Author Topic: New in town  (Read 12467 times)

Greengiant71

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New in town
« on: February 06, 2009, 03:01:16 am »
Hello everyone,

My name is Cliff, I was recently diagnosed with AN towards the beginning of the new year.  I have since then seen my doctor and we have talked the options to surgery (through the ear or behind it).  I must say i am in the service so I have military and civilian doctors I am dealing with here. I am scared &^*#less about this procedure and am not really sure what awaits me, I still have to speak with neurologist next week and from there we will make an appointment for surgery near the end of March.  I am wondering how serious of a procedure is this?  I am wondering if i will be able to at least complete my enlistment or not, due to this diagnosis I most likely will not be able to do a tour in Iraq so I have been told  :-\.   I am stationed in Hawaii yeah the paradise island as most would call it, unfortunately I have no family that will be able to come out to see me after surgery.  Since my diagnosis it has been wracking my brain every day really, not knowing whats going to happen after surgery.   I have been told I will be losing complete hearing in my left ear there is just no saving it.  How long is the rehab process? 
My options were really clear, option one : go in behind the ear remove part of the skull , move the cerebellum to the side and go for the tumor, or option two : drill straight into the ear to get to the tumor.  Yeah i was not happy to hear this  :o and I'm not really sure what to do here.  Any suggestions would be a blessing...


Cliff
PFC Green Cliff 2-25 AVN  DVN

Diagnosed:  Jan 2009 , Translab surgery 28 Apr 09.

kenneth_k

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Re: New in town
« Reply #1 on: February 06, 2009, 04:14:25 am »
Hi Cliff.

I'm also in the military. The Royal Danish Air Force to be exact. I know exactly what you are going through, and it isn't easy. I am about forward my medical file from surgery and 3 months follow up to the military doctor. They will then decide what kind of posts I'm allowed to fill.

The surgical approaches have pro's and con's. The Translabyrinth approach (throug the ear if you like) offers the best clear view of the tumor, thus the best chance of total removal while preserving the facial nerve. It will leave you 100% deaf on that side, because inner ear structures will be destroyed.

The other approach offers a chance to preserve hearing, however tumor size and location is a factor in this respect. They will have to push (gently) the brain to a side in order to remove the tumor, and the view is not as clear as with the translab.

Both procedures are basicly brain surgery, because they have to open the skull and manoeuvre in a very delicate area. In it self that is risky business, but the prognosis is really really good.

My advice to you would be, if the doctors are pretty sure, that you will loose your hearing, then choose the approach where the surgeon has the most experience and preference. Rehab process is different from person to person. It could be anything between 4 weeks and 3 months.

As for being a soldier and being single sided deaf. I think you can still be in the service, but not in high risk combat operations. You will loose stereo hearing, and it is a real mega downer not to know from where that AK-47 sound was comming from.

I wish you good luck making a decision.

Best regards, Kenneth

P.S. You don't mention the size of your tumor. Is it to big for radiation, and are you sure it is growing?

Tisha

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Re: New in town
« Reply #2 on: February 06, 2009, 04:33:16 am »
I'm sorry about all of this.  What is the size of your AN and is it touching the brainstem?

Tisha
1.7 x 1.0 x .9 cm (diagnosed Oct 2008)
1.8 x 1.2 x 1.1 cm  (July 2010-swelling)
1.5 x .9 x .9 cm  (Mar 2013 - 5 yr MRI)
Cyberknife at Stanford, week of 1/12/09 -  Drs. Chang and Soltys

Dan

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Re: New in town
« Reply #3 on: February 06, 2009, 09:08:29 am »
Cliff,

Welcome, but sorry you had to join.  Here  is a great place to ask questions and get answers.
 
I'm retired from the army and had my surgery done 16 months ago. Retrosigmoid (behind the ear) a small hole drilled about the size if a dime. I have insurance with the company that I work for in germany so don't have to worry about military redtape.  Had OP in german hosp. How big is your tumor?  Is it growing?  What symptoms do you have?  I ask all of this because there are other options than surgery depending on size.  There are people here that have been waiting and watching for years and have no growth.  There are also alot of people who had success with GK, CK, radiosurgery.

