Need Help Deciding - Experiences please!

[justducky]

My husband was recently diagnosed with AN. He has a 2.1 x 1.2 cm tumor on the right side, which we understand is considered a 'medium' tumor. He has very bad hearing already in that ear and hears very little. He has experienced some light-headedness and also some balance issues but has feeling so we understand that is good. We have been to 2 docs for opinions. One recommends radiation. The other recommends surgery.

We have been informed of the pros and cons of both, but we're curious of real people's experiences and outcomes. I tend to think surgery is the way to go, but my husband is starting to lean toward radiation because of the facial nerve potential damage (which is of course understandable).

Please if anyone can give us a little bit of what they have experienced both with surgery and radiation also, we would be very appreciative. We do know we need to make a decision soon.

[TJ]

Welcome,

Hope this helps a bit.  I had a 1CM AN and decided to have CK radiation.  The main reason that I decided on that is because I have poor hearing on the other side.  Having radiation was very easy "no down time".  Normal sessions are between 3-5, my doctor decided to do 5 so he could lower the dose of radiation each time which helps to save hearing.  Radiation was very easy each lasted about 45 minutes, I was able to drive myself and go to work right after.

Yes you are correct in saying that there are side effects for either surgery or radiation but looking at each for me the decision was easy to do radiation.  Also with surgery sometimes they have to leave some of the tumor to save facial nerves, in which case you have to have the radiation anyway.

Again hope this help!  Do your homework and make the decision that best fits you.

TJ

[Jim Scott]

Hi, and welcome ~

I'm sorry to learn of your husband's AN diagnosis but glad you discovered this website/forums.  

Your husband's AN is medium-sized and as you well know, there are distinct risks with either surgery or radiation.  I'll offer you my experience, for what it may be worth to you as you and your husband struggle with this crucial decision.

I was diagnosed with a large (4.5 cm) AN in May, 2006 when I was 63 years old.  Although the growing tumor had destroyed my hearing on the affected side (my left) I was in (otherwise) good health with no chronic medical issues.  I found a neurosurgeon that had decades of experience with AN removals and he proposed a plan that included 'de-bulking' the tumor via retrosigmoid approach surgery.  This amounts to hollowing the tumor out to a thin membrane that would be amenable to being destroyed by radiation.  This plan was intended to avoid unnecessarily disturbing the facial nerve and avoiding facial paralysis and related issues.  I underwent surgery in early June, 2006.  It was very successful.  I suffered no facial paralysis or other noticeable deficits.  I was released from the hospital on my fifth day and enjoyed a relatively rapid recovery.  90 days later, my doctor consulted with a brilliant radiation oncologist and together they 'mapped' my FSR treatment.  It amounted to 26 separate 'sessions' (approximately 40 minutes each) and was intended to destroy the remaining tumor's DNA.  The sessions were uneventful and I suffered no ill effects.  My follow-up MRI scans have shown necrosis (cell death) and slight tumor shrinkage.  Obviously, I'm delighted with the outcome.

Perhaps your husband is a candidate for this two-stage approach - but even if he isn't, I wanted to present you both with my experience, which is not unheard of, as an AN patient that went through both surgery and radiation - and came through both in splendid shape.  Of course I wish a similar outcome for your husband, whatever treatment he chooses.  

Jim

[justducky]

Thanks. I appreciate your response.

[justducky]

The doctors we have seen have only said "radiation" or "surgery". They haven't really identified the terms with any specific terms like some of you are mentioning cyber knife, and others. There is alot to absorb in order to make a good decision.

[Stephanie]

HELLO -

I had surgery, I had never had any type of surgery before, I didn't wan't to do it but I was told it was the best thing to do. I too was worried about the facial paralysis and loss of hearing on the tumor side. I had no signs of paralysis before but I did have migraines and severe dizzyness every single day. I also started getting confused and had some blurred vision.
I am not saying surgery is the way to go but my tumor was diagnosed as 1.7cm on the MRI, when they actually got in there they discovered it was 3.0 cm. Ultimatley it was good that I had it taken out when I did.
It has been 6 mo. for me and I am still recovering, just started back to work last month,it has been a long, frustrating recovery. There are so many dr. appt's & therapy visits just to get you back to a semi normal state.
I guess it really depends on the patients will and strength. It was rough for me to be so dependant on others, to have to walk with a walker or cane for months, dealing with my lop sided face and loss of hearing on that side.
But... I don't have migraines, or even regular headaches, I am very rarely dizzy anymore, I don't tip over when I walk, and I no longer have a tumor: )
It definately has it's pro's and cons. I actually found some video's on youtube of people's experiences that gave a lot of insite, I wish I had seen them before my surgery. I would have been a little better prepared for my results.

