Author Topic: Another Newbie  (Read 8006 times)

alicia

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Another Newbie
« on: April 03, 2009, 09:13:05 pm »
Hi there.  I was diagnosed yesterday with AN - left side.  Saw a neurosurgeon today and was told my AN is large and really pushing into my brain.  This threw me for a loop because my symptoms have not been that severe.  His concern is my preserving my facial nerve.  Obivously, my hearing will be gone too, but I expected that.  50% chance of facial paralysis.  If this happens, is there any chance, over time, of recovering anything in my face?  I am still not completely sure this is really happening to me.  I took a nap today and when I woke up I thought it may all be a dream.   :'(
02/16/18 III to IV post GK Facial Paralysis
12/13/17 Gamma Knife
05/19/09 Translab Larger than expected - Drs used the word "tangerine"   House - Friedman and Schwartz
04/02/09 Diagnosed Left AN 3.2cm x 2.6cm x 2.7cm

sgerrard

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Re: Another Newbie
« Reply #1 on: April 03, 2009, 09:23:06 pm »
Hi Alicia,

Welcome to the forum. I'm pretty sure you would rather not be looking us up, but since you have an AN, I'm glad you did. Please feel that you are now one of us. Ask any questions you like, and share anything that is troubling you. There are lots of great people here who will give you information and support.

Sometimes ANs will grow surprisingly large before announcing their presence with symptoms. There have certainly been others in that boat. There is often a good chance of recovering facial nerve function over time, if you end up experiencing that. And even if not, they are getting better every year with procedures that can help.

We will want to know how big your AN is, which neurosurgeon you are seeing, what part of the country you are in, what your favorite color is, and other important stuff. And don't worry, you will make it through this fine. You can do it, and we can help. :)

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Kaybo

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Re: Another Newbie
« Reply #2 on: April 03, 2009, 09:25:58 pm »
Alicia~
Hello and welcome!  I was hitting the button to reply and ask all the questions, but Steve beat me to it!  Tell us a little more about yourself and all that, if you don't mind!  We are here for YOU and hope that we can help you along in this journey as much as possible.  Don't be a stranger or to ask questions - no question is too big or small!! ::)

K ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

alicia

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Re: Another Newbie
« Reply #3 on: April 04, 2009, 07:40:58 am »
I am in Omaha, Nebraska and have seen Dr. Doug Long.  I am waiting to meet the rest of his team - including Dr. Gary Moore from UNMC.  The surgery will be done at Methodist Hospital.  I do not have an exact measurement.  larger that 3.5cm is all I know.  My biggest fear was taken care of yesterday...chance of death :'(  So I quess I should start being thankful, but I am so sad.  I am scared of losing my face.

I am 39 and have 2 kids - 8 and 9 years old that are the center of my world.  I think I am dreading most what their experience will be.  Of course, I can not forget to mention my husband who is trying to be so brave and supportive. 

I think I am so scared because I am slowly realizing all the symptoms I may have that I have not noticed...full ear, some pain in ear, numbness in my face, and headache.  Although, I am sure all the crying is not helping my headache.

I am so glad you all are here and taking your time to chat.  I have not ventured to the whole facebook thing yet and people have told me how out of the loop I am  ::)

I guess you all are my new facebook...Thank you from the bottom of my heart. Alicia

Will let you know more early next week after meeting with the next doctor.  I am planning surgery in my head ASAP.  The ringing that just used to be there, is now screaming "TUMOR TUMOR TUMOR" all night long.
02/16/18 III to IV post GK Facial Paralysis
12/13/17 Gamma Knife
05/19/09 Translab Larger than expected - Drs used the word "tangerine"   House - Friedman and Schwartz
04/02/09 Diagnosed Left AN 3.2cm x 2.6cm x 2.7cm

leapyrtwins

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Re: Another Newbie
« Reply #4 on: April 04, 2009, 07:44:27 am »
Alicia -

sadly it's not just a dream, but happily, it's not a nightmare either.  The best news is there IS life after an AN.

Don't let the odds of facial paralysis - or any other odds for that matter - frighten you too much.  Odds are just that - odds.  Your doc says a 50% chance of facial paralysis, but that also means you have a 50% chance of not having facial paralysis.  And lots of times facial paralysis isn't permanent.  My best advice is just take things as they come.

