Just found out about my AN, researching surgery options (Pittsburgh, PA)

[SlapShot]

Hello, this is my first posting.  An MRI on 01/15/09 revealed my large AN (left side) and I'm a bit anxious to learn much more about AN's and hopefully make good informed decisions towards surgical removal of the AN.

I'm a 45 y.o. male in relatively good health, aside from AN symptoms (tinnitus, loss of hearing, fullness, headaches, etc.)  Hearing in my right ear is fine/normal.  A hearing test revealed that I still have about 60%-ish hearing in the left ear.  For example, I can hear through a cell phone OK, but other spoken sounds I can't hear at all - I guess it depends on the tone/frequency.

The MRI shows that the AN measures approximately 2.6 x 2.4 x 2.3 cm, left side.  It also thumbprints/mushrooms/pushes along the brain stem.  I've read the MRI report/findings, but I really don't understand all of the medical verbiage.

I live in Pittsburgh, PA and the ENT Doctor that I'd originally seen referred me to whom he said was one of the best Doctors in the area at treating AN's, that being Dr. Moises Arriaga of the Pittsburgh Ear Institute.  He said that Dr. Arriaga has a terrific background and experience in treating AN's.  Was I fortunate to be in close proximity to have been referred to Dr. Arriaga as the Doctor for my AN?  He has a House Ear Clinic/Institute background and has been treating AN's for a while now, which are all a plus.  Do most folks normally seek a second opinion anyway?  If so, please feel free to recommend other Doctors that are around the Pittsburgh area.

I had a concult with Dr. Arriaga this week, and he was very nice, informative, and  reassuring.  He recommended surgery for my AN (over radiation), and he reviewed the translab and retro options to consider.  I think that Dr. Arriaga said that Dr. Parviz Baghai would be the neurosurgeon and that the surgery location would be at Allegheny General Hospital.

My next actions (I think) are to have an CT scan and an ABR test scheduled.  Those tests should show more data as to the health of the components/nerves around the ear and hopefully shed more light on whether it worth considering the retro option. 

My priorities would be to survive the surgery with the large AN tumor removed and hope for no permanent post-surgery issues that are possible, such a facial nerve paralysis, eye lid closure problems, bad headaches, leaks, etc., and if that means choosing the tranlab approach to improve my odds, and realizing that I'd lose all hearing through the left ear - then I'd strongly consider the translab approach. 

I've read/heard about the retro option it provides about a 30% chance that some hearing on the AN side would be a possible outcome, but that retro angle doesn't provide as well of an angle that the translab allows, thereby increasing the probability that the facial nerve recovery will be longer and I've read that bad headaches post-surgery might be more of a chance of occurring.  Is that true?

From what I've read/heard about the translab approach seems to indicate that it provides the surgeon the best possible view/angle to remove the large AN tumor and also lessen the chances of disturbing the area around the brain as well as a lessen the chances causing facial nerve issues.  Is that so?

Sorry for the length of this post, but feedback, suggestions, or comments are very much welcomed.  Finding this forum and reading through many postings has been very helpful, so thank you all for sharing your experiences for me to read.

Steve.

[leapyrtwins]

Hi, Steve and welcome.

I'm not from the PA area (am close to Chicago), so I'm not going to extoll the greatness of my doctors, but I do strongly suggest that you contact the ANA and get their informational literature.  It's written in very easy to understand language - not medical speak - and it will explain a whole lot about acoustic neuromas.

Your AN isn't really large - it's more towards the upper end of medium.  And it's probably out of the range of being treated by radiation. 

As for the retrosigmoid approach and it's potential for facial nerve damage and headaches, while it's true in theory, it's not always true in reality.  While there are some generalities about surgery, radiation, etc., every AN patient seems to be somewhat unique in the specific side-effects they encounter.  The size and location of the AN are both big factors.

I had retrosigmoid surgery in May 2007 and while I ended up SSD (single-sided deaf) in my AN ear, I have no facial nerve damage, nor do I suffer from headaches.  I did have slight facial nerve damage post op, but it didn't even last 48 hours.  On the flip side there are many who have had translab and are SSD with facial nerve damage and headaches.  CSF leaks can be a side-effect of either surgical approach.  So while it's helpful to know the odds of "issues" with each type of surgery, those odds may or may not apply to you.

