Diagnosed with an AN for my 50th Birthday!

[LisaM]

Greetings AN world,

Just turned 50 and was diagnosed with a 1.4 x 1.8 x 1.7 (all cm I think) acoustic neuroma last week.  The initial panic has calmed a bit and I am starting to accept this reality.  My first symptom was  when I woke up one morning and couldn't hear out of my left ear. 

Questions: 

I've been to HEI (lucky to live in Los Angeles) and am seeing Dr. Slattery.  I did a search on him here and found quite a few positive entries.  Anyone have a recent experience with him?

It seems that Dr. Schwartz is the Neurosurgeon that works with most of the docs at HEI.  Doesn't the Neurosurgeon remove the tumor?  Anybody have anything to say about Schwartz?

Dr Slattery says that I will need the retosigmoid (sp?) surgery (tumor too big for radiation) Retosigmoid I believe has a 40% chance for hearing preservation .  Anyone have this surgery and maintain hearing?

I had a pituitary tumor that was diagnosed in the early 90s.  Took bromocriptine for that and it went away.  Anyone else have prolactinoma?

Any suggestions on what to do to prepare for surgery? 

Any suggestions on what to do to prepare for post-op? 

(BTW... I have a four year old daughter)

It seems that surgery is my only choice though I will continue to research this.  I am terrified of facial paralysis and balance issues, and of course want to preserve my hearing in my left ear which is still great except for a small bit of tinnitus.  I go in next week for a more thorough hearing and balance test.  So far the only symptom of the AN that I am aware of is the tinnitus and the temporary hearing loss. 

I am very grateful to have found this website.  I have been reading it compulsively for the last 3 days.!

C'est moi,
Lisa M

[leapyrtwins]

Hi Lisa and welcome to the Forum.  Sorry to hear about the AN.

I was diagnosed when I was 45 1/2 and had retrosigmoid.  I ended up losing my hearing - my AN was wrapped around my hearing nerve; something that isn't evident on an MRI but can be seen when the docs look inside your head.  When I lost my hearing on my AN side, I decided to get a BAHA and I've been extremely happy with it.

If you lose your hearing, you should check out both the BAHA and the TransEar.

My surgery was done here in Illinois with a surgical team - a neurotologist and a neurosurgeon - they took turns removing the tumor.  ANs aren't just cut out out, they are peeled away layer by layer which can be a long, tedious process; my surgery took 7 1/2 hours.

You are in very good hands at House.  They have a wonderful reputation and the doctors you mention are very qualified, and widely known.

If you haven't already, you should contact the ANA and ask for their informational brochures; they helped me alot.

Good luck,

Jan

[CHD63]

Hi Lisa M and welcome to this Forum of caring, supportive new friends ......

First of all, take a deep breath and do not be in a rush to decide on treatment.

HEI is well established as an excellent facility in the treatment of acoustic neuromas so you are in good hands.  Their specialty is surgical removal and as such, have had hundreds of success stories.  All of the docs there have excellent reputations.  Someone else may be able to tell you more about Dr. Slattery specifically.  (As a side note here:  I am scheduled for translab surgery with Dr. Friedman and Dr. Schwartz at HEI on May 11th so I can tell you more a month from now.  )  What was told to me is that they work in teams at HEI of one otolaryngologist and one neurosurgeon.  Each has specific responsibilities during the surgical removal.  My assumption is that these responsibilities may change with the type of approach being used.  The decision for the type of approach used is determined by many factors ..... size of AN, specific location it is growing, current hearing loss, and patient/doctor preference.

I am a little puzzled why Dr. Slattery said your tumor was too big for radiation.  Generally speaking tumors under 3 cm are potential candidates for radiation treatment.  Perhaps it is the specific location of your AN, but you might want to ask some questions.

This is my second go-around with surgery for AN removal.  My original AN was 2.6 cm and was surgically removed via retrosigmoid approach at Duke University.  Unfortunately I fell in that 5 to 9% of retrosigmoid surgeries that resulted in regrowth.  I had 80% of my hearing going in to that surgery, came out with 20% (but with 100% speech discrimination, meaning a hearing aid has boosted it successfully for one on one conversation).

