Depression

[Mark]

Scott,

Personally, it sounds to me like you've got a surgery happy doc who doesn't really understand the other options at all. Maybe someone else can enlighten me but I struggle to understand docs who make the comment that the AN was too close to the brainstem. AN's vitually always start somewhere in the internal auditory canal and then expand into the cerebellpontine angle. Unless the AN is large or starts in an odd place further down the 8th cranial I don't see how it's too close to the brain stem for radiosurgery. In my opinion, in most situations it's a misinformed comment by a surgeon which borders on being a scare tactic. In your situation as you've described it, you are dealing with a small residual tumor which I would really question the surgeon's ability if it's still a brainstem concern to him. Obviously, you have to do what you're comfortable with, but I would take your MRI's to someone who actually does and understands radiosurgery.

Good luck

Mark

[msuscottie]

Thanks Mark, I may just do that. I started out with a 3.5cmAN which had actually burrowed itself in to my brainstem, and now it's around 8-10mm sitting just off the brainstem. My neurosurgeon does seem a little surgery happy, but my otologist has always seemed to have my best interest in mind, so I'll make sure I have a heart-to-heart with him before making any decisions. Obviously, I know how much surgery sucks, but what is radiation like? Probably another thread all together, but it is a lot better (easier) than surgery, or just less invasive?

By the way, If anyone is interested in reading about my experience, I have it available by email. It's about 10-12 pages, but It recounts my experience pretty well. If you're interested, just email me at sryan@villagegreen.com and I'll send it on to you.

Thanks again everyone,
Scott

[dgrummer]

Just to add another opinion about radiosurgery.  We were STRONGLY urged by our original NS and our recent ENT to talk to someone who did both surgery and radio surgery.

We saw a total of 5 surgeons (4 NS and 1 ENT).  Two of the 4 NS also performed radiosurgery and they both ruled it out because of the size of my husband’s tumor and it is compressing the brain.  One suggested using it only if they weren’t able to get the entire thing. HOUSE dismissed it because they were confident they would get the entire tumor.

But having talked to someone who did both we feel much better about not choosing radiosurgery as an option.  Our ENT – who will be one of the doctors to perform the surgery said he felt radio-surgery will truly change the way they treat AN’s in the future – but for now it’s not the answer for everyone.

As one of our doctors told us – you could probably find someone to treat you with radio surgery – but that doesn’t mean that is the right answer.  So – again – be careful and get as many opinions as you can.  Maybe you'll find it is the right answer for you.

[Mark]

Scott,

Obviously, everyone can have a good or bad outcome and experience from either surgery or radiosurgery. However, in general, after having both monitored this board as well as talked with many AN patients over the past 4 years there is absolutely no doubt in my mind as to which treatment is easier to go through. In my case, I had zero effects from the actual treatment followed by some relatively minor vertigo episodes during the first 2-3 months. There are others who have varying degrees of transient nausea and feeling tired but overall that is less common. Personally, I don't think there is any comparison to the physical trauma to the body that surgery produces. There are a variety of issues that are consistently debated in terms of what decision people ultimately make in terms of treatment, but there is little disagreement which is less physically impactful. I would add that I'm speaking as someone who had CK. If you go with GK, you do have to have the frame screwed into your head which I understand isn't very pleasant.

Mark

[shoegirl]

Hi all! I am so happy that I found this forum. I appreciate everyone's honesty.  I am just recently diagnosised.  I am very scared, depressed, anxious, and have lots of other feeling too.  It is all so confusing.  One thing I found that really bothers me when people ask your about your tumor and you tell them it is benign - they seem to think it is no big deal?  I don't understand this? You mention the possible treatments and they think since it can be "treated" that life will be good and you shouldn't worry.  Very frustrating.  Anyone else get this from family and friends? It makes me want to exclude them from everything and pretend everything is fine.

[nannettesea]

Hang in there, Suzanne.  I know, I was elated when they found it and told me it was benign and treatable...then I did the research and was terrified.   I, too, was anxious, depressed and suffered terrible dizziness/imbalance to boot, which made it harder to advocate for myself with docs, etc.

Though I agree, it didn't help when people said "thank God it's not cancer."  No, that is something to be grateful for, but treatments are frightening.