Many AN patients consult with numerous doctors; I only consulted with one, but he does both radiation and surgery and I was totally confident in his abilities, liked him, and saw no reason to look any further.  It's a personal choice.  Do what you feel is best for you and your comfort level. 

Good luck,

Jan

 

[SlapShot]

Hi Jan,

Thanks so much for your quick and helpful comments and noting your AN related experiences.

The size of my AN was written as large on the MRI findings, but it’s somewhat relieving to know that it’s at least on the low/beginning side of large and noted during the consult as well as from your reply that it could be also considered high medium.

I was also comfortable with my first consult with Dr. Arriaga (and only consult at this time), and maybe that’s a good sign.  Other people’s experiences, even if personal, are also a good learning process for me – so thanks for sharing. 

It just dawned on me that consult is perhaps a better word that I should’ve used in my first post instead of using opinion, as surgery seems to be the applicable recommendation for me.

Thanks,
Steve.

[Pooter]

Welcome to the forum, Steve.  I'm just a wee bit younger than you, but my father lives in the Pittsburgh area (Sarver) so I know it pretty well.  Except, I haven't been there in search of AN assistance.

I'm with Jan that your AN is more of a medium size and given that it's already putting pressure on the brainstem, I would shy away from radiation therapy because of the known swelling of the size after radiation.  I suspect that most doctors would say that also, but I'm no doctor and I don't play one on TV.

Like Jan, I had a retrosigmoid surgery.  I had my surgery back in May 2008 (about 8 months ago).  If you want a pretty detailed account of my surgery through my perception (and recovery) visit my blog listed below my post here.  Warning, it's fairly long but it will take you through the entire process from my perspective.

Again, welcome to the forum.  Ask all the questions you want because that's part of why most of us who have already had treatment come back.  We like to share our collective experiences in the hopes that it could be of help to others earlier in the journey than we are.

Regards,
Brian

[texsooner]

Steve, welcome. Just a quick note to let you know that I also had retrosig surgery to remove my 3.5 cm AN(that was pressing the brainstem) a little over 5 months ago. I too was concerned about what I read about retrosig having a tendency for more headaches, but I can tell you I've been basically headache free since just a few weeks post op. I also had slight facial weakness, but this has improved almost back to normal now. You're doing a good job researching.....keep asking questions to help you make an informed and confident decision on the course of treatment.

Patrick

[Trackman]

I live in Pittsburgh and choose Dr. Arriaga, associate, Dr. Chen. I couldn’t be more pleased. I had the translab approach 3/08/08. Other then SSD, I have no problems. Contact me, I would be happy to speak with you by phone.

[Jim Scott]

Hi, Steve - and welcome ~

No fun being diagnosed with an acoustic neuroma but at least they are almost always benign (non-malignant) and treatable with surgery or radiation (or sometimes, both).  I trust we can offer you some assistance as you wend your way through the AN thicket, as it were. 

I don't live in Pittsburgh or anywhere near there (I'm in Connecticut) so I can't offer suggestions on local doctors but you seem to have found a good one in Dr. Arriaga. I had only two consultations with neurosurgeons and knew immediately that the second one I saw was absolutely the man I wanted on my case.  My gut feelings were rewarded with a very successful surgery and excellent recovery.   Your desire to come through AN removal surgery with basically no post-op complications is what every AN patient wants, Steve, and is perfectly understandable.  I wanted that, too.  Fortunately, I didn't have any significant post-surgical problems and what few I had (double vision) resolved on their own within days.  No doctor or anyone here can guarantee you'll enjoy a complication-free outcome to AN removal surgery (or radiation, for that matter).  There are simply too many variables, including the exact location of the tumor and, of course, the surgeon's skill.  All you can do is research and try to make an informed decision, understanding that post-op complications can occur, while doing whatever you can to ensure they won't, such as insisting on facial nerve monitoring during the surgery, which is almost standard procedure these days with AN removal surgery. 

