Set-Backs

My days are pretty straightforward...  The last post says it all.  

The excitement this week was a trip to the doctor to have my shoulder looked at.  He confirmed there is definitely something wrong with my right shoulder - quite likely a torn rotator cuff - again.  So he has ordered an MRI and sent a referral off to my former orthopaedic surgeon to get into see her again.  This does not make me very happy.  The past two shoulder surgeries had me off work for 3 months each and then it was up to a year before I was fully recovered.  This is a set-back in my recovery that I was not expecting.  I was worried about infection, meningitis, or a CSF leak, not a torn shoulder.  Depressing...

The other excitement in my life is I got my first payment from my disability insurance :)  Only a month wait!! That is good news!! Means my kitty gets to keep most of the money I had stashed away for a rainy day.  Now I can pay my part of the mortgage and buy groceries!

Really nothing to report... I finished reading a book I've been working on for months and sat outside enjoying the sunshine.

A Day in the Life of a Recovering Patient

My days are filled with cycles of activity and inactivity.  I get up, shower (or do it at night), go for a 20 to 25 minute walk, then come home and have breakfast.  This is all accomplished by 9:30 - and I'm very proud of that!!  Somewhere I read that if you keep a schedule while you recover you will recover better and have less difficulty readjusting to life after recovery.  

So I persist in getting up with my alarm at 8:15 every morning.  Okay, almost every morning.  I've had a few where I can't move until 9:00, but it's still not bad.  After breakie I usually grab the laptop for a FB visit and watch something on the PS3.  (We download everything we want to watch.  No cable or satellite - and locally we get 2 channels).  

Where was I??  Oh, yeah.  By 10:30 - 11 it's time for a rest.  Sometimes I watch a movie, sometimes I read, and sometimes I nap.  Depends on how little or how much sleep I had the night before. Lately I've needed shorter periods of rest - which shows I'm improving and healing - but I've needed more naps - which shows I'm back to my pre-op sleepless patterns!!!  I was so hoping that I would lose the 1 or 2 - 2 hours awake sessions with the surgery, but not so far. :(  Please, as I continue to heal, let me sleep through the night - at least once a week!  The nights of 4 hours awake at a time suck!

My hubby comes home from work around noon and I get up between then and 1 and have lunch with him.  Then, if I ask to run an errand or go somewhere off we go.  Short trips only to the grocery store or Walmart.   Usually I just grab my book and sit on the patio in my chair if it's nice out, and occasionally have a nap. Again, the nocturnal sleeping habits are messed up!  I don't know how I will manage when I go back to work!  I'm working on my lovely Birkenstock sandal tan lines.  I also read that you should not have sun directly on new scars - UV will make the scars more visible.  So I sit with my head in the shade and my legs from the knees down in the sun to stay warm.  I have a wide brim hat, but don't think I could tolerate wearing it yet.  And my lovely scarf makes my head way too warm to wear if I'm just sitting around the back yard. 

Depending on the day, sometimes I have to lie down before hubby and I make dinner, sometimes not.  After dinner it's off for my second walk of the day.  Right now I'm averaging 1.5 miles total per day.  Not bad for 3 weeks and 2 days post-op!  Sometimes hubby comes with me - he walks 3 days a week. We can't go our old distances of 2 to 3 miles yet, but I'm building up to it a little at a time.  After our walk, I'll lie down again until he comes to bed around 8.  (He gets up at 3 am)  Then it's out to the living room for an hour or two of internet, reading, watching movies and even working on the odd craft project.  It all depends on the day.

My post-op surgical pain is good and decreasing.  I have no more morphine to take - tonight will be my first sleep without it - wish me luck!!  My neck is stiff, but every day I turn my head side to side and up and down to remind the muscles where they used to go. My leg is getting stronger with all the walking and my knee only buckles threatening to collapse if I've gone too far.  My shoulder however is still killing me.  I can barely lift it to the side higher than my waist, and forget stretching it forward above my shoulder height.  I have a doctor's appointment for it on Tuesday with my GP.  Unfortunately, to get back into my former orthopaedic surgeon, there is at least a 9 month wait right now...  We'll see if my GP will order an MRI and if I can get a diagnosis that will speed up my wait for the ortho.  Please cross your fingers for me.  I went in for brain surgery and came out wondering if I'll now need shoulder surgery for the third time.  I so don't want to go through that again!! Nor does hubby!

