Anyone feel BETTER after Surgery/Radiation?

[LisaM]

I'm hoping that the AN found in my head is done growing and will eventually shrink a bit.  But... just in case I need treatment down the road, I am wondering if anyone has felt BETTER after having surgery or radiation?  Did your quality of life improve post-op?  Clearly for many quality of life is reduced after treatment. 

If your quality of life improved post-op I'd love to hear from you!

Just had my 3 month MRI after my diagnosis in April.  The MRI shows no change, the Dr. says the "tumor" is stable.  3 months is a short time and I'm hoping that this stability continues.  Since my quality of life is not impacted greatly from the AN, I don't see a reason to rush into treatment.  With surgery they give me a 50/50 chance of saving my hearing.  My hearing in the AN ear is almost normal -- though I have had a few bouts of sudden hearing loss but the hearing has come back.  The last bout of SHL was less than a minute long while the first SHL lasted for 5 days.  I do feel tired a lot and have trouble sleeping but don't know if these are AN symptoms.  On rare occasion I feel a bit dizzy.

Thanks for taking the time to respond to my post!

[Jim Scott]

Hi, Lisa ~

You ask some pertinent questions that I'll attempt to answer based on my own experience.

Prior to my AN diagnosis, surgery and radiation I suffered from increasing imbalance, intermittent 'stabbing' pain (in what I later discovered was the AN area), complete loss of the sense of taste leading to a severely diminished appetite and the subsequent loss of 35 pounds (fortunately, pounds I could spare) and an ominously growing sense of lethargy.  Unfortunately, by the time my AN was discovered (via MRI scan) my hearing had been completely lost in the affected ear.  I underwent Retrosigmoid surgery (tumor 'debulked', it's blood supply severed) followed by 26 FSR 'treatments' 90 days later in a pre-planned sequence.  Long story short:  the surgery was very successful with no complications (I was driving again with 2 weeks of the surgery) and the radiation presented no problems, whatsoever.  Later MRI scans confirmed tumor necrosis and the beginnings of shrinkage.     

All of my pre-surgery symptoms disappeared within 24 hours of my operation.  Five years later, I'm doing great!  Although my unilateral hearing never improved, I cope quite well with my SSD.  I do everything I did prior to the onset of my AN symptoms.  I have a bit less stamina than I used to but I'm in my late 60's and consider that a part of aging.  All in all, although I wish I never had the tumor, I enjoyed a very successful AN experience.  As I like to put it: 'life is good'. 

I would caution you that this is a website dedicated to supporting AN patients and the discussion forums often have posts from folks who are suffering with some post-op issues and seeking advice, information and understanding they may not receive elsewhere.  We also have many members with positive - very positive - stories that are encouraging.  One must try to seek that balance.  Not every AN surgery patient has my good outcome but neither does every AN patient have intractable, debilitating problems, either.  It's a mix and frankly, surgery/radiation results can never be guaranteed.  That's why the ANA highly recommends finding a doctor with extensive experience in AN surgery/radiation.  It is excellent advice.  So, my response to your question: has anyone has felt BETTER after having surgery or radiation?  Did your quality of life improve post-op?  Yes and yes.

Jim

[leapyrtwins]

I'm not sure if I feel better post op, but having an AN definitely changed my outlook on life and my perspective on a lot of things.

Also, after a period of healing - probably a good number of months - my life was (and is) back to normal with the exception of being SSD and although I sport a BAHA, I'm definitely not any worse than I was before surgery.

Best,

Jan

[deheisel11]

Before my surgery, my balance had become so bad that while I was driving that when I would have a slight bend to the right on the highway, I thought the car was going to turn over.  Now that I have had the surgery, my driving has returned to normal.  After the surgery, I had some facial paralysis.  My facial symmetry has returned but my right eye droops a little.  However, because of this total experience, I now look at life completely differently.  Where I use to see other people who had physical problems and feel uncomfortable, I now see people as they are....just other people.  I would say that some of my earlier balance problems have improved, but the major improvement is that I changed to a much nicer person.  Just make the most of what you are given.  The best to you. 

