Hello from a Newbie

[Mtn Gal]

Greetings.  I have been searching this forum for the past week and it has been a great help to me.  Here's my story; I noticed some hearing loss in my right ear in the fall of 2001; finally sought help in Spring of 2002, diagnosed with AN of 7mm in the right ear (when they said brain tumor I just about lost it).  Referred to otolaryngologist and we chose the watch and wait method of treatment as my AN was small; have lost 80% or more of my hearing in rt ear, have some slight balance issues, but not much; have a lot of popping noises in my rt ear (I call them my rice krispies--snap, crackle, pop).  March 2006 had MRI that showed AN had grown to 13mm and the doc said it was time to do something about it.  He gave me a brief overview of things and scheduled me to see a neurosurgeon (Thursday, April 27).  He suggests surgery for me and after reading all the options, I think that is the best solution.  I don't like it, but I'm not comfortable with the gammaknife procedure; don't want my brain fried any more than it already is.  I am mid 40's, work at a university, have a daughter that's married, two sons at home, and a good husband.  I have a good support group of family, friends and coworkers, but at this point they have not studied this out like I have and they don't know much about it.  It seems as if they really don't want to talk about it very much, and I guess that's all I want to do right now cause that's all that's on my mind!!!  I have learned a lot from reading about each of you and I just wanted to say thanks for all the info.  The hardest decision I face right now is when to have the surgery.  First thought was to postpone it till later in the year when my husband was not so busy, but on the other hand we don't like having to worry about it that much longer too.  Guess I'll decide what's best for ME after our visit with the surgeon.  Please keep me in your thoughts and prayers.   Would like to know how you felt the first week or two after getting home from the hospital and what activities you were able to do (cook, laundry, pay bills,  mow yard, grocery shopping, etc.).  Sorry this was so long, but thanks again for listening.

[ppearl214]

Hi MtnGal and welcome. You are certainly in great company here and know (as I'm sure you have seen around here by now), we're all here to help.

Would love to hear how your appt goes tomorrow and what the neurosurgeon says. As you know, there are many forms of radio-surgery available for AN's at your size (mine is approx same size as well) and although I had Cyberknife approx 2-1/2 weeks ago, I feel far from zapped! Heck, the gang in my office has no  clue I had radio-surgery!

Anyway, regardless... here's sending you warm wishes and thoughts for your appt tomorrow...and regardless of what form of treatment you decide to pursue, welcome to our wonderful family. The food is good, drinks are better, jokes are bad but the huggles are well worth it!

Phyllis

[Gennysmom]

Hi there Mtn Gal!

Please feel free to talk to us here!  I've got a great support system too, but they don't want to know a whole lot about specifics...I'm trying to educate them on the post care stuff mostly.  I'm also bringing my mom and boyfriend into all the Dr. appointments with me, both for support for me and education for them.  I have my first appointment with my head surgeon this afternoon.  They both went to my appt last month with the specialist ENT.  I've printed out a few threads that I thought would be helpful to them as well.  

Although I haven't been cut yet, it's my understanding that everyone's outcome is different, so it's hard to say when you'll be up and running again.  I'm telling my care team the best case scenario, and the worst, and I'll probably be somewhere on the bell curve.  

[HeadCase2]

Mtn Gal,
  Sorry to hear about your AN, but welcome to this site.
  The suggstion to take someone along for your DR appointments is a good one.  Contemplating the idea a surgery is nerve racking.  So having someone there to remember to ask all the questions you want answered can help.  Writing down a list a guestions is also helpful.
  You'll find a lot of information and testimonials on this site.  Some of it is a little scary.  Just remember that many people have participated in the forum while researching AN treatment, or in active treatment, have been treated successfully, and now have moved on with their lives.
  Wishing the best for you.
Regards,
 Rob

[Pembo]

Welcome to our club. Definitely take someone to your appts with you. I remember being so overloaded with information and then comparing it to what my husband heard. As for when to have the surgery, no time is a good one but hopefully everything will be just fine and you'll be on the road to recovery very soon.

[DeniseSmith]

Hello Mtn,

I would not be so quick as to decide on surgery until you have weighed all your options.   I am not trying to be a downer.  I had surgery on a tumor that was quite large, and I swear if I had found out about my tumor while it was small, and knew what i know now i definitely would have opted for radiation.

I was diagnosed with AN on 4/5/05 and had translab surgery on 5/9/05, 34 days later.  I had been having symptoms for a few years, but I blamed them on other things, like being tired, stress on the job, using the computer too much, I could go on and on.  Anyway,
I spent one night in IT then a week at the hospital, then was admitted to a rehab hospital for another week, then released and went to rehab twice/wk for a few months. Immediately after my surgery,  I could not walk, my left side was totally uncoordinated. I had no control of my left arm and if I raised it, it would kind of flop around on it's own.  Seriously.