We are all unique and we all have different AN journeys - so expect the best, but be prepared for the worst and just see what transpires. 

SSD (single-sided deafness) is something that people adapt to - and for all the rest of us, there are some very good options (TransEar and BAHA).  I chose the BAHA and am very happy with it.

As for symptoms, the strange thing about ANs is there seems to be no definite correlation between AN size and number or severity of symptoms.  Some small ANs bring big symptoms; some large ANs bring few. 

Jan

Oh, almost forgot, contact the ANA and ask for their informational literature - it's a very valuable resource (just like the forum) and you'll find it very helpful.

I don't do Facebook either - just not my thing.

Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Kaybo

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Re: Another Newbie
« Reply #5 on: April 04, 2009, 08:01:43 am »
Alicia~
I am 39 also and the mother of three.  I did not have children yet when I had surgery so I can't help you exactly with how they will react, but I have had many other surgeries since they have been around and also heard about others having AN surgery with kids - they are much more resilient than you think.  I would be more than happy to chat with you on the phone if you would like to PM me your number - I have unlinited long distance so I can call anytime!  Let me know!

K ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

leapyrtwins

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Re: Another Newbie
« Reply #6 on: April 04, 2009, 08:13:33 am »
Alicia -

My twins were 11 when I was diagnosed and had my surgery.

IMO the best thing to do is tell your children that you have something in your head that needs to come out and the one way to get it out is to have surgery.  Don't give too many details - unless they ask - you don't want to alarm them.  Reinforce the fact that you are not going to die and that you will be hospitalized for a few days.  Make sure you tell them that they will be able to see you in the hospital a day or two after your surgery and you won't look scary - no bruises, no blood, etc., just a large white bandage wrapped around your head.   Come to think of it, after not seeing you for a few days, they'll be so happy to see you they probably won't even notice the large white bandage  :)

The other important thing is to keep their daily routine as normal as possible and keep them involved with people who love and care for them and that they are familiar and comfortable with.  Employ the help of your friends, family, and neighbors to help with this.  The more consistent their routine is, the less they'll feel scared and stressed.  AN surgery is not something to take lightly - but you don't want to burden your children with the fact that it's major surgery. 

Chances are, they'll come through this with flying colors.  You will too.

If you haven't already, you should tell your surgeons about your kids.  My doctors - especially my neurotologist - were very in tune to the "priorities" in my life and it helped me a lot both pre and post op to realize that they understood my children, and the effect of my surgery on them, were a huge concern to me. 

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

EJTampa

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Re: Another Newbie
« Reply #7 on: April 04, 2009, 09:27:55 am »
Hi Alicia,
 
It sounds like your doctors are concerned that your facial nerve will be compromised.  There have been a few threads here recently about debulking the tumor with surgery, then treating the remnant with radiation.  That way, the surgeon doesn't have to disturb the facial nerve (or not as much), and you have a much lower chance of facial paralysis.  In fact, the latest issue of ANA notes has a medical report on page one called "Subtotal Tumor Removal Followed by Stereotactic Radiosurgery.  The article was written by Dr. Michael Link from the Mayo Clinic in Rochester, Minnesota.
 
I would at least discuss the option with the physicians you are seeing now, and maybe seek more opinions and see if you can get those odds tipped in your favor :).
 
Oh, and welcome to our little group.  We're here for you when you need us, and even when you don't :).
 
Ernie
-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

sgerrard

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Re: Another Newbie
« Reply #8 on: April 04, 2009, 10:30:45 am »
Hi Alicia,

Glad you posted again. Another newbie on the forum reported that "this is way better than facebook", so you have done the right thing in joining us.  8)

It is often recommended that you get a second opinion on your case, but it is certainly up to you. The Mayo Clinic that Ernie mentioned might be one option. The official ANA recommendation is to get treatment from a team with substantial experience in treating acoustic neuromas.

A couple of recent members had their husbands get on the forum as well, and it proved very helpful to them as they sat by watching their wives go through brain surgery. You might look up Scarlett and her husband Rich, and Anissa and her husband Chris. They are all doing fine now, by the way.

