Hopkins vs. House

[jamcats]

Hi all,

I'm new to the forum and very confused right now. My husband was diagnosed in December with a medium-sized AN and severe hearing loss in his right ear. We have done a lot of research and decided on surgery. We met with a neurosurgeon, neurotologist, and radiation oncologist at Hopkins and were happy with the people we met and felt comfortable with them. Plus, they have a great reputation for ENT and neurosurgery. We thought it would be a good idea to get an opinion from someone at another institution so we sent his images to House and talked to Dr. Slattery there. He supported everything we had learned at Hopkins except that he was adamant about translabyrinthine approach while the docs at Hopkins (Lim and Chien) were planning retrosigmoid. On to my questions:

Does anyone have experience with Dr. Lim or Dr. Chien at Hopkins?

Any opinions on translabyrinthine vs. retrosigmoid if there is some hearing but no intelligibility?

For people who traveled to House, did you go after just one phone consult without actually meeting the doctors? It seems strange to have a single phone consultation with a neurotologist and head across the country to be operated on by people we've never met, but we've read a lot about how wonderful House is so we're wondering if that is really how people do it. We still don't know what insurance will end up covering or if House will be an option, but we're trying to figure it all out.

Thank you so much!

[JerseyGirl2]

For people who traveled to House, did you go after just one phone consult without actually meeting the doctors? It seems strange to have a single phone consultation with a neurotologist and head across the country to be operated on by people we've never met, but we've read a lot about how wonderful House is so we're wondering if that is really how people do it.

I agree that it does seem strange .... but I live in New Jersey and that's exactly what I did! I'll add that it was probably the best medical decision I've ever made. I'll also add that, as soon as he announced my diaganosis, my local otolaryngologist advised me to go to House, so that made me feel a bit more at ease about planning my treatment based on a single phone consultation.

All that being said, please remember that there are excellent AN doctors all around the country with legions of satisfied patients, as you've no doubt noticed from reading this forum.

Best wishes as you plan your strategy.

Catherine (Jersey Girl 2)

[CHD63]

I have to ditto what Catherine said.

I live in the eastern half of the U.S. and flew to Los Angeles to have Drs. Friedman and Schwartz at House do my AN surgery.  I had two conversations with Dr. Friedman on the phone before going.  Like Catherine, it was the best medical decision I have ever made.

Also, like Catherine, in 2008, my local ENT said in his mind House had the best reputation for having the most expertise in surgical removal of ANs.

Regarding translabyrinthine vs retrosigmoid ..... most neurosurgeons will recommend the approach they know how to do best.  That being said, if a patient's hearing is virtually gone anyway, the translabyrinthine approach gives the best view of the facial nerve and often the best view of the tumor itself.  It does sacrifice any remaining hearing, however.

I had retrosigmoid approach at Duke for my first tumor removal, but it regrew (very unusual!) so I went to House for my second removal, which was via translabyrinthine.  It is not a fair comparison, but I recovered much more quickly from the translab surgery.  Please understand that this does not mean that would be the case for everyone!  Thankfully, I had no unusual problems with either surgery.

You might want to go back to the opening ANA Discussion Forum page and type Hopkins into the search box for others who have gone to Hopkins.

As Catherine said, there are many good physicians around the country.  Just be certain that the surgeon has a long history of successful acoustic neuroma removals specifically.

Best thoughts and many prayers.

Clarice

[arizonajack]

My husband was diagnosed in December with a medium-sized AN and severe hearing loss in his right ear.

Welcome to the club. Lot of great people here with lots of information.


How old is your husband?

What are the dimensions of the AN?

How much hearing is gone? Enough so that it's not serviceable with a hearing aid?

[jamcats]

Welcome to the club. Lot of great people here with lots of information.


How old is your husband?

What are the dimensions of the AN?

How much hearing is gone? Enough so that it's not serviceable with a hearing aid?

Thanks for the encouraging responses. We were impressed with the docs at Hopkins, and the neurosurgeon specializes in this area of the brain (mostly trigeminal nerve issues?), and does about 1 AN removal per month, which is not many compared to the House docs, but overall he does many brain surgeries in that area. Can someone explain why it is important to specifically have AN experience vs. experience with other tumors/nerves in the same area?

