Just Diagnosed...

[SusanT]

I really appreciate all of the support and advice that I have received. I have been on an emotional roller coaster.  I haven't been able to reply to any of you because the one symptom that I have not had decided to rear it's ugly head this week.....VERTIGO. My computer screen took on a life of its own. It appeared to be a constant "wave". Needless to say, I haven't been using the computer. It's better now. I am sending a copy of my MRI to Dr. Brackmann at the House Clinic.  Several of you mentioned the idea of not being able to locate sound after the translab approach. I had never thought of that. I have emailed my neurosurgeon and asked him about which approach he recommends. He responded that the retrosigmoid approach gave a smaller chance of complete resection of the tumor. My MRI report states that the AN has both intracanalicular and extra canalicular components. What does that mean ? Any ideas on the complete resection ?

[krbonner]

My MRI report states that the AN has both intracanalicular and extra canalicular components. What does that mean ? Any ideas on the complete resection ?

"intracanalicular" means it's in the inner ear canal, and "extracanalicular" means outside the inner ear canal.  Basically, your AN is partially in the ear canal, and also extending outside the ear canal towards the brain.  Very typical growth pattern for ANs.

As for the surgical approach vs. hearing loss...  My understanding is that the translab approach gives the surgeons the best visualization of the facial nerve, though it does sacrifice the hearing and vestibular nerves.  This is the approach I took, because the hearing in my AN ear was pretty much gone pre-op (12% word recognition) and my main concern was preserving my facial nerve (which had no problems pre-op).  If you have usable hearing in your AN side, talk with the surgeons about the trade-offs for trying to preserve that.  It may mean that some of the tumor has to be left behind, but that could always be zapped with radiation down the line if it starts growing again.  You also have the option of radiation for treatment now, and perhaps saving your hearing. 

I do sometimes have trouble locating the direction of a sound, but that would be true for me no matter what treatment option I chose given the state of my hearing from the beginning.

Katie

[LS]

Susan,

If I had to go the surgery route I would definitly lean toward House based on feedback from this forum and a friend of a friend that had their AN removed there.  They couldn't say enough nice things about House.

I am meeting tomorrow with a Houston area neurosurgeon recommended by my ENT.  I will use this meeting to get info and ask a bunch of questions.  During the past couple of weeks since I was diagnosed I have read more and more about radiosurgery, especially Cyberknife.  I am leaning toward it because of the size of my tumor, 1.6cm, and the fact that CK has the best chance of saving your hearing in the affected ear.  I have profound hearing loss there but I can still hear out of it and can definitely use it to locate where the sounds are coming from.  At this point I just don't want to deal with surgery if CK or even GK is a realistic alternative.  I have sent my MRI's to Dr. Stephen Chang at Stanford University (where CK was invented....and hopefully perfected) and wait to hear from him.  Here is a great website that may peak your interest in nonsurgerical approaches.  http://www.cyberknifesupport.org/forum/

Please don't rush into surgery without looking at the alternatives.  I just can't see doing surgery if there are other non-invasive approaches available.  Do your research and you will do what is best for you.  Good luck.

[pearchica]

Ahhh welcome to the land of AN'er and surgeons who love to slice and dice in very different ways only to confuse the patient more.... I had 3 surgical opinons prior to the fouth guy who recommended cyber knife (radiation therapy)...

First guy recommended translab to debulk the tumor, than radiation to kill of the rest of the bugger.
second guy recommeded translab for complete removal
Translab is prefered as it doesn't screw up facial nerve as much.

Third guy recommened retrosigmoid as he wanted to preserve my hearing albiet only 5-10 % chance of that.

Fourth guy was my savior as I got to avoid the surgical knife and go for radiation. 

My husband expressed frustation with the whole process- each surgeon was compelling as to "why their way was the highway to better health".  Fourth guy explained that surgeons in 70's and 80's were only trained in surgical techniques- while surgeons in 90's were trained in both radiation and surgery.  My advise- get someone who trained in both methods- they will give you an unbiased view.. 

I'm sorry you are having vertigo- that is really difficult to deal with.  Good luck and read as much on this website as you can- it is a wealth of information.  Take care, Annie

[SusanT]

Thanks so much Annie for the info. So far, 2 docs have recommended the translab. I'm getting the 3rd opinion in April. Radiation has been discouraged due to my age (41) ?!? There are days that I can't even think about it because I get so emotional  I am quickly (and sadly) learning that this whole process is such a "business". Ready to slice and dice and collect that money. It is really discouraging at times. The vertigo has stopped for now. I've slowed down and started resting...I'll keep you posted.
Susan

[ppearl214]

HI Susan and welcome.

I'm really rather surprised that the dr's shunned you from radiosurgery due to age.  Last year, at the age of (gasp!) 46, I had cyberknife and now, 11 mos post treatment, I am doing fine. I have the same hearing I had at time of treatment, I'm working, functioning and feeling fine.  I believe that many dr's will try to steer patients away from radiotreatment, regardless of age, due to lack of knowledge of what the radiotreatment options available and how they work.

A great site for radio-reference is http://www.cyberknifesupport.org/forum/ where all the dr's that volunteer their time, can answer questions about all forms of AN treatments.  May be worth a peek.

As we all know here, the decision is a highly personal choice.... and my hope is that you research all options available to you and make the decision that is best for you. As you can see, we all cheer you on, regardless of your decision, as we just want you (and everyone here) well.

