How many tumors swell after SRS

[Josepe]

This is of vital importance to me. I just had a consult and my tumor is in the canal with the other nerves. I have lost a great deal of function as measured in my facial nerve. It is working find but according to the surgeon, it cannot take much more pressure before I start feeling the effects. They want to go in Translab but I will lose hearing in that ear. I am primarily concerned about my face though.

[JWW]

Josepe,

If you have not made an appointment with a qualified radiation oncologist, do so before making ANY further decisions! Your tumor is so small. Don't be talked into surgery, aka: Translab just yet.

JW

[Josepe]

Thanks JW. Is it standard practice for the surgeon to scare you be saying you are young and they don't know the effects of radiation down the road. Also that tumor resection after radiation is out of the question because of scarring from the radiation - I am inclined to believe that one.

[Jim Scott]

Josepe ~

Unfortunately, your AN most likely will swell following radiation.   How much is not predictable.  I would suggest you seek a second opinion before making your treatment decision.   

Jim

[leapyrtwins]

Thanks JW. Is it standard practice for the surgeon to scare you be saying you are young and they don't know the effects of radiation down the road. Also that tumor resection after radiation is out of the question because of scarring from the radiation - I am inclined to believe that one.

I've never heard it's standard practice for a surgeon to "scare" anyone about radiation - and I would be shocked if that was the surgeon's intention.  I do believe though that most surgeons will tell you to treat your AN surgically, and that most radiation oncologists will tell you to radiate it.  Docs tend to recommend what they do.

Also, surgery after radiation isn't out of the question.  Lots of people who have radiation without necrosis end up opting for surgery.  Happens often.

Jan

[It is what it is]

Since you still have hearing, is the middle fossa an option?  I just had that surgery through HEI and they were able to preserve the hearing I had at time of surgery.  It may be well worth sending your MRI out to some more medical centers like House in order to get more information.  It is free with no obligation.  I wish good things for you and respect your desire to obtain more information as you make your decision as to treatment.   

Karen

[Josepe]

Thanks all,

Jan - I am sure you are right about the surgeon. I was a little harsh and may have mistook honesty for scare tactics - I was scared when I left the appointment. I have gotten confirmation of what you say about doctors recommending what they do. My surgeon was more concerned about scarring from radiation if I wanted to operate afterwards.  I know it is my decision, but it would be nice to have an impartial professional that could give a recommendation.

Karen - the surgeon did not want to go middle fossa because of the exposure to the facial nerve. He said that is his primary focus at this point. I have hearing in that ear but it is very distorted. I hear hissing and high pitched voices sound like Minnie Mouse. I would be willing to live with that at this point though. My concern is the facial nerve also. My balance nerve on the left side has picked up the slack but this is not possible with the facial nerve.

Here's what it comes down to: Do I roll the dice with radiation? I think I will be closer to the answer after talking to an RO.
Thanks again for your posts.

[It is what it is]

HEI carefully monitors the facial nerve throughout surgery.  Their statistics on preserving facial nerve functioning are excellent.  My tumor grew into the facial nerve and they very carefully removed most of the tumor without compromising the nerve.  Post surgery I had very slight facial weakness that is already resolving 27 days later.  If your hearing on the affected side isn't very functional, it might make more sense to use another type of entry. 

Good luck with your continued search. 

Karen

[mk]

Thanks all,

 it would be nice to have an impartial professional that could give a recommendation.

If it helps at all, 4 out of the 5 neurosurgeons that I consulted with regarding surgery of my radiated tumor said that in the hands of an experienced neurosurgeon previous radiation does not present worse odds.  Most of them were most concerned with the size of the tumor. Only one of the neurosurgeons (the least experienced with ANs, his specialty was brain aneurysms) gave me a high chance of paralysis because of the radiated tumor.
I asked my surgeon after the surgery if removal of my AN was more difficult and he said that in some areas it was easier than average and some areas more difficult.  I once read an HEI publication (unfortunately I don't have it readily available) which pretty much admitted between the lines that there was no statistically significant difference in the outcomes when the tumor had been radiated previously. For the record I didn't experience any facial issues.
Regarding middle fossa, given its difficulty very few doctors (including the HEI doctors) are really qualified in doing it with high rates of success. This is why your doctor may not have recommended it, if he does not feel skilled in this type of surgery.

Marianna

[leapyrtwins]

Jan - I am sure you are right about the surgeon. I was a little harsh and may have mistook honesty for scare tactics - I was scared when I left the appointment.