Post-op Pictures

For the squeamish, I recommend you forgo reading this post.  I'm going to post photos of my incisions with and without the staples.  I've had friends on FB say they can't handle seeing them. So you have been warned my sensitive readers.

Here is my zipped head... There were 30 staples in there.  And not too much hair removed! :)  My husband did an amazing job of taking care of my and my incisions until I was able to take care myself.  He washed my hair - with baby shampoo folks.  It's recommended for post-op on some Chiari websites and I decided it would be good advice to follow.  I first had my hair washed 6 days after surgery, and since then every 2nd day.  The bandages were off after 7 days.  As a precaution we were told to leave them on until we had travelled safely home.  First I didn't want to freak out any passengers who could see my neck beneath my scarf, and second for cleanliness reasons. 

Dr. Gentili's staff did a very good job closing me up.  The staples were mostly nice and tight.  My leg had 22 or 24 staples.  Because some were doubled up it was a little hard to tell.  I can see my leg scar if my leg is in certain positions.  I still cannot look straight down and see my feet or belly, but it is improving.  I turn my head every day from side to side and up and down gently to teach the muscles to move again.  Having been through shoulder surgery twice I know about relearning to do things that atrophied muscles have forgotten.

Post-staple removal:  OMG!!! My dear old family doctor took out the staples in my head first, along with a handful of my hair, and not the short, growing in hair - the permanent stuff! OUCH!!! And because some of the staples were doubled like the ones on my leg he had to take 2 at a time.  And because they were tight against my skull it was difficult to lift them.  His office was hot and stuffy and there was a 1000 watt light shining on me.  Between the heat and the discomfort I nearly passed out.  Thank heavens my husband was there with me and held me up, literally, from passing out.  But my doctor was happy with the incision and the healing to date.  Said it looked really good and he had no concerns over the couple little spots that had sort of lifted when he pulled the staples.
  

Removing the staples from my leg hurt less than the ones from my head, but it was still uncomfortable.  But, it was over.  My leg incision opened up a little after my first shower a couple days later so hubby taped it over with steri strips to make the incision lie flat again.  It doesn't look too bad today.

Of all of the pain and everything I have been through with the surgery, recovery and staple removal, I'd say the staple removal was the most uncomfortable so far.  But, it lasted the least amount of time!  

I'm really tired today, but I am also weaning myself off of morphine.  I have not had a pressure headache that has lasted more than a couple hours and was only 1 or 2 / 10 since the surgery.  My legs have gone numb once or twice, but it also didn't last.  My thinking and speaking are much clearer, even on morphine.  Yeah, the tinnitus is still in my left ear, but it doesn't seem as loud sometimes, which is great!  Plus it is gone from my right ear.  I know, just about 3 weeks post op I still have a ton of healing to do.  Heck, I still lie down 2 or 3 times a day.  But I'm feeling better recovering than I did before surgery.  I have started to walk twice a day again and average about a mile combined.  I'm feeling good.  Surgery is not a cure, but it has definitely given me a lot of hope that in time my life will come back to normal.

Observations at 2 weeks

I'm honestly feeling good!

Sure, I have pain and fatigue and the occasional upset tummy, but I do not feel at all like I did before surgery.

The pressure - like a balloon is going to burst inside of my skull - is gone.  I've only felt it for a few minutes here and there when I've overexerted myself.  Oh so nice not to have pressure headache!!!!

My legs are not numb :) Sure, they fall asleep, but they are not going numb!!! A huge factor I'm not missing at all!  I can now sit or stand without my legs feeling all tingly.

My thinking and speaking is clearer.  I'm still struggling a little, but I'm also still on hydromorphine 3 times a day... I can't wait to see how much clearer it gets and how much easier it will be at work (but I'm not going back to work for 2 months yet).