For what it's worth, I underwent the 'retro' (retrosigmoid approach) procedure and had a very good outcome, although I was already deaf in the AN-affected ear before the surgery and remain so, today.  My neurosurgeon chose that approach because of the location of the tumor, which is usually the reason surgeons pick a specific approach to the surgery.  There is no 'best' surgical approach because each AN patient is unique and so is the size, location and growth direction of their tumor.  I think that if one approach was really 'best', every surgeon performing AN removals would use it, exclusively.   

I'm sorry you have to deal with this relatively rare condition but I'm pleased you found your way to our little corner of the internet.  We've all been in your situation (just diagnosed and searching for answers)  and we understand the anxiety and concerns you're likely experiencing.  We all want to support you as you travel this road and will be here to do so, anytime you want to avail yourself of our collective knowledge and concern for another AN patient.  Consider the forums both a resource and a place of friendship and solace. 

Jim

 

[SlapShot]

Hello everyone,

Thanks for the responses; they're certainly keeping my mind open.  I'll surely keep reading and learning.  Thanks for the tip about reading the blog Brian.  I did and found it well written, informative, and witty - nice job!  Kudos to having such a supportive family by your side!

And the comments from everyone have been both interesting and enlightening.  Patrick, glad to learn of your progress to this point and the headaches haven't been an issue.  And Jim, you've made a good point in that it's most likely the ENT and neurosurgeon will make the surgical recommendation best suited for my AN location.  You all provide a ray of light.

As you've each intimated in your own way, some (hopefully most?) of the "grey" areas that I'm sorting through now will hopefully become more clear in the coming weeks.  They have to.

How does the retrosigmoid approach impact your balance mechanism on the AN side?  Is it a temporary or permanent loss, or more a case by case result?  With translab, I understand that balance loss is a certainty on the AN side.  But that your mind retrains itself (from the non-AN side) to regain balance again over time.

Also, I understand that the odds of any hearing preservation after a retrosigmoid are low (30%-ish?) on the AN side.  But  have you heard of at least some (a few, several, rarely, etc.) where hearing preservation was the outcome?  I've not come across any of the posts that I've read so far, but there are many that I've not had the opportunity to read yet either.

You each seem to have dealt with this as well as could be expected of anyone.  It really does help to read about your experiences, as they're encouraging.

Trackman, thanks for the offer to discuss this further - I'll send you a message.

Kind regards all,
Steve.

[leapyrtwins]

Steve -

here's a prior thread on hearing outcome and retrosigmoid approach that Kate B started on the forum last April.  You might find it helpful.  http://anausa.org/forum/index.php?topic=6222.0

I knew that by choosing retrosigmoid my odds of saving my hearing were small, and I could have chosen translab, but in my mind it was important to at least try to preserve what I had.  I told my neurotologist if he and the neurosurgeon could save the hearing, great; if they couldn't, at least we could say that they tried.  Turned out my AN was wrapped around my hearing nerve and in order to remove the entire tumor, the hearing nerve had to be "sacrificed".  I know for a fact that my neurotologist felt terrible about my hearing loss, but honestly I never really perceived it as a tragedy.  There are worse things in life than being half-deaf.

As for balance, I was definitely wobbly both pre op and even more so post op.  But the body does adjust in time.  Is my loss a permanent loss?  I'm not sure.  I can walk normally, and do, 98% of the time.  When I'm tired or have walked a long distance, I begin to use the "drunken-sailor" walk.  I could be wrong, but I think this is quite common - whether you choose translab or retrosigmoid.

My neurotologist had me doing vestibular exercises both pre and post op and they definitely helped.  I also had the opportunity to be referred to a PT, but I decided I didn't need one; some do, some don't.