I was on a walker when i left the rehab hosp. Then progressed to a cane after some out patient therapy. Now I am able to walk without the cane.  However, have severe balance issues, and a soon as I get tired, I walk like a drunken sailor.  I had a CSF leak in June and was readmitted to the hospital for a second surgery to repair the leak. I spent five days on my back, with a lumbar drain, not any fun.  I am totally deaf in my left ear, have facial paralysis, and my left side, while I can now contol it, is still uncoordinated.  Everyday is a battle, and I like to think I am winning, but, it is a very very slow and difficult recovery from surgery. 

If I have learned anything on this site at all, it is to do all the research you can to make an informed decision.  Always take someone with you to an appointment.  They just might catch something you missed, because you are still stuck on the last statement the surgeon made. I hope that makes sense. 

Good luck at your appointment.

Sorry, this is long, and again, i hope I didn't depress you.  I just don't want someone else to go through what I am going through.

Denise

[Battyp]

Hi Mntgrl and welcome to our exclusive club.  I haven't read everyone else's comments but know from the names I saw I'll probably repeat some things!

Do take someone with you to your appts and take a notebook and take notes as you go along.  If the doctor isn't comfortable with this or rushes you..then I'd say move on!

Do request the brochures from this site is you have not done so they were very informative and helpful and gave a good list of questions to ask your doctor.

Schedule the surgery when you feel comfortable with it and depending on your outcome you'll need a good strong support network.  My theory is prepare for the worse and hope for the best. I was unable to do quite a bit and live alone (with a teenage son) so tried to have as much automatically drafted, in place etc..before surgery.  It's a very anxious, stressed time for you and it's easy to get overwhelmed!  I also know I'm the expection to the rule others had surgery after me and are back to work and moved on! 

If you don't feel comfortable with your surgeon seek another opinion.  Some doctors prefer one method to another and some you just don't have rapport with.  I went through 3 before I chose my surgeon.  Also, you can send copies of your mri's and reports to other facilities to get another opinion.  Not sure where you are or how good medical facilities are around you.  Most doctors typically see 30-50AN's in their entire practice..I wanted the guy who saw hundreds or thousands 

Know that anyone of us are here for you in my opinion no question is too silly or redundant.  If it's something you want to know and can't find and answer we'll be more than happy to share our thoughts and experience.  You can bet we'll be saying prayers and keeping tabs until you get this behind you!  We're one big supportive cyberfamily! 

[Mark]

Hi Mtn Gal,

I'll add my "welcome" to the AN club. I think Denise's response about fully researching both options is right on target and I would fully echo those sentiments. Most of us when we start down this path are experiencing our first major medical challenge and work on the premise that all doctors are equally knowledgeable of the options for our conditions. I do believe that most doctors , though not all, are sincerely interested in recommending the best solution that they can individually provide to a patient. If the Doc does both surgery and radiosurgery, generally the patient gets an unbiased explanation of the pros and cons. On the other hand, I haven't seen or heard about too many surgeons who suggest a patient look at radiosurgery or can even fully explain it. Since, we all tend to fall into the "doctor knows more than I do" mindset at the ourset, we tend to take what we're told as gospel. Given the internet and sites like this there is a wealth of information available to you and I would encourage you to educate yourself and challenge comments from any doctor.

There are a number of frequent posters here who really did some impressive research in coming to their personal decisions. Phyl, who responded to you earlier, is a great example of someone who really went to the best people of both options and "kicked the tires" of what she heard from Doctors. I think as long as each of us follows that process we can feel good about whatever choice we ultimately make. I'm not sure from your post if the "brain fying" comment relative to radiosurgery is your own perception or something a doc told you, but either way, it tells me that you really should explore that option more fully with someone who does that treatment. The ask the doctors message board on the CK support group web site would be a good place to start. it is at www.Cyberknifesupport.org . 30 plus years and hundred's of thousands of patients, you would have a hard time finding a lot of brain frying in the literature 

Good luck to you

Mark

[ppearl214]

Mark, humbled.. thank you!

MtnGal, here is a thread I started back in Feb of this year about my journey of my decision making progress to my decision. I tried to write it as open minded as I could, sharing with all here my discussions with neurosurgeons (Including Dr. Brackmann at House Clinic to my neurosurgeons here in Boston) to discussions of radio-surgery, etc. I tried to share my frustrations, concerns, how I didn't hold back questioning dr's on certain recommendations, etc. I was fortunate that all docs were open to my answering my queries... I know the thread is long but if you read from the beginning (as far as you can), it really does give insight into how to be a better "well-informed" patient, regardless of final decision choice.