I still have tinnitus in my left ear.  Yeah, I can live with it.  The pounding in my right ear is gone and the swishing sound has decreased in my left.  I can only hope that as I heal the tinnitus disappears completely.

Right now I'm a little unsteady on my feet - but I have 24 staples in my right thigh.  I know that my unsteadiness will improve as my leg heals.

My only complaints from the surgery - my lip where I had the huge welt is numb.  Kinda annoying, but I'm sure as the bruise goes away the feeling will return.  And second - they wrenched my right shoulder something terrible during surgery.  I shouldn't have been too hard to move about while unconscious, I only weigh 115 lbs.  But my shoulder is killing me.  I've had 2 surgeries on it in the past and the staff were all told to be careful of it, but I guess they couldn't have been too cautious.  My shoulder is actually more painful than my head!  I just hope it settles down soon too and that there has been no further damage.  Go in for brain surgery and come out needing shoulder surgery?? Not good.  I'll have my family doctor check it tomorrow when I have my staples removed.

At this point in time I am extremely pleased with the surgery and my results.  I still have a long recovery until I am 100%, but as a preliminary statement surgery in my mind was a success.  Now, on August 30th Dr. Gentili had better say the same!!

Ward 5B - Neurology

The last instalment of my hospital stay.

I was transferred from NICU at some point on Wednesday, 1 day after surgery.  I don't know timelines and some of my days in the ward blend together.  Hey, good drugs will do that to you!  I know I was moved into a room and I had my first room mate - Mrs. room mate.  Who got there first?? No idea.  My pain was still pretty bad, as was my gigantic fat lip!  The pain management staff did their best and tried me on different drugs, which turned out to by hydromorphine, and thank heavens, it started to work.  I had 8 hour long lasting pills with 2 hour top-ups when I needed them.  I remember dozing in and out of a sleepy stupor a lot.  And I remember moaning... a lot of moaning.

Turn out Mrs. room mate was the moaner - not me.  At the young age of 87 she had dementia and was hard of hearing.  She was in to have a GI scope, so why is she in the neuro ward??  To drive me (and hubby and several nurses) absolutely crazy.  She would moan every 4 or 5 seconds - oooohhhh, ahhhhh, eewwww, like every breath hurt! The nurses asked if she was in pain - no.  So why are you moaning???? ARGHHHHHHHHH!!!!!!! I'm supposed to sleep in the same room as this woman! I told hubby several times to help me up so I could go smother her with a pillow!  I'm not the violent type, but her incessant moaning was intolerable. Then her family came to visit!! It was late at night, that's all I remember.  And they were louder than necessary.  They put up a sign which read "Mrs. room mate has dementia and is hard of hearing.  Speak loud and clearly"  Yeah, great room mate.  Somehow I managed the night... must have been the drugs!  In the morning the nurses came and moved Mrs. room mate across the hall.  Whether it was for my sanity or theirs who knows, but I thank them for doing so!  

I had inedible meals brought to me the first couple days.  Um, I don't eat pork, beef, any dairy, eggs or fats. And I don't care for hot cereal.  And no apple juice because of the acid.  I have major food issues... And the admitting nurse and the dietician I saw when I was admitted knew all of this!  They put me down as vegetarian, type 1.  Whatever that meant! So the first breakfast tray contained cream of wheat (ultimate yech!) and a hard boiled egg, and I believe apple juice or juice with apple in it!! This did not go over well with me.  I remember managing a baby cookie which we had brought with us.  It's bad enough my mouth looked like I went 10 rounds with Mohammed Ali, but to add insult to injury, the dietician send me nothing I could eat!

I got a new neighbour Thursday at some point.  A wonderful Chiari sister I later learned!  She had just had a shunt revision.  Good, two neuro patients in the same room.  Much better.  Plus, she is 30, not hard of hearing and she doesn't moan!!  We struck up a conversation between the curtains when she made comment to her mom of how lovely she looked in a hospital gown and green surgery hat.  I told her all she needed was the compression stockings (which I'd been wearing since NICU) and she was ready for the ball!  No stockings for her was her reply as she is paralyzed due to spina bifida.  Our little chat started a new friendship.  It was soooo nice to meet someone who understands Chiari!! She had decompression surgery in December.  We chatted off and on for the next 3 days.  Good room mate is the sweetest thing, and her family is wonderful.  Every time the went to get something for Good room mate they made the same offer of me - unfortunately, it was milk shakes, so no.

