ANA Discussion Forum

Post-Treatment => Cognitive/Emotional Issues => Topic started by: doctorb on October 02, 2009, 09:13:21 am

Title: My First "Brain Dump"
Post by: doctorb on October 02, 2009, 09:13:21 am
(http://www.docbreger.com/The_World_According_to_Doc/Picture_Books/Pages/Brain_Surgery.html#2)

So, this is the first picture I posed for after Surgery; no kidding, I actually asked that this one be taken; I was about 36 hours out and the bandages had long fallen off.  My young son captured this lovely shot, nice ah!  You can see by the Pirate patch, argh, they'd already started taking precautions to protect my eye.  

I spent three more weeks in Hospital, most of that in rehab learning how to walk again and to eat without choking; much harder than you think when you can't manage ice chips without gagging on them like an infant on a fast running bottle. My first full week in the hospital was split between the ICU and one, maybe two other floors while I waited for a bed to open up in rehab.  

That first week after surgery was a very dark time for me, mentally and physically. I felt like I was being bounced from one shift change to the next, not making any real progress, in terrible pain nearly all the time and wanting of the attention I thought I deserved.  It took the nurse half the shift to get around to reading my chart and understanding my situation and what it took to keep me comfortable.  By than I was usually so miserable, the medication did little to help.

I slept mostly during the day and laid uncomfortably awake all night.  When I was lucky enough to sleep at night, the dreams were so strange, they'd wake me, disoriented and confused.  Did any of you have the "Good Meal Company" dream, because I certainly did.  The Good Meal Company only served one meal, T-Bone Steak Medium-Well, Baked Potato Loaded and Cream Corn in a small bowl on the side. I love cream corn but I was freaked out by the dream.  In hindsight, I'm almost certain the feeding tube I was subjected to for 10 days after surgery explains the recurring Good Meal Company dream. Correct me on that if you think otherwise, I'm open to constructive opinion sharing. Funny thing, I always woke up feeling very full!

By the time they let me go home, I was marginally able to swallow (mechanical soft diet) and was still very much dependent on a walker with someone holding my belt tightly just in case I stumbled.  

Funny story.  The day before I went home, one of the OT’s left me alone standing in front of a sink washing my hands and down I went.  The walker crashed to the floor first, making a very loud noise when it hit the tile floor, I landed a split second later on my right side and shoulder.  The whole deal scared the bejesus out of the poor young OT. Probably ten people came running when she yelled for help, that loud noise scared the bejesus out of me.  

For whatever reason, they chose to pick up the walker first, which by than was several feet from me!  When I noticed that I asked for "a little help please" and there was still hesitation by the growing crowd to get me off the floor and back on my feet or in a nearby wheelchair.  I thought that strange.  It was as if no one wanted to chance doing anything to hurt me or make waves with the administration by getting “involved” in a patient falling incident. The young OT was immediately handed a form to fill out while I was still in the room getting a thorough once over by the charge nurse.  I checked out fine!  I saw the OT later that day and apologized for falling down and scaring her.  We had a good laugh together although I couldn’t smile!  I was her first faller in her five years, sorry pal your streak is over!

I know, I'm rambling here. Please bare with me, in a weirdly funny way I'm enjoying this creative break from my new reality.

My older son just came in my room to check on me.  "You ok, Mom said you've been moving real slow all day?"  Funny thing, Mom didn't inquire with me about my health today. You see, that's exactly why I'm angry!  People, I think, really don't know how to ask us how we might be, or perhaps like in the hospital, get involved and lend a sincere helping hand! Sometimes I think maybe I’m expecting too much?   I get so angry sometime, most of the time.  

Sadly, I find myself most angry with my wife.  She’s known me for 26 years, I expected her to react differently than she has.  I know, she has been affected by this too and is working through her emotions.  I realize that but I’m not done being angry yet.  This is really taking a toll.

Ok, I’ve officially lost track of what my original intention was when I started writing this post.  Lets just call this the first of several brain dumps to come about my AN post-op experience. Thanks for reading!

Doc

“Started writing this last night and feel asleep with my Macbook Pro on my chest still running.”
Title: Re: My First "Brain Dump"
Post by: NancyMc on October 02, 2009, 09:34:32 am
Doc,
Many of us have posted our cool scar photos.  Mine for example is in my Spa Day thread which chronicles the entire event from pre-op admissions to about as far as I'm gonna get on the recovery road.
http://anausa.org/forum/index.php?topic=9171.0
And most of us have felt the anger.  I just have to keep reminding myself, as so many others have, that it could be a whole lot worse.  My first neurosurgeon said, "If you had to have something in your head, this is what you'd want."  I just looked puzzled at him and thought "I don't want to have anything in my head."  That was exactly eight years ago.
Your wife may be scared and unable to express her feelings.  Talk to her.
Nancy
Title: Re: My First "Brain Dump"
Post by: doctorb on October 02, 2009, 11:22:41 am
I'm really sorry Nancy, but I couldn't disagree with you more.  I don't want to hear people, especially medical professionals tell me it could have been worse.  As far as I'm concerned it was / is as bad as I could have possibly expected.  Again, I'm sorry, but that's how a I feel.  I've tried to speak with my wife; she avoids to subject.

