Well it's me!

Don't know where to start, and this one will be long.  I can finally see out one eye totally clear while wearing a p  atch over other bad eye.  The spinning stuff is going away, yeah!    But to start I did end up backwards again and ended up in ER here on Friday....here we go:

For fellow ANers, there have been new studies showing that people being on the steroids and anti-virus medicne after surgery for a longer period were at higher risks for the cerebrospinal fluid leaks and bacterial meningitis and seems like something else.   Since those are some of the scary life threatening side effects, many doctors (which include mine) are limiting the use of the drugs.   So, I ended up on steroids for only 2 or 3 days in the hospital.   No anti-virus med for the shingles/herpes stuff either.   Well, I did research and found the study on that and it was about 5% difference.   Yes, I would prefer to not take medicines that may increase my risk of issues, BUT...........unlucky me ended up not healing properly on my own.  

So, when the delayed facial paralysis started, they started me on steroids.  So, things were looking up after seeing him Wednesday.  I had also commented my back of my legs to the lowest part of my back (more pelvic area hurt).  He told me to go ahead and take pain med every 4-6 hours to stay ahead of the pain and it was probably just from being on table so long, etc.    WELL, Thursday morning I woke up with a rash and felt so run down.  It ended up being a drug allergy reaction.  So we decided to quit the pain medicine and just do regular Tylenol over the counter.......thought the pain was O.K. and I'd be fine.

Well, NO (of course not....what else can go wrong).   I ended up in such severe pain Thursday night, I was a huge mess.   I found out in the morning Nelson heard me crying in pain and making noises and trying to take a hot bath at 4 am.   It was getting worse and I told Neil to leave for work, but I'd be calling the doctor 1st thing when they opened to ask what to do and possibly what was causing the pain so bad.   My boys are so AWESOME, they were available to help me out if I needed.  I found that I laid hunched over like a cat position and not move even 1/2" I didn't have the pain as bad.    Lovely hey? 

**By the way, I LOVE my neurotologist Dr. Zappia from MEI....he has spoke with us everyday and takes the call right away and has called to check in on me.   None of the issues were wrong from him, it was my stupid body and the way it responds.

SO, Friday I called down to MEI in Detroit and the nurse got doctor to call me right away.  He said he was so sad I was in so much pain, and so hard that we live far away.  We decided to try to go to our ER and hopefully they would call him and work with him to find out what's going on.    Well, they did.  Dr. Kokx and a nurse Sherry were awesome!!   Although they were a little lost because you could tell they haven't done much dealing with brain surgery patients.   

They started by wanting to make sure my leg pain wasn't blood clots in my legs.   They also had to run a brain/head catscan to try to make sure there wasn't bleeding going on.   Well, no blood clots, but they ended up giving me stuff stronger than morphine for pain and within 5 minutes I felt GREAT.....something was going on with pain.   They did a bunch of labs and all came back fine.  The discussed with me some of my history of previous back or neck aches.   They also spoke with Dr. Zappia and went over everything and determined that I have some major nerve issues in my back and they flaired up probably while laying in the surgery and at the hospital.   So, that is why when at the hospital and on different pain meds, I felt GREAT by my 3rd day (except for I had a week of some good short term mermory loss....possibly due to anesthesia.    So, now this stupid area of my body flaied up because I went off pain med because of allergic reaction..........ugh, thought I was fine.   It truley is going hour by hour for me!    

The cat scan did come back with some swelling, but it sounds like it wasn't anything to abnormal and they are supposed to have sent the CD's righ to Zappia in Detroit to go over.   But I was told the paralysis came from the delayed reaction of swelling.   They gave me some shots of steroids in hospital and sent me home with a different, stronger prescription of steroids for the swelling, so hopefully things start to clear up and they are...will post more later too.   They also gave me high dose of a different kind of pain meds. and said to take every 4 hours no matter what and get a total MRI from neck and entire spine to see what the pain area is for sure ....possibly dual sciatic nerves, but they are not sure.   Why they wouldn't just run the stupid tests....well I'm sure it's because the pain medicine made me feel good and they got very busy.  (yep, that's my luck.....get one thing over with and move on to another.....sigh!)   Hey, at least my deductible has been met :-)      

Wow, I know that's a lot, but  I sure have had a lot of crap and like Neil said 2 steps forward, 1 step back, well, I felt it was opposite.    Anyways this new pain med is awesome and I'm feeling so good.  No rash, thankfully!!  My kids were looking at me yesterday morning like what the heck happened, I felt like dancing!!   Just crazy!   So, now that my body isn't addressing this severe pain, the brain and skull should start to focus on healing right now.  

Need to take it one hour at  time.   The steroids throw in so much insomnia and throw off the sleep, so I need to be able to rest at whatever minute I need.   I am fine talking on the phone, while resting and closing my eyes, but company needs to be limited, not sure when I might sleep.    I do turn ringer off on phone if sleeping, so don't hesitate to call.   

Tomorrow I am gonna start by calling my family doctor to see about getting MRI's started or get me a good refferal to a neurosurgeon that does brain (because of still having my other brain tumor) and does total spine down to sciatic nerves.   The neurosurgeron who did my surgery in Novi is great, but don't do as much spine and I HATE driving that far.   SO if anyone knows of good neurosurgeon to point me at, let me know please a.s.a.p. so I can make some calls to see who does it all.   My neurotologist and people at ER said there will be good ones down in GR, that's no as bad. 

O.K., enough for now.   I actually need to be careful so I'm no puttig stress on my eyes, etc.   So I'm supposed to limit my time.   Listening to books on CD (thanks cousing Sharon Peterson for getting me some) and resting and doing little things and going for walks and stretches, etc.   My balance seems pretty o.k. right now, and my eye sight has improved too, so going the right way.    I had some hearing while in the hospital so they figured  my hearing was still intact.  Well now due to the delayed paralysis and swelling I don't have it.  Hopefully when the swelling is gone, the hearing will come back with my better eye stuff, etc.      I am having noise issues, and hopefully that will get better while the swelling goes down too.

I can't say thank you enough to EVERYONE!   Just keep praying that it is getting better.   There was NOTHING that my surgeons did wrong or anything.   As far as the tumor surgery went, it was all great, the doctors did a great job!!   It was all my stupid bod that had to go and throw things off......sigh again.

I will leave it now and post more later.

Love DENISE