Newly diagnosed, struggling with options

[Slab]

Several opinions so far. Any thoughts?

Consensus- I have a large (3.5cm) AN on the left side that needs to be removed sooner rather than later. It's been in there for approximately 10 years. I will not have any hearing post op. The balance nerve is probably already gone.

Where there are differences of opinion-

1. 1st visit- Dr. Rosen, head of neurosurgery at WVU, confident the correct approach is retrosigmoid to remove all tumor. If small portion of tumor has to be left to salvage facial nerve, this would be radiated later. estimates 90% of surgeries- no major complications, 70-80% chance of preserving facial nerve. does 7-8 a year. Confident no one on the east coast is more qualified. Earliest possible surgery date- anytime as long as he has a couple weeks notice.
Pros- very confident, most local/convenient, can do it immediately; Cons- only 7-8 per year

2. phone consultation- Dr. Delashaw, head of neurosurgery at UC Irvine, confident the correct approach is 2 stage, retrosigmoid followed within a month or 2 by a translab to remove the balance. This would allow the facial nerve to de-stress prior to removing it completely via second surgery. He purports to have published success rates using this technique of 83% facial nerve preservation. he also advises that anyone else doing the surgery is really only getting 50% facial nerve preservation no matter what they tell you. Confident that no one on the east coast is capable of treating a large tumor as effectively as he can and my facial nerve is worth the extra time, money and logistics of 2 trips to California. Has performed 800 surgeries, 50/year and written numerous papers for Journal of Neurosurgery. Can do it anytime with a couple weeks notice.
Pros- very confident, most experience, can perform surgery anytime; Cons- 2 surgeries, plus far away- involves logistical nightmare of 2 trips for surgery to California, how to schedule in the event of complications either during surgery or after I get home.....

2. visit with Dr. Hillman, Otologist at Allegheny General in Pittsburgh, tends to agree with Delashaw regarding the 2 stage approach but would want to consult with the neurosurgeon Dr. Aziz, estimates 95% chance of surgery with no complications, 80% confident in preservation of facial nerve. Advised Delashaw's 50% number is just incorrect. performs 12 or so a year. Earliest possible surgery date- January 2012
Pros- Hospital less than 2 hours away, he has more experience than Rosen and the neurosurgeon does almost as many each year as Delashaw, Cons- timing- have to wait for January, not as confident as the neurosurgeons, his neurosurgeon disagreed with his recommended approach


3. phone consultation with Dr. Asiz, neurosurgeon at Allegheny General. Asiz recommended a Translab approach to completely remove the tumor in one surgery. he recommended Hillman's partner, Dr. Chen, as being more experienced than Hillman and claimed to be extremely confident I would come away from surgery with no facial nerve damage. Also stated Delashaw's 50% estimation to be inaccurate and said that if I elected to have surgery on the east coast, he was the guy. If I wanted to go to California I should go to the House clinic, where Dr. Chen was trained. Performs 40 or so a year. timing would depend upon the otologists- Hillman- January, Chen- February
Pros- Hospital less than 2 hours away, experience- does almost as many each year as Delashaw, Cons- timing- have to wait for January or February if I go with the more experienced Otologist, still not as experienced as Delashaw.

I know most of you aren't doctors, but I also know many have done alot of research. All of this ring true? Anyone have any thoughts on the trade offs between one longer translab surgery and a 2 stage approach- shorter retro followed by shorter translab? Anyone else get different opinions from each expert?

It makes sense to me to perform 2 smaller surgeries to speed up recovery and destress the facial nerve first. But it also makes sense to me to avoid the retrosigmoid approach since hearing loss is a given and "pushing" aside the brain to get to the tumor seems unhealthy if it can be avoided.

Anyone with a story on flying somewhere for surgery? How did you schedule a return flight? 3-5 days in the hospital as an estimate means you are likely spending a day or 2 post op in a motel room- Ugh. What do you do if you get home and have issues?

Any thoughts or comments appreciated.

Thanks!

