Post-op blues

[DLM4me]

First, I haven't forgotten about this wonderful forum...it's just that I'm unable to focus my eyes [most of the time], so posting/reading is difficult or impossible. Which brings me to my point: I'm really having post-op blues.

Since being released from the hospital last month I've had to make several unplanned trips to House to see various doctors.  I've had horrible headaches, the double vision returned, the inability to focus my eyes persists, my blood pressure and pulse are very high despite additional meds, I'm not sleeping much, and I generally feel like crap.  But the absolute worst things are the brain fog (will it EVER go away?!) and the inability to close my right eye.  I knew that facial paralysis was a possibility, but somehow I didn't think it would suck so much.  But it does.

Sorry for the down tone of this post but I wanted to give something of an update and unfortunately it's mostly bad.

[Jim Scott]

DLM4me ~

I'm very sorry to learn of your post-op problems.   Please don't apologize for your post.  You certainly have reason to be a bit depressed. We can empathize with you and frankly, if you can't vent here, where can you?  You'll be in the prayers of many for healing and a lifting of your spirits.  Remember - it won't always be this way.

Jim

[Debbi]

Hi DLM4me-

Jim is right - you never have to apologize for having a down day or days here.  Last year at this time I was headed back to the hospital with a post op infection, so I can somewhat relate to your frustration.  And, yes, the facial paralysis thing definitely sucks more than anticipated - the whole eye situation is particularly stressful, or at least it was for me.  I won't tell you it will get better, because you already know that and you are probably sick of hearing it. 

so, I'll just say that I know how you feel and I am sending you a big hug and lots of good thoughts. 

Debbi

[Lilan]

DLM, hope things look up for you very soon. I'm sorry you aren't having one of those super-speedy recoveries. In the long view, you are still near your surgery date, and I am optimistic that you'll see improvement. It must be very boring and frustrating to have a full month of brain fog! In the meantime, I'm glad you are in L.A. so you can have followup visits as needed.

[mimoore]

Oh honey I can relate... I did expect to lose my hearing but was not at all prepared to have facial paralysis. AND I didn't know the eye was involved when you have facial paralysis. The eye has been by far the worst of it!!! They were not sure if I had an AN or a menginoma(sp?). It sucked and I can't begin to tell you how depressed I became. One friend (and I will use that term loosly) said "Wow your face...that is such a bummer...if it was an arm or a leg...but your face...this is terrible." Not something I needed to hear.
I struggled for some time and then thought okay what am I going to do about this? I started to invent things to make my life easier (search eyewear). I became a master at taping my eye (which I will share shortly, I took step by step photos) which works great for me. I still tape it at night almost a year later, its not so bad really.
I also went to my doctor and went on antipdepressants and things started to look brighter. I kept thinking to myself this is not taking my life, this is not taking my life. So i went back to work after 12 weeks. Funny cause I certainly was not ready, at the end of the day I was sooooooooooooo exhausted. I remember one day I put my boots on the wrong feet and was too tired to change them. Looking back I am glad I went back, made me feel kind of back to normal. I teach kindergarten so the children were very loving and accepting.
Believe in yourself, YOU will get better. Do everything you can to set your body up for success. Remember we are here for you, been there, done that, try this!
Hugs Michelle 
Feel better!

[EJTampa]

DLM,
 
I'm very sorry to hear about your post-op issues.  I wish medicine were more advanced so none of us would have to deal with these frustrating after effects.  Outcome results just seem so random sometimes, regardless of where the surgery is performed.
 
I will keep you in my prayers and hope your issues resolve themselves very quickly.
 
Ernie

[CHD63]

DLM4me .....

So sorry you are having to endure the unpleasant potential after effects of AN surgery ..... it truly does suck and you have every right to have down times.  As Ernie says we have come a long way in treatment for ANs but medicine is an imperfect world because each of us have unique brain structures.  I will certainly keep you in my prayers, especially that these struggles will soon diminish and eventually go away!

Clarice

[MAlegant]

So sorry you are having a rough time.  I think many of us have been through this in one form or another, so this is the best place to vent.  I hope that you see more improvement soon-you are still "just out of surgery" and it wasn't a hangnail.  It will get better.  I'm sending you lots of good thoughts and prayers.
Best,
Marci

[Kaybo]

DLM4me~

So, I guess the Hokey Pokey just isn't cutting it for you anymore!  I will have to go back to my bag of tricks and see what crazy childhood thing will help lift your spirits!    Seriously, I know how it stinks to have surgery and NOT have things turn out the way that you think that they will.  I hope that you will begin to see more good days than bad and that things will turn around for you.  You will be in my prayers!