The things I remember most about my 4 days in the neuro ward:  bad food for the most part.  One nurse did some finagling and got my menu changed.  So I did get one meal with chicken that was partly edible.  It was really hard to eat with the big lip, but it was better than the vegetable goulash, vegetarian chili, cream of wheat, dry bread (not toast, just dried bread!), and other assorted oddities they sent me to eat.  And one night they sent me salmon and plain rotini noodles.  So I managed a few mouthfuls.  But wow, I can't believe how bad the food was.  Really, truly.  For such a wonderful hospital, the dietary crew needs some help!

I was impressed by the care in the ward.  Each patient has a RPN, not just a nurse between 9 and 5 with at 6:1 patient to RPN ratio.  We also had a ward nurse - 2 or 3 shifts a day. My first nurse, Rose Marie, was wonderful, truly wonderful. And a PC - personal care worker who was responsible for helping us bathe and clean up daily.  (Well, the day I could actually have a shower and wanted a shower, my PC didn't come back as promised!! So no shower for me!)  Plus the assorted dietary, pain management staff, some physiotherapists and occupational therapists, and doctors, fellows and associates.  It was a busy place!! But the care is second to none.  I am so pleased with the care I received.  There were also volunteers who brought fresh ice and water twice a day, magazines and newspapers.  It really is well run.

Dr. Gentili came in to see me three times during my stay.  I was pleased and impressed.  He said he doesn't always make his rounds, that his team does.  Well I saw him and his team!  The team was great!  Beverly, George, Dr. Andre, everyone.  Beverly sang "My Favourite Things" with me while George removed the drain from my leg incision.  How many doctors do you know that will sign with you so you take your mind off of the procedure?  Dr. Gentili talked to hubby a few times too.  He was very happy with the surgery and with my progress in the hospital, except that I didn't walk down the hall fast enough. Hey, compression stockings, swollen feet and a 6 inch incision in my leg!  Hello??  But he did tell hubby my herniation was not the least and not the worst he has see.  I don't have the exact length, but I will ask him in August.  He said that the immediate reduction of the pressure in my head, less problems speaking and thinking are all good signs.  My legs don't go numb all the time now either.  My tinnitus is still in my left ear, but it's only been 11 days and there is a lot of swelling still.

I battled nausea for the first few days, but by Saturday I was well enough to be discharged.  I was supposed to go on Friday, but a bout of nausea put a kibosh on it.  I got dressed for the first time!! Hurray!! And we picked up my discharge documents and staple remover from the nursing station and off we went!  We stopped on the main floor to pick up my prescriptions and ran into my friendly room mate's dad.  I'm telling you, this family is the salt of the earth - they truly are wonderful.  I really was sad to say good-bye to good room mate.  But back to where I was... running into the dad... he was so sweet!! He drove hubby and I to my cousin's condo where we stayed from Saturday afternoon until Monday at noon when we left the city for home.

The trip to the airport was an adventure, the taxi driver rushing us around downtown to the airport the day after the G20 summit.  Hubby had to put his arm behind me for support, but we made it uneventfully.  I managed to walk from the taxi to the ferry and all the way to check-in at the airport.  Then a security guard brought me a wheelchair and we wheeled through security.  I was, of course, wearing my cute scarf and Brain Surgery Survivor t-shirt.  We were asked by 3 of the security staff about my surgery and they were all amazed I was up, able to walk and flying home only 5 days after surgery! And it's true, it is pretty amazing, but I'm so happy I'm feeling this good!  There was some turbulence on the flight, but other than that I was good.  I'm not a great flyer - don't like take off or landing at all.  I was greeted at Thunder Bay with a wheelchair to make it through the terminal and welcomed home with a big hug from my teary-eyed mum.

It is so good to be home!!!  Follow-up trip to see Dr. Gentili is on August 30th, and this time my mum is going with me.