3.5 cm plus is a large tumor and nothing to sneeze at. But as Pooter once said, "50% of all statistics are made up out of thin air anyway." There is no point in worrying about facial nerve issues; they can't really tell until they start the surgery whether it will be affected by it or not. You will just have to wait and see, and meanwhile we will hope for the best.

I hope your next appointment goes well, and that you are able to settle down, get less scared, and be more comfortable with this whole thing. It is a big change for sure, but you, your husband, and your children will be together and remembering this adventure for many years to come.  ;)

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Cheryl R

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Re: Another Newbie
« Reply #9 on: April 04, 2009, 01:25:02 pm »
Hi Alicia,  You may have read my post to others about the Univ of Iowa which has a super neurologist who does ANs weekly. Dr Bruce Gantz.     I have had  4 surgeries  due to having bilateral ANs or NF2.     I know there is another NF2 from Omaha who goes there.                         One tumor I have had  was a facial neuroma and have had surgery for it.            We thought it might be ahead so was told if so and the dr could not save the nerve, he would do a nerve graft at the same time with a nerve from by my ear..                This was the case.         I was told it would be a good 8 mos before saw improvement of the facial paralysis.   It has improved well enough to have the face look ok at rest  but not complete movement.                       Any surgeon you see,you might ask about this and if they have experience with this type of procedure.              My recovery did feel like a regular translab surgery.   
Univ of Iowa is 2nd in the ratings of Ear,Nose and Throat which my surgeon is head of this dept,from US News and World Report.                                   Good luck to you and wish you well.                             Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Jim Scott

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Re: Another Newbie
« Reply #10 on: April 04, 2009, 04:04:29 pm »
Hello, Alicia ~

I'm sorry you have an acoustic neuroma diagnosis but glad that you sought information on the internet that led you this website and these forums. 

I wanted to let you know that many AN patients that undergo surgery have good outcomes.  It isn't all gloom-and-doom.  I know, because I'm one of them - and there are many more that frequent these forums.  Like you, I was diagnosed with a large AN that measured 4.5 cm on the MRI scan and was closer to 5 cm, once the surgeon got to it.  It was pushing - hard - on my brainstem at the time of my diagnosis and the neurosurgeon was alarmed.  I was extremely fatigued most of the time, which was a bad sign.  My surgery was scheduled for a week later, but actually took place 3 weeks later due to various factors I won't go into, now.  My symptoms started slow - my hearing in the AN-affected ear slowly diminished to nothing over a 5 year period - but other symptoms grew very pronounced within a 6-month period.  I lost over 30 pounds due to loss of taste and my balance was terrible.  I almost fell quite a few times, just walking down the stairs in our home.  When my now-worried wife finally persuaded me to see our doctor, he sent me for an MRI and my tumor was discovered, big as life.  I was 63 years old at the time and just recently retired.  Naturally, I was frightened.  When I discovered the tumor wasn't malignant and wouldn't kill me, I became annoyed that this thing was going to disrupt my life. 

I did the usual internet research and quickly realized that facial paralysis was a real concern with this surgery, so when I consulted with the neurosurgeon I eventually engaged to perform the surgery, I expressed my fears about facial nerve issues.  He, a surgeon with 30+ years od AN removals, presented me with a two-stage approach that took longer but was proven very effective in other AN patients and, best of all, spared the facial nerves.  He proposed that he would 'de-bulk' the tumor, basically hollow it out and cut off it's blood supply, leaving some intact.  This would likely kill it but then, after a 90 day 'healing period', I would undergo what turned out to be 26 FSR (fractionated stereotactic radiosurgery) 'treatments', which were 'mapped' by my neurosurgeon and a brilliant young radiation oncologist he teamed with.  The FSR sessions were performed on an outpatient basis, were each about 30 minutes long and accomplished over a 5-week period, Monday through Friday with weekends off.  They were uneventful and painless.  I suffered no ill effects and drove to and from the hospital, a 64-mile round trip.

