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Pooter -
congratulations on your treatment decision and surgery date.
As far as post op recovery goes, everyone is different. Here is my personal experience, for what it's worth.
I didn't have pain post op, but I took a lot of meds for nausea - it just wouldn't stop! It was probably related to the anesthesia, my dizziness and balance issues, plus I had double-vision for a day or two after surgery.
I didn't have headaches - still don't - but others do.
I remember everything post op once I woke up in the ICU room - I don't remember waking up in recovery at all. My kids visited me the second day post op - they wanted to come the first day, but I wasn't ready for them. I thought I'd look "bad" to them, but with the exception of the huge, white, mastoid bandage wrapped around my head I looked normal. I'm sure it was a scary experience for them though since they'd never seen me ill, in a hospital, etc. I think my kids are older than yours, so you may want advice from someone with younger kids.
My balance issues could be compared to the "drunken walk" that many refer to on this forum - basically bobbing and weaving. But the body compensates for balance issues and does adjust over time. Walking helps. My doc also gave me balance "exercises" pre op that I continued post op and they helped a lot. I think after the first few weeks or so my balance had adjusted fairly well. I remember walking into the doc's office for my first post op appointment and I was doing great. I still have slight balance issues today, but nothing like they were post op.
IMO there should be no issues in waiting 4 weeks for surgery. Many wait longer than that while they are researching their treatment options. ANs are normally very slow growing - I am an exception to that - but I was just a "weird" case :D
I had retrosigmoid and had a mastoid bandage wrapped around my head for a few days post op; I assume they use the same or something similar for translab.
Hope some of this helps you,
Jan
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Brian, I have a teaching degree and plenty of background with kids in my past.
My grandsons age 4 were old enough to understand big boo-boos. They visited me in the hospital and seemed unimpressed with my bandage. I had put a scarf around most of it.
Kids are impressed with the "stuff", hospital snack bars, elevators, and beds that go up and down. Parents and adult friends are the ones who are most impressed with the head surgery itself. Some visitors are intimidated by the very idea of the opening in the skull. Kids pick up on the facial expressions of adults. I'd keep the worried watchers out of the room when my kids were there.
Kids just think, "Wow I see a big bandage". The fewer details they get, the better. I think children can handle the idea that you appear somewhat disabled in that bed and that you will need special consideration at home. Older kids might ask lots of questions that call for truthful but not lengthy answers.
Every child is different though. If you have one who is fearful of new things, I'd allow him or her to stay in the family area and you walk yourself there to see them. This would help the fearful child to see that you are up and about.
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Boppie -
you are so right about kids and boo-boos, bandages, etc.
I forgot to mention, Brian, that you won't be bruised or anything that might upset your children. Other than the big bandage, you'll look just like "dad".
Jan
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Brian,
As you can tell by reading, everyone has different results. My experience was fine. Except for the day in ICU, I remember everything and really didn't have any "loopy" behavior. I didn't need any pain meds but again everyone is different. I was walking laps on at the hospital for hours, as I'm not a very good at sitting still. I don't remember having any problems wearing glasses and after about a week I started wearing my contacts again, as it actually helped keep the moisture on the eye, which didn't blink very well for a while. I didn't have balance issues, just as many with larger tumors will tell, you because your body has gotten use to being off balance from the tumor.
It is surgery, so there are post-op issues but I found them to be very managable. I was touring the LaBrea Tar pits 6 days after surgery. I flew home to Montana less then 2 weeks after surgery and started back at work less then 4 weeks after surgery.
Wishing you well,
Mary
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Brian~
My AN surgery was so long ago that I don't remember much, but we were concerned the other day about how my girlies would take me coming home looking like a prize fighter from my T3 surgery. Mom had showed them the LAST picture on my blog (NOT the one w/ the bandage) and they seemed to be fine. They have all 3 since seen the SCARY pictures, but they didn't seem bothered. Just like Jan said, you won't have any bruising anyway!