The surgery is a pretty big deal and you should look into who would do the surgery.  Don't alow just any Dr. to do the surgery it is brain surgery.  The recommended amount of surgeries is between 50-100 and it is best if they have done 50-100 per year for a few years. 

My doctor told me after the surgery I shouldn't lift any thing heavy for the first 3 months.  At the end of the 3rd month I went back to work and was lifting 50lb bags.  At 6 months after surgery I'm sure I could have passed a PT test and now for my age I could probably come close to maxing it.  I have 50% hearing loose now in AN ear and sometimes have trouble understanding someone on my left side at a loud party but I'm think I could still tell you in which direction the AK-47 is. ;D

There are still alot of Drs out there that don't know much about ANs, or how to best handle them.  My PCP (Dr 30 years) had never had a patient with an AN.  My first ENT  had also never had a patient with an AN (ENT 15 years), thats why I have a new ENT, she's had at least 3 others.  The other 3 she talked into having radiosurgery (all GK) all successful.

I understand your worries, believe me its hard.  Once you have made a good well informed decission though I think you will feel better.

Soak ups some rays for all of us less fortunate people.

Dan in Germany
US Army Retired, age 51,  residing and working in Germany.
Retrosigmoid 21 Sept 07 left side 1.76cm AN, Prof. Mann, Uniklinik Mainz Germany

Dana

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Re: New in town
« Reply #4 on: February 06, 2009, 09:58:38 am »
Hi,
It is very scary to find out you have a AN, even though it's benign.  I'm glad you found this group, as they/we are very supportive and have lots of knowledge and perspective. 

What I would ask is -- are you SURE you have to have surgery?  What is the size of your AN?  Based on the size of your AN there are several options besides surgery, and sometimes doctors immediately recommend surgery when you could instead have a 'one-shot' form of radiation, or even decide on a "wait and watch" option.  The decision also, of course, depends not only on the size, but the symptoms you're having (for instance, some people with very small ANs have severe balance/dizziness problems that have to be corrected sooner rather than later).

The VERY GENERAL size 'rule' is that up to 3 centimeters one can choose a radiation or wait-and-watch approach instead of surgery, so let us know what the size of yours is -- and be a powerful patient-self-advocate if it's smaller.   If you can, take some time to do research, on this board and elsewhere.  What are  your symptoms?

Ask any and all questions...there are many here who've been through the initial shock you're experiencing, and there are many who will chime in.

Take care,
Dana
1.5 cm AN diagnosed June 2007.   GammaKnife July 19, 2007 at Univ. of Washington/Harborview GK Center, Drs. Rockhill, Rostomily. 
After yearly MRIs for 5 years, it hadn't died. So I'm now leaning strongly toward surgery.

Greengiant71

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Re: New in town
« Reply #5 on: February 06, 2009, 09:59:22 am »
Oh nice Dan , surgery in Germany huh well I know for a fact they do pretty good work i lived there for 22 years and the doctor care there was outstanding.  The size of my tumor is that of a pea so the doctor tells me.  I do have the option to watch and wait or radiation treatment as well.  The tumor isn't far from the stem and its only a matter of time before it wold cause some serious affects to me  :-\, give it time and would cut off my breathing.   The surgery I was told will take all day and after that I would be in the hospital for 6 days. 


Cliff
PFC Green Cliff 2-25 AVN  DVN

Diagnosed:  Jan 2009 , Translab surgery 28 Apr 09.

Greengiant71

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Re: New in town
« Reply #6 on: February 06, 2009, 10:02:48 am »
Symptoms ..   hmm well i have hearing loss in the left ear but other than that I dont have any other really.   I get a ringing every now and then but that's about it, no real balance issues.  I would rather have the surgery due to the fact that its still there ans will have to be removed eventually sooner or later.
PFC Green Cliff 2-25 AVN  DVN

Diagnosed:  Jan 2009 , Translab surgery 28 Apr 09.