K

[leapyrtwins]

DLM4me -

as Jim said, it won't always be this way.

Healing takes time; you'll get there.

Having patience, while not easy at all, is definitely key.

Hoping you see improvement very soon.

Hang in there,

Jan

[nancyann]

DLM4me:  I will pray that all these post op issues resolve as quickly as possible.
I know it isn't easy,  but hang in there.
Continued healing,  Nancy

[Keri]

Hi DLM,
It's true what all have said.. time passes, it gets better. The eye thing is a pain. Solutions presented on this forum have been really helpful to me. Headaches are a pain too. I really hope your's go away soon. A month isn't that far out... I remember thinking I should be 'all better' at some of these anniversary milestone days, but those were some of the days I actually felt worse (like, i'd be 'fine' at 2 1/2 weeks, then have a horrible day on the 3 week aniiv, stuff like that).
I'm 3 1/2 months now, it's weird how some things are so much better, and now some things are worse ! (like my incision hurts more now than it ever has). Still I feel thankful and happy for the progress and am grateful for the support here on the forum.
Keep in touch and don't be hesitant to vent!
Keri

[DLM4me]

I'm having a great deal of trouble focusing my eyes this morning so I haven't read everything yet.  I wanted to point out a few things--and if my post is full of typos, excuse me please!  I'm normally such a nitpicker when it comes to spelling/grammar, but when you can barely read it's hard to proof your post before submitting (and I don't use a spellchecker).

This--the AN surgery and its aftermath--is just the latest in a LONG string of health problems.  It's been almost six years since I was able to work.  A year ago I finally had my Social Security Disability claim approved, so I'm receiving SSDI monthly benefits, Medicare, etc.  But not being able to work TOTALLY sucks.  But that's not why I'm mentioning this.  The fact is, my overall health is bad and it's affecting the way I'm NOT rebounding from surgery as I'd hoped.  After all of my other operations--spanning 30+ years--there was a pattern to it: Be sick, have surgery, have the offending diseased organ(s) removed or broken bone repaired, feel like I've been run over by a truck, and then DAILY start feeling better.  With this, it's just not happening as expected.   For one thing, the PROFOUND EXHAUSTION was a total surprise--even though Nancy had forewarned me!  My stamina has been sloooooooooooooow to come back.  I can't believe it takes so much out of me to do the simplest things, like shower.  I HATE not being able to drive.  And weirdest of all is that this is the first surgery I've ever had that actually CREATED new problems that didn't exist pre-op.  For example, the facial paralysis and its ramifications.

The net effect is that I'm very depressed--and that's another issue.  I've battled depression my whole life.  I've been in therapy and/or on antidepressants (as I am now) for decades.  The frustration I feel as I see myself struggling to rebound from surgery is immense, and it's definitely adding to the depression.  I feel helpless.  And like it's never going to get better.  I know, of course, that it WILL, but right now it just doesn't feel that way.

Thanks for listening.  You're the best.

[m4guzman]

Hi

I am 2 1/2 weeks and I feel your pain.  I did not except the hearing loss and the facial paralysis and the eye thing.  How are we suppose to balance if we can't see out of one of our eyes.  Just wanted to let you know I feel your pain because I feel the exact same way!!!

Marybeth

[DLM4me]

I saw Dr Stefan (the internist) yesterday.  We've been trying for weeks--since before surgery--to get my BP and pulse down, but it's not working.  He has added two new meds to what I normally take. We're hoping this works because with my BP and pulse as high as they are now we're looking at a potential stroke, brain swelling, etc.

Oh, speaking of high BP and pulse: Last night my sister informed me that I did NOT have brain surgery!  Really.  During a phone call that raised my pulse to 130 and my BP to 172/119, she said [after I had said, "look, I had brain surgery recently and..."]: "No you didn't.  You keep saying that but you DIDN'T have brain surgery."  I was just dumbfounded.  I felt like I was in the Twilight Zone.  I told her that she may THINK she knows more than my NEUROsurgeon and my NEUROtologist and the other six doctors on my case, but THEY call it brain surgery.  (Background info: My sister long ago claimed the role in our family as "the sick one"--although she's actually never had REAL illness, like I have.  When I lived thousands of miles away she milked this role for all it was worth, with every family member constantly asking how she feels, if she's gotten over her cold, her sore throat, whatever. She complains about EVERY ailment--things like pollen allergies that I have (100 times worse!) and never even think about, and definitely never talk about.  Then I move back home and take the spotlight off of her.  So now, instead of focusing on the PROFOUND surgery I had and its debilitating aftermath, she's actually trying to find ways to trivialize it.  Amazing.)