[Tod]

Lisa, this is a tough question to answer in some ways. The simple answer is a resounding YES, as I gained a great deal personally from what other people observed as a very difficult experience. From my perspective, this was a very good and necessary experience for me.

Pre-surgery, unlike Jim, I was gaining weight. This is likely because I was eating so much to try to keep functioning. I could not understand why things were so difficult and had attributed this to other causes. I was also having strange attacks of dizziness randomly throughout the day. I also looked completely awful (I was told) when hiking. Finally, my temper was seemingly always on the edge of explosion.

16 months post-surgery: Honestly, many people would be fortunate to be me, whether or not they had a brain tumor. Yes, I have some deficits and am working through certain challenges, but mentally and physically I am much better today that I have been for years. I am getting physically fit again (slowly), but I am able to do most anything I like. Shucks, I even played golf today with my son for only the second time since surgery and, save for balance issues in my swing, things weren't so bad. Actually, from the point of view of sheer pleasure, things were much better without all that anger. Last weekend I walked 10 miles in three hours with relatively little effort. 

I enjoy life. What difficulties I have are invisible to most people. And for the most part I don't notice them myself when I am busy.

As Jim says, Life is Good.

-Tod

[psmix]

Yes, I actually feel better than I have in years. Physically, I rarely experience dizziness anymore, and when I do it is mild and short-lived. My balance is pretty good. I have right-side facial paralysis that should improve with time (I'm about 5 months post-op) and SSD. I just got a platinum weight and I feel like I can cope with everything just fine.

The biggest difference is how I feel emotionally. For years before my AN was diagnosed I had a malaise that I just couldn't shake. I couldn't get motivated and I felt emotionally and physically exhausted all the time. Now my optimistic frame of mind is back. As long as I get enough sleep (about 9 hours/night), I have energy and a positive outlook. I feel focused and am enjoying all kinds of things. I've returned to all of my normal activities. I think there was quite literally a "cloud" (aka tumor) inside my head that is gone now.

[CHD63]

Lisa .....

As Tod said, this is a tough question because there are so many ways to define "better."  None of us ever wanted nor asked to have this tumor grow in our heads, so in many ways, having it changes one's life forever.  As with many other things in life, it is not what happens to us, but how we react to the stressor.

Personally, I would have to be honest and say that some things are definitely not better ..... being SSD, for instance.  But I certainly have much greater empathy for people with "hidden" disabilities and much more compassion for anyone who is struggling to overcome any kind of adversity.  Those things are certainly better in my life.

As a realistic side note:  for some people who have ANs, even if the tumor is growing ever so slowly and they have chosen to watch and wait, hearing loss may be inevitable for that person no matter whether the treatment ultimately is radiation or surgery.

Clarice

[Kaybo]

I had HORRIBLE headaches before my surgery and relatively none now - maybe once a month!  In that way, I have felt MUCH better...& used MUCH less Advil & Tylenol!! 

K 

[LisaM]

Thanks for all of these replies.  I am so grateful that this site exists. It is incredibly helpful to get different perspectives.  I do wonder if my fatique is AN related... or if it is from being 50 and having a 4 1/2 year old daughter! 

I also have a few mood swings here and there... is it the AN or menopause?   That being "on edge" thing that Tod mentioned is something I can relate to.  The malaise that psmix mentioned makes me wonder what unknown impact the AN has as it presses against parts of the brain. 

The AN diagnosis has made me slow down a bit and prioritize and for this I am grateful.  I take long walks now and really listen to what I hear and enjoy the beauty around me.  This is a good thing!

[Silver Sonnet]

Hi, Lisa==great question!

I just had the tumor in my right ear removed two weeks ago.  Prior to my surgery (which was two weeks ago), I was struggling with terrible fatigue (maybe stress), balance issues, and those stabbing pains in my head mentioned above. Two days after surgery, the balance problems and stabbing pains are just totally gone.

