Newly diagnosed

[DetSgt224]

Hello all, I was recently diagnosed on May 1st, and just had my first visit with the surgeon.  My tumor is 3cm and apparently putting significant pressure on my brain stem.  Surgery is scheduled for June 7.  I admit this deal has me scared to death.  I am worried about my ability to go back to my normal life.  I have significant hearing loss in my left ear and no hope of salvaging any of it.  The doctor wants to do a translab...approach and I have confidence in him.  Can any of you tell me anything to help me get through the next month?  My wife and kids are scared too.  I appreciate any information. 

[Texas Gal]

Sweetie...God bless you!!!!  I have a large acoustic nerma against my brain stem.  Please, call this doctor and get a second opinion..Dr. Thomas Graham phone#903-595-2441.  I have a 10 year old little girl.  No matter how much you are upset or (excuse my language) PISSED OFF, at this thing in your head.  There is hope and a future.....for people like us...acoustic neuroma survivers.  But, sweetiei, do not involve the ones you love in this too much.  They cannot relate, nor need to.  If you need to talk Teacher2b@prodigy.net.  I received radiation a year ago, and Dr. Graham is brilliant.  You are in my prayers!!!  Karla

[Texas Gal]

P.S. By the way, sweetie I am deaf in my left ear, and I am numb in the left side of my face.Your life will not be the same as it was, but Try....try to find a positive from this hell.  I am going back to school, to receive my second degree, in teaching for  children with hearing impairment.  My hopes are with you sweetie....Karla

[msuscottie]

Hang in there man,

I was in a similar situation last year. I'm 29 years old and they found a 3.5cm AN pressing on my brainstem in late July and I had Surgery on October 7th. When it's pressing on the brainstem like that, they ususally like to use microsurgery rather than radiation because of the long term effects. I'm sure there are many succesful survivors who have used radiation, but I went with Surgery and they actually removed about 80% of my tumor and got all of the "life threatening stuff" taken care of. I may need another surgery if the other 20% shows any growth. Anyway, Most people are going to be positive and say "just get that thing out," but I think this group can be real with you and tell you that it is in fact a big deal. I can put your mind at ease a bit though by telling you that I felt nothing other than the needle for the IV going in my arm. After that, I woke up in ICU with no pain. The frustration on my part was the rehab portion. I lost a lot of my left side temporarily and I had to work hard just to be able to walk and type again. The balance thing can be an adjustment too if they have to sever your vestibular nerve. I also have dry eye which is annoying more than anything else. Recovery is probably the most difficult part, but recovery also means that you're getting better, so take it for what it is. I'm still in the recovery mode 6 months post-op, but I was actually able to cut the grass and shoot a basketball this week so I'm hoping by summer I'll be close to normal. It is a big deal and everyone around you will be very positive, which is great, but if you're like me, you didn't want to hear it. Just be strong and stubborn (especially in the hospital) and treat it like you vs. the tumor instead of you getting attacked by this tumor. I was actually talking to my head in the mirror prior to my surgery saying "you messed with the wrong dude you piece og sh*t." Sounds psycho, but it helped my nerves & attitude. I've got a full account of my whole ordeal if you (or anyone) would like to read. It's like 9 pages  =)  Just email me at sryan@villagegreen.com if you're interested. Good Luck!

[Texas Gal]

 Research all options...at first, all I wanted was the "damn" thing out of my head.  But, put the anger aside, and research all your  choises.  I been there and done that....Karla teacher2b@prtodigy.net

[Dave_S121]

Hello DetSgt:  Judging from your screen name I assume you're in LE.  I'm 51 years old and a detective for a suburban Chicago PD.  I found out on July 1st, 2004 I had a 2.2cm AN in my right ear.  Prior to that I had significant hearing loss in that ear.  On Oct. 20th, 2004 I had the tumor removed via translab.  At the time of my surgery I had a Bone Anchor Hearing Aid (BAHA) implant done.  I went back to work 1/2 time 4 1/2 weeks after my surgery and fulltime 6 weeks post surgery.  Less than 2 months post surgery my department had a double homicide and I was working 12-16 hours days 6 days a week assisting in that investigation.  I'm sure your wife and children don't want to hear that, but I mention it to let you know life returns to normal, as normal as police work can be, after AN surgery.  Even though I had hearing loss in my affected ear, the total loss has been an adjustment.  The BAHA has helped some, but I have also had high frequency loss in my now good ear.  I recenlty got a Canta7 hearing aid for my good ear and that has helped alot.  Overall I consider myself very lucky, I had wonderful, highly experienced doctors and a very supportive family and girlfriend.  I have been on "light duty" at work and start the process on Tuesday for a "fit for duty" evaulation.  (Light duty for me has been I'm assigned what every reports can be handled over the telephone.  If I need to interview or pick up a suspect a couple of my partners do that and bring them into the station for me.  It's been a hassle, but my partners have been supportive and understanding.)   I'm nervous about the process but am taking it one day at a time.  I writting this in the middle of breaks from a school my department is sending me to, so will make this short.  Feel free to contact me offlist and I would be very happy to answer any questions and concerns you may have.  I'm sure you have the same concerns, specially if your in LE.  My email address is:

dskaja@comcast.net

Good luck and let me know if I can be of any assistance.