[Jim Scott]

Hi, Slab ~

Welcome to the ANA discussion forums. 

I'll admit upfront that your options are a bit daunting in their complexity.

In 2006, I was diagnosed with a large (4.5 cm) AN that was pressing hard on my brainstem, although my symptoms were not too severe.  On my second doctor consult, I was blessed to find a neurosurgeon with decades of experience in surgically removing acoustic neuromas.  He was very interested in my case and presented me with a plan to, first 'de-bulk' my AN by effectively peeling away layers that would thin it to a point where it would be very vulnerable to irradiation.  This would reduce it's overall size (to approximately 2.5 cm) and avoid disturbing the facial nerve so as to ensure a minimum of damage, which was, not surprisingly, my biggest concern.  He opted to use the Retrosigmoid approach.  Following the surgery, after a 90-day 'rest period', I would undergo FSR to spare surrounding tissue with the goal of destroying the remaining tumors DNA and it's ability to re-grow.  The upshot is that the surgery was completely successful with no significant complications.  My cerebellum was moved, slightly, during the operation but with no noticeable negative effect.  My AN symptoms disappeared immediately post-op.  The radiation sessions (3 months later) were tedious but uneventful and with no side effects at all.  Subsequent MRI scans (over a two year period) indicated tumor necrosis (cell death) and the beginnings of shrinkage.  After a period of recovery, my balance was stabilized and, aside from some fatigue at times, I'm doing great six years after my AN experience.

I relate my experience to offer a perspective that demonstrates AN surgery can be successful and without complications.  However, one AN patients experience is not a guarantee of another AN patients surgical outcome. We all want a successful, complication-free outcome but when confronted with numerous options that all have pros and cons attached, at some point we just have to rely on our intuition, also known as 'going with your gut'.   

The doctors confidence in their outcomes is encouraging but, to be frank, should their rosy predictions prove mistaken, you'll have to live with the outcome, not them, and no doctor can realistically guarantee the outcome of this complicated surgery, despite statistics and assurances.  Of course, I understand that is why you're wisely seeking opinions from AN patients - and I'm sure you'll receive quite a few.  I hope they are all helpful to your decision-making process.  I will decline to offer direct advice but the west coast scenario seems a bit complicated and I know from experience that there are many 'local' doctors with the ability, skill and experience to perform the necessary surgery with a positive outcome because I had a doctor who did so, even though he was virtually unknown outside of his immediate area (New Haven, Connecticut).  I would offer you his contact information but he is now retired. 

Again, welcome to the forums and I trust they'll prove useful to you as you pursue information and advice on how to proceed as you decide the course of action to address your AN. 

Jim

[Slab]

Thanks Jim. I appreciate the feed back.

Another question. Can anyone speak to the rate of growth of these tumors? Everyone seems to accept them as "slow growing". Each doctor has estimated it has been in there for approximately 10 years but that estimate appears to be based solely on the size as indicated by the one MRI. So a 3.5 cm tumor growing at a rate of 3mm per year has been in there 11 years.... I have, however, read reports of some tumors growing much faster. Can they tell from the MRI that mine is not one of these faster growers, making my surgery more of an emergency situation?

[CHD63]

Hi Slab and welcome .....

WOW, you have already done a bang-up job on research.

I would have to agree with Dr. Asiz.  If you are even considering going to California for surgery, House Ear Clinic is the place you want to go.  Even if you do not go out to House, I would strongly urge you to get one more opinion from them by sending yet another copy of your MRI and audiogram to Dr. Friedman at House.  See:  http://www.houseearclinic.com/consultation/acousticneuroma   and send it to the attention of Rick A. Friedman, M.D.  He will call you back within 24 hours of receiving your materials and give you an experienced evaluation.  (He and Dr. Schwarz together - they work as a team - do in the neighborhood of 100-200 acoustic neuroma removals per year.)

I flew from the East Coast and back to House for my surgery 18 months ago with no difficulty whatsoever.  My husband and I stayed in the guest house of the hospital (Seton Hall) for $65 a night ..... clean, quiet, comfortable, and within easy walking distance to the hospital.

