Surg. last friday...questions?

[deea]

My life seems to to running in another universe...everyone is so slow and its driving my crazy.  I need to have things done and don't have the patience to  let others help.  They are trying, but I  would just rather do it myself.  My daughter from the other side of the state, and a PA did come over this weekend aand we broke out....she took me to Sams club and let me go in a couple of shops before the crowds becasme too large....concerned about germs and so many illnessses going around now.  It felt great.  I have been working on my balance and facial exercises, not fun, but I do seen some progress already I think.  .

Thank you all for your prayers and kind thoughts'  They all helped.  Please keep my townmate Connie, in your prayers also as she awaits her surg. in the upcoming week or so.

Claudia

[Betsy]

Deea!  It's so good to see your post.  Your sister did a great job keeping us updated.  I think it's amazing that you're up to a trip to Sams Club so soon.  Glad to hear you're getting results from the exercises too.  Just listen to your body and don't over-do it.  It's so hard to have patience when your mind knows what needs to be done but your body isn't up for it yet.  You'll get there!

Betsy

[Rc Moser]

IMO you will find most things and your feelings will not be the same, some good and some bad. I suggest if you can read read up on your new found affects after your operation.

I find that the Helsinki study report on Post An'ers is a good place to start. http--ethesis.helsinki.fi-julkaisut/laa/kliin/vk/levo/vestibul.pdf    another good site to read      www.blackwell-synergy.com/doi/abs/10.1046/j.1526-4610.2002.02171.x -.
and        http://www.theblackriver.net/wobbler/wobblercognitive.html

These are some of the problem you might face that they don't tell you about. Well, they didn't me, Hopefully you will have none of these problems. Hang in there it's going to  take some  time to even get back close to what normal was.

Took me a week just to get out of the hospital bed, three mouths to regain 80% of my eye site in my AN side eye. 4 months before I could even think about not putting eye drops in my an effected eye. Hopefully you won't have headaches which is the worst for me.   Need to slow down you will most likely find you will get worn out every easy for alittle while and take things slower.... Rc.

[deea]

maybe I am not making myself understood....my tumor was much larger and sticky than had been expected.  I do have what the Dr. is hoping to be tempory AN side para. He was able to strerch some but had to  to cut one nerve.  I do have hearing in the AN ear, metallic  sounding, and I am finding noises extremely, and at times almost unbearably loud.  I do not sleep, do not require pain med other than tylenol and muscle relax which I have taken prior to all this due to MS. 

I am looking to hear if anyone else has delt with this inability to not be in constant motion......this is one of the strangest things I have ever lived with. It isn't the steroids, I am already tapered off...this whole extreme energy thing started back the beginning of the tumor thing other than the week or so prior to surg, during which I slept a lot,back to the inability to be still again,

My family is having a fit.....tonight I GOT IN TROUBLE because I went down to the basement and did a load of laundry, I  am hiding in my room until my husband goes to sleep and then I can get up and clean,  Believe me,

[deea]

I got cut off....I was saying I was NOT like this before.   I an thankful that all is going this well, just trying to understand why this is like this and if anyone else here has exterienced similiar reactions,

Claudia

[leapyrtwins]

Claudia -

good to hear from you.  Being a post op patient isn't easy - and as I'm sure you've heard, it all takes time and patience (something I don't have a lot of).  I totally understand your issue with your family not wanting you to do too much.  My doctor gave me permission to do things like go up and down stairs, but my mom who was living with me post op wouldn't hear of it.  Even though I felt well enough to do stuff and the doctor said I could, she liked to overrule me.  Very frustrating at my age - 45 with 2 kids of my own and having my mother telling me what to do.     But you have to remember, your family has your best interests in mind; they love you.

As tempting as it is to overdo it, try to squelch that tendency.  Sometimes you think you're just fine, not tired at all, and then the exhaustion will hit you.  Remember you've been through major surgery and your body needs time to heal.

I don't know what the need for constant motion is all about - didn't have that problem pre or post op.  Maybe someone else on the forum had this experience and can give you suggestions on how to cope with it.

Jan 

[Rc Moser]

Again, my recommendations is to start reading up on problems you may encounter. Another good site http://thalamus.wustl.edu/course/. ( explains crainal nerves and there function, google search may find better ones) Mine was also a large and sticky tumor took 18 hours to get it all, luckily for me they didn't have to cut any nerves.

IMO this lengthen the recovery time at least it did for me, my doctor thought I would be up walking the next day, didn't happen I was on Morfin for 3 days due to the head pain.  A month after my operation I was thankful for being able to go for short trips and walk out side for a couple of hours a day. I too didn't understand some of the stuff that was going on. I also couldn't sleep very long due to head pain, nightmares, twitching, and roaring in my AN side ear. Noise still is a big problem for me 3 years 11 months out. If your on any meds they  may have some side effects. read up on the side effects, may explain some of the stuff you are experiencing. My biggest hurtle was when I thought I was recovered. I soon found out that my temperment, patiences, and ability would never be the same or back to normal.

If your facial nerve was weaken it will probably be the last one to show any signs of coming back. This nerve effects watering of the eye, blinking, and the side of the face you AN was on. I still have no lift on that side I can feel something wanting to lift and can get alittle movement sometimes, but I am pretty sure it is as good as it going to get. For me At least you have to look close to see the droop on that side and my eye does water some.

[Jim Scott]

Claudia:

I was pleased to read that you're recuperating fairly rapidly, but I was sorry to learn of your post-op complications.  I can relate to your impatience.  However, I was always impatient, an inveterate list-maker, unable to relax if there was anything left on my 'to-do' list, so I can't blame my AN for this personality trait.  That being the case, I have no explanation for your sudden need to be in near-constant motion.  It may be an emotional reaction to the enforced rest the surgery and pre-op symptoms made necessary.  I suppose it might be organic/physical, although I don't really see how, but I'm open to possibilities.  In my case, my relatively normal state of impatience was simply exacerbated by both the pre-op symptoms, the surgery and the usual doctor's post-op instructions to rest, rest, rest. 

You may be encouraged to learn that I was driving within two weeks of my surgery and pretty much back to normal within a month, although it took nearly a year to fully return to feeling normal.  However, I'm still impatient. 

Jim

[Battyp]

Oh leapyrtwins you made me laugh. My mom took care of me after surgery. She said I was like dealing with an unruly teenager  LOL  I can so relate to me wanting to do things and being told no by my mom that I would sneak and do things when she wasn't here. I think daily she would pick up the phone when I would call to check in with, "now what did you do" as i always had a little accident or trouble of some sort. My mind was racing but my body couldn't keep up. ( I remember being restless and frustrated because I couldn't do what I wanted to do. I'm two years out and still hit that road block frequently. 

[leapyrtwins]

Battyprincess -

It sounds like we both have "typical moms".  Mine literally wouldn't leave me alone for an hour since she was convinced if left to my own devices I'd do something I wasn't supposed to do.  And to be truthful, she was right.

I got so tired of sitting around and being a patient.  It got to the point where my kids would tattle on me every time I did something I wasn't suppose to.  I actually had to bribe them at times "not to tell grandma".   

Although I was glad when she finally went back to her house, looking back I was lucky to have her help.