Doc
Title: Re: My First "Brain Dump"
Post by: ilsemor on October 02, 2009, 11:43:58 am
Hello Doc - I'm sorry you had to go through this experience.  I'll pray for your recovery. You have been through a lot!  After having doctors remove your "dump" you must be thankful to be alive, it was a brain surgery and it must have scared your wife to go through this process by just being the passenger and not the driver.  Sometimes that's worse because you don't know what's like and you imagine it a lot worse than it really is.  She was probably so afraid to loose you.  You're probably experiencing the process of loss.....1st. you can't believe it's happening to you, 2nd. you're angry because it's you and it doesn't feel fare and 3rd. you conclude thank God it was just a "dump" and that it was treated, and that you have medical insurance (a lot of people don't even have that), and family and love, look for things to be thankful and the list is endless.  
Good luck and keep your funny sense of humor, it helps!

Ilsemor
Title: Re: My First "Brain Dump"
Post by: ppearl214 on October 02, 2009, 11:47:59 am
Hi Doc and thanks for sharing the picture and update with us.

July... Aug... Sept... Oct... 4 mos since your surgery... and you are absolutely entitled to feel as you do... and so does NancyMc and so many others.  Regardless of how I feel, I know of many that try to keep "the glass 1/2 full" going into our AN treatments (regardless of surgery or radiation).  I have seen the good and not-so-good outcomes around here (esp. for all AN'ers I've met here in the States as well as in the UK.... I'm pushing for AUS next :) ).

I saw NancyMc immediately after her surgery and she has done beautifully. I have seen many others that have not come out of treatment as they hoped.  I also know and have met the AN'ers that had life-threatening growths and situations.

I'd like to move this thread to "Emotional/Cognitive" forum, cuz there, we can all share our feelings about how this ride can totally stink.  And, it does stink.  None of us asked to be put in these shoes....... and we certainly don't try to sugar-coat things around here.  So, Doc, with your blessing, I'll move this to "Emotional/Cognitive" so we can elaborate here, in the right forum, so newbies can learn from it as they research what will be best for their situations.

For me, I've always tried to view the glass 1/2 full.... but, I am also very very realistic as I have had devestating multiple diagnoses prior to my AN diagnosis, so I fully understand (for me), that the picture may not always be so bright as my mind, heart and soul would hope.

Hang in there Doc.  Please remember to give your wife a huggle.  I try everyday to give my bloke a massive huggle for all the ills in my life that he tolerates.... our "caregivers" are far too important in our lives.    :)   

Dr. Phyl, dfM :)
Title: Re: My First "Brain Dump"
Post by: NancyMc on October 02, 2009, 11:57:05 am
Quote
I'm really sorry Nancy, but I couldn't disagree with you more.  I don't want to hear people, especially medical professionals tell me it could have been worse.  As far as I'm concerned it was / is as bad as I could have possibly expected.  Again, I'm sorry, but that's how a I feel.  I've tried to speak with my wife; she avoids to subject.

Yeah,  my ex - husband was all very curious about the whole thing when I was diagnosed.  No compassion, no concern, just on about his business.  This was two years after I came down with rheumatoid arthritis that crippled me.  I was the active one, hiking, skiing, boating, parent of two, did all the housework, yardwork, etc while he sat in front of the tube.  I wondered, Why did this happen to me when he doesn't even care about getting up off the couch?  Hence, the ex.  Don't let that happen to your marriage.  Communicate.
I had to frequent Children's Hospital Boston during a period in my son's life after his gym teacher put a brick wall two feet after the finish line of a race that my son was determined to win . . . fractured elbow, surgery to install pins, surgery to remove pins.  Seeing the children with chronic illnesses in that place made me thankful for my condition.  I hope you will have a good outcome and will be able to accept any limitations that result.  I'm sorry you or any of us is having to go through this ordeal.
Title: Re: My First "Brain Dump"
Post by: TP on October 02, 2009, 12:15:20 pm
Doc, I am so sorry to read what you've been thru, it has been a rough road. My prayers are with you.

After my AN was removed, I had to have two additional surgeries (CSF leaks) plus I got meningitis on my second hospital stay. That hospital stay was 7 days and for two of those days I wanted to die. I never had those types of feelings before, I am a 1/2 glass full person, very positive but that type of sickness you never realize how one may feel. I was so sick and felt horrible. I was sent home with a pic line and for 6 hours a day I had to give myself antibiotics for two weeks. I was feeling alone as my husband was having to take my daughter to visit colleges (she was a Sr in high school) and I couldn't go with them. It was a hard hard time and I didn't have my mom (she died in 2001) and my dad was with his new wife out of town where she lived.  However, I had folks praying for me. I asked only a few people and I learned later that 50 plus folks were praying for me that summer in 2006. I made it thru those few months and after having one more surgery plus several eye surgeries I was back to my normal self.

It has been three years and I really miss my smile, my hearing and I am getting tired of my facial pain from paralysis. However, I remember that difficult time and realize God will pull you thru this hard time. You will still have things to deal with in your life but time does help. Please have faith, know that the folks on this forum understand (everyone goes thru things differently) and we are pulling for you. Once you are physically able to, try and start to do the things you  like to do. Let your family know how you are feeling. Reward yourself for accomplishments. Even if it is getting an ice cream cone or buying a new book. Treat yourself on making progress in your healing. We are pulling for you!!    
Title: Re: My First "Brain Dump"
Post by: doctorb on October 02, 2009, 01:01:27 pm
Hi Doc and thanks for sharing the picture and update with us.

