Regrowth of Acoustic Neuroma for the 3rd Time!!!

[justafactoflife]

I'm 63 and never dreamed after almost 10 years my Acoustic Neuroma was going to grow again for the 3rd time.  It was first removed in 2003, and the first regrowth was in 2006.  I had it surgically removed in 2003, then CK treatment in 2006.  Now, I'm being advised I can't do more CK because of possible Brain Necrosis developing and so surgery is my only option at this time.  The Neurosurgeon doctor in our local hospital wants to take a "wait and see" approach with follow up MRIs removing it when symptoms are worse.

The Radiation Oncologist who treated me in 2006 advised I go ahead and do surgery.  He suggested there might be a way of saving my facial nerve in the right hands of a good surgeon; the sooner the better rather than later because of the difficulty it would be to remove a larger tumor.  For sure damage would be done to the facial nerve if done later  Why not take a chance and try to save it than wait until it was too late?  It's a gamble I know because the surgery itself could damage the facial nerve anyway.

What should I do?  Where should I go for a second and hopefully final surgery?  I live nearby Springfield, MO and I have contemplated Barnes, in St Louis, Mayo Clinic, and The House Clinic. 

 I want to preserve what's left of my facial nerve which I do already have some facial paralysis going on right now.  In particular my right eye and mouth.

The size is 18mm x 12mm currently
In 2012 it was 11mm x 7mm

[mcrue]

I spoke about these specific concerns regarding tumor regrowth "post radiation treatment' with Dr. Marc Schwartz from the House Clinic. To make a long story short, he basically advised me that under his hands there would be approx. a 10% chance of a "bad outcome" with the facial nerve regarding salvage surgery post radiation. According to my conversation with Dr. Schwartz last week, he has extensive experience performing "salvage surgeries" from radiation failure.

Best wishes.

[justafactoflife]

If I read your post right that sounds like a 90% chance of a good outcome then?

[mcrue]

Indeed.

As you know, each case is unique so you should definitely contact him for your free MRI and case evaluation that he offers. I would specifically send your MRI to him.

[justafactoflife]

Ok, after researching further I found Dr Bradley Thedinger, MD in Kansas City, MO www.otologiccenter.com who has 39 years experience, listed on www.superdoctors.com,  and fellowship with House Ear Clinic in LA.  My ENT recommended him and so I have an appointment to see him Feb 15th.  Depending on his advice I may pursue surgery again.  He also has Dr Robert Cullen, MD and Dr Joseph Ursick, MD all of who have worked with and fellowshipped at the House Ear Clinic in LA.

What's your input on him?  What questions should I ask of him?  Any help would be appreciated.

[CHD63]

Hi justafactoflife .....

Although not quite in your same situation, I did experience regrowth within three years of tumor removal via retrosigmoid approach.  Due to a childhood history of massive doses of radium to my head, I was deemed to not be a candidate for more radiation exposure, as in Gamma Knife or Cyberknife, etc.  As you can see on my signature below, I went to Duke (NC) for my first surgery and like you did retain some of my hearing and successfully used a hearing aid.  By the time the tumor regrew, I had done extensive research into acoustic neuroma and treatment options/places.  I did not want to mess around with just any neurosurgeon who had removed some ANs.  It is a long story but I ended up at House Clinic with Drs. Friedman and Schwartz.  It was the best decision I ever made.  Dr. Schwartz skillfully wound his way through the scar tissue and successfully removed the regrowth via translabyrinthine approach (cleaner plane) with no resulting facial paralysis.  I am now deaf in my left AN ear, but Dr. Friedman implanted the abutment for my Oticon Medical Ponto bone-anchored hearing system at the same time.  It has been a wonderful system to transfer sounds coming from my deaf side to my hearing side, via bone conduction.

Sometimes I let it bother me that I could experience another regrowth (Dr. Barker at Mass General explained that aggressive tumors are just that and even one cell left behind can begin a regrowth).  My last MRI was last May, 2015 and it was stable so Dr. Friedman (who is now at USC and operates with Dr. Giannotta there) is letting me go until May, 2017 for the next one unless I experience a change in symptoms.  I am trying very hard to just get on with life and praying I will have no further regrowth.

The ANA has put out a comprehensive list of questions for physicians ..... some of which might be helpful for you.  See:  https://www.anausa.org/pretreatment/questions-for-your-physician

Best wishes and let us know how it all goes.

Clarice

[justafactoflife]

Thank Clarice for your reply.  Was there a long waiting period before seeing Dr. Schwartz and surgery?