To answer questions:
My husband is in his early 30s.
The AN is 2.5 x 2.6 x 2.2
He has no intelligibility right now. Not sure if a hearing aid would help, but probably just the kind that would send sound to the other ear.

Thanks again!

[kmr1969]

Jamcats,

I live in MD and Hopkins was my first consult after being diagnosed by my ENT doctor with an AN.  I met with Dr. Francis and Dr. Weingart at Hopkins.  I liked them both, but what led me to fly across the country to House was experience.  Not that the Hopkins doctors weren't experienced, but their experience paled in comparison to Drs. Brackmann and Schwartz.

I will say it was inconvenient to be away from home for 2 weeks and obviously going out of town resulted in numerous expenses that I could have avoided had I stayed in MD.  From a standpoint of follow up, it was a little scary to come home and be 3,000 miles away from my doctors in LA, but they check you out pretty thoroughly before you are released and thankfully I had no problems.

I had a very good experience at House.  Would my experience have been better, the same, or worse at Hopkins?  Who knows.

Remember, if you choose Hopkins you can still choose a different doctor if you want.  I know one gentleman who had his AN surgery (very successful) at Hopkins after he met with/interviewed every single one of their neurosurgeons with AN experience.  He chose the last one he met with to be his doctor for the surgery.  So, if you like Hopkins, but weren't 100% sold on the doctors you met with, call back and make appts with other doctors.  When you and your husband feel 100% comfortable with your team then you know you are ready.

Best of luck to you and your husband.  I know it seems overwhelming, but you can and you will get through this together.

Private message me if you would like more information.

Ken

[cindyj]

I will echo what Catherine, Clarice and Ken have said...flew to House and was so glad I did.  When I was first diagnosed I thought the idea of flying across the whole country for surgery was the most ridiculous thing...afterall, I live in Atl with many great hospitals and surgeons.  But, fly across the country I did...

We are all different and have different situations and needs - you will know what's right for you when the time comes,

Cindy

[mindyandy]

Jamcats
I have to agree with what everyone has said. I am a House alumni and I did fly there after a phone consultation with Dr. Friedman. I also corresponded with him via email. March 7th it will be 1 year post op. Yippee.......
My situation is a bit different if you read my past posts. I don't want to go into details because my fingers will get tired...ha ha
The ultimate choice is your husbands and yours. There are many great surgeons out there. Do your homework. I personally wanted a surgeon who does AN surgeries weekly. House does a few a week. I know on my surgery day I was the first patient and there was one other lady who had her AN surgery. So for sure I know they did 2 that day. Keep in mind it is major surgery and no matter how skilled our outcomes can all vary. Your husband will be in great care no matter where he goes.....but I'm bias....I say HOUSE 

Take Care
Mindy

[CHD63]

jamcats .....

Perhaps someone else answered your question about the importance of surgeons needing to have much AN removal experience, specifically .....

1) ANs are relatively rare
2) ANs form when the Schwann cells (outer covering of the nerve) on the vestibular nerve, which is a branch of the auditory nerve, begin to overgrow and form a vestibular schwannoma (acoustic neuroma).  The auditory nerve (VIII) and the facial nerve (VII) both run through the auditory canal, where the tumor originates.  This is a very long, narrow area so the longer the AN grows, the more it fills up this area and begins to move toward the brainstem.
3) The more experience a surgeon has, the better he/she knows how to preserve the delicate facial nerve during surgical removal.
4) The experienced surgeons have seen many different consistencies of acoustic neuromas (some are very "sticky," some are more encapsulated) in a very small surgical working area.

Remember, I am not a doctor, but I have learned a great deal from my own experience with two surgeries and researching as much information as I can.

Clarice

[jamcats]

You are all so helpful. Thanks.

Turns out we have an HMO and House is out of network so surgery there wouldn't be covered, which is making us look harder at making it work here. We're also considering that we have two toddlers and are nervous about logistics of traveling across the country for 2 weeks without them. I've been trying to set up appointments with additional surgeons, and now have more questions:

Did you go to and ENT/neurotologist first who then recommended a specific neurosurgeon, or did the neurosurgeon send you to the neurotologist? Or did you find both on your own?

