Still in the recovery phase

[Mo Ro]

Hi everybody!

I know I'm like the worst postie ever but my 2 year old really keeps me busy and exhausted! I am happy to report that I survived my October 7th translab at Duke.  The surgery lasted about 7 hours and I have had absolutely no facial paralysis or pain - which was my biggest fear. Woo Hoo! The tumor had grown the 2.5 cm since May.  Glad we didn't wait any longer! Even though I felt a overwhelming dislike for my surgeons, the hospital and the entire state of North Carolina for a couple of months post op (I know it makes no sense) I am actually very pleased with the outcome and I thank God for sending me to Sampson and Fukushima. 

That being said it has not been easy. If anyone had asked me the first 6 to 8 weeks post op if I was glad I had opted for surgery, I think I would have considered slapping them.  The first 5 days (which I spent in the hospital) post op was horrible. I was constantly vomiting and had a truly terrible headache.  Not to mention that my vision was was off a bit.  I kept asking if my head was on crooked.  I honestly thought it was but my vision was cocked to the right about 20 degrees.  Thankful that cleared itself up in about 5-6 days.  But the dizziness has been the worst, I am still attending vestibular rehab twice a week and I'm not sure how many more visits I have to go (my therapist is remaining strangely quiet about that).

Around 4 weeks post op I started having some drainage. Eww! And after 3 rounds of antibiotics I ended up having to have another surgery on November 14th to remove the infection.  I was really upset about having to have surgery again.  Something I had been swearing would never ever happen again.  But in the end I'm glad I did.  My recovery which seemed to not really be progressing at all prior to the second surgery really started happening.  Rather that feeling awful all the time I am having many more good days versus bad days.  Although the PICC line was a pain it was not as terrible as I thought it would be but after 18 days of it I was contemplating removing it myself.

Being deaf is not nearly as horrible as I imagined it being.  I prefer it to the distorted hearing that I was experiencing before surgery; it's much less confusing for the brain.  The headaches are manageable and becoming less frequent.  And the dizziness is slowly getting better.  I'll be glad to drive again, hopefully that will come soon.  I do feel as though I have some how managed to get ADD. I have had a very hard time doing anything for an extended amount of time (another reason I haven't posted).  I just can't concentrate.  Very aggravating. 

Now that I've had a chance to complain let me finish by saying that things are getting better and I do have very high hopes for 2009 for myself and all of us.  Good luck and God bless us all!

Post again...sometime,
Mo

P.S.  Did anyone else have to have their back stitched up (from the spinal drain) without it being deadened? OUCH!!!

[leapyrtwins]

Mo -

good to see you're alive and kicking!  We always wonder how our fellow forumites are doing.

Although you've had some rough patches in your recovery, all in all it sounds like things are getting better.

As someone who is approximately 20 months post op, I can tell you that one day all your post op "pleasantries" will become just a distance memory for you.

Keep the faith - and thanks for the update.

Best wishes,

Jan

[sgerrard]

Even though I felt a overwhelming dislike for my surgeons, the hospital and the entire state of North Carolina for a couple of months post op (I know it makes no sense)...

Oh, but you are on the acoustic neuroma forum now. It makes perfect sense to us. 

That sense of ADD and not concentrating sounds familiar. It took me a while to get back into things, which was rough for a while, since doing computer programming kind of demands some concentration. I managed to put up a good smoke screen long enough to get back on top of things, though. 

I share your hopes that 2009 proves to be a good year for you and for all of us.

Steve

[lori67]

A 2 year old keeping you busy?  That's odd!   

Glad to hear things are going well and I know they'll continue to get better for you!

My surgeon is at Duke now - did you happen to see a Dr. Kaylie while you were there?  Sweet man!  I miss him!

Oh, and I didn't have a spinal drain, but that does sound rather painful!     I think I would have said a lot more than ouch!

Lori

[lacey7]

Mo,
Sorry I'm late getting on about this post.  Been gone awhile.
YES, I had a spinal fluid leak when I was home from the hospital about 3 days.
I had to go back in, and they had to go back in the same places they did the AN surgery, and yes, they had to open up my tummy again, to get more fat.
I had to stay in Intensive Care for 5 days....b/c I couldn't move.  They didn't want me moving anything.  Not really a pillow, either.
The morning of the 6th day, 2 guys who I didn't know, came in to take the drain out of my back.  I asked them questions about who they were and WHAT were they doing?  ha.  It did hurt to pull that line out....he told me to count to 10, and it would be out......then they did a few stitches there.  I did say a few good things to them.....I didn't care....never saw them before, and never will again!!!  It did hurt, without any anesthetic, or something to deaden the pain.  It was over with in about 5 minutes......so I was ok after that.  I was so excited that I could move again........but one of them said NO....you have to wait until your doctor comes in again before you move, or turn over.  I was dying to change positions.  It was around 6am when they took it out, and I had to wait until noon.  Finally he came in.
I guess it's better not to know everything that they are going to do to you. 
Take care.
Lacey

[Jim Scott]

Hi, Mo:

Thanks for taking the time to post.  My son is 27 years past being a 2-year-old but I vividly recall trying to keep up with him at that age.  I worked nights, my wife worked days so I had complete responsibility the little guy for about 8 hours every day (Monday through Friday).  They can be a handful but I wouldn't trade the experience for anything.  Because of all that time we spent togeter prior to his going to school (and even later, after school) my adult son and I have an excellent relationship.

Although your surgery was successful the post-op problems were obviously frustrating, especially the incision drainage.  Ewwww!    Fortunately, you got through all that and seem to be on the mend and functioning pretty well, all things considered.  The SSD is a handicap, for sure, but definitely surmountable.  Your concentration will improve, albeit slowly.  Look at Steve!  Just fake it for awhile. 

I'm so pleased to learn that you're improving and moving on with your active life.  I share your high hopes for the coming year.  Drop in here anytime....you're always welcome! 

Jim

[Catflower]

Hi Mo

I also got an infection in my incision and had to have it opened up, cleaned out and the titanium mesh removed.  I had the pleasure of a PICC line for six weeks and was definitely happy to see that critter go.  They stitched up my incision from the lumbar drain without any numbing.  I guess they figure that what we've been through with the AN removal we can take anything. 

Linda in WV

[wendysig]

Hi Mo.
It certainly sounds like you've been through the wringer.  I have a fairly high tolerance level for pain but can't even imagine what it would be like to be sutured without having the area numbed first or why anyone would do that to a patient.  It sounds like you are on the road to a good recovery and have a great outlook.  Having a busy life helps keep you grounded, I'm sure.  Please keep us updated on your progress.

Best wishes,
Wendy