Monday update

I've seen more improvement in the last few days.  I'm now walking around my house without my cane except for first thing and the morning and at night when I am tired.  I tried driving on Saturday and was able to drive to the school which is only a few minutes away.  I've given myself a 10 minute drive allowance.  I can tell my leg will tire out easily.  This is a big victory and will make my life easier.  I have two short errands I am hoping to run today...scratch that..I should just do one because I want to pick Julia up at her bus stop (elementary school) today.

I'm going to physical therapy today.  It's 25 minutes away and so I have a ride lined up.  I'm going to go to work on Wednesday.  I also have a ride for that as it is downtown.  I usually work two days a week but will just do one this week.  Next week is problematic because due to the holiday I would need to work two days in a row...which I am unsure about.

The terrible rushing things in my leg at night have slowed down quite a bit.  I still get a few but they are not nearly as relentless.

One more highlight then I'll get to the challenges.  My church had a special service yesterday for confirmations, baptisms and graduations of the youth.  Julia was not part of those but all youth were invited to sing with the choir.  I didn't want to miss this so Julia and I sung in one of the services.  It was wonderful.  My friend Bob took a picture and said some really kind words about the two of us singing being a highlight for him.  Here it is.  We are near the upper right center...me with the dark hair and Julia to my left.

On to the challenges.

My foot and leg and muscles haven't progressed.  I know it could be a year or two with nerve damage.  I don't know whether to expect slow progress or fits and spurts or all at once.  I've not lost hope by any means.  Luke has been doing some massage and is moving all my joints for me that I cannot move myself in hopes of keeping things as healthy as possible.  When I'm in bed at night I really struggle as a move about.  Luke was asking me why and I told him I thought it was trying to keep my back from twisting,which is true, but I realized last night in a "duh" moment that when I am lying on my left side I can barely move my right leg.  Whatever muscles are responsible for that clearly are very weak.  I try to put a pillow between my legs and I have to use my hand to pick up my leg.  So when I want to roll over it is very difficult to do so.  I will talk to my therapist about this.  I'm sure it will be put on the list of less important things but it is a significant deficit.  I'm hoping it's one of those things I just need to exercise.  The feeling is my foot and calf is also the same.  I'm still having Luke tape my toes.  I've got one that won't stay up.  Between not being allowed to bend and having only partial control of my foot it takes me a long time to put on socks and shoes.  I have a special tool to put on my socks, which is really nifty.  I also have a very long shoehorn.  Mostly though, I struggle with making sure my toes are behaving when I am trying to get the foot in my shoe.  I can't tell if they are straight or not and it just takes a long time to wiggle my foot into my shoe.  All this isn't a complaint but it is an adjustment.  I used to be pretty proud I could take a shower and be ready in thirty minutes - not any more!

I'll stop there for now and just repeat..Yay for driving!

Better night

I don't like medications and had taken myself off of one (well all) but decided to add back on last night before bed and while it didn't help my before sleep problems I had a much better night's sleep.  I was groggy this morning...I woke at 6:20 and would not have been able to drive Julia to the bus (if I were actually driving) but by 8 was just fine.  So - I will stay on it for now.

I had Luke tape one of my toes that is dropping and where those nasty leg rushes ends up...I feel that toe cramp and jerk.  It felt much better and kept the toe still which was good.

I go to PT today.  I have a laundry list of stuff to address - I'll let her know that I realize we can't address it all - but I am going to attempt to fix all of it one way or another and we can prioritize.

Three weeks

Well - I'm going to hijack this blog for a bit and use it to dump about my medical condition.  I hope that someday I will see progress and that will be a good thing.  I also just need to complain.  I do this always aware that I could be dealing with much more serious things.  I definitely have perspective.

It's three weeks since my surgery and I'd say so things have improved and others stayed the same or gotten worse.

I'm basically dealing with 5 things:

Back Pain:

Basically nonexistent.  Getting better for sure.  I can move around more easily and I can stand up without pain.  The incision seems to be healed and there is just some nearby swelling that I have no clue if I should be concerned about or not.

Back mobility:

I'm under restrictions (no clue for how long..another thing on the list of things I hope someone tells me at some point).  No bending, lifting, twisting, picking up more than 10 pounds.  I will probably keep up with many of these as I know I have a slight herniation of another disk and I am probably not done with back troubles in general.

However...this means I cannot shave my legs,  rub my stupid numb foot or tie my shoes - among other things.  Luke has agreed to shave my legs for me, for now... :)

Muscle Weakness:

The extreme loss of strength is something that was resolved mostly after surgery and the physical therapy really helps with this.  I feel confident I can become strong or stronger than I was before.  After therapy is done I plan to figure out a strengthening regime that will work for me for the future.

