Stages of grief?

[crazyjster]

Thanks Jim, Liz and Karen...Karen I noticed you were at House too...I had Schwartz assist and House do my surgery but House has been my primary.  He just cleared me in Dec which I thought was odd but I was also being followed by Dr's closer to home.  So no more trips to downtown LA as of Dec 2011 but still get MRI's every 6 mo's by my local neurologist. 

I don't know who suggested ear plugs but I have tried them with no luck...only noise cancelling headphones which is ok for flying but I have 2 small children so pointless (or a blessing if I want to ignore them...but so far I have only traveled with them alone and not had that luxury) . 

As for my balance, I have petit mal seizures but they are not in the same part of the brain that deals with balance.  The only thing I can think of is hormonal changes after pregnancy may have wacked me out again and ruined whatever I had learned in PT.  I know some psychology but not that type (I was clinical not rat (aka brain behavior) psychology but maybe I should have paid more attention-LOL).

That is one of the things that makes me so mad about my husband.  I will say I had brain surgery...he will correct me.  Um they shaved  my head and drilled into my skull severing nerves removing a tumor pushing against my brain.  That to me constitutes brain surgery.  I do not know what else to call it. 

I would love to not be this angry depressed person and be at peace with my life but I don't know where to begin.  I have a 1 and 3 yr old who whave to grow up with a mom who has days where I can't function or I'm fine.  The being deaf...in one ear, I'm trying to explain that to my 3 yr old when she wants to tell "secrets" and I have made her noise sensitive because I can't be around loud noise.  I guess I don't know how to get past anger and to be at peace.

[CHD63]

Hi crazyjster .....

First of all, let me say that I am so sorry you have had such an unpleasant experience since your AN removal.  Secondly, I do hope you will seek professional counseling, if you have not already done so.

It sounds like you have a whole bunch of issues to deal with besides having had an AN.  Having two toddlers is enough to wear out a healthy person.  Having a husband who is less than supportive certainly has to compound the problem.

I'm sure your intellectual side knows that stress and fatigue can make all physical symptoms worse.  You not only need support for your physical issues, but your emotional issues as well ..... and they do go hand in hand.

I do hope your husband never has to have a skull-based surgery or he might have to eat his words about your surgery not being brain surgery!  If he will look at it, show him the ANA's definition of an acoustic neuroma:  http://www.anausa.org/index.php/overview/what-is-acoustic-neuroma  Yes, technically it is not a tumor that invades the lobes of the brain.  However, it can certainly displace the brain as it grows and during surgical removal, the brain is traumatized through swelling and/or manipulation.  In my mind, that alone qualifies it as brain surgery!

With your seizure activity adding to your issues, you need to see a neurologist and/or a clinical psychologist to get all of the help you need to resolve your ongoing anger.  It seems like you must have some other underlying physical issues if they are still ordering MRIs for every six months still at five years post-op ..... that is a bit unusual unless they are watching something specifically.

Many thoughts and prayers and do let us know how you are doing.

Clarice

[alabamajane]

Hi Crazyjster,,
I am so sorry to hear about the issues you are still experiencing,, this is a very hard journey for so many of us,, some more than others of course,, but hard still the same.. you have two young children which makes this all the more difficult,, (my boys are grown) but I can only imagine the fatigue you are dealing with also..
It is surprising to me that you have just been released from the Drs at House as it was my understanding from most posts here that release or requirement to return to them was much sooner.. that is one reason I did not go cross country to them .. was Dr House concerned at all with your continued balance issue which really seems to be your most troublesome issue?? (aside from the anger which is due in part to that and MOST understandable ).. If you have been seeing him until last Dec. he must have known.. maybe some additional vestibular therapy would help post pregnancy..

I also have seizures unrelated to my AN,, supposedly,, although my first seizure is what led to an MRI and diagnosis of the AN!! Can your neurologist refer you to someone for some counseling or be of any help in suggesting therapies for continuing balance issues..?? I guess you are on some med. for the seizures??...

I know you probably don't have a lot of time for reading, however; a former AN patient has written a wonderful book about his journey, but also with wonderful resources and suggestions for new and Posties that I found a wonderful read and helpful in understanding what others are going through. He is David Douglas Shannon and the book is "Hell in the Head".. I got it off Amazon.com for $14.95... he actually lives in  the LA area and is an actor.. he had facial paralysis, , as I have,, and had a hard time dealing with his "aftermath".. as you said,, he did not have the outcome he was hoping for either.. and he was most angry also about the "why wasn't I told what all could happen"... it is a very good book which I read in two sittings,, and I don't even routinely read books.....................PM me if you would like more info on it.........

I am sorry about your situation,, I can also understand about your husband.. mine is VERY supportive, but doesn't like to "think" about me being in pain or having to deal with "hard" stuff,, so he tries to sugar coat things and "lets just move on with things" attitude,, which is fine and I try most of the time to have that "all will be fine " attitude,,, but I am the one still dealing with a smile no longer there, an eye with an weight in the lid that doesn't close well, a face that does not "respond" like other people expect when I talk to them, deaf on one side,, etc. etc. etc.............so I feel your pain as they say... my balance though is not as bad as yours and I am able to take my granddaughter to the movies occasionnally without "puking"...I do use earplug in good ear for most anything with loud noise,, to protect the hearing I do have,,, even when using a hair dryer,, which most people probably don't think about,,,

Please come on here to vent and get support,, we care and understand your "issues",, I would hope that you could find someone professional or spiritual to talk to also to vent some anger,, (I too majored in psychology, ,,, a "while" ago,, but it is not much help to me either.. .. we are here though and I wish you well ... let me know if I can help anyway,,, Jane

[LizAN]

I only have a moment to post, but I want to say this:

AN surgery requires breaching the dura, i.e. the lining of the brain.  It can lead to a brain fluid leak.  How can this not be brain surgery?

Liz

[It is what it is]

I join the others in adding my support and caring about all you are experiencing.  How difficult it must be to have little ones while having all these physical things happening.  It makes sense  that you are grieving all these changes.  As you know, sometimes our grief and stress can trigger a medical depression that can be treated by therapy and/or medication.  You deserve support and a therapist may be able to offer that to you in a way that your family members and friends can't.  It is difficult to process grief without support.  Thank goodness for this list!!! 

Karen

[Handma1d]

Crazyjster,
Girl, I get it! You are in my prayers. Perhaps a "hands-on" experience might help your spouse to get it - give him an earplug, spin him around many times while standing on an unsteady surface, e.g., a big pillow, turn on a strob light, add loud, disorienting sound and turn him loose! It can't hurt and maybe it will help him get it. I find it frustrating because AN is an invisible illness to those dwelling outside of our collective skins. I refuse to explain what's going on every 5 minutes to infinite individuals whom I do not even know. I can't do lots of things I used to do so I am focusing on thoroughly enjoying the things I like and can do still. Also advise a therapist - individual and/or couples. I did it and it was most helpful. My spouse is sensitive to my needs but we are creatures of habit - it takes time and patience to retrain ourselves, e.g., remembering to stand/sit on my hearing side to talk to me, etc.
I am so sorry, friend, truly. If I can help, just "holler." God is with you.
Peace,
Diane

[joewhitmore]

Thank you Diane. I'm about 3 months post-op and struggling lately with Balance/Fatigue/ and Depression. Your comments blessed me.

[Glssliperr]

I am newly diagnosed, too.  I am also very familiar with the stages of grief and I feel every one of the. Right now is anger,  I'm 28... this shouldn't be happening to me