[CHD63]

Hi again .....

Sometimes I wish we had a crystal ball to see what our outcomes would be with whichever decision we made.  Alas, we can only do the best research we can, talk to many medical professionals and friends, and then ultimately it is the patient's decision on what to do when the responses conflict.

At 2.1 with the symptoms he has, he should have several options.  There are no guarantees with any of them.  So much depends upon an individual's response to either radiation or surgery.

Personally, I chose surgery for several reasons:  #1 I had had large doses of radiation following a tonsillectomy/adenoidectomy as a teenager #2 my tumor was deemed a rare, rapidly growing type and #3 I really just wanted it out of there and not worry what it was doing following radiation.  But that was my personal choice.  One answer does not fit all.

Best wishes and let us know what he decides.

Clarice

[Sue]

Went to get this link and lost my post.  Darn...hate it when I have to start all over again.

Hi!!

First of all, before I lose it somehow, this is the link I went to find. 

http://www.hearinglosshelp.com/articles/balancesystem.htm

This has a good explanation of what happens when a person's balance system is compromised.  This doesn't tell you what to do, but it certainly explains why we have the things that we have now.

Secondly, please tell your hubby that he can go to my blog (link down below) and skim over my lengthy AN experience  to see if any of that helps him.  I had radiation via Gamma Knife, mostly as that was the only game in town at that time.  Now we have a Cyberknife machine in the area, and I would certainly have looked at that option.  Both are radiation, but different delivery system. 

And thirdly, my only advice is to make sure that, whichever way he jumps for his treatment, make sure that the medical team is HIGHLY EXPERIENCED.  You want the best odds going in, and that will certainly make a big difference if you get people who have been around the block a few times.

Take care,

Sue in Vancouver, USA

[leapyrtwins]

I had the choice and was lucky enough to have a doctor (neurotologist) who did both procedures so he didn't "push" me in either direction.  In fact, he refused to make the decision for me.  I was hoping he would (the easy way out) and I asked him several times (was very persistent), but he was adament - telling me each time that it was a "personal decision".  Although it frustrated me at the time, he absolutely did the right thing and in the end I was thankful he didn't decide for me.  Today we laugh about that 

I originally thought I would have radiation (gamma knife) because it seemed like such a simple procedure and I thought there was no way I could be off of work or parenting duty (single mom of twins - age 10 when I was diagnosed) for the 6 weeks recovery time he quoted me.  I was also horrified by the prospect of 4-7 days in the hospital - I'd never had major surgery before; just outpatient surgeries.

But the more we talked about the follow up (regular MRIs to monitor the AN to see if the radiation was killing it) and the fact that side-effects may take 12-18 months to appear, the more I decided that I just wanted to have the damn thing out of my head and get on with my life.  Another factor may have been that the day I met my neurotologist he had a patient sitting in his waiting room who was there to discuss surgery with him because her radiation had failed.  Not something that happens a lot, but she was living proof that it was a possibility.  And, strangely enough, the prospect of having a metal frame screwed into my skull while I was awake was appalling to me - although later I went on to have a BAHA implant with only local anesthesia while I was wide awake and that didn't phase me at all.  Go figure!

My doc does retrosigmoid and translab and he let me pick my approach.  I chose retrosigmoid because although my hearing was diminished I still had decent word recognition.  I felt we should at least try to save the hearing I had and if we couldn't, at least we could say we tried.  Long story short, my AN was wrapped around my hearing nerve, it was severed, and I ended up SSD.

IMO I had an excellent outcome.  The first days in the hospital were very rough, but after that things got better.  I couldn't have done it alone though because of the kids; my mom and my sister moved in with us for a period of time while I got back on my feet.  My dad also helped out.  I had slight facial paralysis for a day or two post op (dose of steroids cleared it up); double vision post op lasted 2 or 3 days; nausea lasted 5 - 7days; metallic mouth, dry mouth, and dry eye lasted a few months; balance issues lasted a couple of weeks; fatigue lasted a long, long time (or at least it seemed that way).  I had no pain post op other than a stiff neck because it was bent for 7 1/2 hours of surgery.   I've never had a headache related to my AN.

This is just my experience; everyone is different.