Growth rate of ANs typically is slow.  However, there are a couple of us on this forum who experienced rapid growth.  I had a negative MRI for another reason ..... 15 months later the MRI showed a 2+cm AN and three weeks after that, at first surgery, it was 2.6cm.  I had retrosigmoid the first time and it grew back (also very rare) to 1.3 cm in 3 years.  That's when I went out to House for my translab surgery.

As for yours being an emergency situation ..... your symptoms would be the best way to gauge whether it is growing rapidly or the normal slow growth.  I do not know of any way a neuro-radiologist or doctor can tell growth rate of a tumor by a single MRI.

Many thoughts and prayers.

Clarice

[Tumbleweed]

Slab, I commend you for doing such thorough research and weighing of pros and cons. That gives you a far greater chance of a positive outcome.

I'm not a doctor, of course, and admittedly know a lot more about radiation than I do microsurgery. But if it were me, I'd lean heavily toward getting the whole thing done in one microsurgery -- plus radiation as needed, to deal with any remnant tumor the doctors might opt to leave behind. Two microsurgeries seems riskier to me than one. Often, the side effects/physical trauma of treatment (of any kind) can profoundly affect cranial-nerve function (not to mention, surgery can also present complications such as headaches, CSF leakage, and cognitive changes). While I understand that your tumor size pretty much narrows your options to just microsurgery, I don't think I'd want to have such an invasive procedure done twice, when it might be accomplished in one operation.

Of course, the qualified opinions of expert neurosurgeons might totally disqualify my layman's perspective. But possibly not. To wit, I suggest you get one or two consultations with leading surgeons at House Ear Clinic (HEI) and Stanford University Medical Center, both in California: Dr. Derald E. Brackmann at HEI and Dr. Steven Chang at Stanford (sdchang@stanford.edu) will each review your medical records and give their recommendations for free, even should you choose not to become their patients. They are both world-renowned surgeons and would probably shed additional light on your options.

Good luck!

Best wishes,
TW

[LisaM]

I'm addressing  the rate of growth part of your post...

I corresponded with a woman who had her 3.5 AN removed at the Skull Base Institute in Los Angeles.  She waited 8 months before getting treatment after diagnosis.  Her AN was slow growing but the doctors were really pushing her to get treatment ASAP.  She waited until she was ready.  She is SSD but other than that no problems.  Tumbleweed, who posted just before me, if I recall correctly, had a fast growing tumor.  It's difficult to know what you have and apparently the only way to tell is with a second MRI that is generally done at 3 months, that was my experience anyway.  Has anyone suggested this to you?  What were your symptoms that led to AN diagnosis?
 
I think it is REALLY important to not feel rushed into something like brain surgery.  The doctors can do it with two weeks notice but don't feel like you have to do it in two weeks.  Take your time and continue to collect information. 

[Tumbleweed]

Tumbleweed, who posted just before me, if I recall correctly, had a fast growing tumor...
 
I think it is REALLY important to not feel rushed into something like brain surgery.  The doctors can do it with two weeks notice but don't feel like you have to do it in two weeks.  Take your time and continue to collect information.

Good advice from Lisa. And yes, I did have a fast-growing tumor. I waited for 7 months after diagnosis to get treatment (CK). But I had more leeway time-wise because it wasn't pressing against my brainstem at the time of diagnosis. Still, there's no reason to rush into surgery in two weeks time if you feel you need more time to research your options, make a decision or simply get a grip on the situation. Even a fast-growing tumor shouldn't grow much bigger in a couple months time.

