Author Topic: Where to go--suggestions for AN surgeons?  (Read 2389 times)

paganini

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Where to go--suggestions for AN surgeons?
« on: December 05, 2017, 05:24:39 pm »
Hi everyone.  I was recently diagnosed with an acoustic neuroma two weeks ago on my left side. I know I need to have it removed within the near future, despite it not being very large (.9cm).  I'm struggling with deciding on a doctor and location-- have had several suggestions, but need more answers.  Any advice would be greatly appreciated.

I plan on sending my info to House Ear Clinic and also visited Drs. Telechi and Morcos in Miami.  Any experience with any of these doctors? I'm overwhelmed and would greatly appreciate any and all input.  Many thanks.
« Last Edit: February 19, 2018, 11:02:39 am by paganini »

paganini

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Re: Where to go?
« Reply #1 on: December 06, 2017, 04:06:19 pm »
Thank you for your reply.  I have 65% hearing loss in my left ear.  Slight tinnitis, and vertigo that comes and goes, but is not debilitating. One of neurosurgeons I spoke to said he would not wait past 6 months to have it removed.  I never read it stopped growing once diagnosed.  I thought I should only expect it to grow more.  With that being said, I didn't want to prolong something until I was older (I'm 41).

Director

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Re: Where to go--suggestions for AN surgeons?
« Reply #2 on: December 07, 2017, 08:34:30 am »
AN Sydney- I showed the study you reference to the ANA Medical Advisory Board for their feedback. I want to caution that tumor growth, while typically slow, can also vary widely. In addition, there are other factors that may lead a patient to choose surgery or radiation for a small tumor.
Paganini, we are here to help- please let us know what we can do for you!
Allison Feldman
CEO, ANA

alabamajane

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Re: Where to go--suggestions for AN surgeons?
« Reply #3 on: December 07, 2017, 08:00:31 pm »
Hi Paganini,,
I sent my MRI out to House before having surgery in Alabama more for personal reasons than any reason concerning House. I believe them to be excellent doctors and had a wonderful consult with Dr Slattery. I did not request him but he contacted me. I never talked to another doctor out there. He even called me one year later to see how I was doing,,, not even knowing I had had surgery. Very concerned and caring!

I think you , and anyone for that matter,, would be well served to get an opinion from them. There are also other doctors and facilities who will also provide the same complementary consult, I just don’t have that info handy. Others may chime in with it though.
I don’t have personal info on the Miami doctors either. Maybe someone else can help you there too.

It’s a hard decision to make but you have time on your side. Talk to doctors and heed their advice. We only offer personal experiences and non medical advice. ( except Allison) ,,,, only you can decide how to proceed for your symptoms and preferences.

Good luck and Happy Holidays,,
Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

paganini

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Re: Where to go--suggestions for AN surgeons?
« Reply #4 on: December 09, 2017, 07:19:33 pm »
Thank you all for your suggestions and information.  I really appreciate it.  It's so nice to know there is a group of individuals who have been through this too and can offer so much insight!  My neurosurgeon's office here in Miami called and said after having met with their team and reviewed my case, thought it best to wait six months and have another MRI.  I was happy to hear that.  I am sending my info to House on Monday and will hear their opinion as well.  I'm not in a rush to have the surgery, obviously, so if the consensus is to watch and wait, I will do so. 

I will look into the above link and see what other doctors also recommend.  My symptoms (vertigo and hearing loss) progressed greatly when I was pregnant with my first child (5 yrs. ago), then the vertigo went away.  It came back and hearing loss continued with my 2nd pregnancy (3 yrs ago) but due everything else in life, I never went back to the ENT to get an MRI. I really thought it was just a symptom of pregnancy and possibly genetic, since everyone in my family has hearing loss. I finally addressed the issues recently with an MRI and got the diagnosis. So, it's safe to say, slight hearing loss started 8 years; vertigo and progressed hearing loss started 5 yrs. ago. The vertigo was only present at the end of my pregnancies though, and two other times for a very short period of time.
« Last Edit: December 09, 2017, 07:33:41 pm by paganini »