I think we went about it backwards because we made appointments with a neurosurgeon and a neurotologist before meeting with either of them, instead of having one refer us to the other. Now I tried to make an appointment for a second opinion with a neurotologist at Hopkins, and the person answering the phone said they normally don't do second opinions within the same office, which makes it seem like, if we stick with Hopkins, our only choice for neurotologist is the first one we met, who seemed good but has only been out of his fellowship for a little over a year.

It makes a lot of sense that we want someone who has a lot of specific experience (does that mean over 50 AN removals? over 100?), so we're trying to find that.

I'll be relieved once we finally make this decision, and even more relieved when the surgery goes smoothly...

[annamaria]

Folks,

Our services at JHUH were very  favorable.

Annamaria

[kmr1969]

Jamcats,

My ENT made the apt with Dr. Francis, the neurotologist, and Dr. Francis made an apt for me with Dr. Weingart, the neurosurgeon.  He was very comfortable with Dr. Weingart and that was who he wanted to work with on my surgery.  I guess I understand the receptionist's comment about not giving 2nd opinions on their own opinions, but that is really not what you are looking for - you know it is an AN.  What you are trying to do is select the surgical team that you and your husband feel most comfortable with using.  Maybe if you explained that to the receptionist it would make more sense to her.  You are trying to interview the person who is going to perform brain surgery on your husband.  If you run into problems, I would send an email to the head of neurosurgery and ask for his help.  This is not a time to be shy.  Believe me, they want your business, so you are in control of this situation.  In my opinion, you want to pick the person with the most successful experience that you can find.  I don't know if there is any magic number, but I wouldn't want to deal with anyone who has done less than 100 of these surgeries and currently is doing at least 20 each year.

You should also consider an appointment at the University of Maryland Medical System.  I went to them for a evaluation for radiosurgery and the radiation oncologist, Dr. Kwok, was very honest with me - basically telling me he would do radio-surgery (his specialty if I wanted him to), but if I were his brother he would tell me to do microsurgery.  I really appreciated his candor and honesty and it was after that appt that I knew microsurgery was what I was going to go with, even though it caused me a lot of anxiety.  I met with a neurosurgeon there (Eisenmann? Eisenberg?) and he seemed to know his stuff as well.

I know it seems hard to do, but you are very lucky to be in Maryland and have Hopkins and UMMS right in your backyard.  Take your time to take advantage of these experts.  When you are ready you will know it.  Have you considered Gamma Knife instead of microsurgery?

Ken

[nftwoed]

Hello;

   At Mayo, a Neurotologist and Neurosurgeon work as a team so the referral was made to the Neurotologist first.
   Re, residual hearing with no speech discrimination, it still offers a sense of physical orientation and of sound direction.
   About RS vs TL, I am recalling HEI developed and perfected TL, but historically, generally more RS, AN surgeries have been performed using the RS approach.
   Re RS vs. TL, it seems RS is more invasive and many suffer more surgical, post op side effects.
   As you are in physical approximation to JHH, that to me seems very appropriate considering it's history and ratings, but so does Mass. General. Los Angeles is a long way away! They may offer  translab with a more experienced neurosurgeon at Mass. General?
   Best wishes in your decision!


  first

You are all so helpful. Thanks.

Turns out we have an HMO and House is out of network so surgery there wouldn't be covered, which is making us look harder at making it work here. We're also considering that we have two toddlers and are nervous about logistics of traveling across the country for 2 weeks without them. I've been trying to set up appointments with additional surgeons, and now have more questions:

Did you go to and ENT/neurotologist first who then recommended a specific neurosurgeon, or did the neurosurgeon send you to the neurotologist? Or did you find both on your own?

I think we went about it backwards because we made appointments with a neurosurgeon and a neurotologist before meeting with either of them, instead of having one refer us to the other. Now I tried to make an appointment for a second opinion with a neurotologist at Hopkins, and the person answering the phone said they normally don't do second opinions within the same office, which makes it seem like, if we stick with Hopkins, our only choice for neurotologist is the first one we met, who seemed good but has only been out of his fellowship for a little over a year.

It makes a lot of sense that we want someone who has a lot of specific experience (does that mean over 50 AN removals? over 100?), so we're trying to find that.