I have never regretted my decision to have surgery.  It was the best choice for me.  And although I didn't realize it at the time, it was in fact the only choice for me.  My docs told me post op that my AN that measured 1.5 cms on my diagnostic MRI was at least 2x that when they did the surgery approximately 6 weeks later.  My neurotologist won't radiate an AN over 3 cms so I unknowingly picked the only option I truly had. 

Today I have an annual MRI which is enough for me; I wear a BAHA and am SSD, but beyond that life is the same as it was pre op.

Jan

[Tod]

Hi, and welcome. My advice, which probably isn't worth much since I am not a doctor and I have a brain tumor, is that each tumor/patient combination is very different. The location of the tumor, the quality of the tumor (stickiness,  blood supply), and the patient's overall health and attitude, all play a significant role.

The way I understand it, you have two doctors with two different recommendations. Given the size of the tumor, you probably have time to get a couple more opinions. That would be the course of action I would choose. When enough professionals start saying the same things, then the decision gets a bit easier.  had no choice between surgery types - it was essentially surgery or coma/death. And all the doctors said the same things. As on ENT resident said, "In your case, surgery is a no-brainer." Currently, I am Wait and Watch for a radiation when we decide it is necessary and appropriate.

I have no regrets about any aspects of this experience.

The House Ear Institute in L.A. will do an evaluation and consult for free. I think Dr. Chang at Stanford will do so as well. You really want recommendations on what is the best course of treatment for your husband's case.

I hesitate to describe my experience with surgery. Not because it was bad, but it because it was very much outside the norm. However, while I did wake up with left side facial paralysis, within three months it was unnoticeable to the normies. The fact is that sometimes things are more difficult than can be anticipated by the MRI. In my case, the location, the stickiness, and the blood supply, just made things horrendously difficult and the surgeons invested a lot of time (32 hours) in my case. Again though, I am an outlier. Lots of folks here have had surgeries in the 7-10 hour range with 100% removal.

Good luck to you and your husband. He's fortunate to have your support and involvement.

Tod

[jaylogs]

Hello and welcome to our little club...sorry your husband had to be here but this is a great place to find out all kinds of information.  I am not if someone has already point out the fact that you can request an information booklets from this website. I understand they are very informative.  As you have no doubt found out, there are different flavors of each kind of procedure that you can choose from, but a lot of times it is the doctor who goes with what they are comfortable with.  My doctor was good with middle fossa surgeries and given my diagnosis and my specifics he recommended that to me.  Yet, I had two other doctor wanting to do trans lab. So unless it is an emergency type situation (which fortunately it is not in your case) you'll probably get a different opinion from every doctor you'll see.  That's where it gets confusing and frustrating.  I could have done my surgery right in my own area by a well regarded clinic, but instead I chose to go to House Ear Institute (HEI). So it all boils down to in the end, whatever choice you make, and if feels right to you, then it's the right one! I hope we can help, also make use to the many past forum posts to help you guys make an informed decison! Good luck and keep us updated!
Jay

[cindyj]

Hello and welcome!  As you have learned and can see from these posts, there are many AN stories and many different opinions and options...the one thing that is the same in almost all of our stories, however, is that the treatment decision is just about the hardest part of the journey.  Fortunately, you do have time to make an informed decision, one that you and your husband are comfortable with.  You will know when you've made the right decision, he will feel it - really.

I also had all of the treatment choices, but ended up choosing surgery and choosing translab...I have not regretted the choice.  Yes, I lost my hearing on my AN side (which was perfect) and I probably will never become a high-wire or trapeze performer, but beyond that, I feel I can do whatever I want to do in life...and I try to do just that

Keep us posted and let us know any questions you have,

Cindy

[Mark241]

Hello and Welcome! I had a retrosigmoid surgery on my AN. Recovery was about 5 weeks, and returned to work. I have about 70% hearing loss in the ear, and no permanent facial weakness. I often wondered if my AN was smaller would I opt for radiation treatment. I still think I would have gone for the surgery, simply because I wanted the damn thing out of me. As you can read from all of our stories, were all still here, and doing well.     

[justducky]

Thanks for your info. What is "retrosigmoid surgery"? Is that just where they remove it? or is it a special type? How large was your tumor?

[Jim Scott]

Thanks for your info. What is "retrosigmoid surgery"? Is that just where they remove it? or is it a special type? How large was your tumor?

Retrosigmoid s the another name for 'sub-occipital' - a specific surgical 'approach' to the AN.  This page from the ANA website should help explain it: http://www.anausa.org/index.php?option=com_content&view=article&id=117&Itemid=115 (scroll down for surgical approaches).

Jim