His name is Jean Claude

[Tracy Lynn]

I first would like to say that I'm so pleased to see that this site is here.

March 22nd, I went to my ENT to have  a hearing test as I've noticed significant hearing loss in my right ear in the past year and a half. I kept putting it off because historically, I had many middle-ear infections as a child. The ENT tested my hearing and told me I've lost 85%-90% of my hearing in my right ear, significant higher-tone loss.

I was going to Las Vegas with a group of friends on March 24th, so they managed to fit me in for my MRI on March 23rd. I left the hospital to get lunch, and I hadn't even ordered when the ENT office called me back in.

The ENT didn't pull any punches. I'm glad I had my aunt with me, as he just blurted out "So, you have a tumor".

We lost my grandfather in February due to mutliple forms of cancer. My aunt was his primary caregiver before he passed.
A few weeks ago I saw the Neurosurgeon and the Neuro-oticologist and the other doctors I can't remember.

My translabrythine surgery is scheduled for May 18th. Although I've told my family and close friends, it still seems unreal.

I am ecstatic to find a website that we can discuss such matters. Everything I've found so far as been so clinical.

The only way I've found that I can deal with the concept of having a tumor in my head is to name it Jean Claude. As stated below, I found it easier to refer to it as "Jean Claude" than as a tumor. He causes me headaches, its an unhealthy relationship, and he can't live without me. My surgeon has a sense of humor. I asked him if once the tumor is removed if he will shine a light into my head to see if my eyes glow like a jack'o'lantern. My friend called me morbid. I have convinced myself that this is my way of dealing with the anxiety.

[opp2]

Welcome Tracy Lynn...bon voyage Jean Claude.

Sorry you have an AN Tracy, but welcome to the site. There are lots of very good friends here, so you can feel free to discus..

[Jeanlea]

Welcome Tracy-Lynn,

It is quite a surprise when you first find out that you have a tumor in your head.  The good part is that having this kind of brain tumor is one of the best ones to have if you have to have one.  My tumor was smiliar in size to yours.  Now four and a half years later I'm doing very well.  I have some after-effects from the surgery, but still do everything I did before surgery.  Even found myself getting more physically active after surgery. 

Glad that you found this group.  It's a great place to share frustrations, questions, and anything else you may be feeling.

Again, welcome.

Jean

[CHD63]

Tracy Lynn .....

Just adding my welcome to this forum.  Glad you found us.  You will find here not only an abundance of information but much caring and empathetic support.

Be sure to send for the ANAUSA materials.  They will answer many, many questions in a very caring, positive way.

You have a wonderful sense of humor that will carry you far in the days ahead.  So glad you have a treatment decision and date ..... that is half of the most frustrating part of this whole thing.

Tell us more about where you are having your surgery, if you care to share that ..... and ask away!!

Best thoughts.  Clarice

[jaylogs]

Hey there, glad to see you found us!! I am SORRY you had to but this is good that you are here!! This is a great sounding board, so go ahead and ask tons of questions if you got them, vent, or just do lots of searching in the different areas on here!! As Jean said, this is one of the better kinds of tumors to have. I am sure you have found out by now these are mostly non-cancerous, and cannot spread into the brain. The main thing is to just take a deep breath and stay calm and just do your homework on this if you need to be better informed, try to get as many facts as possible. I know when I was at the hospital getting mine out, it was pretty obvious those who didn't know a thing about what they were heading into and those who did.  It seemed like the panic level was much higher in those who didn't know much about it.  I know you have scheduled your surgery already, for many that's the worse part...trying to figure what to do with that thing your head. I like the name for that...Never thought a tumor would be French though! LOL.  Take care and let us know how things are going as you progress!

Jay

[Tracy Lynn]

Thank you all

I was diagnosed in Omaha, Nebraska. Which from what I understand has about 4-5 cases a year. I have complete faith in my neurosurgeon and my neuro-otocologist or whatever you call him. He's the one that told me "women are always *****ing about how much hair they will lose" when I asked abouthow much he would shave during the Translab.

I decided then that he has a good sense of humor and that we were a good match for doctor/patient.

Its a bit unsettling, as I turned 30 this past year. I had the appointment with the radiologist. He was a bit of a... hmm... saleman, he first tried to sell me on the option of radiation. Then he realized how large Jean Claude was and I think it wasn't until he saw the MRI that he finally admitted that radiation wasn't going to serve me.


I have researched as much as I could through so many sites, but it wasn't until recently that I stumbled across this site. For so long I was trying to find someone, anyone who had been through this process before me. I knew that someone would know what I could expect

Bless you all for your advise and support. I felt so alone.

So many coworkers have casually mentioned "well, its not brain surgery". Really? its darn close!

I play softball, not well I daresay, but I try When I asked the neuroo-oticologist whether or not I could play until my surgery, he told me that it would be a great excuse if I dropped the ball "My tumor made me drop the ball".  I haven't used the excuse, but my first game was last week, and I had to be benched halfway through because I got really dizzy and had motion sickness, which was a first for me since the diagnosis.