If you have not already done so, send for the free ANA brochures.  They contain a wealth of information and much reassurance.  See:  http://www.anausa.org/index.php?option=com_aicontactsafe&view=message&layout=message&pf=4&Itemid=195

There are many other resources on the home page you might want to check, as well ..... questions for physicians, etc.

Best wishes in this fact-finding, decision-making phase.  Let us know how you are doing.

Clarice

[cindyj]

Hi, Lisa!  Welcome!  Had my AN removed at 49 by Friedman and Schwartz - Schwartz assists on almost all House AN surgeries as neurosurgeon.   Though you don't really see or hear from him as much as you do the other docs, he is great (in my opinion ).  All the staff at House and St. Vincent's are wonderful!  The anesthesiologist even visiited me post op!  I've had numerous surgeries in my time and NEVER seen an anesthesiologist after the surgery!

Plan to nap and walk, nap and walk, nap and walk as much as possible post op - everyone recovers differently, but most take about 4-6 weeks to get back to normal activities. 

Wish you the best - do let us know questions as you think of them - we'll help as best we can,

Cindy

[Sue]

Hi, right after my 60th birthday I was diagnosed, so yeah, it is a bummer birthday present.  Mine was similar in size, a bit bigger even, and I had gamma knife - 5 years ago this last April 18th.   I talk of my experience in my blog -link below- if you want to read it..or skim it over.  Whatever you decide, I wish you well and best of luck in your recovery and healing.   

Sue in Vancouver USA

[Eva]

Hi Lisa, I was also diagnosed with the tumor shortly after my 50th birthday (it was a happy birthday because I was in quite a good condition and had no serious illness at that time). Several weeks after tinnitus in my left ear began and soon after that I was diagnosed. My hearing was excellent but I lost most of it after the surgery (the hearing nerve was wrapped around the tumor). Now I am two weeks after a BAHA surgery and looking forward to my procesor. The months before the surgery I spent all free time walking in the nature which helped me a lot (together with my husband) to cope with that dreadful reality. After the surgery I did what was already mentioned here: walk and rest. I have no little children any more, so it was easier for me. I think you will need help with your daughter for some time after the surgery. The life after is still good, most of us can do almost everything as before. I have bad moments when tinnitus is strong and when I am remembering how much more beautiful music used to be with both ears. I wish you good luck. Eva

[LisaM]

Wow, thanks to all of you who have responded.  I know so much more about this new sub culture that I have entered than I did a week and a half ago! 

The size of my tumor is something that I need to clarify with the Drs.  The size I posted here 1.4 x 1.8 x 1.7 is what I was told by HEI when I called them after to my first visit there.  The MRI place has the size at 2.0 x 1.8 x 1.7, so I don't know which is correct.  I found out about my AN on a Thursday and went to HEI on Friday, they squeezed me in.  I will go back this Wednesday for the hearing and balance test.  When I first learned that I had an AN I had no idea how serious it was and wasn't prepared to ask all of the questions that I need to ask.  I have printed the list of physician questions from the ANA site that I will take with me on Wednesday.  In fact I have combed the ANA site through and through.  I've been researching this "marble" (that's what I call it with my daughter) in my head obsessively  and have been on a steep learning curve.  THANK HEAVENS I HAVE HEALTH INSURANCE!

A Dr. Santos at HEI told me he thought that I would be a good candidate for the Middle Fossa before I saw Dr. Slattery.  I was told that my tumor was a medium sized... maybe if I'm lucky Dr. Slattery got the wrong measurements for the tumor?  Or maybe it's the way it is shaped that prevents a Middle Fossa???  Hope to have lots of questions answered on Wednesday.

I'm thinking of getting a second surgery opinion with Dr.Shahinian at Skull Base Institute.  I know that endoscopic surgery is far less invasive than other surgery.  Anybody have anything to say about him?   The posts I have seen here  give him glowing reviews.  I saw one post that had a link to something apparently negative about him but I clicked on the link and it just took me to the home page of ANA.  I called Dr. Lederman and spoke with him but after reading a number of controversial posts about him, I will look elsewhere for radiation treatment if I go that route.