July... Aug... Sept... Oct... 4 mos since your surgery...
Dr. Phyl, dfM :)

Correction, 8 weeks and 2 two days out and I'm loving it...can't you tell.  Thanks Dr. Phyl, I appreciate and respect your opinion just like I do everyone else who has chimed in on this post and participates in this great forum.  It seems I may have touched a nerve, not 6, 7 or 8, I hope.  I'm not done "Brain Dumping" yet either and I'm bound to touch off more debate moving forward.  

Some of you may not believe this, but I've actually come to terms with this whole deal.  I'm not the boo hoo why me type.  I'm angry about how I was left physically after the surgery, not that I found myself with a giant Tumor in my head.  

I've had other life threatening illnesses in the past that required surgery.  I had a Triple Bypass in April '08 after a pretty nasty Heart Attach and then six Stents put in the Bypass Grafts and Native Vessels after the Bypass...I know a thing or two about adversity and being challenged by my own physical limitations.  Although, I didn't have any time to really think about the consequences of the Heart Surgery like I had prior to the AN Surgery.  With the Bypass, the next thing I knew I was waking up in the Cardiac ICU peeing in a tube and still had an intubation tube shoved down my throat.  This just happens to be a little tougher to come back from I'll admit, but I'll be back, maybe not 100%, but I'll be back for certain.

Better stop before I end up writing chapter two prematurely.

Take Care and thanks again!

Doc
Title: Re: My First "Brain Dump"
Post by: doctorb on October 02, 2009, 01:16:54 pm
Quote
I'm really sorry Nancy, but I couldn't disagree with you more.  I don't want to hear people, especially medical professionals tell me it could have been worse.  As far as I'm concerned it was / is as bad as I could have possibly expected.  Again, I'm sorry, but that's how a I feel.  I've tried to speak with my wife; she avoids to subject.

Yeah,  my ex - husband was all very curious about the whole thing when I was diagnosed.  No compassion, no concern, just on about his business.  This was two years after I came down with rheumatoid arthritis that crippled me.  I was the active one, hiking, skiing, boating, parent of two, did all the housework, yardwork, etc while he sat in front of the tube.  I wondered, Why did this happen to me when he doesn't even care about getting up off the couch?  Hence, the ex.  Don't let that happen to your marriage.  Communicate.
I had to frequent Children's Hospital Boston during a period in my son's life after his gym teacher put a brick wall two feet after the finish line of a race that my son was determined to win . . . fractured elbow, surgery to install pins, surgery to remove pins.  Seeing the children with chronic illnesses in that place made me thankful for my condition.  I hope you will have a good outcome and will be able to accept any limitations that result.  I'm sorry you or any of us is having to go through this ordeal.

Ok, since you put it that way...!

Thanks Nancy!

Doc
Title: Re: My First "Brain Dump"
Post by: CHD63 on October 02, 2009, 01:58:51 pm
Doc .....

You have eloquently expressed what many people with ANs have experienced ..... the loss of our former, more normal, lives.  We may not see it as readily as our significant others, but we are forever changed ..... not only physically but emotionally, as well.  We no longer react to our loved ones as we did before, etc.  My guess is your wife is struggling to find out where she fits with this "new" you.

There is a whole category for Caregivers on this site that might be helpful to both you and your wife.

As for the anger, most of us have experienced this to a greater or lesser degree ..... especially hard for younger patients.  I came to grips with the reality of all of this quite quickly but I am much older than you and my three kids long gone on their own.  Still, I lash out at my husband when I am having a bad day, when I cannot hear him, when he forgets I am literally helpless in the dark and leaves me stranded, etc.  I feel awful afterwards, but I know I do it because after 46 years I know he loves me and will not leave me.

Hang in there ..... it truly does become easier with time.

Clarice
Title: Re: My First "Brain Dump"
Post by: tenai98 on October 02, 2009, 02:16:13 pm
Hi Doc
I have a very supportive partner....I had NO pain what soever after my AN surgery which surprised the *heck* out of me because I've read about *pain* on here...I was lucky with no facial paralysis, really no nothing but a few months of mid grade headaches which are gone now.
My weird dream was Jerry Lewis wanting to do a lobotomy on me...FREAKY....another one was the school janitor wanting to operate on me...
One step at a time and one day at a time...it does get better...Some take longer then others...You sound like a 'warrior' and will pull thru this.....emotions and all....For me it got to the point where I had to tell my partner to BACK OFF and let me TRY to do it on my own...if I need help I'll ask....
JO
Title: Re: My First "Brain Dump"
Post by: ppearl214 on October 02, 2009, 02:17:43 pm
ok, have moved this to the "Cognitive/Emotional" forum as the discussions really do resonate about the emotional well-being of us as we go through this journey... regardless if its us or our caregivers/loved ones.  

I also stand corrected by Doc for the timeframe since his surgery! Duly noted :)

I know there are many discussions in the forums about how our treatment outcomes do have a profound impact on us emotionally.  We come out of things unscathed... or definately not as we hoped.  My hope for all is the first, not the latter.

I sat in on the "Emotional Impact of having an AN" workshop at the ANA Symposium this past summer.  Ms Wyatt truly reminded everyone that we need to remember to try to take care of ourselves.... be good to ourselves... allow us to experience and do things that bring us joy.  We should also remember to do so for those that we surround ourselves.  For me... I take bubble baths.... or enjoy quiet time watching "mindless" tv..... or put on my fave disco (ok, stop laughing) music and dance to my hearts content around the house (praying I don't trip over the dog!).  For my bloke..... whether its me reminding him just how much I love him.... or cook his fave meal (excluding his all-nasty veggies he won't eat), or doing chores that he typically does to help me out... anything I can remind him of how much he means to me, esp. since he's been a part of my life since my AN journey began..... well, he knows how I feel.