We are our own best advocate. We must maintain vigilence in questioning things that docs want to do to us.  We must take control of our decisions regarding our healthcare and not let someone else choose for us.

I hope this thread helps.

http://anausa.org/forum/index.php?topic=847.0

Phyllis

[Battyp]

Trust me when I say this..Phyl is medically in the know and I'm sure left no stone unturned in her decision.  It's a tough decision no matter what path you take.  Some of us have the luxury (don't know if that's the right word) of taking their time getting multiple opinions and then there are those like me how took the fast track into a decision.  Either way you're tumor is still on the small side and you have options.  Being post surgical like Denise I'd look at all options because the surgical side can be a tough way to go!  I also know that there have been surgical patients that are back to their normal existence with very little problems.  You'll have to decide for you the best way for you.  Just know we're all here to share our experiences and support you which ever way you go!

[nita]

Hi, I thought I sent you a reply, but when I hit 'post' a message appeared that someone else had just-then posted and I might want to edit my post.  So I didn't (want to edit), hit post again, and system said I had posted twice.  But now my post isn't appearing.

Brief summary:  
I have similar family/tumor size/age/tx option as you.  Surgery was 18 months ago at House (Brackmann and Schwartz).

One week post:  sleeping 16-20 hrs daily; major loss of memory and judgment; dizzy.  No pain.

One month post:  we moved to another state.  Sheesh.  I could drive, but shouldn't have done, due to dizziness; still fatigued but napping less; fixing simple meals and helping with low-energy housemoving tasks.

Three months post:  dizziness resolved to the point it still is now.  Had enough energy to join fitness center and start working on endurance.

Today:  I estimate I have 50-60 percent of pre-surg. short-term memory ability, and 75 percent of prior physical fitness.  Still dizzy, worsens when tired, but it's tolerable.  I have zero doubt that I received the best treatment available.  Have some depression due to wakening realization that this level of deficits will probably be with me for life; but depression is treatable, so bottom line I'm comfortable that everything possible was done.  Reading (and occasionally contributing to) this website has been an enormous encouragement to me, since I AN is such a rare (1:100,000) bird.  Looking forward to going back home to Washington State to inquire about the Portland support group.

Feel free to write at any time.  Hang in.

[Battyp]

Nita where did you move to? 

Are you going back to washington state?  There's seems to be quite a few from that area on here!

[ppearl214]

Nita, sending you hugs to hang in there.. sounds like me.. you take things day by day...I think that is all any of us can do.

Batty, you are so right.. so many from WA State here... I think a road-trip there to meet the WA AN'ers is in order!

Phyl

[Gennysmom]

I vote for that!  Come visit me for surgery.  Looks like it's going to be 7/5/06.

[SKT]

Mtn Gal

You definitely have options as your tumour is on the smaller side.  I can only imagine how stressful it is having to make all the decisions. When I was first diagnosed I started wondering if I should put off surgery until after Xmas (was diagnosed November 20, 2003).  However my neurosurgeon wasn't prepared to take any risks and I was booked in for surgery wihtin 2 weeks of my seeing him.  I had no choice but surgery as my tumour was severely compressing the brain stem.  In a way, as awful as the thought of that was, I was almost relieved that the decision was taken out of my hands.So I really do sympathise with the tough decision you have to make. I did seek out 3 opinions and went to great lengths to discover as much as I possibly could within the 2 weeks I had in order to locate the most experienced and skilfull surgeons in the world.  I was prepared to go anywhere to get the best treatment and I was completely focussed on doing just that until surgery.
 I know it's up to you - but sometimes hearing what other people would do is what you want to hear in order to help you make your own decision.  If it were me, I love to procrastinate and put things off, but it would end up torturing me so I would not have a good time in the meantime anyway - so I'd force myself to have the surgery at the earliest opportunity.
Surgery with a skilful surgeon really can have wonderful results.  And generally, the smaller the tumour, the lower the risks. I had a fairly large tumour, and it was in a bad location.  I felt it imperative that I locate a surgeon with vast experience and excellent past results.  My outcome was excellent.
I was in hospital for 5 days.  One day in IC and the rest in the ward. First two days very wobbly,lots of nausea but everything improved dramatically in days 3 and 4.  Waking up from surgery isn't as scary as you think as drugs really do wonders.
First week home, just tired, sore back from bed rest, feeling bit weary of head because of stitches, but pain minimal. Slept about 10 hours a night. Felt  good during the day.  Personally, I was in a statge of euphoria and very grateful that I came out well. Of course there were periods of exhaustion so a couple of naps here and there.
By 3 weeks, able to go visiiting, go out for coffee.  I could do some light housework if i absolutley had to, but just didn't because my husband and my mum love me heaps and wouldn't let me.