Second Opinion from House Ear Clinic - NZ AUS newbie

[margaretm]

Hi,

This is my first post. It is good to find a forum like this.

My partner has just been diagnosed with an Acoustic Neuroma. We are trying to get as much information as possible before he makes a decision about the sort of surgery he has and would be grateful for any help anyone out there can give.

As he still has most of his hearing in that ear he would like to preserve it if possible. We have seen a specialist here in New Zealand who seems to be quite experienced but we are keen to get other opinions before going ahead with surgery as this surgeon favours the translab method which would sacrifice the hearing.

We get the impression that the House Ear Clinic is the top place in the world and wondered if anyone out there could tell us their story of treatment there. And, quite importantly, the cost involved. We will have to pay for the op so would be good to know what sort of fees talking about as expect US more expensive than New Zealand.

Tumour is on right side and 1.5cm. Has slight high frequency hearing loss, mild tinnitus and lightheadness. He is 36.

Thanks for taking the time to read this.

Margaret

[opp2]

Hi Margaret,

Welcome to you and your honey. I believe that Joe Bloggs (?) had surgery at an eye and ear institute in Australia where the surgeons are also top drawer. I'll let her expand on her experience as well. I nearly went to House last year, but opted to wait and seek the opinion of more Canadian Surgeons. I was pleased to find a very good surgeon here as well, but believe me, I had my surgery booked in California.

Good Luck in your searches. I'm sorry your honey was diagnosed with AN but you've come to the right place for research. There are some amazing people here to help you along the way.

Nikki

[margaretm]

Thanks Nikki, If Joe Bloggs (?) from Australia or any other Aussies or Kiwis are out there, we'd love to hear from them. Sam is Australian (but currently in NZ) so Australia is also an option for treatment.

[kiwi]

Hi Margaret

I'm a kiwi and I had translab 3 1/2 months ago in Auckland.  I think NZ is just as good as any other place in the world to have surgery.  I came through this without too much of a hitch, a few complications but to be expected with a large tumour. I'm 38, have a bit of facial weakness which is showing signs of improvement already.  I am back at work and also working out like a demon again.  Can't thank my surgeon Dr Hamish Sillars enough.

Jacqui

[Jim Scott]

Hi, Margret - and welcome!

Although I'm sorry to learn of your partner's AN diagnosis I'm pleased that you found the ANAUSA website and decided to make use of the message forums.

Unfortunately, I have no information to offer you on the questions you asked because I've never been to New Zealand or Australia (I hope to visit one day) and I didn't have my surgery & radiation at HEI in California.   However, I wonder if your partner has considered (non-invasive) radiation to address his acoustic neuroma.  At 1.5 cm, it would very likely be amenable to irradiation which would offer a much better opportunity to retain his hearing.  I realize you and your partner may have considered this already and decided on the surgery, instead.  Just a suggestion. 

I'm pleased to see folks in your part of the world are responding to your request for information.  I trust the replies will be helpful to you. 

Jim

[Brookes]

Hi,

This is my first post. It is good to find a forum like this.

My partner has just been diagnosed with an Acoustic Neuroma. We are trying to get as much information as possible before he makes a decision about the sort of surgery he has and would be grateful for any help anyone out there can give.

As he still has most of his hearing in that ear he would like to preserve it if possible. We have seen a specialist here in New Zealand who seems to be quite experienced but we are keen to get other opinions before going ahead with surgery as this surgeon favours the translab method which would sacrifice the hearing.

We get the impression that the House Ear Clinic is the top place in the world and wondered if anyone out there could tell us their story of treatment there. And, quite importantly, the cost involved. We will have to pay for the op so would be good to know what sort of fees talking about as expect US more expensive than New Zealand.

Tumour is on right side and 1.5cm. Has slight high frequency hearing loss, mild tinnitus and lightheadness. He is 36.

Thanks for taking the time to read this.

Margaret

I don't know if this will be helpful or not, but I am pre-op for translab surgery with doctors from House Ear.  Because House Ear is out-of-network for my PPO I needed to know the cost and it's being estimated at $200K-$250K      (To be clear, that's not just House Ear but also the hospital care which is at St. Vincent across the street.)  I obviously can't tell you about treatment but I can tell you that the doctors, and really the entire staff, are taking extraordinary care of me so far.