Jim Scott

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Re: New in town
« Reply #7 on: February 06, 2009, 10:18:43 am »
Hi, Cliff - and welcome.

I'm sorry you're one of the relatively few folks to be diagnosed with an acoustic neuroma each year but I'm pleased to see you searching for information.  I believe you'll find a lot of it, here.  In addition, we've all been where you are, today, and can certainly relate to your concerns.  You've been given an excellent overview of the situation from two military men - Dan and Kenneth - and I cannot add much to their inclusive comments.  AN removal surgery is definitely serious business and demands a skilled, experienced surgeon.  Recovery is sometimes slow and frankly, varies widely from patient to patient.  Some AN surgical patients are in the hospital for a few days, return home to recuperate and resume their normal activities within a few weeks.  Others take a bit longer and some have lingering problems that can affect their quality of life.  Something I always attempt to make clear to newly diagnosed AN patients is that, as much as I wish it weren't so, with acoustic neuroma removal surgery, there are no guarantees on the outcome.  The good news is that the tumor is almost always benign (not cancerous) and certainly treatable.  Size and location are the determining factors, but irradiation may be an option for you.  Radiation is, by it's nature, non-invasive but of course, not risk-free.  What is?   As a fit young man I would assume you'll experience a rapid post-op recovery.  I have no military experience to draw on but I have to doubt you'll be cleared for combat duty, however, you may well be able to remain in the military.  That is something you'll have to consider as you plan your future, post-surgery.  Although I believe the important points have been addressed I'm sure others will hasten to add any salient information in response to further questions that may arise on the thread.  Let me reiterate that, collectively and individually, we understand your emotions and can certainly empathize with you because we've all been where you are, today.  We're still here and most of us are doing just fine, even 'senior citizens' (ahem) who still greatly respect those who serve their country in the military.  I wish you all the best.

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.

sgerrard

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Re: New in town
« Reply #8 on: February 06, 2009, 10:27:04 am »
The size of my tumor is that of a pea so the doctor tells me.  I do have the option to watch and wait or radiation treatment as well. ....
Symptoms ..   hmm well i have hearing loss in the left ear but other than that I dont have any other really.   I get a ringing every now and then but that's about it, no real balance issues.  I would rather have the surgery due to the fact that its still there ans will have to be removed eventually sooner or later.

Pea sized and only some hearing loss is a good candidate for radiation treatment. For ANs radiation treatment uses sophisticated systems that deliver focused radiation to the AN. It is less invasive than surgery, with a shorter down time, and the AN does not usually require surgery later. You might even save some hearing. Given your situation,  I would give it another look see before deciding on surgery. In the end of course it is you that must be comfortable with your decision. Best wishes.

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.

lori67

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Re: New in town
« Reply #9 on: February 06, 2009, 10:36:25 am »
Hi Cliff and welcome!

First of all, how come you get a nice duty station like Hawaii, and my Navy husband gets Nashville???   ???

I would suggest you investigate all your options.  Sounds like you have a little time, so I'd take advantage of that.  A lot of folks have had great results from radiation, so that might be the way to go for you to be able to avoid jeopardizing your career.

I will tell you that dealing with the military insurance in my case was not as bad as I expected it to be.  I had to pay a catastophic co pay because there aren't many civilian docs here to take military insurance - probably has to do with the lack of military here, huh?  I would imagine that if you choose to have treatment in Hawaii, you'd have an easier time of it since the doctors there are familiar with dealing with Tricare.  Since you have no family there, I would think you could request to return to your homestate for treatment and recovery if your family is there.  Or have your family come out there - Hawaii sounds like a perfect place to recover from just about anything!

Anyway, bottom line - do your homework - from what I learned, military hospitals - in this country anyway -do not do a lot of these surgeries, so they may not be the ones you want messing with your head.   Like I mentioned earlier, I had a copay - $1000 - because my doctor was not in network.  Once the bills started coming in, I realized what a bargain $1000 is for brain surgery.