Peeps here that have met me know the multitude of physical challenges that stare back at me in the mirror on a daily basis.  I REALLY dislike walking with a cane (my fashion statement).  I miss my old me... and I've noted here on the forums many many many many times just how much I miss my old body.  BUT.... and a BIG BUT *looks down at derriere*  ;D at that... I also remind myself that it's awfully good to be me.... as I have love and support surrounding me and I'm truly blessed..... and so are you all.

so, with all that said, my "goof" time at my office is now ending... I'm heading home to huggle my bloke, tell him just how much I love him... and will kick back with him and the dog, watch mindless tv after a very difficult week physically and at work.... and just take time for "me".  Here's hoping you all enjoy some happy "mindless" as well. :)

Dr Phyl, dfM :D
Title: Re: My First "Brain Dump"
Post by: Jim Scott on October 02, 2009, 03:23:20 pm
Doc ~

I appreciate your willingness to share your feelings and freely admit, without apologies, that you're angry about your physical condition.  If you can't do that here, then where? 

Even though I had a good surgical outcome with few complications, I can easily understand your anger, and frankly, I think it's justified.  Good recovery and all, for a few months immediately post-op, I was a bear around my ever-patient wife (we'd then been married 36 years).  I hated not being '100%' immediately upon my discharge from the hospital (which I pushed hard to achieve) and the post-op fatigue was also a hindrance.  If she would ask me if I wanted anything, I would sometimes lash out and tell her - loudly - that "I'll get it myself! .  In my mind, I felt that her attentiveness was just a sly way of usurping my over-valued sense of independence.  Eventually, I got my strength back and with it, my sanity.  Of course I apologized to my loving wife.  She accepted but said she was concerned that if this misanthrope masquerading as her Jim was who I was going to be, she worried about being able to stay married to 'that guy'.  Fortunately 'that guy' went away as I regained my strength, balance and other functions that had been impaired before and immediately following my surgery.  My wife was always alongside me as I walked for miles on a regular basis to regain my sense of balance (it worked) and she encouraged me to try things I had wanted to do but put off.  We tossed a small rubber beach ball back and forth at the local park to help me with my coordination (that worked, too) and she cooked delicious meals, as always, to help me stay strong and put back on at least a little of the 35 pounds I'd lost pre-diagnosis, when my sense of taste went south for a few months and I practically stopped eating.

Bottom line: I found that as I improved and returned to normalcy, my disposition improved, too.  I never sought comfort from friends and acquaintances because I assumed they had their own problems and I wasn't about to become 'Poor Jim'....a guy that my friends would feel sorry for when I wasn't around.  When others asked me how I was doing (this went on for months, post-op, even though I looked fine and was relatively active) I would always smile and say ;'fine!'.  I was, too.  Well, mostly.  Good enough not to require sad looks from my friends.   

The 'things could be worse' argument can be grating, I know.  It is worse - for you.  Yeah, you could be permanently crippled, have terminal cancer or be dead - but if you don't have any of those conditions and are very much alive, than your AN surgery and recovery is 'worse' - for you, in the here-and-now.  If that renders you a bit less than sanguine about your situation that is perfectly normal, and we can empathize and support your struggle to return to full function.  If venting here on these forums helps, do so. 

I fully expect that you'll be 'back' - and probably sooner than you expect.  I suggest that you use the anger to fight your way back to normalcy.  I did and it was quite effective - and a lot more productive than my sour moods and sniping at my poor wife.  As Phyl suggests, try to kick back and enjoy whatever makes you happy and of course, know that many people you've never met are thinking of and praying for you as well as supporting you in your struggle to regain normalcy - or as much of it as you can.  Remember too, that things won't always be like this.  Better days await. 

Jim
Title: Re: My First "Brain Dump"
Post by: doctorb on October 02, 2009, 04:37:30 pm
Hi Doc
I have a very supportive partner....I had NO pain what soever after my AN surgery which surprised the *heck* out of me because I've read about *pain* on here...I was lucky with no facial paralysis, really no nothing but a few months of mid grade headaches which are gone now.
My weird dream was Jerry Lewis wanting to do a lobotomy on me...FREAKY....another one was the school janitor wanting to operate on me...
One step at a time and one day at a time...it does get better...Some take longer then others...You sound like a 'warrior' and will pull thru this.....emotions and all....For me it got to the point where I had to tell my partner to BACK OFF and let me TRY to do it on my own...if I need help I'll ask....
JO


"Hey Lady!" Thanks for the belly laugh, Jo. I'm a big Jerry Lewis fan although I felt terrible for him watching this years telethon; Jerry's gotten old right before our eyes!  For me, writing my "Brain Dump" has turned into an affirmation of sorts that I am getting better and I'm not alone; look at this growing thread, so many caring AN'ers.  I'm not done dumping yet.

My wife has been very supportive to the point that it annoys me something terrible and, just like you, I found myself asking her to back off too.  Reading your response just triggered something, that's why I said "found."  Until recently, I had a Feeding Tube inserted directly into my stomach; I was sent home from the Hospital with it still in just in case my swallowing reverted.  Well, the "Pick" as its called had to be cleaned every day.  First a large needless syringe of tap water had to be put in through the main lead to flush it. Next the area where the Tube entered my body had to be thoroughly cleaned with a special Wound Cleanser I was given on discharge from the Hospital.  Short story shorter, not intending to, she put to much pressure on the site and hurt me very badly.  It had come dislodged and bled bad enough I chose to go to the ER.  I spent four hours there watching our health care system crashing all around me; I'm so grateful I have health insurance.  The attending ER Doc went ahead and removed it rather than chance a recurrence.  It cost me a buck and a half to get out of there; copay.  It's been since that incident that she has distanced herself from my recovery.  That was three weeks ago and we've really not spoken about much of anything since, especially my health.  Thanks Jo, I think I know how to fix what isn't really broken.

