Top 'Neurotology surgeon & 'Neuro surgeon' in US, with massive exp. in AN

[nimmy]

December 2006, I was diagnosed with acoustic neuroma in left side. I had a hearing loss in the ear. Only 20% hearing left in that ear. I am a software engineer of 42 years old. Tumor size is 1.9 X 1.4 X 0.9 CM
Still I could digest /convince my self, I had a tumor in my head

I live in Connecticut.

I met
DR. Philip E stieg ( neuro surgeon) , Samuel Selesnick (otolaryngology)  in new york presibitarian hospital of NYC.

Dr. kalmon post (neuro surgeon), sujana Chandra sekhar( neurotologist) in Mount Sinai hospital of NYC

Couple of days ago I spoke to Dr. Brackmann (Otoloryngology) and Dr. Hitselberger (neuro surgeon) on phone of house Ear Clinic of Los angeles. I mailed out my MRI CD to them.

All these doctors suggested surgery inclusive of Dr. Brackmann (Otoloryngology) and Dr. Hitselberger , because of my age and tumor size.

I took paid member ship in http://www.castleconnolly.com and http://www.mdnationwide.org/, which will display state wise best doctors.( if any body want to know the top doctors in  a particular state, I can provide that information)

I took complete doctors profile related to few doctors through http://www.healthgrades.com
( If any body want these reports I can email them)


Questions:
1) I want to know the Top 2 doctors in neurotology and top 2 doctors in neuro surgery in the US ( what I sthe source to find) , not on the basis of state wise, who will do exclusively or majority of Acoustic neuromas. I do not want to keep insurance barrier or location barrier. I am ready to spend money. My hearing preservation is also very important for me. I want to make sure I am going to top notch surgeon in the US , so that chances of preserving my Hearing or chances of saving my nerves including auditory nerve will be more.

2) How practical it is to travel to a location which is more than 3 hours drive from the living place. Because in this forum , I Read that few guys traveled from east cost to west coast ( House ear Clinic, Los angeles)

Please help me.

[jtd71465]

Unfortunately even if you got the "best of the best" it's no guarantee that your hearing will be saved.  I would also mention that you should go and see Roland and Golfinos out of NYU Medical Center.


Joe-

[Jwh]

Hi,

I have a consultation with Dr. Post on 5/15.  I have a doctor in the family who suggested that I meet with Dr. Post.  He is believed to be one of the best neurosurgeons.  I know he is considered to be top notch.  Please tell me what your experience was with him.

Thanks,
jen

[littlemissrory]

There are many fantastic Neurotology and NeuroSurgeon teams around the US that do AN's.  Finding "the absolute best" is still an individual decision.  The best doctor in the world for you may not be the best one for me, and vise versa.  It's important to find a highly qualified AN surgeon who you feel comfortable with and works well with you. 

Personally for me the best is Dr. Mangham and Dr Steege in Seattle.  I had no hearing loss before surgery but was told up front I would be deaf afterwards.  He was able to save my hearing...but like Joe said there are NO guarentees.  Mine was a rather unique scenario- as I speak with people as soon as they learn I had an AN and I'm not deaf they're amazed.  And I am very grateful.  But I had accepted the fact that there are no guarentees.

There are many fantastic docs...people throughout this forum have had great successes from many different places.  Best of luck in your search and decision making.

Rory

[TP]

Well I can't help you with finding the best Dr's. In my case I needed surgery quickly and there were not too many neurosurgeons located in my area at that time. Good news is I liked my Dr!

I will share with you when you do have your surgery and you are released from the hospital I don't think you will want to take a 3 hour trip home. I would suggest staying in that area for a while until you feel like you are ready for the trip home. Everyone recovers and handles pain differently. 

I am sorry you are in this situation. I wish you the best in finding a Dr you feel comfortable with and pray your surgery is successful!

[Brandi]

Hello there,
I had my surgeries performed at Barrow Neurological Institute in Phoenix, AZ. The lead nuerosurgeon was Dr. Robert Spetzler and my otologist was Dr. Phillip Daspit. I know that people come from all over the world to Barrow in AZ. From what I'm told, Spetzler is one of the best. The web site is www.thebarrow.org.