Director

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Re: Where to go--suggestions for AN surgeons?
« Reply #5 on: December 11, 2017, 07:52:58 am »
ANSydney,
  The ANA Medical Advisory Board is aware of this study AND has several notes of caution, including this response:1. This article is a review, and to critically understand a review, it is important to have familiarity with the source material.
2. We all have some biases as to what we think, and while we all clearly recognize bias toward surgery or radiosurgery, I would suggest that the Denmark group has a bias toward observation. Their whole academic interest and reputation is based upon this.
3. The definition of tumor growth used by the Denmark group is very liberal. For instance, they do not consider an intracanalicular tumor to be growing until it grows out of the IAC; that is, a tumor that grows in the canal from 3mm to 8mm is still in the non-growing group.
4. Looking at references, they cite studies showing high rates of non growth without making it clear that these are very selected groups of patients. These selected groups are not representative of all patients diagnosed with ANs. For example, see reference 16, from the House Clinic.

Having said all that, we do see patients with non growing tumors, so obviously some do stop growing. The trouble is knowing which ones these are.

An experienced physician with good judgement may be able to select which tumors can be safely followed, even if they are initially growing slowly, with the hope that growth has a good chance of stopping.

On the other hand, for one patient to generally encourage other patients to disregard doctors’  advice to treat growing tumors with the expectation that growth will probably stop is in my opinion dangerous. This is a very one-sided reading of a very complex literature.
I encourage all patients to explore to the fullest all treatment options.
Allison

tonyc

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Re: Where to go--suggestions for AN surgeons?
« Reply #6 on: December 12, 2017, 07:13:04 pm »
Paganini,

The size of AN is a factor. Its position and other factors are also very important. The Dr. in House recommended surgery must have his argument. The Drs in House had been in this field for many years. Each individual case can be very different. Choosing a particular approach all depends on your judgement.

Dr. Brackmann is very experienced and knowledgeable. He answered all my questions and relieved all my concerns before and after the surgery. He and Dr. Marc Schwartz did middle fossa on my AN in March 2016. From my footnote, you can see my results.

One thing I want to remind you that Dr. Brackmann is an ENT doctor. A neurosurgeon is equally important and sometimes can be more critical for the surgery. Dr. Schwartz is a very famous neurosurgeon and he is about to do his 2000th AN surgery. But he left the House and is in UC San Diego with Dr. Rick Friedman.  Dr. Lekovic in House is also good and you can find cases mentioned in this forum. I didn't meet him personally and can't tell much. Whoever you choose as your doctor, you need to build trust with them.

08/18/2010, first vertigo episode and tinnitus, 9mm AN found in left ear. Wait and Watch.
1/20/2016,  AN increased to 13mm.
3/21/2016, Middle Fossa at House with Drs. Brackmann/Schwartz/Stefan. Entire tumor removed, no facial issues, hearing preserved, gradually regain balance through daily walks.

paganini

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Re: Where to go--suggestions for AN surgeons?
« Reply #7 on: December 17, 2017, 08:33:39 am »
Thank you, all, for this valuable information. I sent my MRI to House and am waiting to hear from them. I will continue to update and question as I hear more. I’m sure I will have many more questions...

SusanMC

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Re: Where to go--suggestions for AN surgeons?
« Reply #8 on: January 09, 2018, 11:09:46 pm »
Hello Paganini, I realize it's across the country for you, but I highly recommend Dr. Manuel Ferreira at University of Washington Medical Center in Seattle. He is the Chief of Neurosurgery, and Acoustic Neuromas are one of his specialties. I am 6 weeks out from having a 4cm tumor removed. It was a complex operation because it affected 8 cranial nerves, and I am really thankful for the approach he took. In doing my research, he really is top-notch. If you're not able to travel to Seattle for the surgery, perhaps he or his staff could recommend someone in Miami. Good luck!