K
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Brian, I took one side piece off and took a large safety pin to prop the glasses on the bandage side.
The big bandage comes off at the same time the belly tape comes off, before you come home (at any rate). Think of your bandage as a plump gauze beret hung on your surgery side and down to the ear lobe. That whole hat is wrapped and wrapped until it crisscrosses to the top of your head. The bandage is a whole lot of gauze and sterile cotton that protects a not so large area. Some refer to it as a half helmet.
Wear sneakers to the hospital as these are grippy enough to walk the halls with.
My 2cm tumor came out in 9 hours. It was a sticky one. Some tumors of the same size come out in 5-6 hours, very slippery tumors.
I had no nausea. My tongue was sore when I woke up. I didn't like eating at first because of it. I hallucinated briefly after the first few anti swelling injections (steroids) My husband said I recited my ABC's and mummbled. I have spoken with others who had similar responses.
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Thanks to everyone for the honest answers. I can handle a "drunk walk"... been down that block a few times before, if you know what I mean. ;) As I've stated before, most of my anxiety stems from the unknown of what recovery will really be like. I guess my original thought was spot on...everyone's different and there are a whole host of possible things but it all just really depends, but regardless of what it is I'll be able to make it through. Now, the steroids thing is a bit scary. I could be doing anything from reciting my ABC's and mumbling to breaking out into an American Idol solo to turning into the spawn of satan.. I've warned the dear wife and have given her the disclaimer that I cannot be held responsible for what I might do or say while in the hospital and under the influence of who knows what. How's that for covering my bases? ;)
As far as the kids go. My 3yr old will probably be more impressed with the moving bed and perhaps jumping off a chair or couch in the room than anything else. My 7yr old is bit more "street wise" and potentially more apt to be affected by things. She's a smart cookie though, and we've already planned on giving her enough information to understand that daddy has been through a pretty major event (he's not just being lazy). I think given that amount of information and being able to see that I'm ok will be enough to calm her. I was more worried about looking like a prize fighter, as someone mentioned, and it being more than she can handle. But, if that's not a factor, then I'll leave it there.
On a side note, I met with Dr. Trask (neurosurgeon) today and he was pretty cool, if not a bit on the "geeky" side. We had a good conversation and I'm full of confidence in him and Dr Vrabec to take care of me, which I find to be very important that I trust them. I've got pre-op testing on the way to being scheduled (sometime within the next week), and Pre-Op visit to the surgeon on 5/5. Then surgery on 5/8. I'm much more relaxed and confident now than I have been up til now thanks to all of you being patient with my quest for information.
23 days and counting... :D
Regards,
Brian
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Brian, You will be sent home with a prescription for pain killers. I took them for a few days and then tapered off with Tylenol Extra strenth. I didn't like the woosiness that came from the big pain killers. But for a few days you'll be glad to go back to sleep with them. Your doctor will answer questions you might have if you need to call him from home. Your ride home will be sitting up with a small pillow behind your neck. You will appreciate a pair of wrap around sun glasses.
Hey, maybe other newbies are reading this and are going to copy you. ;D
By the time you are a postie, everyone at your house will think you are an American idol! Don't worry, steroids are not truth serum. :D
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Brian,
I had a lot of bruising. I bruise easily, but like I said my head was swollen and I looked liked a well kicked soccer ball. I hope you are like Jan and some of the others. My grand kids weren't afraid, they just hoped I wouldn't stay looking like that!
Brenda
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Brian -
don't worry, not everyone sings! And you may or may not need pains meds. Steroids are also sometimes optional - I had one dose post op for a slight facial nerve problem, but that was it and the problem went away. Bottomline, as you've mentioned, is that everyone is different. My best advice is be prepared for just about anything, but take things as they come. Recovery takes time and will require patience - which was something that was hard for me.
It sounds like you have great confidence in your doctors and that's a very good thing. It will help you go into this relaxed and feeling at ease. Sometimes waiting for the surgery date is almost as hard as making the treatment decision.
Hang in there,
Jan