The good news is that I emerged from the AN de-bulking surgery with no complications.  No facial nerve deficits or much of anything else.  I had a relatively quick recovery and today, almost 3 years later, I'm fine.  My last MRI showed definite tumor necrosis (cell death) and some shrinkage.  I'm almost looking forward to my next MRI, this summer.  I feel great, considering I'm now 66 and had major brain surgery.  We enjoyed a very busy 5-day stay at Disneyworld® last year.  I enjoyed all the rides, including Space Mountain and Test Track (for Disneyworld veterans).  My point is that, problematic as an acoustic neuroma is, it can be surmounted and your life return to normal, as mine has.  Oh, I have a few very minor deficits but nothing that really impacts my life, which is quite satisfying.   

I'm glad you've found us and trust that you'll stay connected here with folks that understand your situation because we've experienced the same thing.  We 'get it'.  We also want to help and support you in any way we can, so please let us.  You're among friends, now.  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

GARZAP

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Re: Another Newbie
« Reply #11 on: April 04, 2009, 05:18:13 pm »
Hi Alicia,

I am also new to the forum, and the world of acoustic neuromas.  I was first referred to another dr before going with House Ear Clinic.  The differences were this:

Surgery:  8 or more hous vs 4 hrs
Loss of hearing:  100% vs 40% chance
Loss of facial nerve: 25% vs  2-5%
Hospital stay: 6-7 days vs 4-5 days
Recovery time:  6-8 wks vs 4 wks

Of course nothing is guaranteed, and there are wonderful doctors and hospitals everywhere. Finding out how many of these types of surgeries your facility/doctor has done though is probably the most important thing....It's like there isn't much room for error!!

I'm having my surgery 4/14....watch for my results.  We'll all be praying for you.   
Peggy
Less than 2 cm L AN discovered 02/09 on MRI due to noticed hearing loss.  No other symptoms.  Surgery 4/14/09 Drs. Friedman, Swartz, and Stefan of House Ear Clinic, LA,CA....my heros.  Retro surgery, no loss of hearing or facial nerve or any complications so far (ten days post op)

leapyrtwins

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Re: Another Newbie
« Reply #12 on: April 04, 2009, 05:56:18 pm »
Hi Alicia,

I am also new to the forum, and the world of acoustic neuromas.  I was first referred to another dr before going with House Ear Clinic.  The differences were this:

Surgery:  8 or more hous vs 4 hrs
Loss of hearing:  100% vs 40% chance
Loss of facial nerve: 25% vs  2-5%
Hospital stay: 6-7 days vs 4-5 days
Recovery time:  6-8 wks vs 4 wks

Of course nothing is guaranteed, and there are wonderful doctors and hospitals everywhere. Finding out how many of these types of surgeries your facility/doctor has done though is probably the most important thing....It's like there isn't much room for error!!  

Okay, I'm confused.  Am I reading this right  ???  Are you actually saying that the doctor(s) at House told you that surgery there would be 4 hours vs 8 or more if you had it done some place else? and that you will have a better hearing and facial nerve outcome plus a shorter hospital stay and a faster recovery if you have your surgery at House?   :o

I hope I'm misinterpreting this because that is just not ethical.  And furthermore, if this was what you were told, I personally am outraged!   As you correctly state "nothing is guaranteed" and no doctor can tell you definitely that you will have less or more of a certain side-effect if you have your surgery performed by him/her. 

Please tell me I'm missing something here or that I'm just too tired to figure out what you said.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Kaybo

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Re: Another Newbie
« Reply #13 on: April 04, 2009, 06:19:22 pm »
Jan~
I was wondering if that is what that meant too...I didn't understand & thought that I read it wrong (I was reading quickly while trying to fix dinner).  NO one can guarantee an outcome - one Dr. may be more EXPERIENCED (ex: House) but certainly not able to GUARANTEE an outcome of such drastic differences...

Tell us we are reading this wrong...

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

EJTampa

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Re: Another Newbie
« Reply #14 on: April 04, 2009, 07:12:20 pm »
The way I read it, is that one column is from the first consult, and the second column is from the second.  In other words, one physician gave her one set of numbers, another the other set.  It didn't, to me anyway, seem like house was saying it would be x hours at one place but y hours here.
 
Ernie
-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

 


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