Dr Bradley Thedinger is an Neurotologist surgeon.  Exactly what does it mean when his credentials says he fellowshipped at House Ear Clinic?  I'm thinking he and Dr Cullen both have extensive experience in saving the Facial Nerve and Cochlear implantations  Dr Cullen has worked with Dr Friedman, and Dr Brackmann.  I guess if they were trained by them they would be a good choice if I couldn't afford to go to Dr Schwartz. 

I too would just like whoever does my surgery to remove the entire tumor leaving nothing behind but that's what I was told they did back in 2003.

[Blw]

I think House is best choice hands down, or at least see them for a consult. Particularly for surgery, the absolute rule of thumb is to go to a doctor that has done lots of them, and I think a couple of the House doctors have done more than 2000. My neurosurgeon has done 800 and I still got a bunch of opinions and chose Gk. I think with the facial nerve, you can't have much error so if your insurance lets you go anywhere, go to House.

[CHD63]

Hi justafactoflife .....

Because I wanted both Dr. Friedman and Dr. Schwartz involved with my surgery, there was a bit of a wait until their two schedules and mine were coordinated, but it was less than three months.

Dr. Steven Giannotta, the neurosurgeon who works with Dr. Rick Friedman (neuro-otolaryngologist) at USC, is also excellent so at either place you would be in excellent hands (pardon the pun!).

While training at House is certainly a plus on a surgeon's credentials, experience is a major factor in chalking up successful surgeries.  Just my opinion, you understand.

Clarice

[michellef08]

I didn't have to wait long at all to talk to Dr. Schwartz and Dr. Friedman when I requested them at House almost 3 years ago. When I sent in my MRI for the free phone consult - I specifically requested them on my case. I got a call from Dr. Friedman and Dr. Schwartz separately within about a week. I initially sent my MRI in mid-February, and was in CA for my surgery mid-April, so 2 months start to finish!

I would also HIGHLY recommend traveling to House if you can! They are extremely experienced with ANs!! 

[justafactoflife]

Michellef08  So if I send them my MRIs and reports, and they call me back for consultation what next?  Do I have to make two trips out? One to see them face to face after their call appointment and then when I'm scheduled for surgery date which would be the second trip out? 

I'm on Medicare with a medi-gap supplement and SSI and on a very much limited budget.  That brings up another question; do they accept Medicare?  Where did you stay?  Do they have a place on campus or did you stay in a motel?  What about recovery and traveling times?  Any other things I need to know?

[CHD63]

I know you addressed this to Michelle, but I can answer most of these questions, as well.

My experience was ..... after Dr. Friedman received my MRI, he called me within minutes for the phone consult.  I only made one trip to Los Angeles.  We flew from across the US several days before the scheduled surgery date, mainly for a bit of sight-seeing before surgery.  The day before surgery was spent getting a physical from their internist, blood work, chest x-ray, etc. and an appointment with both Dr. Friedman and Dr. Schwartz who carefully went over my MRI with me and what to expect.

They do accept Medicare but you need to call their insurance department to double check on any supplemental insurance you may have and/or making sure all authorizations are in place.

My husband and I stayed the entire time in LA in Seton Hall, right next to the hospital and across the street from House Clinic.  I think the cost was $60 something per night ..... very clean, very quiet, very comfortable.  At that time they had a shared kitchen space for breakfast and small cooking.  We actually walked through the tunnel to the hospital cafeteria most days where the food was good.

To be on the safe side, we made our return flight reservations for I think it was 12 days post-op.  Other than some weather-related flight delays, I had no problems tolerating the flight home.

Michelle can tell you her experience, as well.

Clarice

[justafactoflife]

Thank you that helps.

[michellef08]

My story was very similar to Clarice's! I also flew out the weekend before to do some sightseeing (Disney and San Diego). I had my pre-op appointments the day before surgery where I met with both surgeons. Through the initial phone consults, I had already gotten the feeling that they were the right doctors for me, which is why I felt comfortable scheduling surgery with doctors I hadn't met. My family and I also stayed in Seton Hall, which was surprisingly nice! I work for Marriott so I am kind of a hotel snob, but the rooms were great, and the price couldn't be beat! Also - the hospital is not in the best area, so you probably won't want to stay anywhere else. After I was released from the hospital (Day 3 post-op), my family and I rented a villa down in Newport Beach to enjoy the CA weather. I was about an hour away - so you can pick whatever area/price point hotel you want to stay in. I went back a week after surgery to remove the staples/stitches, and then flew home 10 days after my surgery with no issues at all!

I honestly didn't think the travel was tough at all - and I'm from DC so I truly went across the country. It was my brain after all, so I wanted the very best! Hopefully if you splurge on this trip - you'll never have to have another treatment again!

[justafactoflife]

If I go we will drive out from Missouri and head back as soon as I'm released from the hospital.  We still plan to talk with Dr Bradley Thedinger and make our decisions then.