Just found out GK/CK is not an option :( I need surgery :(

[Phillies]

After doing many tireless hours of research on the internet trying to figure out if Gamma or Cyber Knife is better, I had two consultations this week and learned that with AN compressing on my brain stem surgery is going to be the best option. I already had it set in my mind that surgery wouldn't be needed, so this is a little hard to swallow. My AN is 2.6 x 2.5 x 2.5 and I have zero balance issues and my hearing in my AN ear isn't that bad. My hearing is very much servicable and I can't even notice any hearing loss. Now the thought of having to now lose most of my hearing is hard to take. To think that I can have pretty good hearing one morning, get surgery and wake up with no hearing just sounds terrible. Are there any people out there who at least come out of surgery with SOME useable hearing??   

[MNTim]

Phillies,

I know how you feel.  After my first surgery (emergent, 5 cm tumor), my surgeon said radiotherapy was an option.  I considered that as saying no more surgeries.  After the three month MRI I was told that the tumor was too large for radiation.  That was a punch in the gut!

Whether you experience reduced hearing and balance issues is dependent on the type of surgery that you have.  I have had two of the three microsurgeries.  My first two were retrosigmoids which are less likely to affect hearing and balance.  I feel I had minimal hearing loss and balance issues.  The third surgery was a translab.  Because it directly affects the ear on the tumor side hearing is totally eliminated and balance issues occur.

The main thing to remember is the tumor needs to be removed no matter how it is accomplished.  You can make up for hearing loss and balance issues but a tumor that continues to grow can be life threatening.

Best of luck.
Tim

[opp2]

After doing many tireless hours of research on the internet trying to figure out if Gamma or Cyber Knife is better, I had two consultations this week and learned that with AN compressing on my brain stem surgery is going to be the best option. I already had it set in my mind that surgery wouldn't be needed, so this is a little hard to swallow. My AN is 2.6 x 2.5 x 2.5 and I have zero balance issues and my hearing in my AN ear isn't that bad. My hearing is very much servicable and I can't even notice any hearing loss. Now the thought of having to now lose most of my hearing is hard to take. To think that I can have pretty good hearing one morning, get surgery and wake up with no hearing just sounds terrible. Are there any people out there who at least come out of surgery with SOME useable hearing??   

Hi Phillies,

I was in a very similar situation as you. My tumour was 2.8x2.5 when found and it was also compressing the brain stem. I had very good hearing and was told no radiation for me because of the brain stem compression. I had surgery in Vancouver, retro sigmoid approach with Dr. Akagami. I did lose my hearing...just like that, here (or hear) today, gone tomorrow. I haven't really had that hard a time overcoming the loss of hearing. I believe it is because I'd spent so much time researching I was pretty certain what to expect. It can be really frustrating, but not something that has affected my left dramatically.

That being said, I also had no balance response on the tumour side before I had surgery, thus no recovery from loss of balance nerve after. This really helped a lot.

[FlyersFan68]

From one Phillies fan to another just stay focused on the bigger picture. You have a brain tumor compressing on the brain stem! Find yourself a good surgeon and worry less about the hearing. Your other ear will get you through just fine. It just takes time to adjust. I speak from experience. Also, odds are higher that you would have eventually lost most or all your hearing over time with radiation anyway. The smaller tumors have much better hearing preservation rates with both surgery and radiation...FACT!

[mk]

I would tend to agree on the hearing issue. I was pretty much on the same boat as you when diagnosed, with hearing intact and no other significant symptoms. However somehow I was advised that GK could be done. Well, radiation is not as favourable for hearing preservation with larger tumors anyway, and I did end up losing most of my hearing within the 3 year period afterwards. Plus the growth didn't stop, so I had surgery anyway. Out of all of the AN consequences, I would rate hearing loss as the least bothersome. You get used to it, and if not there are solutions like the BAHA.
Try to take a step back and look at the wider picture, if your doctors are concerned about brain stem compression this is a very valid concern. Plus with larger ANs there is always the concern that they may respond to radiation by swelling, causing all sorts of serious problems. The most important thing is to consult a lot so that you can be confident in your decision and to find a competent team that will be able to address your AN, while leaving as few complications as possible.

Marianna

[leapyrtwins]

Phillies -

the amount of hearing you can expect to be left with post op depends on the surgical approach.  Your best odds are with mid-fossa, but I'm guessing that this approach isn't an option for you due to the size for your AN.  Retrosigmoid gives you the next best possibility; translab usually leaves you with no hearing in your AN ear.

There are much worse things in life than being SSD - having been that way for almost 4 years now I can attest to that.  But, I also have to say that prior to my BAHA implant, my SSD made me miserable.  Just my personal experience, but I couldn't function without my BAHA.

Jan

[Phillies]

So basically I should go into the surgery, whenever that may be with the thought that my hearing will be gone and if I wake up afterwards and learn there is some hearing, I will thriilled. Or with my hearing good now, maybe I should have some kind of going away party for my right ear hearing this summer? Very depressing that surgery that will remove the tumor can also do so much damage...     And I really need to stop spending my Friday night sitting here reading all these message boards... 