Would love to hear more about people with successful GK or CK.  Radiation does scare me...  Oh so much to think about!

On more thing: Sleep.  The quality of my sleep has deteriorated over the past few years.  I thought it was from being a new Mom coupled with the onset of menopause.  Has anyone had sleep issues with an AN? 


Thanks for the support!

C'est moi,
Lisa M

[e m]

Hi Lisa
I'm from Michigan, 61 years old, and had my surgery at HEI on February 9th.  My AN was 1 cm and I had Drs. Friedman and Schwartz.  Both were amazing; I can't say enough about either one.

Prior to surgery, the tests showed that I had some balance issues, however, my body compensated and I didn't know.  This made it very easy for me after surgery.  I was able to get up and walk.  They removed the tumor and saved my hearing and my facial nerve.  I too was very scared about facial paralysis.  Prior to surgery I had lost a little hearing; however, I also didn't realize it because it was very minimal.

It's good to get more than one opinion.  I had 3 different opinions in Michigan.  However, after speaking with Dr. Friedman on the phone as well as many other contacts I made; HEI was by far the place to go. 

Let me know if you want to talk about details

Ella

[james e]

Welcome! Removing the tumor really takes a big team. The ENT removes the tumor that is growing outside of the dura, and the neuro surgeon works inside the dura. That is the way it was explained to me.

Getting ready for surgery...I was 60 when I had my surgery. Some of these surgeries are long. Mine was 10 hours, and they are filling you with medications to keep you knocked out and comfortable, and your weight is the key to how much medication they use. If you are over weight, it would serve you well to loose some weight...it will help with your recovery. I am physically very fit, and I believe it helped me recover. During my PT, my therapist said my physical strength was a key in recovering my balance. You don't have to be an athlete, just be in pretty good shape...it helps in the long run.

You are very lucky to be in LA with HEI being there. I was going to go there, but would have to have been there 2 weeks, and that just was not going to work for me. I found a great surgeon in Houston and was in the hospital only 3 days.

Everyone  has a different recovery. Mine was excellent. No pain. Very tired for about a week, but I walked every day. I have told some people that I would rather have another AN surgery that a root canal (not true), but physical fitness and a good mental attitude is key.

[lauralynn]

Hello Lisa,

Welcome to our AN family!  As you already know you have come to a very informative and awesome site!  Such caring people here.  I came here right after I was diagnosed and here I am 2 years post op and I still come here.  It is part of my daily routine...got to always check in with my AN family!  I'd be lost without them.  Please do keep us posted and continue to post any questions that you may have.  Another key ingredient to be sure to have as you go through this is a great support group.  You have a great start with this forum  .  I know it is very scarey right now but you will get through this.  I will be praying for you.

God Bless,

Laura Lynn

[Tumbleweed]

Hi, Lisa:

Unless there are some special circumstances that indicate otherwise, your tumor is not too large for radiation treatments. In a nutshell, you generally stand a far greater chance of facial paralysis and possibly hearing loss with surgical removal of your size tumor compared to with radiation. The fact that your symptoms are few at this point and that the function of your cranial nerves appears to be good to excellent would seem to indicate that you are indeed a prime candidate for radiation.

Here are some links you should read (see my posts partway down each page); they compare the different forms of treatment (including risks), give you contacts for free consultations with leading AN specialists, etc.:
http://anausa.org/smf/index.php?topic=6670.0
http://anausa.org/smf/index.php?topic=13746.0
http://anausa.org/smf/index.php?topic=6657.0

This one might also be somewhat helpful to you:
http://anausa.org/smf/index.php?topic=5783.0

As for middle fossa approach to microsurgery, I can understand why House decided instead that retrosigmoid would be a better approach for your particular tumor. A tumor your size will most certainly have expanded into (or originated in) the CPA (cerebellopontine angle), a triangular area which is medial to the internal auditory canal (IAC). The middle fossa approach makes it difficult to get to all of the tumor in the CPA to remove it, whereas the retrosigmoid approach provides far greater access to the CPA.