The surgeons originally offered me May 11th. I turned it down with the thought that "I'm so not ready for this". I realize now that I will never be truly ready for this surgery. I realize that I may never be ready for it, but its past due.

This process has been especially difficult for my family as we just lost my grandpa in February due to cancer. Try as I might to explain to everyone that this is not cancer, they don't understand.

[Tracy Lynn]

Au Revoir Jean Claude. I've read in several places where patients are cathetarized (sp?) and the possibility of "lumbar drainage" to assist in the draining of some cerebral fluid to assist during surgery. I am quite worried about that. I'm also a bit concerned about the skiin/fat grafting from the abdomen. How much do they take?

I have also read about the possibility of facial palsy and the partial taste loss on the affect side of the tongue.

I am curious about how long people have been out of work or dependant on others. I am a very independant person and I do not relish the thought of relying on family for assistance.

I am a person who tries to fully prepare for everything I face. I tell myself that its my way of dealing with things, preparing myself for what I must do to heal, knowing what to expect.

Anything anyone could suggest is most helpful. I have not yet dealt with the fact that the surgeons say I will lose what little hearing I have in that ear. One baby step at a time.

Thank you all for any information you can provide.

[tenai98]

HI Tracy Lynn
And welcome to the forum.
I am just over a yr out of my translab. I can comfortably say I am 95% back to normal...The other five is having SSD, balance nerve on AN side dead and brain fatigue. I do have the occassional metallic/copper/blood taste.  Plus there are times when I walk like a drunken sailor and tend to clip on the right  I could have went back to work much earlier than what I did, but given my job (driving instructor), I took several more months off to make sure I was ready.  I have cut my hours back as I due tire easily...I need to be in bed by 10pm...I normally work 3-11pm...
Do not let anyone tell you it isnt brain surgery.  During the translab method, the brain is not touched but the dura (brain covering) is cut open and the brain is exposed. I think that is how it works...Someone will correct me if I dont have it right.
JO

[leapyrtwins]

Welcome, Tracy Lynn.

AN surgery IS brain surgery.

I don't want to alarm you, but your AN is considered large and you say your neurosurgeon and neurotologist have only removed 4-5 per year.  This is a very low number of surgeries and one of the top things the ANA recommends is that the doctors who treat your AN have LOTS of experiences.  This is crucial.

So I have to ask.  Did you consult with any other doctors?  There many not be too many in your area who treat ANs, but sometimes when having AN surgery patients have to travel outside of their area.

If you haven't already, you should contact the ANA for their informational brochures - you'll find them to be very educational and a wonderful resource.

Catheters during AN surgery are standard - since the surgeries tend to be very long.  You want to ask your doctors who insert yours after you are asleep, as the insertion can be painful for some.  Removal is usually painless, so that can be done when you are awake - usually a day or two post op.

Some docs insert a lumbar drain during surgery in case the patient develops a CSF leak post op; some docs don't insert one unless the patient actually develops a leak post op.  My doc is the latter group. 

The skin graft - like the hair shaving - isn't a big deal.  The docs only take as much as they need, which isn't a lot.

Jan 

[opp2]

The surgeons originally offered me May 11th. I turned it down with the thought that "I'm so not ready for this". I realize that I may never be ready for it, but its past due.

It's perfectly ok to say and admit you aren't ready. And it's ok  to cancel, though as has been said, your tumour is on the large size so you mustn't wait too long. I canceled surgery twice because I got cold feet. I'm probably never going to be ready for it, but I'm with you. It's past due, time to get on with it.

Hence the frustration. I spent the longest time not telling anyone about my tumour, partly I think because subconsciously, if I didn't talk about it, it wasn't true.

[Tracy Lynn]

Thanks Jo

Jan,

I didn't say that my surgeons only do 4-5 surgeries a year. I said that in the city of
Omaha 4-5 are diagnosed a year. Yes, I've had a second opinion, and a third. I agree that it would be foolish not to.

Opp2,

I found out the day before going to Las Vegas. I didn't want to tell anyone until after my trip. On my family's urging, I did tell one of my friends prior to the trip (because what if something happened?, etc).  Someone told me I sshould win big in Vegas because they said "God owes you". I said God doesn't owe me anything, but he could certainly shine some light.

At this point, I think the suspense of surgery is 10 times worse than the actual surgery and recovery could be. I'm anxious to have it over.

[leapyrtwins]

I didn't say that my surgeons only do 4-5 surgeries a year. I said that in the city of
Omaha 4-5 are diagnosed a year.

At this point, I think the suspense of surgery is 10 times worse than the actual surgery and recovery could be. I'm anxious to have it over.

Tracy -

guess I read that incorrectly.  Thanks for the clarification.  I feel better.