Take Care!

Doc

Title: Re: My First "Brain Dump"
Post by: doctorb on October 02, 2009, 05:25:27 pm
Thanks Jim, you're obviously a smart man and your wife is lucky to have you, tell her DoctorB said so!  

Like so many of you have suggested, I do try to do things that make me happy. Sadly, my all time favorite thing to do, working in my wood shop is still out of the question; dangerous power tools and zero depth perception don't mix.  Even though its' still difficult, I do take long walks with my best buddy "Freddie the Wonder Pug" and enjoy watching classic movies I rent from the iTunes store.   I also enjoy audio books and just finished Ted Kennedy's recently published book "True Compass."  In fact, my collection of audio books purchased at audible.com have become a very important part of my down time and the major reason why my iPhone battery is always low.  This is especially true since my left eye is covered with a patch 24/7 and reading is somewhat difficult.  I tough it out working in my office, but having only one working eye is a particularly difficult limiting factor to overcome.   I've been deaf in my left ear for well over a decade so if surgery did any more damage there, I wouldn't know it anyway.  

You know, the thought has crossed my mind that you guys are really unwilling experts in our field; isn't that sad, our field!  A bum left eye and shaky walking, drooling, drinking coffee with a straw, falling down walking to the bathroom during the night, choking on my prized Captain Crunch and having to empty the milk from my favorite cereal bowl with that same straw, piece of cake!  I'll be back, even if it takes using my cane to get there.  I'm only 8 weeks out from surgery, I'll be back.  Like I told Jo in an earlier post, I think I know what went wrong with my wife's involvement in my recovery...I'll work on that and she'll be back too!

Thanks again Jim, you take care!

Doc
Title: Re: My First "Brain Dump"
Post by: Kaybo on October 02, 2009, 05:54:01 pm
doc~
You have had a rough time of it, no denying that but I am here to tell you that it does get better.  I had an AN when I was 25 - my husband & I had been married just over a year.  Sounds like you had some stuff I didn't but I had a pretty rough go of it too - I had a stroke on the table.  I, too, had to relearn how to walk, talk, eat - everything - the main difference in 13 years is that they just sent me home - no rehab...wouldn't even put me in therapy until 3 months out!!  I went back to work then too (3 months - had to)...I taught 1st Grade - a pretty demanding, physical job.  I did handwriting with my students!  I still write on a bulletin board with my left hand & paper with my right (it just took WAY too long).  I had my eye completely sewn shut for 3 months - after I went back to work.  Talk about stares - I will say that the kids were great though.  I say all that not to make you feel sorry for me or to minimize what you are going thru or feeling but just to point out that even though it's bad - & it is BAD - you will get thru this.  I have a GREAT life now (even though it is a little different than I thought it would be)...I have a wonderful hubby and 3 beautiful daughters.  Check out our blog (world icon on side)...if your wife would like to talk to someone that has "been there" I would be more than happy to chat with her (as would Dave, I am sure).
Keep your chin up!

K ;D
Title: Re: My First "Brain Dump"
Post by: doctorb on October 02, 2009, 08:23:24 pm
doc~
You have had a rough time of it, no denying that but I am here to tell you that it does get better.  I had an AN when I was 25 - my husband & I had been married just over a year.  Sounds like you had some stuff I didn't but I had a pretty rough go of it too - I had a stroke on the table.  I, too, had to relearn how to walk, talk, eat - everything - the main difference in 13 years is that they just sent me home - no rehab...wouldn't even put me in therapy until 3 months out!!  I went back to work then too (3 months - had to)...I taught 1st Grade - a pretty demanding, physical job.  I did handwriting with my students!  I still write on a bulletin board with my left hand & paper with my right (it just took WAY too long).  I had my eye completely sewn shut for 3 months - after I went back to work.  Talk about stares - I will say that the kids were great though.  I say all that not to make you feel sorry for me or to minimize what you are going thru or feeling but just to point out that even though it's bad - & it is BAD - you will get thru this.  I have a GREAT life now (even though it is a little different than I thought it would be)...I have a wonderful hubby and 3 beautiful daughters.  Check out our blog (world icon on side)...if your wife would like to talk to someone that has "been there" I would be more than happy to chat with her (as would Dave, I am sure).
Keep your chin up!

K ;D

You're a very strong lady and have a beautiful family; three girls, oh my.  I have two sons, one 14 and the other a senior in college at 21. Your web site is nicely done.  I decided to totally rework mine after I started posting here...see the globe.  My Eye Doctor suggested sewing my left eye shut too; I'm having a Gold Weight put in on Wednesday, the 7th of October instead.  I've read here in the Forum many positive outcomes with the weight treatment, I think I'm doing to right thing.   My AN was on the left side and as luck would have it I'm left handed.  I still have a very difficult time handling a pencil so I avoid writing whenever possible.  I have front desk folks fill out paperwork for me at Doctor's appointments or my son does them for me.  I've had that issue plaguing me well before my surgery--also trouble typing on my computer.  I started doing typing drills from an old high school typing text and have really improved my motor skills that way.  My wife is Japanese and doesn't speaking english very well or I'd suggest she speak with you.  Thanks for the offer though, greatly appreciated.