My prayers are with you,

Brandi

[RED in Palacios]

Good morning and welcome to the group.  I am sorry you are one of us but delighted you found this resource.  Regarding your search for a treatment team, I can only offer my personal opinion and very limited experience.  As others have said here, the one best doctor for you might not be the one best doctor for me and vice versa.  I was referred to a clinic where I was told one of the finest practioners in my state was practicimg.  After meeting him and based on his attitude during the initial consult, I immediately begin looking elsewhere.  He and I were simply not on the same page and I was not at all comfortable with him or his dedication to treating my particular situation.  As you can tell from my post relatd to "Treatment Teams In Texas", my search continues.  The guidelines given by the AN association about the qualities you need to look for in a treatment team are well stated.  I will not repeat them here but suggest you look at them as you continue.  For my purposes, I am looking to find one who is knowledgable and skilled and who is willing to bust his butt to see that I get the finest care his team can offer.  Just because someone may be the most skilled surgeon does not mean that he or she will go "to the mat" wth me.  I want the team who is as dedicated to caring for me as I am.  I would suggest that if you are not comfortable with some one, or some aspect of their program, keep looking.  For me, the "right fit" is extremely important particularly when folks are considering things like brain surgery in my head.  Sorry I can't be more help wth specifics but I am still engaged in the process myself.  I wish you all the luck in your search and look forward to hearing from you as you resolve your issues.
Richard

[macintosh]

There will never be complete consensus about the single "top doctor" in any fileld. If I were in your position, I would look into Johns Hopkins. It is one of the top hospitals in the world, and one of the top AN treatment centers--both surgery and radiosurgery.

[Jim Scott]

Hi, nimmy:

I also live in CT (northwest corner) and I would highly recommend the neurosuregon who operated on my 4.5 cm AN tumor last year: Dr. Issac Goodrich, who is affiliated with Connecticut Neurosurgery http://www.ct-neurosurg.com/ and operates out of the Hospital of Saint Raphael in New Haven. 

He is a mature, Yale-educated, caring, compassionate neurosurgeon with decades of AN-related surgical experience.  I've had an excellent outcome following his surgery and the subsequent FSR treatments that he coordinated with an associate radiation oncologist.  I'm more than satisfied with his expertise and am pleased to recommend him. His office accepts most medical insurance plans and his surgical fees are very reasonable.  Dr. Goodrich is quite busy but I'm sure if you mention this website - he's an ANA member - he would be receptive to your inquiry.  If you're interested, send me a PM and I'll give you a bit more information. 

Although I can understand your desire for the very best surgeon to operate on you - who doesn't want the same thing? - identifying the 'top' neurosurgeon in the entire country is a very subjective exercise. I suspect you'll inevitably be frustrated.  However, should  you decide that a 'local' neurosurgeon - Dr. Goodrich - is not to your liking, the House Ear Clinic in L.A.has a splendid reputation for AN surgery.  Besides, you get a trip to Los Angeles. 

Jim

[Joef]

Hey there Nimmy ..

  I'm also a computer/software guy AND living in Connecticut! AND 42 years old! .... what city are you in? ..

  Its hard to say who the best doctors are .. House in LA are good...(Disclaimer: I went there) .. Mass General in Boston has several people here , NYC and Hartford CT ! experience is key! ask about outcomes and total numbers of operations .. and is surgery a necessary? how big is your tumor .. the rule of thumb guideline is anything over 3cm .(and placement of where it is). Please send me a PM if you want to talk more...

** say Phyll do we have room for one more for lunch **

[Crazycat]

Nimmy,

  You're in Ct? Check out my doctors at Mass General in Boston. They're some of the best around. I read somewhere that Mass General has one of the top neurosurgery depts. in the country.

    Read up on my case or anyone else that has had Drs. Barker and MvKenna. You'll do well by those guys! I got hit as hard as you could get hit with A.N. and I came through well especially because I had great, skilled and experienced surgeons working on me. I'll tell you whatever I can about my experience.

 Oh, you may want to attend the brunch we're having on the 4/29 in Worchester! There are a few of us there who've had the same doctors at the same hospital: Mass General! I can assure you that you'll be provided with a good, solid overview.

       Paul

[ppearl214]

** say Phyll do we have room for one more for lunch **

Joe, we always have room for another!