Jan

[Pooter]

Steve,

I'm glad you found my blog helpful in some small way.  My experience is that if you have hearing loss before treatment, it's VERY rare that you don't have hearing loss (probably complete) after treatment.  If you have no loss before treatment then there's a small chance that hearing will be saved to a salvageable level.  Most people from what I've seen have hearing loss as one of their "presenting" symptoms (that caused them to see the doctor in the first place), which is why it seems pretty rare to find those that have no hearing loss after surgery.  They are out there (statistics don't necessarily lie), but typically those that frequent this forum are because they're searching for answers to their problems and hearing loss (and tinnitus) is a major reason for that.  I'm sorry to say that whatever hearing you have left prior to treatment is the most you can expect after treatment.  It's possible that hearing gets better after treatment (I've seen it with some members here), although that doesn't seem to be the norm.  There are options available to you if you end up with SSD.  BAHA and TransEar seem to be very popular with the members here.

I wasn't real wobbly before surgery, but I definitely was slower going and somewhat wobbly after (getting better and better).  The body does adjust with time.  The thought process behind is that hearing has options (BAHA, TransEar among others), the body will adjust if the hearing nerve is taken away either on purpose or by the tumor (I should say that it SHOULD adjust), but you can't do a whole lot about the facial nerve being damaged (there are some things to make it better; eye weights, T-3 surgeries, etc..) therefore more attention is given to the facial nerve and protecting it.  Rightly or wrongly, that's the way it is.

The balance and hearing mechinsms are automatically sacrificed with a translab, but I don't think it's automatic given when you have retrosig surgery.  It's done by a case by case basis (I think).  Balance, as stated, should be compensated for over time for the most part.  Part of what helps with balance is the ability to hear and when you lose that ability your brain has to learn to compensate with hearing only from one side.

Hopefully that helps some..

Regards,

Brian

[stevek]

I had Translab on 06/09/2008 at Allegheny with Dr. Hillman, Dr. Chen and Dr.Aziz.  I can tell you that my experience in that facility with that team was awesome.  Being right there in Pitt you should take advantage AGH.  I lived in Rochester NY at the time and had no problem with all the traveling because my family and I had absolute confidence in these surgeons.  I returned to work in 3 months and have been doing great.  Keep in mind everyone's situation and recovery can be different.  I wish you all the best on your journey.

Stevek

[TaraT]

Hi!  I have been reading all the posts on this site for about a week now and was so happy to come across this.  My name is Tara and live in Somerset, PA.  I am 38.  I was diagnosed with a right-sided 2 cm AN on 1/7/09.  I was referred to Dr. Chen in Pittsburgh.  I was told by my ENT that he is one of the best.  He is wonderful.  I am meeting with Dr. Aziz on Thursday to go through a bunch of testing and translab surgery is scheduled for 3/24/09 at Allegheny General Hospital.  This whole diagnosis was a bit of a shock.  I just about passed out listening to the surgical options. 

I have had ringing in my ear for about 2 years and slight hearing loss.  I thought it was because at the time I was doing medical transcription.  In 10/08, my tongue got tingly and the family doctor said it was nothing.  I went to an ENT in 12/08 and told her about my tingly tongue and the right side of my face was a little numb and she sent me for an MRI and here I am.  The decision for translab sounded to be the best option for me.  I am scared to death. 

Tara

[sgerrard]

Hi Tara,

Welcome to our little club. Don't be scared to death; there's nothing like that to worry about. If you have translab surgery you will lose hearing on that side, and along with the ringing in your ears, that will be the lasting memento of your AN. Other than that, life will go back to normal. Pretty much.

Please make yourself at home, and post any questions you might have. Lots of people have been there before you and will be happy to help you out.

Steve

PS: Don't be shy about starting a new topic; that way it is often easier for people to see you are new here and help you out.

[Trackman]

Tara

I had Dr Chen and Dr. Aziz preformed a translab March of 08, and I couldn’t be more pleased. I was also scared to death. But as Steve said other then hearing loss on that side, life will go back to normal. The day after the operation was rough and then everyday improved. It’s better being on the back side of a translab.  I am sure that Dr. Chen gave you the direct phone line to his nurse, Karen, if not, ask for it.  Any questions or concerns you have, call her. I did, maybe twice a week. Contact me, I would be happy to speak with you by phone. You are in great hands.

Mitch

[stevek]

Trackman,

Good stuff.  Another AGH Alumni.  I was so amazed with our surgeons and the entire staff at all levels of that hospital.  They really do take awesome care of their patients.

Stevek