Thanks for encouragement!

Doc
>:( I'll be back!  >:(


 
Title: Re: My First "Brain Dump"
Post by: ppearl214 on October 03, 2009, 06:18:54 am
"Freddie the Wonder Pug" and enjoy watching classic movies I rent from the iTunes store.  

Please allow me to introduce Freddy to Zoe Bean (Beanie), the infamous healing "toot Queen" (for those that have been here for a while.... you all know her *coff* healing powers by toots).


(http://image1.frappr.com/pix1/i/20080505/9/4/9/94969c4da0f989beb4c52b53f3d69d4a0_medium.jpg)

*looks around for Brendalu as well*

Phyl

Title: Re: My First "Brain Dump"
Post by: doctorb on October 03, 2009, 06:35:35 am
"Freddie the Wonder Pug" and enjoy watching classic movies I rent from the iTunes store.  

Please allow me to introduce Freddy to Zoe Bean



So the Dr. Phyl is a Pug Dog person too...way cool!  I'm going to build a Photo Gallery of Freddie the Wonder Pug today my web site...stay tuned for news!
Title: Re: My First "Brain Dump"
Post by: ppearl214 on October 03, 2009, 06:42:03 am
"Freddie the Wonder Pug" and enjoy watching classic movies I rent from the iTunes store.  

Please allow me to introduce Freddy to Zoe Bean



So the Dr. Phyl is a Pug Dog person too...way cool!  I'm going to build a Photo Gallery of Freddie the Wonder Pug today my web site...stay tuned for news!

"Pug Parent"   :)

If you need something to cheer you up, try reading "Clara, The Story of the Pug that Ruled my Life" by Margo Kaufman OR "The New Pug" by Shirley Thomas. Guaranteed to lift spirits.

(http://image2.frappr.com/pix2/i/20060415/c/4/9/c49295c428215cc51ab6707159110f2d0_large.jpg)
Title: Re: My First "Brain Dump"
Post by: doctorb on October 03, 2009, 01:33:24 pm
Here you go Phyl, a little Gallery of Photos of my best buddy "Freddie the Wonder Pug."  Just like with my Heart Surgery last year, when I finally came home from my AN Hospital stay, Freddie spent every day, and night in the bed with me for the first ten days or so.  Tell me dogs don't understand human frailties.  :)


http://www.docbreger.com/The_World_According_to_Doc/Picture_Books/Pages/Freddie_the_Wonder_Pug.html]http://www.docbreger.com/The_World_According_to_Doc/Picture_Books/Pages/Freddie_the_Wonder_Pug.html]http://www.docbreger.com/The_World_According_to_Doc/Picture_Books/Pages/Freddie_the_Wonder_Pug.html (http://www.docbreger.com/The_World_According_to_Doc/Picture_Books/Pages/Freddie_the_Wonder_Pug.html)

(http://www.docbreger.com/TWAT-D/Picture_Books/Pages/Freddie_the_Wonder_Pug.html)


Title: Re: My First "Brain Dump"
Post by: moe on October 03, 2009, 10:43:52 pm
Dear Doc,
It is very therapeutic to dump those feelings and hopefully helps you feel better doing so. You have been through a lot and what is important to see is that there are others out there who have been through the same thing (and even worse >:( )
I predict you will be on top of this game in no time.
I held in my feelings and such post surgery because of crazy family situation (hubby was stationed in WA, I was back in TX with the kids so one could finish high school-I went to WA for the surgery, came back to TX  and resumed life at a slower pace).
When I joined this forum I felt so pent up with so many emotions that I had been holding in for years.
I'm still venting and feeling angry/anxious/depressed at times three years post surgery.
So let it flow......
We're here to listen and support. :)
Maureen
Title: Re: My First "Brain Dump"
Post by: doctorb on October 04, 2009, 09:45:13 am
Thanks Maureen...you know, I have a sister named Maureen, she lives in North Carolina.  Anyway, thanks for the kind words, I certainly hope you're right about my potential for a quick come back.  And yes, I've spent quite a bit of time reading the forum, my experience, as bad as I though it was, has been a cake walk compared to other I've read.  Like I said elsewhere, I'm not done brain dumping either, I still harbor a lot of angry that's slowly passing.

On a positive note, I found some new water-proof medical tape and a different brand of stick on eye patch at Wal-Mart that work really great keeping my left eye shut, so I'm a little less angry about that part of my life.  If you look at the cover page on my web site, click the globe at left, you'll see I built a "Recovery Milestone Clock" that counts down the time to the next big event in my treatment...pretty cool idea I think and just making the clock was good therapy for me...I haven't forgotten how to code.

You sound like a very strong woman, most military wives are...personally, I couldn't have done what you did. I was in the military, did 20 years before retiring from the Air Force.

You take care, enjoy your Sunday afternoon and thanks again!

Doc
Title: Re: My First "Brain Dump"
Post by: tenai98 on October 04, 2009, 04:41:27 pm
Doc
Here is another suggestion...as your wife join our 'family'?...It would be great for her to read the caregiver section and other sections to somewhat( I said somewhat as no one knows what we go thru unless they have been there themslelves) grasp the journey we are travelling.
JO
Title: Re: My First "Brain Dump"
Post by: doctorb on October 04, 2009, 07:46:17 pm
Wow Cheri, I sure am glad my Macbook can convert text to speech, you sure can write long responses...just kidding.   ;)  If it's ok with you, I'll just go to sleep tonight glad I haven't had to face some of the challenges life has dealt you and yours.  Between your run in with this AN stuff and what you've gone thru with your family, my problems don't seem so bad anymore.