Hi Nimmy and welcome.  Well, if I knew the best of the best, heck... I would have jumped that bandwagon a LONG time ago.  But, others here have given you terrific suggestions locally in New England and you certainly have done your research.

Now, let's step back and try to understand a few things so we can help point you in the right direction.

1.  Do you have the wording (official written report from the radiologist) from your MRI w/constrast? 
2.  Exactly what size is the AN and it's exact location?
3.  Is it pressing against any other critical structures? (ie: brainstem, etc)?
4.  Is this the first MRI or a follow up to a previous MRI?

to me, once we know all fo that, we can help guide you with physicians that may have particular experience in handling certain situations..... as some have handled some moreso than others.

House is a terrific site for AN surgeries.  Many here can attest to their work there and their particular outcomes (good and not so good, as with any potential microsurgery).  There are those facilities locally that also do marvelous work (some already noted here by many).

As JoeF notes, we have a brunch coming up next weekend in Worcester, MA.  By attending (if you can), you will see many of us that have had different treatment processes and ... the most important... our outcomes.  There will be folks there that had their surgery at House as well as those that had surgeries in MA.... so.... you will get to see firsthand how wonderfully everyone is doing and be able to ask questions (over a really fattening, fun brunch) one on one.

Hope you get to join us.  If interested, pls look for the brunch thread in the "AN Community" forum here. 

Again, welcome.

Phyl

[nimmy]

Thanks for your Reply

DR. Philip E stieg ( neuro surgeon) told me that chances of saving my auditory nerve is 70%, Samuel Selesnick (otolaryngology)  told 50% . But both told me that, If nerve saved, still I will have same hearing what I have (Right now I have only 20% functionality in left Ear). Both suggested approach is back side of Ear.(I do not know weather it is Trans Lab or Retrosigmoid)
 

Dr. kalmon post (neuro surgeon), told me that chances of saving my auditory nerve is 70%, sujana Chandra sekhar( neurotologist) told me that chances of preserving my hearing is 0% ( Zero) and can not say chances of saving my auditory nerve till open the skull. Both suggested approach is back side of Ear. ( again from the back side there are 2 aapproaches. 1 . nearer to the Ear 2 far from the Ear.. she suggested Far from the Ear ( I do not know weather it is Translab or Retrosigmoid)

Couple of days ago I spoke to Dr. Brackmann (Otoloryngology) and Dr. Hitselberger (neuro surgeon) on phone of house Ear Clinic of Los angeles. I mailed out my MRI CD to them.
Brackman told me that his approach is Translab, with his experience Audirory Nerve cannot be saved
( chances are 0%) and he will put BAHA( Hearing instrument implant)



Question:

1) I heard Brackman is specialized in acustic neuroma, do exclusively acustic neuroma surgeries. but he is not giving me the hope. But how other neuro surgeons are giving me the hope?

2) does any body had implants of BAHA? what is your experience?

[krbonner]

With a translab approach you *will* lose all hearing.  It's a surgery that physically removes the auditory and vestibular nerves and some of the inner ear structures.  If some of the surgeons are suggesting your hearing can be preserved, it's not through a translab approach.

House Clinic does have extensive experience with ANs and has developed some of the techniques now in wide practice for AN surgery.  They are very skilled.  But that doesn't matter if you're not comfortable with what they're telling you.  If you truly want the best chance of preserving hearing, you need a surgeon who has experience with that particular outcome - which may or may not be House.  I don't think you'll ever be able to recover hearing - the damage is already done.  The surgeons are trying to preserve what is left.  If you want to increase your hearing capacity, you probably need to investigate the various options such as BAHA and the other aids.

Good luck!
Katie

P.S.  I chose a translab approach because my hearing was already gone (and wasn't coming back no matter what).

[Joef]

do you know how large the AN is?? .. generally the larger the size - the more chance you will lose your hearing ...
and if Dr. Brachmann wants to do a trans-lab .. I would bet its larger than 2cm ....(its his personal limit, unless hearing is good)

belive it or not .. if your hearing is only 20% (or less).. and the AN is larger than 2cm .. its not worth saving ... at this point you start to worry about facial neves and headaches .. and experince is key ... actually having only one good ear is not such a big deal ... I do have the BAHA which helps a little .. but even without it you get by ... the biggest problem is you can't locate where sound comes from .. and at 20% hearing, you might be getting that now....