I'll be relieved once we finally make this decision, and even more relieved when the surgery goes smoothly...

[annamaria]

Neurosurg Focus. 2012 Sep;33(3):E14. doi: 10.3171/2012.6.FOCUS12163.

Surgery for vestibular schwannomas: a systematic review of complications by approach.

Ansari SF, Terry C, Cohen-Gadol AA.

Source

Goodman Campbell Brain and Spine, Indiana University Department of Neurological Surgery, Indianapolis, Indiana 46202, USA.


Abstract


OBJECT:

Various studies report outcomes of vestibular schwannoma (VS) surgery, but few studies have compared outcomes across the various approaches. The authors conducted a systematic review of the available data on VS surgery, comparing the different approaches and their associated complications.

METHODS:

MEDLINE searches were conducted to collect studies that reported information on patients undergoing VS surgery. The authors set inclusion criteria for such studies, including the availability of follow-up data for at least 3 months, inclusion of preoperative and postoperative audiometric data, intraoperative monitoring, and reporting of results using established and standardized metrics. Data were collected on hearing loss, facial nerve dysfunction, persistent postoperative headache, CSF leak, operative mortality, residual tumor, tumor recurrence, cranial nerve (CN) dysfunction involving nerves other than CN VII or VIII, and other neurological complications. The authors reviewed data from 35 studies pertaining to 5064 patients who had undergone VS surgery.

RESULTS:

The analyses for hearing loss and facial nerve dysfunction were stratified into the following tumor categories: intracanalicular (IC), size (extrameatal diameter) < 1.5 cm, size 1.5-3.0 cm, and size > 3.0 cm. The middle cranial fossa approach was found to be superior to the retrosigmoid approach for hearing preservation in patients with tumors < 1.5 cm (hearing loss in 43.6% vs 64.3%, p < 0.001). All other size categories showed no significant difference between middle cranial fossa and retrosigmoid approaches with respect to hearing loss. The retrosigmoid approach was associated with significantly less facial nerve dysfunction in patients with IC tumors than the middle cranial fossa method was; however, neither differed significantly from the translabyrinthine corridor (4%, 16.7%, 0%, respectively, p < 0.001). The middle cranial fossa approach differed significantly from the translabyrinthine approach for patients with tumors < 1.5 cm, whereas neither differed from the retrosigmoid approach (3.3%, 11.5%, and 7.2%, respectively, p = 0.001). The retrosigmoid approach involved less facial nerve dysfunction than the middle cranial fossa or translabyrinthine approaches for tumors 1.5-3.0 cm (6.1%, 17.3%, and 15.8%, respectively; p < 0.001). The retrosigmoid approach was also superior to the translabyrinthine approach for tumors > 3.0 cm (30.2% vs 42.5%, respectively, p < 0.001). Postoperative headache was significantly more likely after the retrosigmoid approach than after the translabyrinthine approach, but neither differed significantly from the middle cranial fossa approach (17.3%, 0%, and 8%, respectively; p < 0.001). The incidence of CSF leak was significantly greater after the retrosigmoid approach than after either the middle cranial fossa or translabyrinthine approaches (10.3%, 5.3%, 7.1%; p = 0.001). The incidences of residual tumor, mortality, major non-CN complications, residual tumor, tumor recurrence, and dysfunction of other cranial nerves were not significantly different across the approaches.

CONCLUSIONS:

The middle cranial fossa approach seems safest for hearing preservation in patients with smaller tumors. Based on the data, the retrosigmoid approach seems to be the most versatile corridor for facial nerve preservation for most tumor sizes, but it is associated with a higher risk of postoperative pain and CSF fistula. The translabyrinthine approach is associated with complete hearing loss but may be useful for patients with large tumors and poor preoperative hearing.

[lkrk]

I just had translab approach at Mayo last week. 5 hour surgery.  I had a 1.5 cm tumor with 70% hearing loss prior. My doctors attribute success to my tumor being smaller and that it was not vascular in nature and it was not sticky as many tumors seem to be.  I do not have facial paralysis!  I put a note about it on the forum.  I am very happy with my results.  I am having eye issues with focusing though. I need to be patient as I am only on day 9 after surgery.  Good luck!

Lauren