Is the cure worse than the condition?

[ombrerose4]

You are so right! Although the doctors di mention the possibility of headaches post-op, they never explained how severe and debilitating they could become. As someone who has been suffering from these HEADACHES for 8 months now, I think doctors need  to be more forthcoming with their patients. I would have still had the surgery, (didn't have much choice since it was leaning against my brainstem), but I would have been much more agressive in those first few months with seeking headache treatments, instead of thinking it would soon pass.

[Rivergirl]

Wow, Capt Deb, thank you so much for your honesty.  I am in watch and wait and have not lost my hearing, my balance nerve is cooked, I have tinnitus, pressure, headaches occasionally, some trigeminal pain but I can put up with it for now, because sometimes the cure is worse and I am not ready for that.  I understand that at times there is no choice but for as long as I can W &W I will.  I hope you have have found peace with your new normal, keep fighting.  Thank you all for your wonderful advice, I so needed it.

[Tracy Lynn]

Now that I'm post-op I can truthfully respond. I can't say that my post-surgery sensations are "worse", definitely different.

I had all but lost my hearing, and the Dr told me I wouldn't notice the difference. I lost my directionality. I notice the loss more now when in loud places, and when I'm driving my car with the window down, anything that blocks out my good ear. I think it was only a matter of time before I lost it if I hadn't had surgery.

I wasn't dizzy pre-op, and I still fight that 5 weeks post-op. Its a slow acclimation.

The only thing that truly drives me bonkers still is the chronic dry mouth and partial taste loss. I'm still praying for the day that significantly improves/returns altogether.

I think the fear of not knowing to what extent I would have left the tumor to grow had I not had surgery was worse than the surgery itself. From reading everyone's posts, I still feel lucky that I haven't had complications like CSF leaks or facial palsy.

Perhaps I may feel differently down the road, but I 'm glad I had surgery,  just wish I'd have had my hearing tested earlier so we could've possibly saved my hearing.

[GaryWNT]

Rather than asking a new question, I searched and found this old thread. As the last posts were back in 2010 and knowing that over those five years there have probably been great advancements in surgical practices, I'm curious about how people who have had more recent surgeries would respond. I'm about to be 66 years old. I have been diagnosed with a 2.5-2.8cm acoustic neuroma in my left ear. I have minimal symptoms . . . a bit of hearing loss (but still 100% word recognition) and some tinnitus. I ride a motorbike daily, so I guess my balance is ok. All the doctors I've consulted have said "it has to come out". I am grateful for their care and want to believe them. It's only one month since I've been diagnosed and I'm still researching. I may decide to wait 6 months and have another MRI. OR, I may decide to schedule the surgery sooner. I know each case is different and I suppose someone who opted not to be treated wouldn't be represented on this forum. I'm still struggling with what life might be like post-surgery. I hope revisiting this thread isn't the wrong thing to do, but I do still hope responses will be helpful.
Thanks for everyone's patience as I (and others) work through the decision making process!
Gary

[mcrue]

Thanks for reviving this thread.

It just confirms my decision to "Watch & Wait."

I believe at the end of the day only "you and your family" really have your best interest at heart. Do all your research and make a wise decision that benefits you.

Thanks to everyone who contributed and shared their story.  After reading some of these horror stories, now I know what they mean that an AN can be a terrifying diagnosis. It seems like it's one big gamble regardless of how much research you do. There will never be any guarantee when it comes to AN's.

[Echo]

I read all the posts on this thread, and found the topic extremely interesting.  I think the strongest message one can gain from reading this thread (whether you are considering surgery or radiation) is to not jump head first into any treatment until you do your research.  This message is as important today in 2015 as it was in 2010.   

Thanks for bringing this thread forward.

Cathie

[Kerrybr92]

I guess you can say I jumped into surgery.  According to the doctors I consulted that was my only choice.  But I was much better before than I am after, even fours years later.

I was slowly losing my hearing and that was my only symptom.  I was 39 at the time of diagnosis.  The doctors thought that with my age and size of the tumor that it would eventually need to be removed.  So I did it.

I don't necessarily regret it because I too think that was my only choice but I do wish I was better prepared for the recovery.  Although the issues of headache, hearing loss, facial paralysis, balance issues, dry eye and more were touch upon before the surgery I just never grasped it.  I would do more research now if I could do it over again.

[leapyrtwins]

My cure wasn't worse than the condition.

Had retrosigmoid surgery on 5/31/07.  AN was 3+ cms

Only permanent "side effect" is SSD - and I addressed that with a BAHA implant 9 months post op.

Life is great - and it's exactly the same except that I need "help" with my hearing.

Although surgery isn't the best choice for everyone, it definitely was for me, and I've always been (and continue to be) happy with my decision.

I consulted with one doc (a neurotologist who does both surgery and radiation) - knew he was the "guy" for me and never looked back.

The decision for the BAHA implant (also performed by my neurotologist) was one of the best I've made in my entire life; no exaggeration.

Jan

[michellef08]

I know I am a rare case - but I have actually gotten more benefits from my surgery than harm!

I had my tumor removed 2+ years ago, and now I no longer have headaches and motion sickness (which I did before my surgery). My slight loss of hearing and mild tinnitus are exactly the same, so I call that a wash. My balance and facial functions have remained the same as before surgery. The one thing that I had read on here was that I probably shouldn't ride roller coasters - which I have yet to try. I am going to Disney next week though, so I will see? But if that is the only thing that I can't do anymore, it was well worth it to know that I no longer have a tumor in my brain.

 I would definitely re-iterate what people have been saying that you need to do as much research as you can until you make a decision that feels right for you.

I know there are a lot of "horror stories" on these threads, but there are also positive success stories too! They are much less common, but they are out there!

[PaulW]

Rollercoasters..
If anything with a stuffed up balance nerve I find roller coasters and other rides, and boats far less a problem now than I did before...

Call it an advantage of an Acoustic Neuroma.

[GaryWNT]

I truly appreciate the responses to revisiting this thread. I continue to do research and enjoy a relatively symptom free life. I guess that is what makes the decision to have surgery so challenging.
Gary

[marine64]

Hi guys, new guy here and just got diagnosed.  Can anybody tell me if University California San Francisco or Stanford is better with this issue.  My tumor size is 3.5mm x 9.5mm is this considered small or large?  Thanks

[mcrue]

Hi guys, new guy here and just got diagnosed.  Can anybody tell me if University California San Francisco or Stanford is better with this issue.  My tumor size is 3.5mm x 9.5mm is this considered small or large?  Thanks

Since you're talking millimeters your tumor is considered small. At this stage, I am exactly 1 month post Gamma Knife and I'm happy I had it done.

Hopefully the Gamma Knifwe did the trick with minimal side effects. Only time will tell.

[ishootstuff]

I'll chime in and say I'm definitely worse post surgery, but I didn't really have a choice. I'd love to go back to partial hearing loss and slight imbalance/tinnitus.

[caryawilson]

4.5 CM tumor and my removal definitely had it's challenges: SSD, facial nerve was removed during surgery, ringing in ears, eye problems, facial numbness (inside of mouth and on the side of the face), etc...

Honestly, I couldn't be happier.   Clearly I would rather not have my issues, but these are the cards I have been given, so I now need to "play the hand".

At 4.5 CM, my only choice was surgery.  The tumor was going to kill me.  So in my case, the cure was NOT worse than the condition.  After surgery there was a chance I would be on a feeding tube for the rest of my life.   So why complain.. I'm NOT on a feeding tube.