Other improvements I just can't put my finger on.  Psmix put it perfectly when she said "The biggest difference is how I feel emotionally. For years before my AN was diagnosed I had a malaise that I just couldn't shake. I couldn't get motivated and I felt emotionally and physically exhausted all the time."  I've been asking everyone whether it's normal to feel so much happier, so much more interested in life.  The tumor was compressing my brain stem, and maybe getting that pressure off that allowed the nerves to work properly and/or the blood flow properly--I don't know; I just know that mentally, emotionally, and physically, I feel better.

I also appreciate life and other people far more than I did before.  This isn't my first major surgery, so it isn't just the fact of having come through a rough situation. 

As Jim says, life is good!

[PaulW]

Its now been nearly 12 months since my Cyberknife Radiation Treatment.
I had hearing loss, fatigue, short term memory problems, and that living in a cloud feeling.
Balance problems were becoming a problem too. I also had mild tinnitus.

12 months later and 80 % of the time I feel better than I did pre treatment.
Balance problems are much better, fatigue and that living in a cloud feeling are gone much of the time. Hearing remains good and is better than pre treatment.

I went Snow Skiing last week, (I live in Australia.. Yes Australia has snow skiing in July) and provided visibility was good, my skiing was as good as it ever was.
Skiing was easier this year post treatment than it was pre treatment.

So yes I feel much better after radiation than I did before treatment.

[Tumbleweed]

Hi, Lisa:

Since getting CyberKnife (CK) treatment 3 years ago, my balance has improved dramatically (I'd say, subjectively, around 75% improvement), my tinnitus is only about 10% as loud as it was before treatment and my energy level has rebounded significantly. I have lost a little bit of hearing (roughly 15 dB) in the upper-midrange and high frequencies since getting CK, but that might have occurred without treatment anyway, as I was steadily losing hearing before treatment.

It's important to realize that the abatement in my tinnitus (which happened immediately after my CK treatments) is a very unusual outcome and therefore something that someone else should not expect to happen for themselves. Also, according to Stanford-based AN specialist Dr. Chang (my doctor), only about 25% of CK recipients report improved balance after treatment (often after a somewhat short period of worsened balance immediately after treatment, as was the case with me).

Considering how dramatically my quality of life improved following CK, I only wish I had had it done sooner. But there was no way I could've predicted I'd respond so favorably.

Best wishes,
TW

P.S. I opted for CK because the doctors I consulted (6 in all!) all gave me over a 99% chance of immediately losing all my hearing (SSD) and over 30% chance of permanent facial paralysis if I had microsurgery. I still have very useful hearing on my AN side and have never had any facial symptoms. Even if I eventually lose all my hearing on my AN side (a possibility), it's been worthwhile to have years (3 so far) of useful hearing on that side as a result of having CK.

[dragonmama]

Like the positive outlook of this thread... 

I was just diagnosed, and haven't been treated yet so I can't answer the original question. But the talk here about fatigue and lethargy and depression and lack of enthusiasm for life struck a chord with me. I have SSD (lost my hearing progressively since March 2009). I've noticed that in the past few months I've been feeling better, and I'm wondering if this could be because my brain has done most of the work of rewiring to compensate for the loss of hearing? I'm wondering if that's one of the causes of lethargy, lack of enthusiasm for life, etc - that the body is using a tremendous amount of energy and resources for what is essentially an invisible task: the rewiring to compensate for functional deficits. Since I'd lost pretty much all of my hearing six months ago, the job of rewiring to compensate for this loss of function is pretty much done and that energy that had been going into my head (LOL!) for that task, is now available for enjoying life.

Gael

[hruss]

Hey Lisa,

I had a lot of balance problems before being diagnosed, just that - no hearing loss, no vomitting, no faints.... when turning my head to check for cars before crossing the streets I felt so dizzy (not so much at the beginning but in a month it got severe) that I might have fallen on the pavement if there was nothing to prop.
After the surgery, I can spin with no problems . Yes I am SSD and had some problems with closing the injured eye, so life hasn;t improved, but my attitude towards it has had - and that is why it seems so much sweeter to me now. All these problems can be overcome - I graduated my master's programme, even was awarded a scholarship to go for a semester abroad, got married. Aren't these wonderful things?!

it is your determination to look at a glass half full or half empty that changes your life!

All the best,
Hrissy