Dave Skaja

[GM]

Although I am not a surgery pateint, I have read many posts where people who have lost most/all of their hearing to opt for surgery...translab...to have better outcomes with the facial nerve.  I would suggest that you become as educated as you can on your AN, and your chosen path of treatment.  This helps to relieve some stress knowing not only what procedure that you have selected...but also what is ahead of you.  It is not uncommon for AN patients to become very educated.  I am active duty military (you too by the Det Sgt name?), and actually asked questions out of my militarty ENT's knowledge, he told me he'd have to set me up with a consult with another type of doctor...believe that    Anyway, welcome and know that you are in our thoughts and prayers, we've all been where you are right now.  You'll feel better after a couple of days and will want to grab the reings of this and find a solution.  Don't feel pressured to make a decision if you are not in pain, headaches, vertigo, or any life threatening positions at this point.  Also, don't be afraid to ask the doctor questions...it's your AN, and your quality of life.

Gary

[Texas Gal]

It's uncommon to have very noticeble signs of an acoustic neuroma.  Mine was found as a"fluke".  I had some blurred vision  in my left eye...and ...CT Scan...MRI confirmed.  AN....Take Care...Karla

[DetSgt224]

You guys have all been fantastic.  I can't tell you how much hearing this has helped me.  I made a mistake in my original post.  I saw the neurosurgeon today and he clarified that they want to do retrosigmoid approach; through the back of my skull as opposed to right behind the ear.  I have no hearing to preserve so will be SSD.  I'm not crazy about that but I can't hear much out of my left ear anyway.  Fortunately I don't feel rushed by anyone, but I'll be honest, I want this damn thing out of my head right now!  It's going to be hard waiting for a month.  I've gone through the nightmare of thinking this thing is getting bigger the longer I wait, but I guess these things grow very slowly?  Dr. Von Doersten thinks I've probably had this thing for 10 years.  That's just incredible to me.  The good thing about that I guess is that there's not much chance of it being cancerous.  Thanks again for all the info, anything you folks can add is surely appreciated!

[GM]

I can DEFINITELY relate to you wanting the thing out...for me the approach was radiation.  I can deal with it's dead mass (scar tissue), as long as it doesn’t cause any more trouble     Knowledge is the key my friend...it makes you less afraid and sometimes puts your doctor on the spot with your questions.  I had a doctor tell me once that it was nice to have an informed patient.  I could see the change in his demeanor towards talking with me, it went from parent-child to peer-peer comunication....  less fluff and more info.

Gary

[cecile k]

I thought that the retrosigmoid approach is used to preserve hearing and the trans lab approach is used if no useful hearing is left. I had the suboccipital approach (which I assume is the same as the retrosigmoid) because I had 60% hearing left on the AN side. Lost all of my hearing anyway and was left with a huge headache problem for two + years. I did read after my surgery that the suboccipital approach tends to cause the most post op headaches.

I only write this, not to scare you, but so you can ask your neurosurgeon some questions. Although I had a tough recovery, I was left with no facial paralysis. Go with the BEST doctor you can find - so important to a good outcome.  All the best to you - the tough part is waiting for treatment!

Cecile
Surgery Nov 2001, Vancouver, BC
2cm left AN, suboccipital approach

[DetSgt224]

I think you're right Cecile, It must be translab that they are doing.  I have very little hearing in my left ear and both doctors have said they are not concerned with saving it.  They are going in through the back of my skull, so whichever one that is....

[Russ]

I think you're right Cecile, It must be translab that they are doing.  I have very little hearing in my left ear and both doctors have said they are not concerned with saving it.  They are going in through the back of my skull, so whichever one that is....

  Hi;
   That sounds like the sub-occiptital approach if it's the 'back of your skull', as you describe so. But; Then again; If there is no useful hearing to be retained, possibly translab is meant. There will be a hole the size of a quarter directly behind your ear lobe with translab.
  Possibly with the subocciptital, the vestibular nerve may be salavaged? Doubtfully in the translab.
  Best wishes to you, either way. You'll get through this!!
  Russ

[Karla]

I truly believe in the x-knife procedure, not gamma.  There is a difference, gamma leaves the tumor very hard, and much more diffuicult, if the tumor one day has to be taken out, due to new growth.  I have a large AN right up against my brain stem, and the x-knife was very successful.  I had a  strong dosage amount of radiation treatment a year ago.  I had a MRI a couple weeks ago, and my tumor has responded in a year, what my doctors were hoping for in three.  And this type of radiation does not cause hair loss as if radiation for cancer patients. Research...ask questions...Dr. Graham in Tyler Texas is wonderful 903-595-2441...Dr. Kolker deals with radiation...x-knike.  They work together on the treatment of AN's...Karla