[opp2]

From your frustration, sounds to me like you are already starting the grieving process for your hearing. We all get angry about it. And yes you should lay off the boards from time to time. It can be overwhelming reading too much. There are many of us who have been in your shoes. It absolutely SUCKS!!! We go from sailing along, minding our own business, living our lives to whamo! Huge decisions to make, each with huge consequences, and you have to choose the lesser of the evils.

In the end though, I chose to accept that while I will likely be deaf, all the other rotten side effects I was having would go away. I hoped and hoped, and talked to my ear, and wished my surgeon luck. And I still had to deal with the prospect of facial paralysis and was fortunate to have suffered no weakness.

Be angry Phillies. Have a good cry when you need to, sing in the shower, and work out until you are sweatin', and then, return to researching until you find the best surgeon for you. You will make the best choice you can with the information provided to you. And with a little luck on your side, and the right surgeon, you never know. All you can do now is stack the odds in your favour.

[MNTim]

Phillies,

I think the key piece right now is determining the correct procedure to remove the tumor.  For my second procedure I was more concerned about having a damaged facial nerve than removing the tumor.  The surgeon was conservative and left much of the tumor and I still had nerve damage and also a third surgery.

As was stated earlier their are microsurgical procedures that are easier on hearing than others.  If you read some of the radiation posts you will see these side effects can occur with most procedures.  The location of the tumor is the issue.

We have all experienced what you are going through and have adapted to the negative outcomes.  I think most will say these possible side effects are better than the alternative.

Best of luck on your decision.

Tim

[jbbrown15]

Could you get a few more consultations?  My first two consultations at two very highly respected hospitals (Univ of Penn and Thom Jefferson Univ) led to me having radiation (when my internet research had me thinking surgery was the best option for my 2.9 cm tumor in my 33 year old brain).  Now I know that other neurosurgeons would have recommended surgery, and I wonder if maybe that would have been the better option.  By the way, I also have brain stem compression.

I wish now that I had spent more time making my decision and gotten more opinions.  Having spoken with school acquaintances who are in neuro-related fields, I now understand that some facilities are more conservative and some are more progressive when it comes to surgery vs. radiation. 

Good luck to you.  If you are in Philly, feel free to PM me.

JB

[Tumbleweed]

I agree with JB. Two consultations are not that many. Although brainstem compression is a big concern, I would not rule out radiosurgery and accept losing your hearing without first consulting a leading expert in radiotherapy. (I don't know who you already consulted and if they were specialists in GK or CK; maybe you've already consulted the best.)

Dr. Steven Chang of Stanford U. Medical Center will review your MRIs and other test results for free and offer his recommendation. His email address is sdchang@standord.edu. He has performed hundreds of CyberKnife treatments on ANs (probably around a thousand by now) and  also performs neurosurgery on brain tumors. See what he says before you give up on your first choice of treatment and accept severe hearing loss or deafness. Your other two doctors may be right in saying you need microsurgery, but consulting Dr. Chang is worth a shot. He won't recommend CK if he feels you're not a good candidate for that type of treatment.

Best wishes,
TW

[Phillies]

I actually did contact Dr. Chang last weekend. I was surprised to get a reply from him on a Sunday night. I mailed out my MRI and documentation but the answers I got were not really what I was looking for. I was told that I was a candidate for radiation, but no doctor told me I wasn't. It's just that most of the doctors, but not all, felt that with the brain stem compression and with a cystic tumor that GK or CK would not be very effective. A few of the doctors thought that with radiation I'd still wind up losing my hearing over the next few years any. I asked Dr. Chang if he felt that CK might be a better choice over surgery with less change of complications and issues and he didn't really give me an answer either way. He played it down the middle and bascially left it up to me to decide which one might be better. Then after I saw Dr. Sisti at Columbia last week I think I will be going with him for the surgery. I was very impressed with him. He told me that he does more radiation than surgery but he was so certain that surgery was the better option for me that he wouldnt do radiation even if I wanted it becasue he couldn't do something in good consience that he felt wasn't the best treatment for me...

[sgerrard]

If Dr. Chang was not willing to say otherwise, he probably sees some risk in doing CK as well. I would probably have gone with surgery too, if he had not been enthusiastic about CK for me. I also noted that he responded to my email on a Saturday, and learned later that he is so busy during the week, he only has time for email on the weekends. Hope it goes well.

Steve

[jbbrown15]

Phillies - How about those runs tonight?!?!?!?!

I see your update about Dr. Chang.  I had missed your detail about it being a cystic tumor.  I don't know what that means, but I know that mine is not cystic.  Sounds like you have all the information you needs now to make the best choice possible.  Good luck to you. 

[Tumbleweed]

Hi, Phillies:

I agree with Steve. I think you've made a good choice. The fact that Dr. Sisti does both radiation and microsurgery makes his opinion carry a lot of weight because it presumably removes any bias that a specialist who performs only one type of treatment might have. And also the fact that he would only agree to perform the treatment he performs less often for his patients is another sign, I think, that microsurgery is your best choice. (Otherwise, he would've recommended what he usually does for most of his patients; in your case, he obviously felt there were some extenuating circumstances.)

Sorry to hear that radiation -- your initial first choice -- wasn't your highest option. But it sounds like you're in good hands. And you should find at least some comfort in the fact that you did your due diligence and have arrived at a well-reasoned and deliberate decision.

Wishing you the best outcome,
TW