[lamplight]

I just had retrosigmoid surgery done in Adelaide Australia on Monday (yes, only 5 days ago!). and got discharged this morning. It was a 3.5 to 4cm AN but it seemed to be  complete removal with only some facial weakness I which hopefully will improve over the next few months.  I think I was very lucky as had no dizzeness or nauseau and unbelievably I'm only on panadol with no real pain, just some tension. Early days though. I was quite worried about surgery here, particulary being in a small city and the fact that my operation got postponed a month so I had some extra time to stress about it. I was thinking about getting it done in Perth where they have a good rep (the Ear Institute) and I'm originally from WA -  or in Melbourne which is also meant to be very good but in the end stuck with Adelaide. I guiess I took the gamble that I'd always end up kicking myself if it didnt go well. Thankfully that doesnt seem to be the case. It was on the public system too, as my health insurance didn't cover it. I would say that Australia has the level of skill and care to do it well - Melbourne might be an option for you if you don't want it done in NZ.
Hope this helps  - send me a direct message if you want more info (I did quite a lot of obsessing about this over the last few months!)

[Sonja]

Margaret:

I am sorry to hear of your partners AN. I can not shed light on the cost at House Ear Clinic (HEC) as I have Blue Cross Blue Shield which covered the cost and have negotiated rates, which by the way are much lower than the $200k - $250k cost I saw posted.

I would like to share that I had Translab surgery at HEC in February 2009. I of course lose my hearing which I knew that going in to surgery. I elected Translab because I was interested in saving my facial nerve as I had no serviceable hearing in the affected ear (right side AN). I had a wonderful experience at HEC. The process was very well organized, I always got answers to my questions in a timely matter, and the surgeons were not only excellent at what they do but also had great bedside matter.  My surgery took about 6.5 hours which also included BAHA surgery. MY AN removable was a bit complicated as my tumor had wrapped itself around the facial nerve. Even with that I had no paralysis to my AN side. With the exception of no tearing in my right eye, no hearing in my right ear (as stated this was expected) I have fully recovered. I feel as if I have all my balance back (left side has compensated), all my cognitive ability, and I feel great. I can even sleep on my AN side now (which took about a year). Sometimes it is hard to believe I had brain surgery just over a year ago.

I had eight consultations and HEC was the most impressive (I went from the East cost to LA for this surgery). Plus HEC had the most experience and performed the most surgeries per year for AN's. JHU would had been my second choice.

HEC is well worth looking at for your surgery. You will be in good hands. If you have any questions please feel free to contact me.

Sonja

Good luck and

[srmccreary]

In a nutshell I had surgery for 2.7cm AN after failed radiation. (I know radiation success statistics, so not much is said about failed radiation or paralysis from radiation.) I was told at emory in Atlanta they couldn't get all of the tumor so I had one shot radiation and tumor continued to grow. As you know surgery is more difficult after radiation. My surgery was in 2001 and House Ear was able to get ALL OF THE TUMOR  and I have not had any regrowth. Also, their statistics for preserviing facial nerve are astounding. Unfortunately I had paralysis going in so they couldn't help me there but after numerous MRIs I have no regrowth of tumor. Also note that with translab procedure there are fewer headaches which I can attest to. A CONSULT AT HOUSE EAR IS WORTH THE TIME in my opinion: I just wish I had known about them when I was diagnosed; I would have had surgery to start out with. The reality is when tumors regrow after surgery elsewhere, patients are often sent to House Ear. There should be a law that doctors have to tell people about centers of excellence rather than doing surgery and sending patient to center of excellence when the tumor grows back. As my surgeon told my family after surgery: we got it all; she is cured. And he was right; the tumor is still gone. However I I still live with the effects of radiation and surgery after failed radiation. Of course I would add that I am not familiar with surgeons outside the U.S. I'm sure there are many good ones. The important thing with ANs is that the surgeon have a lot of experience. The neurosurgeon who did my surgery had 30 years experience. Ask how many they have done! House uses a team of one neurosurgeon and one neurotologist or ENT surgeon. As for the cost it was ten years ago so it has probably gone up. My insurance paid all if it although I had House do a detailed documentation to send to the insurance company to preapprove. The only issue was an extra surgeon that was available at surgery that wasn't covered but since I had my plan in writing was able to resolve that.