surgery option with Dr. Jho

[RGG]

Hi Everyone,

I'm 34 years old, from Toronto, Canada, and was diagnozed with a 3x2cm AN a few months ago after experiencing worsening hearing loss and some facial symptoms.  I still have some hearing, between 30-40db loss in some frequencies and 60-80db in others, and my other main symptom is a burning feeling on the side of my tongue.

I've accepted that I'll need to have surgery, as radiation was not recommended due to brainstem compression (though I can if I really want to).  I've seen two surgeons in Toronto, both of whom only recommend translab surgery. Also they've said for my tumour size, there's around a 30% chance of facial nerve deficits afterwards. One of the surgeons told me I need to accept there is a 1% chance I will really regret having the surgery, meaning death, paralysis, etc.   

I was interested in the potential for hearing preservation, and also less invasive surgery options, and did some research into endoscopic surgery options. I consulted with SBI, and Dr. Jho in Pittsburgh.  Unfortunately not having insurance in the US, SBI is out of reach, but surgery with Dr. Jho is a lot more affordable.

What I'm uncertain about is the approach that Dr. Jho recommended.  He wants to do a 2-stage approach, involving a first endoscopic surgery (only about 3hrs) to reduce the size of the tumour in order to take away pressure on the brain.  He said he would take out 50-90% of the tumour, but would not try to remove anything around the nerves and brainstem.  He gave me a >50% chance of hearing preservation and a low chance of any temporary facial nerve deficits following this surgery, as well as a reduced chance of any serious brain damage as compared to trying to remove the entire tumour at once. Then he suggested waiting a year to see if the remaining tumour starts to grow again, and then either doing a second surgery, or radiation. 

I was wondering if anyone here has had AN surgery with Dr. Jho? I searched on the site, and saw that people had consulted with him, but didn't see anyone who had the surgery with him.  When I asked him, he admitted he doesn't do too many AN surgeries currently, but he is very experienced with endoscopic surgeries in general.

Secondly, has anyone taken a similar approach of not removing the entire tumour and waiting to see if it regrows, or having a two-stage surgery? Does anyone know if doing a second surgery on a partially removed tumour is more or less difficult?  I'm not sure of any statistics about how often AN's keep growing after debulked. I'm thinking that if I'll need to have two surgeries, or surgery and radiation, then I would probably lose my hearing anyway, and maybe it's not worth it.  On the other hand, if the first surgery happens to be enough and there's no further growth, that would be the best case.   

I feel like either approach I take can go well or very badly, and I'm sort of at a standstill.
 
I also got a referral for Dr. Akagami in Vancouver, whom I read on this forum that quite a few Canadians have gone to, and also gives a chance for hearing preservation.  But it's been a month and I still haven't gotten a consultation appointment, so not sure if I'll have time to wait to see him.

Any viewpoints or suggestions are highly appreciated

Thanks for reading,

Rumen   

[Director]

Hi RGG,

There are doctors who choose to 'debulk'- the lead medical article in our September, 2015 newsletter is on this topic: Gross Total vs. Near Total vs. Partial Resection Surgery
Email me if you would like me to send you a copy or set you up with a membership. PLEASE make some appointments for additional consults, ensure the surgeons have a lot of experience with Acoustic Neuroma. We have questions to ask your surgeon on our website as well: www.anausa.org.
Best wishes,
Allison

[Jet747]

RGG,

I had a similar 2 phased treatment, partial resection via retro sig (May 2015) followed in 5 months by gamma knife radiation (October 2015).

My tumor was incredibly large and was surrounded by 4 cyst.  I have no clue if it was the approach or surgeon or both or some other factor but I managed to keep >90% of my hearing on the AN side.

I believe a key detail is the fact my Dr. only deals with AN's and has done thousands of surgeries over 20 years.

So far the outcome for me has been great but I really won't know if my hearing will be maintained for sure for 2 years post gamma knife.  All of our tumors are different and all of our biologies are different so it is hard to make general statements about the efficacy specific to a given approach.

Good luck in your decision process and feel free to email if you have any specific questions.  I've posted a relatively thorough synopsis of my experience on this forum under "37 year male...Chicago"

Best wishes,
Jet747

[RGG]

Thank you Allison and Jet for your replies and advice. 

I read the newsletter Allison referred to, and will definitely do some more research on the partial resection approach.  Dr. Jho actually gave me the options of having a second surgery one year later to remove the rest of the tumour, having radiation, or watch and wait to see if it starts growing again. I've read papers saying that a second surgery after debulking is more difficult, and others saying it's easier.   This approach will give me a chance to keep some hearing in the best case, but will drag on longer, and hearing preservation might be wishful thinking.   

I will keep researching, unfortunately there aren't a lot of doctors up here in Canada to choose from, so I don't have too many options. 

Thanks again,
Rumen