Statistically speaking, with your size tumor, you stand a far greater chance of hearing preservation for at least the next several years with radiation treatments compared to with retrosigmoid surgery. (Over the course of 5 or 6 years, a large percentage of radiation patients will lose some or all of their hearing.) And in general, your chances of facial paralysis with your size tumor is probably less than 1% with CyberKnife treatment, for example (far less than with microsurgery). But these are just general statistics. You need to get an expert opinion. Read my posts in the links I've provided to learn more.

Best wishes,
TW

[Tumbleweed]

Statistically speaking, with your size tumor, you stand a far greater chance of hearing preservation for at least the next several years with radiation treatments compared to with retrosigmoid surgery. (Over the course of 5 or 6 years, a large percentage of radiation patients will lose some or all of their hearing.)

Lest I be misunderstood, the hearing you could potentially lose would only be on your AN side. Sorry for any confusion or panic I may have caused!

Best wishes,
TW

[cherrypiper]

1st off , surgery is NOT the only option there is radiation treatments called Gamma knife and the newer Cyber knife.....both us radiation, electrons i believe , to destroy the tumor while still in you. there are some advantages to both  these and regular surgery.

2 surgeons were required in my case. one to be the "bone cracker' as he called himself, the other was the ENT surgeon who removed the tumor.

My team was 2 surgeons, 4 nurses, and 2 technicians monitoring my face and nerves and spinal stuff and the anesthesiologist. sleep issues after An removal were site specific and with one of my eyes not being able to close . so we used patches cause tape didnt work.

[LisaM]

Just got back from my hearing and balance test.  Hearing is still pretty good and well worth saving.  Balance is 34% weakened on left side (side of AN) so my vestibular nerve will apparently be sacrificed with retrosigmoid surgery.  Dr. Slattery did say today, that Gamma knife is an option.  When I asked him about endoscopic surgery he said that he could see no benefit from doing endoscopic surgery with ANs.  That essentially the two surgeries were so close to being the same that there is very little difference.  I will get a second opinion from Dr. Shahinian hopefully within the next week. 

And then I may go up to Stanford for a third opinion with Dr. Chang about Gamma Knife.

I am sooooo overwhelmed with these decisions I need to make!  I'm leaving this thread open but will be posting more topic specific posts also.  Thanks to all of you who have responded. 

donnalynn, did you receive my response to your PM?  not sure I replied to the right spot.  My brain is on overload at the moment!

THANKS TO EVERYONE FOR THE SUPPORT!  BTW... my AN is 1.4 x 1.8 x 1.7

[Tumbleweed]

Dr. Slattery did say today, that Gamma knife is an option.  When I asked him about endoscopic surgery he said that he could see no benefit from doing endoscopic surgery with ANs.  That essentially the two surgeries were so close to being the same that there is very little difference.  I will get a second opinion from Dr. Shahinian hopefully within the next week. 

And then I may go up to Stanford for a third opinion with Dr. Chang about Gamma Knife.

I am sooooo overwhelmed with these decisions I need to make!

From what I understand, there is actually a pretty big difference between retrosigmoid microsurgery and endoscopic surgery for ANs: with retrosigmoid, you've got to push aside and clamp the cerebellum so it's out of the way, whereas this is not necessary with endoscopic technique. The brain does not like to be moved around, especially for the several hours it takes to do retrosigmoid surgery. Also, if I remember correctly, endoscopic surgery generally doesn't take as long as the "standard" microscopic surgical techniques, including retrosigmoid. Both of these factors -- cerebellar retraction and length of time under general anesthesia -- have been linked in some studies to cognitive and behavioral changes in some patients. All that said, Dr. Shahinian is a very controversial doctor. Some people in the media cast him as a quack, while others who are his patients (including several people on this forum) laud his exemplary skills at AN removal and thank their lucky stars he did their surgery.

You can email Dr. Chang and get a free long-distance consultation. I cited his email address in one of the links I provided in an earlier post in this thread.

As for being overwhelmed, we totally empathize. It gets much better. People on this forum pretty universally agree that the most difficult part of this journey is deciding on which type of treatment to have (and when to have it). But your due diligence is invaluable. This is such an important decision in your life. Kudos to you for taking the time to research your options so thoroughly. You'll thank yourself a million times over later.

Best wishes,
TW