One Month Follow Up Friday!!!

Well, we made our trip back to Novi yesterday.   Hit some NASTY winter snow around Grand Rapids, cars in the ditches everwhere.  Glad we made it fine!

Seen the neurotologist and he said that the swelling in my brain is a bit more that usual, but not looking as a concern because it has started to come down.  Problem is that my healing time is going to go way slower and I NEED to be VERY careful.   Basically, need to keep my head up as much as possible, be doing nothing near strenuos at all, and to be getting plenty of rest/relax time.  If I don't, it will get worse and I could have more complications.   

The paralysis situation is very slowly coming down too, but just need the patience with that.  Since I had totally fine facial issues for a week after surgery, that means I will improve (unless I don't rest and take care of myself)   ((TRUST ME, I WILL)). 

I basically got almost every symptom that could come along after (for me it was one week after for some things) this surgey.    Delayed facial paralysis, which includes the eyelid not closing & double vision, that side of nose internal swelling feeling, tinnitus (ringing and noises in the ear), metallic taste (or taste disturbance and mouth dryness), dizzy and balance issues, hearing loss.   Well, since most of these things have shown a hair bit of progress that is a good thing (also the fact they were fine in the beginning).

The doctor said it is hard to undertstand why everyones bodies react in such a differnet way.  ALSO as many of you know I was having (and still am) pain throughout my lower spine and neck.   This cold very well be part of what is going on with my body and not letting it heal properly.   Someone asked if I had even been diagnosed with an autoimmune disease becasue they tend to flair bad after major surgeries.   Well, after Trenton was born I had been being tested for something, but as time went on I wa better and lab tests started coming back normal (Odd??)

I told Dr. Zappia (the neurotologist) that my family doctor's nurse called after the MRI's and said the radiologist thought I may have a mastoid infection and to get on a specific antibiotic.  So, I did get on it and the next day asked Zappia what he thought.  He said due to the surgical stuff, the radiologist may not have been knowledgeable about it, BUT to go ahead and stay on it, just in case, plus this time of year is so bad for illnessess.  With the major dose of steroids I was on my immune system is down big time anyways.   (yesterday was my last day of steroid unless things get worse...yipee!!)

Also Dr. Zappia kept all my MRI CDs and reports that did my entire spine and is gonna run them by the neurosurgeon who worked on me.  Basically because my family doctor didn't think there was much to worry about.   Even Dr. Zappia said there were notes and impressions on every scan......need to find out more.   Neil & I were so excited at how kind they are there and how they take their time, etc.    Even after the hearing test came back negative he said I need to go back in 2 months and try again.   Due to the swelling so bad, it may come back.  But if not they took the time to explain other options.  They put a little sample of the BAHA (bone anchored hearing aid) on me and explained how the bones inside your skull work with noises, etc.   It was AWESOME....I could actually hear.   I said right away....give me more info in case my hearing don't come back.    WELL, it is another small surgery where they put a titanium small rod into a bone behind your ear.  Then there is a little device that snaps onto it (mine would be the smaller one and it's size looked about like a starburst candy size).   With my lovely thick hair and style, you'd never see it.   You can't get it wet, etc., but wow...it was neat.    Of course, then comes the price $18,000 YIKES.   Some insurances will pay for it though.      Basically Neil said even if ours won't, we'll be figuring out how to get it.  Being young, I'd have a long time, plus between him  & the boys I think they are already tired of me not hearing on that side.  Like Neil kept saying things on the way down to the doctors, but I didn't hear him (because he was on my left side). 

Oh well, now I have some thoughts, and happy to know that there is progress, even though it is really going slow.   No driving, no nothing really for awhile.  It''s all later because of the excessive brain swelling.

So, we need to keep praying that swelling goes down, and when it does, the hearing progresses too.  Also that there is nothing else seriously going on with my body.  I can't stand taking these pain meds, but I also can't stand being in the pain.

I still have to limit my talking :-(   because my jaw muscle that was cut is also swollen a bit and it is affecting nerves too!    Nerves and the brain are the longest and hardest things got heal.  SO, I AM going to be very good!!    I want to be able to enjoy Christmas and start off the New Year feeling somewhat normal.

I am so thankful that God has given me such a wonderful family, friends, my good ole facebook friends, my Acoustic Neuroma forum friends,  and of course, that Doctor who is so patient, caring and thoughtful (along with his caring staff, and other doctors, etc. who have dealt with me)!      Now, just need help with this interior of my body stuff ;-)

The doctor reminded us once again that just because one day may be great, DON'T over do it, and the next day may not be as good.....it can take months to heal up.

Well, hope you're enjoying my informative book (not blog) I have been writing!!!   Never ever, ever thought it was gonna be this difficult for me.   But thanks again for all the comments, emails, facebookd messages, cards and calls!
Love, Denise