I actually found the treatment decision to be much more frustrating than the suspense of surgery.  My AN was medium, so I had the choice of radiation or surgery - and it was a very big dilemma.  Once I made my decision, I found I had a great sense of peace and couldn't wait for my surgery day.

Surgery wasn't pretty, but you sleep through it so that's a big plus     Recovery wasn't something I was fully prepared for - despite my doctor telling me how tough it would be, I totally underestimated it.  But it's something you can and will get through and as time goes on you'll actually forgot most of the tough times.  I know I have.

Jan

[Jim Scott]

Hi, Tracy - and a slightly belated welcome to the ANA website/discussion forums. 

Your shock at the AN diagnosis and the 'unreal' feeling as you prepare for surgery (including all the pre-op testing involved) are almost exactly what I experienced 4 years ago.  As a healthy older guy who shunned doctors and hospitals most of my life, receiving the AN diagnosis (via a 7 P.M. phone call from my doctor) was upsetting and began a few intense weeks of doctor and lab visits, calls to my medical insurer and a lot of reading about 'acoustic neuroma' on the internet.  Fortunately, like you, I discovered this website early on and it has remained a source of information and comfort to me, even though I experienced an excellent surgical outcome and successful (but uneventful) radiation treatment a few months later (in a planned sequence of treatments).  You're naming of the AN is inventive and has been done by a few other of our posters.  I think it's a very good way to deal with the situation.  As Clarice ('CHD63') stated, a sense of humor is a valuable aid to getting through this often stressful experience. 

To respond to your questions (as best I can):

When the doctor considers it necessary (due to a risk of CSF drainage) a shunt will be installed prior to surgery.

Facial palsy is a stated risk with AN surgery but the risk is relatively low and when facial paralysis occurs, it is often temporary.  I had no post-op facial paralysis - and I'm not an exception, but I do have a small (dime-size) 'numb' spot on one side of my tongue that never resolved.  However, my taste is normal (better than before the AN surgery) and this 'spot' has no real impact on my daily life.

The 'average' recovery time is usually stated as '6 weeks'.  However, that is a 'ball park' figure.  You should only be dependent on others for a week or two and back to work in six weeks, possibly less, depending on how you do post-op.  It's difficult to put a solid number on recovery time, as much as we would like to.  There are too many variables involved.  Figure six weeks and keep your schedule open to more, if necessary, especially at work.  I was driving again - with my doctors permission - barely 2 weeks post-surgery and although I was recently retired, I was able to resume most of my usual activities within four weeks of my hospital discharge. I live a relatively active life, am a Deacon in my church and generally have a full plate, as it were.  I trust you'll have a similar surgical outcome.  Your surgery date is only 3 weeks away and I believe the sooner you get this over with, the better.  That was my attitude and my surgery was within 3 weeks of my diagnosis, based on my neurosurgeon's urgency to 'get that thing out of there'.  I agreed - and we did.  I'm fine, now.  You will be too. 

Jim   

[Tracy Lynn]

Everyone has been so helpful. I have been reading the forum's past posts all weekend.

As I live alone, I will be staying with family for awhile. I am trying to plan ahead as much as possible. I've read the tips about goggles, tear-free shampoo, and drinking straws. I'm a planner, as much as I profess not to be.

I hate to post duplicate questions, but does anyone have any other tips for those first few weeks after surgery? My family is quite anxious to think ahead.

I could paint a picture of how my family plans ahead. When I had my wisdom teeth out a few years ago, my stepmother went and bought 10 packages of pudding snackpacks, slimfast shakes, mashed potatoes and mac'n' cheese.  She had detailed lists of when I took my meds. She's a very diligent caretaker. I think it's driving her crazy not knowing what to expect of the healing process.

It's weird what has crossed my mind in the past 2 weeks while prepping for surgery. I understand that post-op fatigue is expected. I'm not used to sitting idle, so to be honest, a bit of me is concerned that I may be bored.  I worry that if I get bored, I may dwell on negative thoughts.  I'love to read, and I don't think I will be able to do much reading for awhile. Tomorrow I am going to go to the local public library to see if they have an audiobooks section. I figured that if I checked out some classics, it wouldn't really matter whether or not I drifted off to sleep mid-story. I'm hoping the ability to get lost in an audiobook may help me keep my sanity.

The first two books that popped into my head struck me as ironic. Alice's Adventures in Wonderland, and The Wizard of Oz. It seems a bit apropos to listen to stories of girls who fall asleep and dream of bizarre things.

I'm very thankful for this forum, as it has helped me so much already. As the weeks and days are whittling away, its difficult to imagine.

[tenai98]

Tracy Lynn
My first week home, I just walked al little (the more you walk the better it becomes) and also slept alot. Then after first week, I just did want I could with a few naps in between.  It also depends on the recovery. I didnt suffer from any side effects like facial paralysis nor no problems with blinking nor any balance issues as my balance nerve died before surgery.  With the translab, the balance nerve is cut and if it wasnt dead beforehand, you may need physio...
JO