PRAYER THREAD ~~~~lasel22

[selmaS]

Hi ALL please wear your purple tomorrow Oct. 13th to help show awareness for Chiari and support for our friend as she heads in for her surgery.

Sending Good vibes ~~~~ and prayers to her and all in charge of her care <3


and sending Healing MoJo for a smooth recovery.

[lasel22]

i over reacted a little with the hair.  it's a lot but not as much as I thought.  once I could wash it it does cover most of the incision.  my doctor explained to me why he shaves the entire bottom portion of the head.  it's to find the true midline of the head where the muscles meet and the bottom portion of the skull is so the incision is made in the proper location.

my night staff was pretty quiet although my roommate need care almost every 30 minutes to an hour.  it was the cleaning crew in the morning at 5:30 buffing the hallway floors that was horrible.  then the doctors come in the halls at 6 talking so boisterous and laughing like they are at a bar.  otherwise, I was very happy with the care there.

[Emme80]

I'm not allowed to have steroids...quite some time ago, I was put on steroids for a horrible bout w/ Pneumonia or Bronchitis....I'd remembered they didn't agree w/me from a time before that, but couldn't figure out why. I quickly remembered...my mom had to take me to hospital b/c I thought I was going insane. I mean I thought I was going to have a heart attack or...ultimate freak out. A Dr. referred to it as"Steroid Psychosis". (Asked if I was Bi-polar!? History of Anxiety, but nothing to ever indicate Bi-Polar...just on Steroids must I become Bi-Polar. :/  
... "Steroid Psychosis")
SO, my Neurosurgeon was made accurately aware of this-needless to say, no step odd given...THAT would've been a true nightmare! Sorry that was of no help, just my "Steroid Psychosis" story! :/

[KerriC1]

I wasn't given steroids after surgery so I can't offer any insight to your question. The only thing I can think of is that steroids help inflammation and normally as a side effect can give you a little energy, and since coming off of them the fatigue of surgery and its trauma to the body is rearing its ugly head.. Makes sense in my chiari brain anyway! Lol

[lasel22]

Well, the dexamethasone was definitely a miracle worker for me. I took my last dose yesterday and have been feeling worse since coming off them.  The Dr said this would happen but it still stinks.  Had bout of sweats and nausea yesterday morning and general fatigue and weakness throughout the day.  Today, I thought having breakfast in bed before moving around would help.  Still don't want to move much though.

Anyone else experience this downfall after steroids and how long till you felt little better.  It's almost like a hypoglycemic feeling and I start to feel clammy after being up for a while.

[selmaS]

@ lasel22- I was ot on steroids post op....

[selmaS]

Glad to hear your hair was not as bad as you thought....it grew back pretty fast for me.....I am sure you will have the same experience.....Funny how they work in a hospital and are not aware they are not at a bar.....lol....

[selmaS]

  I had a lot of hair shaved as well.....down I looked like a cocker spaniel...and up....well lets just say it the way my dear daughter did...I looked like a hairy kreshna......oh and she took  me to see the play HAIR on Broadway.....she is so thoughtful.....but we have to laugh other wise we will not make it....

The only issues I had at NSH was the night staff....acting like it was the middle of the afternoon while we were trying to sleep...and while in ICU the nurses were not great with  my meds....but I had some wonderful nurses during the day.....and even the staff there to clean the rooms and bring the meals were just so friendly and helpful.

[KerriC1]

Wow! I'm so surprised at your turn around! I had a miserable first 3 days with pain and nausea/vomiting. And couldn't move till day 3. I even developed a bruise on my left ear and side of head from laying in that position for 2 days straight! Please be careful not to over do it, even though in sure you feel better than you have in a very long time. So glad to hear you're doing so well!

[lasel22]

Yes, I know I should take it slow and I do wonder how much is the steroids and Valium helping my symptoms. My balance is shaky but not like before surgery where I felt somewhat like an internal trampoline. I was also able to sleep pretty flat last night without having major ringing in my ears and seeing spots in vision.  So far very happy.  But steroids always helped me a bit in the past so the test will be coming off them.  PT has given me the all clear to go home but haven't seen dr yet.  One negative is the amount of hair he shaved. The entire back off hair is gone!  I look ridiculous.  I must say I have had a very positive experience so far with north shore university hospital.  The staff has been wonderful.

[selmaS]

  Goodness I did not get online for almost a month...!!!

Just be careful that you do not over do it....many times it is the meds in our system post op that we feel so wonderful and pain free.....but as those meds wear off we can have some return...or the surgical site pain may be more apparent.

It is also possible for us to over do it and feel we can do more then we should...so take your time and go slowly.....<3

[Emme80]

Wow! A lot quicker than I was! Keep it up but also keep watch...it takes a lot out of you! Be careful with yourself!
Speedy recovery.

[lasel22]

Hi everyone. Thanks for the prayers.  I'm doing very well so far.  Absolutely no pain or nausea waking up from surgery and minimal pain since, hardly need pain pump.  Walking is unstable but he said that is completely normal at this point due to the invasive nature of procedure and it's already lessening.  Thanks for the support!

[selmaS]

  Praying all went well and for a smooth recovery <3

[lynnbrook177]

Thinking about you. Sending good vibes for a successful surgery and a great recovery!!!

[Emme80]

Many prayers sent for you for a successful surgery & a smooth recovery in front of you!

[lasel22]

Thank you.  It's not till late in the day, so I have all day to be nervous!

[Jo2215]

Prayers are going out.

[KerriC1]

Thoughts and prayers for you today