SeattleAN

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Re: Where to go--suggestions for AN surgeons?
« Reply #9 on: January 18, 2018, 07:34:57 pm »
Hello Paganini, I realize it's across the country for you, but I highly recommend Dr. Manuel Ferreira at University of Washington Medical Center in Seattle. He is the Chief of Neurosurgery, and Acoustic Neuromas are one of his specialties. I am 6 weeks out from having a 4cm tumor removed. It was a complex operation because it affected 8 cranial nerves, and I am really thankful for the approach he took. In doing my research, he really is top-notch. If you're not able to travel to Seattle for the surgery, perhaps he or his staff could recommend someone in Miami. Good luck!

Hello SusanMC,

I am also from Seattle, and my husband recently discovered AN. We are seeing Dr. Ferreira on the 30th. Would you share the experience with him as your surgeon? We would love to learn more about him. Thank you in advance.
- Hearing loss on right ear starting Oct 2017
- MRI done Dec 2017 - Discovered 3.6X3.4X2.9 CM with cysts
- First consultation with Dr. Schwartz and Dr. Farrokhi Team at Virginia Madison - Suggest Immediate surgery
- Seeking second opinions

JackDuich

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Re: Where to go--suggestions for AN surgeons?
« Reply #10 on: February 08, 2018, 02:37:42 pm »
I understand House Clinic is well regarded and had a teleconference with a Dr Miller after I sent in my MRI & test results. 40% hearing loss on right ear, tinnitus but no vertigo or balance. Tumor is 7mm x 9mm so is considered small.
Miller recommended translabyrinthine surgery with severing of my balance nerve which would destroy my remaining hearing & cause ~2+ months of dizziness.

I think this sounds pretty extreme. DukeHealth in the Raleigh / Durham area indicates gearing restoration is possible with middle fossa but I haven't spoken with them.

 The gamma knife is not recommended for anyone under 65 (I'm 63) and House mentions gamma causes scar tissue that makes future surgery more complicated, if they have go to in later.

Anyone have any comments?

thanks - Jack
 

rupert

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Re: Where to go--suggestions for AN surgeons?
« Reply #11 on: February 08, 2018, 09:09:27 pm »
Sure, I'll comment.  Whom ever told you Gamma Knife is not recommended under age 65 either has no experience or has an agenda.   Lots of people  under 65 have GK.   The translab procedure  mentioned does present the best view of the tumor and is usual treatment  if most of your hearing is gone.  Keep on researching Jack. Eventually you will find a team that you're comfortable with.  Good luck to you.

paganini

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Re: Where to go--suggestions for AN surgeons?
« Reply #12 on: February 19, 2018, 11:11:16 am »
Hi Everyone,
Just an update on my original post. I sent my information to House and Dr. Wilkinson called me.  He was wonderful and took his time with all possibilities for my situation.  He suggested watching and waiting since my AN is not interfering with day-to-day life.  I do have hearing loss (65%) but that will only worsen after surgery since they will sever the nerve.  My vertigo is minimal (only when I get up from lying down and just a few seconds).  It's not interfering with my quality of life or daily tasks.  The same week, the doctors I saw at Univ. of Miami (Teleschi and Morcos) called with the same conclusion. Dr. Wilkinson also assured me the team of doctors here in Miami are top-notch, so I'm in good hands wherever I go.  I will repeat an MRI in April to see if the AN has grown.  If not, I will continue to monitor and hope for the best.  Thanks for all the input thus far.

Pam Taylor

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Re: Where to go--suggestions for AN surgeons?
« Reply #13 on: June 11, 2018, 10:18:44 am »
I have an AN, symptomatic, which has grown in the past year to 1.0 to 1.8 cm. I live on the Gulf Coast and was referred to Moises Arriaga in New Orleans, LA. I am scheduled for translabryinth  surgery August 23rd at West Jefferson Medical Center, Dr. Frank Culicchia.  Does anyone have any experience with this neurosurgeon? Thank you

 


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