Best wishes,
TW

[Desilu]

Hi Slab,

You have been given lots of good advice! You have also done a lot of research. Being well informed helps to calm most of your fears. I just would like to add my two cents worth. I have to agree with Clarice and Tumbleweed. If you are doing all this research, please check out House Ear Clinic. If you send your MRI CD they will give you a free phone consultation. You can't beat the price! As you can see by my signature that Dr. Brackmann performed my surgery, a really great doctor with a great bedside mannor. I don't believe he does surgeries anymore but Dr. Friedman/Dr. Schwarz are the new "Dream Team" at House. It's worth your time to check it out. I'm sure you have local doctors that are qualified to do the job but when it comes to AN's numbers do matter, you want a surgeon who has done hundreds of these surgeries if possible. Hope I have helped in some small way. I wish you the best on your AN journey. Ann

[lrobie]

Hi Slab,

I will answer the question about flying after your surgery.  We took the train to Los Angeles and flew home...to Pennsylvania.  I was told that I could most likely return home in 10 days.  Surgery was on July 18th, flew home on July 28th.  I didn't have any issues with my ear popping.  I chewed gum.  I was worried about who would follow me after my surgery when I returned home.  I had already had a consult with a physical therapist prior to surgery.  I met with my PCP prior to leaving and she said that if I needed anything after returning home, she would collaborate with the House doctors.  I also had my original ENT doctor who diagnosed me in 2009.

Even though I continue to have issues with wonkiness/balance, I am thankful I made the decision to go to House in Los Angeles.

Lisa

[Slab]

Thanks all. Keep the comments coming. The more I know, the more empowered I feel. Sent my MRI off to House today. Hope to hear something from them early next week so that I can finalize plans. I'm ready to be done.

I might add to my original post- I had a phone conversation with Dr. Gardner at UPMC yesterday. After reviewing my MRI, he would recommend the retrosigmoid approach with the goal of removing the tumor completely but potentially staging it to save the facial nerve. He recommends retro over translab, because he feels retro gives him a better view of the brainstem. He also was very confident that he could perform the surgery with a low chance of complications or damage to the facial nerve. He estimates he does 1 a week, probably around 40 a year on average. Very easy to talk to and knowledgeable.

So I've talked to 4 neurosurgeons and 3 of them would use the retrosig approach with the goal of complete removal but anticipate having to leave a small amount. Of those 3, 2 would likely radiate the remainder and the other would complete the removal by translab. 1 neurosurgeon recommended translab.

[Twindy]

I would just add that in my research it seemed experience (how many done per year) was an important consideration.  Good luck.

[leapyrtwins]

Only you can make your treatment decision.  Don't let anyone else make it for you.

Your best bet is to weigh the pros and cons of each recommendation, decide which one you are most comfortable with, decide which doctor(s) you are most comfortable with, and then follow your heart, your head, and your gut.  It's also important to keep in mind that no one can guarantee you anything 100%.  Everyone's AN Journey is somewhat unique; so listen to others' stories but keep in mind that yours won't be identical.

IMO if you decide to have treatment by one of the docs you are consulting with over the phone, you should meet him/her face to face before deciding on anything.  I couldn't imagine having brain surgery performed by someone I only spoke to on the phone and never met until the day of surgery.  Just my two cents worth 

I had a fast growing AN - doubled or almost doubled in size in the 6 weeks between my diagnosis and my surgery (retrosigmoid approach) - and with the exception of being SSD (single-sided deaf) post op everything else in my situation returned to normal.  I have some slight balance issues when I walk in the dark, or I'm very fatigued, but that's about it.

Good luck making your decision; it's often the hardest part of the entire AN Journey.

Best,

Jan

[Slab]

Just to complete the thread... I also sent my MRI for a consult to the House Clinic. They mirrored the comments of Chen and Aziz from Pittsburgh's Allegheny General other than a slight difference in the technique for closing after surgery (titanium mesh vs. cement). After talking to Sandy Kraynok (who was effusive in her praise of the Chen and Aziz team) as well as meeting with both doctors, I've decided to have them perform my surgery. Scheduled for this Monday, December 3rd.

[CHD63]

You are in good hands.  Many thoughts and prayers.

Clarice

[leapyrtwins]

Slab -

hope your surgery went well and you are on the road to recovery.

Congrats on being a postie!

Jan