Thanks for supporting the idea of "brain dumping."  Believe it or not I actually got a real positive boost from writing that the other day.  I'm not done yet shedding that feeling of frustration that unfortunately manifests itself as anger with me.  I'll keep working on that and hopefully someday soon it will pass.  Right now though, I have to get some sleep.  I can't stay awake past ten anymore; my dumpy brain can't handle it!  I'm also experiencing something new today--my incision site has been throbbing widely for about three hours now, not sure whats all about?!?

Thanks again for being so supporting and sharing and post a picture of Josie so I can get a look! 

Doc
Title: Re: My First "Brain Dump"
Post by: doctorb on October 04, 2009, 08:16:33 pm
Good, the throbbing is nothing I should worry about than.  I don't have a problem sleeping on the AN side which happens to be my deaf ear from long before the surgery.  I keep the deaf ear up to the air so I can't hear my wife grind her teeth; I've been doing that for years now, its works quite well!
 
 :)
Doc


Title: Re: My First "Brain Dump"
Post by: TP on October 05, 2009, 05:58:04 am
Doc, a very positive thing will happen to you this week; getting your gold weight will be a big blessing for you. After three brain surgeries what bugged me the most was my eye problems. I "hated" (harsh word but that was how I felt) my eye not being able to close. All the tape and eye patches so when they inserted that gold weight into my eye lid and I could close my eye on my own and sleep without having an eye patch, well that was one of the best days during my recovery. I wore my gold weight in my eye lid for about 16 months and when they removed the gold weight I ended up using that little piece of gold and made me a beautiful pendant that I wear around my neck in order to remember that period of my life.

The gold weight surgery is a very simple procedure and you will need to use eye drops and it may irritate you a little but it will close your eye and you will feel a little more normal and that means a celebration is in order!!   
Title: Re: My First "Brain Dump"
Post by: doctorb on October 05, 2009, 06:23:22 am
So they were able to save your hearing on your AN side? 

No, there was no saving or fixing the hearing in my left ear, I went deaf over a decade ago.  Turns out it was probably from the AN but none of the Doctors I've seen for the AN has said what they think caused it.  I've been deaf so long, and have learned to compensate for it in so many different ways, I hardly notice it except when I'm in business meetings with a lot of people and sometimes can't discern who's talking. 

Doc
Title: Re: My First "Brain Dump"
Post by: doctorb on October 05, 2009, 06:26:16 am
Doc, a very positive thing will happen to you this week; getting your gold weight will be a big blessing for you. After three brain surgeries what bugged me the most was my eye problems. I "hated" (harsh word but that was how I felt) my eye not being able to close. All the tape and eye patches so when they inserted that gold weight into my eye lid and I could close my eye on my own and sleep without having an eye patch, well that was one of the best days during my recovery. I wore my gold weight in my eye lid for about 16 months and when they removed the gold weight I ended up using that little piece of gold and made me a beautiful pendant that I wear around my neck in order to remember that period of my life.

The gold weight surgery is a very simple procedure and you will need to use eye drops and it may irritate you a little but it will close your eye and you will feel a little more normal and that means a celebration is in order!!   

Wow TP, you've got me all excited now about the procedure.  It was originally schedule for last Wednesday but there was a paperwork snafu.  I'm really looking forward to not having to tape my eye shut anymore, that really bites!

Thanks for the encouraging words!

Doc
Title: Re: My First "Brain Dump"
Post by: JerseyGirl2 on October 05, 2009, 09:30:08 am
  I just had my one year post op anniversary this past Friday.

Cheri,

You have been through a lot over the years, but it sounds as though your faith and positive attitude have been a big help. I hope that your one-year surgery anniversary was a good one and that the future will have wonderful things in store!

I remember that you had written (quite a while back) that you were going to go back to House for your one-year post surgery MRI -- are you still planning to do that? If so, have a great trip and equally great MRI results!!

Catherine (JerseyGirl 2)
Title: Re: My First "Brain Dump"
Post by: been there done that on October 10, 2009, 09:29:01 pm
Thanks Jim, you're obviously a smart man and your wife is lucky to have you, tell her DoctorB said so!  

Like so many of you have suggested, I do try to do things that make me happy. Sadly, my all time favorite thing to do, working in my wood shop is still out of the question; dangerous power tools and zero depth perception don't mix.  Even though its' still difficult, I do take long walks with my best buddy "Freddie the Wonder Pug" and enjoy watching classic movies I rent from the iTunes store.   I also enjoy audio books and just finished Ted Kennedy's recently published book "True Compass."  In fact, my collection of audio books purchased at audible.com have become a very important part of my down time and the major reason why my iPhone battery is always low.  This is especially true since my left eye is covered with a patch 24/7 and reading is somewhat difficult.  I tough it out working in my office, but having only one working eye is a particularly difficult limiting factor to overcome.   I've been deaf in my left ear for well over a decade so if surgery did any more damage there, I wouldn't know it anyway.  