Good luck and keep us posted.
Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Greengiant71

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Re: New in town
« Reply #10 on: February 06, 2009, 12:14:38 pm »
I didn't really want to come to Hawaii, it was my last choice of duty station.  I'm well traveled and have seen most of the world, I wasn't aware that I could request going back home to the surgery (San Antonio).  Flying my sister out here would cost too much really..  and who is going to watch the kids then :-\.  Anyhow..  its been so much easier after coming here and getting the info from this site, so glad I got the brochure from the doc.   Yeah Tri care is funny and the way it works around the world including in the states. 
PFC Green Cliff 2-25 AVN  DVN

Diagnosed:  Jan 2009 , Translab surgery 28 Apr 09.

fbarbera

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Re: New in town
« Reply #11 on: February 06, 2009, 12:26:02 pm »
Hi Cliff,

I would recommend you take a step back and review once again all of the treatment options available to you.   It sounds like you haven't gotten a complete picture of the radiation alternatives and the various pros and cons of radiation and surgery.  I had a much larger tumor than yours and spent a good bit of time consulting with doctors and doing research.  I've written about that process in my website below (in my signature line).  Many people choose surgery but many people also choose Gamma Knife or Cyberknife for a pea-sized AN.  Radiation gives you a better shot at preserving your hearing and virtually eliminates the risk of facial nerve injury (which can result in facial palsy or paralysis).  The good thing about ANs is that they generally grow quite slowly, so have plenty of time to investigate your treatment options, speak with many doctors and former patients and get comfortable with a treatment decision.

Best regards,

Francesco


Pooter

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Re: New in town
« Reply #12 on: February 06, 2009, 12:49:19 pm »
I can't add to the wonderful advice you have gotten so far, but I wanted to welcome you to the forum.  I, too, have documented my "journey" on a website (address below) if you feel the need / want to read it.  I'm with others that it seems like you haven't been given the full array of options including radiation.  If that option is available to you (it wasn't for me), then you should explore that option fully and talk to a radiation oncologist familar with CK, GK, etc..

Radiation gives you, in my layman opinion, the best chance for a quicker less complicated recovery.  Don't get me wrong, you can "recover" to "normal" with sugery but it may just take longer.  But, it may not be as long as you think.  It really depends on many things, not the least of which is the experience of the surgeon and how well the patient recuperates after surgery.

Thank you for your service and welcome to the forum.

Regards,
Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

leapyrtwins

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Re: New in town
« Reply #13 on: February 07, 2009, 07:41:12 am »
Hi, Cliff and welcome.

Hawaii, huh?  Hey, listen if you need help post treatment, I could really use a vacation  ;)  :D

Okay, getting serious now . . .

I had the option of radiation or surgery and chose surgery (retrosigmoid - behind the ear).  But that was my personal choice - and everyone is different - so you need to decide what is right for you.  With an AN your size, as others have already pointed out, radiation would be an excellent choice.

Your comment about having to have surgical removal "eventually sooner or later" puzzles me.  If you chose radiation and your AN stopped growing, there is no reason it would have to be removed.  If you had regrowth, which does happen but not a whole lot, then you might have to have surgery - but typically it's not a requirement of radiation patients.

Jan

PS - thank for being in the military and protecting the freedom of people like me  :) 
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

Dan

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Re: New in town
« Reply #14 on: February 07, 2009, 11:18:41 am »
Cliff,

It sound like you have the the same feeling I had when I heard I had a tumor.  I really wanted it out of my head and not a dieing mass left from the radiation.  My one year MRI showed something 3mm large where the tumor was (it could be scar tissue or the tumor growing again) so I have been doing alot of thinking, if I have to do something again I will probably go with GK or CK.  I'm not sorry with the choice I made but I don't think I want to do it again.  As you said the Drs here are very good and health care also.  All total I have lived in germany 23 yrs.

LORI  NAVY- - NASHVILLE ???????

Dan in Germany 
US Army Retired, age 51,  residing and working in Germany.
Retrosigmoid 21 Sept 07 left side 1.76cm AN, Prof. Mann, Uniklinik Mainz Germany

 


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