As many before me have said, BE SURE you see the best docs possible who are all very experienced with either surgery or radiation.   The House Ear Clinic in LA will review your tests for free and give an opinion. I didn't go there, couldn't afford it, but have still been communicating with their docs post-surgery.

If necessary, get help for your depression, meds or counseling.  I am doing that.
Nan

[jamie]

One thing I found that really bothers me when people ask your about your tumor and you tell them it is benign - they seem to think it is no big deal????  I don't understand this? You mention the possible treatments and they think since it can be "treated" that life will be good and you shouldn't worry.  Very frustrating.  Anyone else get this from family and friends? It makes me want to exclude them from everything and pretend everything is fine.

I guess everybody's different, but in my case it was me who played everything off as no big deal. My family and friends were all very concerned, even after I assured them it was a benign thing. It frustrated me when people would ask how I was doing, because I didn't want to be treated differently in any way at all. It seems to have worked because my life is back to normal and people rarely ask about it anymore, and I couldn't be happier. The only time I discuss it is on these boards, but my main aim is to help others get their lives as close to "back to normal" as I have. I guess that's easy for me to say, because I didn't have any nerve symptoms, only an earache which is gone thanks to CyberKnife, and as long as I'm in the majority of radiosurgery patients whose tumor is killed and shrinks, then my life was only impacted positively by this, because I have a new appreciation for living after being told I had a brain mass, not knowing if it was cancer and if I had just been sentenced to an early death. I haven't had any problems with depression, but I can't say I wouldn't if I had the problems others on this board have experienced.

[Kathleen_Mc]

Suzanne: if you are finding people are dismissing your tumor as nothing because it is "not cancer" my suggestion is to just tell them you have a brain tumor and leave it at that, if they ask "is it cancer" don't go into it just say it will be biopsied when it's taken out.....it's really none of thier business anyway. Another option is if they say something to the effect "or is that all begnin" comment "yup it's not cancer do you want it?" Sounds a little rude but I think people who think brain tumor that aren't cancer are no big deal need a big slap in the head. Kathleen

[jw]

Is there any relationship between brain surgery and serotonin levels?  I wonder if there has been any studies or research done on this.  It seems that your serotonin levels (dopamine, norepenephrine, etc.) are in such a fine balance, the surgery (and the extended period of anesthetic) could affect this.  With all of the bleeding and swelling and motion in your head, it wouldn't surprise me if this does affect it.  You have to keep all of your brain Sarah's happy -  Sarah Tonin, Sarah Bellum...

[nannettesea]

Very cute about the Sarahs   I completely agree--suffered from depression BEFORE the surgery and God knows what happened after the influx of chemicals, anasthesia, etc.  Even now wonder how the drugs are affecting my brain, but not willing to be without anti-depressants.
Nan

[Angela]

Recovery tough, alot tougher than I thought it would be!  I am trying to keep a postive attitude but it gets harder everyday to remain sane. 

Big picture- there is a lesson in this.  Somewhere down the road, my experience will enable me to help someone, I don't know who or how yet.
Small picture- I'm alive, I don't have cancer, I don't have radiation because my tumor is gone.

Yeah, the imbalance - dry eye - facial paralysis - deafness SUCKS, no doubt about it!

[okiesandy]

After having been turned down by my ins co. to go out of network for surgery I decided to wait and watch. Had 6 mo. MRI  :-( it got biggerand became cystic. I never expected that kind of growth. It seems like nothing fits the norm for me. Diag. with Autoimmune Inner Ear Disease that is trying to eat up the hearing in my other ear. I have an appt. with radiation oncologist to see about GK or CK. Then I hear about bad outcomes from that.

A lot of my depression is trying to find a treatment I can live with (no pun intended). Through this I have also developed high blood pressure and a few other little things. I am treated rudely at work. I finally called my PCP and told her nurse that people around me may be in danger if they didn't do something for me quickly. Xanex as needed has been a God send to me. Yes, I know it is habit forming. However, I am not the addictive type and use it only when things get too rough. I was waking up at night with panic attacks. My PCP has been a lot more understanding through this whole thing then the neurotologist's have been.