I remember that scared feeling quite well.  Only in my case it was because my doc insisted on telling me every single side-effect that I could possibly encounter from radiation and surgery no matter how small the possibility was.  He wanted me to be able to make an informed treatment decision.  At the time it scared the hell out me - but it was a necessary part of my AN Journey and I eventually thanked him.  His honesty made us both feel better 

Jan

[Josepe]

Jan,

Thank you. I am in West MI. The only otoneurologist in town is booked through the end of the year. I wanted a second opinion from him but can't even get that for 6 weeks. I need to get moving as I have met the deductible for my insurance. Any recommendations? Also, how is the BAHA working for you and were you able to get your insurance to pay for it? I am not familiar with HOUSE or HEI that were mentioned in that other posts.

[leapyrtwins]

HEI (House Ear Institute) is located in Los Angeles; HEI basically pioneered AN surgery.  LA is a long way from Michigan, but people from all over the world go to House for surgery.

At the time I was diagnosed I had never heard of House, I was referred to a local neurotologist (Chicago area) by my ENT; so thankfully I had an excellent doctor right in my own backyard.  Even if I had heard of House, it's highly doubtful I would have gone there - too long and expensive a trip, work and family obligations, etc.

My neurotologist is Dr. Robert Battista, Ear Institute of Chicago (www.chicagoear); he practices with another excellent AN doctor Dr. Richard Wiet.  Dr. Battista does both radiation and surgery, and he did my BAHA implant.  He and Dr. Wiet also do CIs (Cochlear Implants); Dr. Wiet did the first CI in the state of Illinois.   The Ear Institute of Chicago is certified by the ANA as a Center of Excellence. 

You have some excellent doctors in Michigan - see the ANA's list.  There's MEI (Michigan Ear Institute) and the U of MI has a facility.  Off the top of my head Dr. Telian is a great doctor; there are more.

I love my BAHA (implanted March 2008) and fortunately it was paid for by my insurance company.  They dragged their feet several months and I had to jump through a few hoops, but that was before Cochlear had an insurance division that helps BAHA candidates get insurance approval.  It's my understanding that Oticon also has an insurance division now.

I recommend the BAHA is everyone who is SSD, but realize that it's not for everyone.  Some don't want another surgery after their AN surgery - although the two surgeries are COMPLETELY different - and some are opposed to having a titanium rod implanted into their skull.  While honestly that did give me pause initially, I decided it was a "non-issue" for me and opted for the surgery.  I've never regretted it.

Jan 

[MCTMF]

Hi Josepe,

I am in West Mi as well and trying to decide on surgery or radiation. My tumor is considerably larger 2.5 cm and I am leaning toward radiation. I have had 3 opinions from Nuerotologists. 2 recommended surgery, one recommended at least consulting with a radiation oncologist. The appointment was eye opening and somewhat comforting. I'm still a bit nervous, and have one more appointment with a neurosurgeon who works with the nuerotologist before making a final decision.

I was initially scared away from radiation, but have since done some research on my concerns -(secondary malignancy later on) and have learned that the chances are very small. -Also the RO recommended fractionating the radiation as to deliver a smaller dose over time and protect healthy tissue around the tumor.

[grammyslim]

I do not know where you live but you should contact Dr. Teh at Methodist in Houston.  He is in the Radiation Oncology Department and an amazing Doctor.  He did my procedure this past May.  Totally explained everything and made me totally comfortable with my decision.  I also conferred with Dr. Trask (Neurosurgeon).  I could have gone either surgery or radiation after I got all the facts from both of them as well as my ENT specialist - it was easy to make a decision.  Yes, the tumor will swell - mine has but I already knew it would so  NO issue - also Dr. Trask and I discussed the surgery aspect if the radiation did not work and yes it MIGHT be difficult after radiation but but it also might be difficult with surgery (read some of the stories here)
I tell you after an explanation of the surgery and recover process it was not hard to pick radiation.  As far as the long term effects of radiation vs surgery (really think about what could happen with the surgery) I am confident with my choice.  All our AN's are different and we are different - just sayin - talk to as many Doctors as you can and make your decision based on what THEY tell you - there are no Doctors on this board (that I know of) and we all have our stories - mine is one of success without surgery.
Good luck in your decision.

[Denise S]

Josepe & MCTMF
   I just had to chime in to say hi, I too am from West Michigan (Ludington)

What doctors have either of you seem so far?

Denise S