My First "Brain Dump"

[been there done that]

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.

[MAlegant]

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

[Doc]

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

[ppearl214]

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

[Doc]

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

[TP]

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".   

[Doc]

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