Hello, my name is Shauna and I'm a survivor...

[Mana]

It's been close to five years since I had my tumor removed. I thought I was doing pretty well until (yet another) "discussion" with my husband about my SSD, my lack of coordination, and pretty much everything relating to having my skull blob poked at. I've decided it's time to reach out to others who've dealt with similar circumstances, if for no other reason than to have supporting evidence I can throw at him.

A little background- According to my Neurosurgeon (He's mine! You can't have him! I love him sooo much...J/K, I'll share), I am the youngest person to have the largest schwannoma. Luckily it was benign- an orange sized mass in my head was wreaking enough havoc on the rest of my cerebral occupants. I was 24 when they discovered it. The only reason it was found in the first place was because I died. Twice. (But I'm stubborn) I was flight-for-lifed to UW-Madison where the docs assumed I would be brain dead (Dying twice in 15 minutes has that side effect, I guess). Luckily, I had other plans.
I was only in the hospital for about three weeks (most expensive hotel EVER!)- most of that was spent in the Neuro-ICU. Not a fun place when once is aware of all the death surrounding them. But my mum brought my my DS and Pokemon...So at least I had that. I was unleashed released after one night in the general care rooms....I think I annoyed them with all my demanding to leave. Left in a wheel chair, entered home with a walker, and promptly set about to switching to a cane (and subsequently dumping that ASAP).
I lived at home while I finished recovering- with daily walks up the (rediculously steep) country driveway with my dad and yummy mom cooking....And a physical therapist like a drill sargent- it was only a month before I was declared healthy enough to do normal people things again. Without the d... cane (Although it was a stellar ankle-thwaping weapon).

It's been relatively easy to get back into a sembalence of normalicy, and I acknowledge that I've been crazy lucky to escape as unscathed as I am. I do have complete deafness on my right side as well as a slight lag to my entire right half. I dont run anymore (although I think that's just the lazy)- what good is running when you could well be running TOWARD the terrible sound? My flight-or-fight response have changed to a "come at me, bro" response.
I have been left with some rather unfortunate "mental" issues, as well. I've been diagnosed with depression (Both situational and clinical), from both a lack of counciling after I had to write my will at 24 AND from a delightful little chemical imbalance resulting from having people fondling my gray matter. I've also found that the tumor squashed more than just my brain, but also my....drive. I've apparently as much desire as a panda (ie: none). A bit frustrating, especially since there's nothing to help that. And the issues stemming from that then, of course, feed right back into the depression......

I've decided it's time to maybe talk to other's who have at least had similar experiances. Trying to find true understanding in those who have never had to deal with these unique sets of circumstances is...frustrating at least.
I hope to find at least a little insight in here and do hope I at least made you smile a little. After all, if you can't laugh at yourself, life is going to be very boring. 

[milhaus]

You have an incredible story Shauna. While mine was closer to the size of a golf ball and your situation was obviously more severe, it is nice to hear from others my age. I was diagnosed at 23. You sound very tough.

It sounds like maybe your husband isn't being very supportive or understanding. Or maybe I read that wrong. What do you need supporting evidence of?

If you don't mind me asking, what are you doing now? Do you have a job?

Even though you are depressed, it's great that you still have a sense of humor. I can relate to the depression probably more than anything else. Sometimes I feel so sad that I feel I can barely move. I'm working on fixing that.

Like you I rushed into getting back to normal as quickly as I could. I started classes at KU three weeks after my 18 hour operation. One month exactly after my surgery, the very first day my restrictions on exercise were lifted I was in the gym running.

Now a year and a half later, after graduating and finding a job, I still somehow feel as though I am struggling every day to get back to normal.

[Mimispree]

Shauna:

Thank you for sharing your story.  It makes me think that I'm on the right track as far as getting help for my anxiety depression and some PT to work on my balance issues. 

Next week I'm getting balance testing to improve my dizziness so that I can hopefully get back to work and reopen my bakery.  Right now all the looking up and down and sideways and bending that I have to do makes me so dizzy that I become a human-pinball.  Once that happens I start falling and after falling backwards on concrete steps I've started taking it very seriously. 

Cognitively I have a hard time following my own recipes (that were previously engraved on my brain) because my concentration is non-existent. 

So your husband can read this and see that you're not alone.  I didn't even mention the unbelievable tinnitus, stinging & dry eye, facial & throat paralysis and constant wonky head.
We have a few other hurdles to contend with each and every day, and so does he.  Any major illness happens to the whole family.  I like how Milhaus put it (but of course I can't quite remember exactly), something about his family having recovery fatigue.  Of course, that's as real as anything we're going through; maybe even harder...

You mentioned a lack of drive and I can sure concur with that, but I can also hear drive in your words and it may be just under the surface:  I know it is with me.  Perhaps our drive hasn't kicked-in yet because we need just a little more time.

Thank you for your great sense of humor and inspiration. 

Michelle

[MDemisay]

Dear Shauna,

Welcome to this ANA discussion Forum. You will find plenty of kindred spirits here! With opinions and helpful information to share. This is the best site for telling your story and getting others to listen and relate. Your attitude is contagous your outlook awesome!

It sounds like you've been through a lot! Dead twice! Wow!

So far, this is my 11th year being SSD, I have balance issues as well and a bothersome cane which I can't seem to shake over the years.

 I am 58 and I've had brain issues since I was 10. (3 CVA's!) back then they didn't even have CT scans(1967) my pediatrician misdiagnosed me as having a concussion. In 1970 I had what turned out to be my second stroke for which I went to Colombia Presyterian they didn't have microsurgery back then. I had to wait until my third stroke (in 1974) to have experimental microsurgery done with metal clips ( Disqualifying me for MRI's)then after a long period of recovery approximately  one year I had not had any other brain issues until my 3.5 millimeter AN which I had debulked in 2004 at NY Presbyetarian with Dr.Sisti then in 2011 there was a little growth in  my tumor "Irv" so in 2012 I had Gamma Kinife procedure done. There are drawbacks a little facial drooping  on the left side of my face.....Now I am the proud owner of "Dead Irv"

I take the long view on life as all optimists should......this is merely a medical adventure in our liives one that has unburdened me of all the "fast friends" take this opportunity to do what really matters to you. You are number 1. Everybody else (without an AN)  is passing through!

It's a tough lesson for all of us to learn your true friends will stick by you, allow the rest to fall away.

Take care you are a trooper come back often, I did! Depression fades. Take time to pray and meditate to wellness! Take long walks and as winter is over get out more and excercise!

Your new friend,

Mike

IM me if you like!

PS...In September I will be married 35 years! AN takes a toll on your marriage as Breast Cancer did in 1992 for my wife now we are both survivors! Attitude IS everything!!!!