Again, welcome!
Phyl

[Dantheman]

The decision between surgery and radiation is certainly a personal one. Obviously a surgeon will promote surgery...that's what he does. At 44 I chose trans lab surgery. 73% of my hearing was gone and I have a family history of bone marrow cancers. So I didn't want radiation to spur anything along. I will say though, if I had a reacurrance, I would look very hard at radiation.

It has always been my opinion that if you have a tumor and it's operable to just get it the hell out. That's what I did.
You'll also find many people on this forum that are very happy with the results of their radiosurgery. Get all of the information that you can on all of the various procedures...both good and bad. You'll eventually come to a decision that you are comfortable with.

God bless,

Dan

[Jim Scott]

Hi Susan:

I had a rather large AN tumor (see my signature for details) and my neurosurgeon recommended surgical de-bulking and radiation (FSR) as the tumor was too large for radiation, alone.  That seemed reasonable and I went with that plan.  It worked out just fine.  I underwent the retrosigmoid surgery - not to save my hearing, as it was already lost - but so the surgeon could have a better approach to the tumor site.  He removed about half of the tumor, carefully avoiding any facial nerves in the process.  I recovered quickly from the surgery with no real complications.  The radiation treatments were tedious but painless and without incident, although I believe I may now have some tumor swelling, which is annoying but normal, following radiation.  Other than that, I'm pretty much back to normal and have been for months.

I was 63 and in otherwise good health at the time I underwent both the surgery and the radiation, so don't let the doctors use your age (41!) as an excuse (and a poor one, at that) not to perform non-invasive radiation on your AN.  Remember, it's your choice, not theirs.

I wish you all the best as you work toward a decision and trust that this forum has been of some help to you.  We try. 

Jim

[pearchica]

Hey Girl: the doctors said the exact same thing too me! I'm 44 and #4 said it was precisely because I was young that I should have radiation- go figure.  Either way you will make the right desicion for you. Take care, Annie

[SusanT]

Annie,
I am taking the advice of many and cheching into radiation. The neuro doc that I have already seen does gamma knife. I'm also checking into Cyberknife. I feel as if I'm starting over...Back on the emotional roller coaster...I would really like to keep up with your progress and how your treatment has helped. I've started reading more about Cyber knife.
Another thing that we have in common is the Arnold "TUMAH" thing. How funny !
Take Care and let me know how you are doing.
Susan 

[pearchica]

Hey SusanT: hope this finds you in relatively good spirits and health. You are right, it is an emotional rollercoaster ride.. I didn't realize how exhausted I was- trying hard to be stoic for everyone else, trying to be realistic yet optimistic, keeping family and friends updated...the only good thing is that these are benign.  Post CK one month, I feel just fine ( but then i was fine before I found out I had this stupid bugger)- I'm embarrassed but I haven't had the side effects that most eveyone else seems to have: balance, high pitched humming...I do have low pitch humming ( but more like I've had too much aspirin).  Yep, will keep you and everyone else updated as I progress too- but for now, I go back in August for my first MRI... take care, or as our govenor former actor would say "Hasta la Vista BABY) - too bad I can't get him to terminate this tuma...
Annie

 

[Featofclay]

Hi Susan,
I was diagnosed 12/19/06 and had retrosigmoid at House in LA on 2/16/07.  Going into surgery I had 30% hearing loss on AN side and have no hearing now.  The doctors did say the nerve looked good during surgery and that it is possible that my hearing will return in that ear.  Will just have to wait and see.  The doctors assured me that they did get all of the tumor which was precisely why I chose surgery over radiation.  It is all up to the individual though and there are no guarantees whatever treatment you choose.  Keep reading and do your research.  There is a lot of good advice on this discussion board.
Jean 

[Evan]

I have been reading some of the Newbie recent posts.  I was just diagnosed on Thursday with a right sided AN, 1.5 x 1 (I am meeting with my doc today to get more specifics).  Although I have been told I have some hearing loss, I do not feel it, so the treatment choice will be key.  Obviously I want to keep my hearing, but more importantly, I want the safest choice for my health, even if it means losing my hearing on my right side.  I am 53, and from what I am reading surgery will probably be recommended.  The choice is a different story.  I am from NYC and will be going to see the well known docs here, and then maybe email or send my MRI's to the House Clinic.  So, if anyone has any more thoughts (I thank those who have already replied) I would appreciate them, and certainly I will continue to post on any new information I obtain on my road to deciding what treatment to select.

Thanks.
Evan

[SusanT]

Evan,
I was diagnosed in Feb 07. I spent most of February only researching the surgery options. I sent my MRI to the House clinic and got Dr. Brackmann's opinion. (He actually called me-that shocked me because it sometimes takes several days for my ENT to return a phone call ).  My neurosurgeon does both Gamma Knife and the traditional surgeries. Yesterday when I talked to him, he told me to take a "deep breath" (I tend to get a little anxious) and research Gamma knife. I just can't get a sense of peace about the surgeries. I expained to him that I want to go the least invasive way first and then if I have to have surgery later then so be it. Needless to say, the past month has been stressful and with my Type A+++ personality-WOW. I find myself avoiding people because everybody wants to know what I have decided. I know they mean well, but I get over stimulated with a lot of "activity". I really can't give you advice "from experience" yet. My neuro doc said it best...."Take a deep breath"...
God Bless,
Susan T.

[Boppie]

Evan, At age 53 you are a candidate for either route of treatment, surgery or radiation.  Please don't let the age be the issue for your choice.  You might have other health issues that would bring a doctor to the conclusion that you need surgery, but do your research and ask lots of probative questions.  I think you will find statistics that support a treatment path that sometimes preserves hearing.  If your hearing is not so bad, you might consider trying to save it.  Your tumor is not large.  You have time to decide what is best.