One week 'til I'm rid of Lefty, that jerk.

[lrobie]

Jamie,

I'm happy to hear you made it through surgery and are now on the road to recovery.  I feel like some of what you're saying could have come from my thoughts.  I had my surgery in July and I'm still feeling the wonkihead feeling.  I'm assuming I'm going to be one who takes a little longer for this feeling to go away.  I continue to do my own vestibular exercises, but will be seeing a certified vestibular therapist next week.  There has been some improvement, but it sure seems to be taking a long time.  Everyone is different though, so you could be feeling much better sooner than you think.  I do recall holding on to things in the car while my husband drove me around.  My mother-in-law didn't understand why I didn't want to go for a car ride.  It's difficult, but try to keep a positive attitude.

Take care,

Lisa

[agnes]

Hi Pajamas,
So glad to hear that your surgery is over and everything appears to have gone well. Just try to take one day at a time.
You are still in our prayers.

[It is what it is]

I keep a big cushy pillow in the car for long car rides so I can cushion my head against the window when I'm a passenger.  Lisa, I'd love to hear about your therapy with the specialist.

 Karen

[Pattiken]

Hi Karen and fellow posties -
I had middle fossa done 11/14 .  There was a question by my neuro as to whether I had a vestibular schwannoma or something that mimicks it on an MRI.  A little news I wasnt expecting and the only way to be sure was to go ahead and operate or wait to see if further growth/damage would occur in 6 months.
Needless to say, they operated.  I have what is called a choristoma of the IAC - apparently I hit the lottery on rare rumors.  It could not be removed because its wrapped around the bundle of nerves.  They don't know much about the way these rumors grow or don't.  I will most likely  have to get MRIs for life.
I was not elated but to quote you, "it is what it is".
In hospital for 5 1/2 days.  First 3 were really rough. I have all the balance issues as if it had been removed.  Frustrating. 
Coming home was great except I had awful spinal fluid pain and could not sleep.  I was not holding down food very well and all the meds were (I've stopped all except nausea med) making me throw up.
Thanksgiving night I was up from 10:30pm to 6:20 am with dry heaves, hot and cold sweats and awful gas pains.  Imagine if I had actually eaten turkey dinner!
Around 6:30 am I began experiencing vomiting and diarrhea at the same time. 
Luckily at my husband's urging, I had  a nurse scheduled to stay overnigh for first few nights  and she helped me with what I can only describe as a hellish hour.  Was ready to call 911 if it was not stopping. She thought I may have a bowel obstruction.  It did subside and I slept for 16 hours straight afterwards.
I wasn't sure if I should post my experience so far.  I know every surgery is different and outcomes vary.  I hope my worst days are behind me. 
If anyone wants specif details please pm me.
This too shall pass. 

Patti and tumah

[It is what it is]

Oh my!  You've been through a nightmare!!  I'm very sorry to hear about all of it.  Do you know about anyone else with your diagnosis?  I will be interested in your ongoing experiences and I hope you continue to improve. 

Karen

[Pajamas]

Just as an FYI here, I have landed myself back in the hospital with an infected incision.

Woke up last night with a pillow and hair full of slimy pinkish goop. Called my surgeon this morning and he told me to get down to the UCLA Emergency Room right away.

Docs said it's definitely infected and suspect staph. They spent a good hour squeezing junk out of the incision site and have done cultures and are waiting for the word. I had an MRI which was explained as,  "unimpressive." Doc explains this as the imaging not showing anything really super acute but also since it doesn't show anything super acute, it means that I'm not in the clear. It made more sense when he explained it!

They are watching me tonight, pumping me full of antibiotics and other bloat worthy drugs. Nothing to eat after midnight because they are still thinking about going back in to the incision for a clean out.

OH PLEASE someone here tell me that they've had this happen to them.

I have been so sad about the slow rate of my recovery and I think that this infection must have really been putting my body through hell over the past two weeks.

I am so bummed to have to be back at the hospital again for 2-5 days but I am thankful now to be under the watchful eyes of the nurses and doctors here at UCLA.

Thanks all for your support.

Jamie

[It is what it is]

Once again, I'm sorry to hear about this additional complication!  Please be good to yourself.  With caring,  Karen

[Pattiken]

Dear Jamie
So sorry to hear about this secondary infection - not uncommon I have been told. Doesn't help you I know.  UCLA should be the best place to be and hopefully not for long.  Don't let anyone touch you without scrubbing first.  Be strong cutie.
Patti

[kmr1969]

Jamie,

Boy, I am sorry to hear about your complication.  But, maybe you are correct and it was factor to your slower than desired recovery.

I'm sure that ur docs will get it all figured out.  Just follow directions and do ur best to stay positive.

I got back home to MD yesterday.  Slept pretty well last night in my own bed.  I truly hope that you are back in ur own bed soon.

Please let us know how u are doing.

Ken

[millie]

Hang in there Jaime. I have read these things can occur after surgery- I'm sorry you are in the hospital but it is an excellent one and they will take good care of you.  Praying with you.  Mil

[Jim Scott]

Hi, Jamie ~

Thanks for updating us even though the news is a bit negative, for now.   For what it's worth, wound infection occurs in about 15% of AN surgical patients. 

I hope (and will pray) that your incision is not seriously infected and that antibiotics can handle whatever is there without a need to re-open the wound to debride it. Please try to keep us informed as best you can (under the circumstances).  Thanks. 

Jim

[Pattiken]

Jamie -
Did you get to go home or still at UCLA for secondary infection? 
Cruel joke this bugger is playing on you.  I hear the frustration in your words....can relate.  I want to be back to normal too.  May this week be a better one for you.  I think being dependent on family or friends for what feels like or friends is hard.  I've been reminding myself that this recovery can't be rushed so I am TRYING to go with flow.  Please keep updating your condition as you are able.
Since we are coastal neighbors (Malibu) maybe we can laugh and commiserate over lunch one day soon.  Keep the faith kiddo.
Patti

[Pajamas]

Hi Patti,

Yes I am still at UCLA. I've been getting rounds of massively strong antibiotics for my staph (yes, concluded it's staph) infection, and tons of other crap. There is pus oozing out of it which is apparently good news.

Doc just came in to tell me that I will most likely be headed into the OR in the morning for what they call a wash out. They will reopen the incision and clean out the infection. I'm not looking forward to this.

A team of infectious disease specialists have also been in and have mentioned a possible spinal tap to rule out meningitis. Basically, I'm horrified and exhausted.

I AM however, hanging in there. I know that everyone here is doing what is best for me.

Laughing over lunch seems like such a fun but far off dream! I can't begin to imagine what it will be like to feel normal again.

Jamie

[It is what it is]

Jamie, I sure hope you continue to send updates.  Who is there for you now? Those of us who have had surgery will feel at peace with what is happening to you only when you are on the other side of this.  With caring,  Karen

[Sheila1977]

Jamie,
Just adding my prayers to your warrior group here.  We are anxiously waiting to hear that you are getting healing.