You know, the thought has crossed my mind that you guys are really unwilling experts in our field; isn't that sad, our field!  A bum left eye and shaky walking, drooling, drinking coffee with a straw, falling down walking to the bathroom during the night, choking on my prized Captain Crunch and having to empty the milk from my favorite cereal bowl with that same straw, piece of cake!  I'll be back, even if it takes using my cane to get there.  I'm only 8 weeks out from surgery, I'll be back.  Like I told Jo in an earlier post, I think I know what went wrong with my wife's involvement in my recovery...I'll work on that and she'll be back too!

Thanks again Jim, you take care!

Doc
  whats up Doc,
                     Sorrry you had the long hospital stay. I ran out the door after 5 days, but it hit me real hard  the first weeks back at home,thought I was going to die.. Walking is key, first  to bath room then up and down the drive way in my trusty walker, eventually my wife drove us to the park everyday , at first I went a few yards and watched her jog around,taunting me.. A little bit more every day till i was keeping up with her. 8 weeks after my surgery I climbed Chimney Top mountain in GatlinburgTN.
Let that wood shop be your mountain take one step toward and up that mountain everyday, and do it everyday, your body will respond to the routine of a highly structured day. I thought my wife was being mean to me but she got the fight back in me. she did'nt baby me for my own good. I promise  you there is light at the end of that tunnel. In all it took 1 year to the day till i felt normal. Get to" steppin" Doc B pete in Ga.
Title: Re: My First "Brain Dump"
Post by: MAlegant on October 11, 2009, 02:59:42 am
Dear Doc,
I had my surgery over a year ago and am still dealing with many issues, not the least of which is anger at the new me.  I was pretty happy with the old me.  I am a different person now; dealing with pain and other limitations that while others may say, "it could be worse", it still feels pretty awful to me.  I'm not quite sure where my life will lead me now, but it is definitely a new direction.  I'm having to re-evaluate many things I never thought I would: my job, my husband, my life in general.  I suppose what I'm trying to say is, yes, this really sucks, and you have a right to be unhappy.  Yes, I know we're all fortunate to be alive, but honestly, did it have to be this difficult?

I hope you continue to recover and that all if not most of your issues resolve over time. 
Marci
Title: Re: My First "Brain Dump"
Post by: Doc on October 19, 2009, 09:28:11 am
Doc, just checking in.  You've been quiet.  Hope you're doing better ~

Cheri

Hi Cheri,

I'm doing fine, thanks for asking.  I haven't had anything to add to the conversation but I have been reading; so many sad stories.  I'm looking forward to my first MRI since my surgery; it's scheduled for November 2nd and don't see the surgeon again until November 30th.  I guess that's when he'll decide if I actually need CK to remove the balance of the Tumor left behind on my Brain Stem.  Either way, I'm ready for what ever comes next...don't have much of a choice do I?!? 

Take Care!
  ;)
Doc
Title: Re: My First "Brain Dump"
Post by: ppearl214 on October 19, 2009, 12:17:35 pm
Hi Doc

sometimes we all need to take a break from this "ride" we didn't sign up to partake, but glad to hear you are doing ok.  I know you realize we don't sugar coat things out here but... there are a lot of good stories/journeys as well. :)  Each unique unto themselves.  Hang in there.... give Fred a big ole' belly rub for me (Beanie sends an "arf-woof!") and pls keep us updated on things. 

Phyl
Title: Re: My First "Brain Dump"
Post by: Doc on October 19, 2009, 02:07:55 pm
Hi Dr. Phyl,

Thanks for the kind words as always.  You know, since writing that post this morning, my left ear, inner, has been hurting real bad and the head and neck pain is driving me crazy...called for an appointment but can't get in to see the Doctor for almost three weeks...ate a few pain pills to hold me over until than...ouch!

Take Care!
  ;)
Doc
Title: Re: My First "Brain Dump"
Post by: TP on October 20, 2009, 06:36:01 am
Doc, my AN was on my brain stem and a small portion was left behind and that was due to where it was located on my bone. My neuro does not want to do any additional surgeries.  I had my AN removed in 2006 and all my MRI's show the remaining portion has not grown. The good news was this year I didn't have to have an MRI, I will have one next year. I am really surprised most of the folks that have responded about MRI's indicate they have to wait a while to meet with their Dr after they have their MRI. I go to the hospital and have my MRI done, I wait about 15 minutes and I get a CD and I walk that over to where I have an appt already scheduled with my neuro and he reviews at that time. I can only imagine how anxious folks are from the time they have their MRI and the time they meet with their neuro doc.

Doc, as far as your pain, I am so sorry to hear you are having issues. I was fortunate I never had headaches until about 3 months prior to my AN being diagnosed. After my surgery I was so scared that I would get head aches. However, I found if I feel any  pain in my head I take two 500 mg extra strength aspirins and they go away immediately. Hang in there, we are pulling for all of you that are in pain and going thru "stuff".   
Title: Re: My First "Brain Dump"
Post by: Doc on October 20, 2009, 08:50:51 am
TP,

My AN also involved the Brain Stem and yes, a portion of it had to be left behind during the Translab; it was Wrapped around the Brain Stem and to dangerous to remove via surgery.  I'm sure the November 2nd MRI will show that the remaining portion of the Tumor hasn't grown but my Neuro and the Radiation Oncologist have said from the beginning that CK would be necessary to ensure it never comes back.  My Head & Neck pain gets worse as the day goes on.  I've been taking what amounts the prescription Tylenol for the pain and that, at least for now, works fine.  I also have to remember that I'm only 11 weeks post-op; its still early in my recovery.

Take Care!
 ;)
Doc