Muscles not working:

I have googled and self-diagnosed at least three muscles not working.  From what I understand my brain can't tell my muscle to activate because of the nerve damage.  These are the ones:  peroneus longus and peroneus brevis and Extensor Digitorum Longus.  I basically can't turn my foot out and cannot lift my food from the small toe side.  When I lift my foot, the big toe side is doing all the work.   One of the issues with this is that when I walk on this foot I land flat-footed on the big toe side.  My knee is turned in and this is just a recipe for trouble.  My arch won't work and I can see knee and ankle problems in the future.  I also don't know if I can ever have anything like a normal gait with these muscles failing to work.

The therapist tried electric stimulation on one of the failed muscles last week.  In theory the current would have made the muscle move..but it didn't .  I have no clue why.  I want to find a way to keep those muscles from atrophy.  Also, no clue how I'm going to do this but I'm going to look into it.

Numbness:

My numbness is no better and actually feels more pronounced in my foot and calf.    This is a maddening feeling - especially since I can bend in such a way to rub my foot.  My toes are numb, plus while I can move them I cannot flex them at the joint so they feel frozen.  One of them has started to feel like it is dropped below the others.  I just have a constant tingling and dead feeling and I just have to try not to think about it.

The overall cause of these last two is nerve damage.  For whatever reason - when I go to bed at night I get some nerve pain but worse than that I get this other thing that is hard to describe.  It's like a big rush of slush down my leg into my toes and it makes my whole leg want to jump or actually jump if I can't contain it.  It is terribly uncomfortable and when I want to go to sleep it just keeps happening over and over again.  It makes me want to cut my foot off.  My foot also gets so sensitive that the sheet feels like sandpaper and the weight of the covers feels like they are made of lead.   Narcotics, nerve pain medicine, and muscle relaxers cannot stop this from happening.  Those things can knock me out after an hour of the the misery but that's it.  I've stopped all three and discovered for sure none were helping any pain or discomfort but they were at least helping me to sleep.  However,  I don't want to take powerful drugs for other things to make me sleep.  I have a call into the surgeon's office to discuss what I could use instead.  Hoping for a magic elixer for that discomfort but not counting on it.

OK - this is getting too long.  I'll add more next time.  If you read this far - that was nice of you but I understand if you want to just ignore these posts!

My Back

I've been having back pain since last November.  It got pretty bad and then subsided.  At the beginning of April it started to get bad again.   It finally got bad enough I scheduled an appointment with a chiropractor.  He assessed me and told me I needed an MRI.  He got me into one the next day and discovered I had a "massive" herniated disk.

I had a referral to see a surgeon on Thursday.  On Monday I was feeling OK and I was at work.  We walked to lunch and by the time we were halfway back I was in incredible pain.  My coworker told me I was walking like Johnny Depp from Pirates of the Caribbean.

Tuesday morning after the kids were off to school I hopped in the shower.  I was shampooing my hair when something changed and I was in incredible pain.  I hobbled out and texted Luke who was in the basement working.  He came and got me and helped me get dressed on downstairs.  My right leg would not work at all.  I managed to find a very strange position on the couch but I was in incredible pain again.  I texted with me brother (who is a surgeon) and he felt I should probably go to the ER.  I tried to call the surgeon who I was going to see and also the chiropractor.  I mulled it over for about 2 hours.  Meanwhile Luke ran to get my MRI cd while my neighbor came and sat with me.

Luke somehow managed to get me into the car and to the ER.  He got a wheelchair and wheeled me in.  They were very busy so we waiting almost 2 hours and they brought me back to a room.  The nurse basically told me I needed to get into the bed but she wasn't allowed to help.  Luckily Luke did.  With an unusable leg it was quite difficult.

The ER doctor came and and did a bunch of neurological tests on my leg and viewed the MRI.  He came back in not too much later and told me I'd be having surgery that evening.  Luke left to get the girls to friends' houses and they transported me by ambulance to the other hospital downtown.

I arrived and the surgeon was waiting.  Luke got there quickly as well and the surgeon pulled up my MRI.  It was a little hard for me to see but it was very dramatic.  You could see the cord and then it made a serious sideways "u" where the disk pushed the cord aside.  He tested me leg and it got a 1 our of 5 on all the tests which meant it was seriously weak.  It was also completely numb from the hip down.  He wanted me to go straight to surgery but there was a delay in the surgical suite so there was time for one more MRI, which was good since something had changed since my last MRI.  While I was waiting for surgery the Minister of Music form my church  (who is my choir director) came by and prayed with us before my surgery.

They took me down for surgery and put me out.  I woke up the surgeon trying to assess my leg but I was far too out of it and in major pain.  My right leg felt like it was on fire.  Which was a good sign but horribly painful.  After trying several drugs they finally gave me something to take the edge off.  About 2 hours later (midnight by now) the surgeon cam back to assess me and most of the leg tests were back to a 4 out of 5 from the 1.  That was a huge relief.  The other thing that had happened before the surgery is that I lost the ability to urinate.  I had a catheter after surgery.  Fortunately that is all back to normal!

The next day physical therapists came to stand me up and see if I could bear weight on my leg.  For about 15 seconds I was doing well but then I got dizzy and they laid me down and found my vlood pressure had dropped to 70/30.  They told me they didn't even know how I was talking to them with such a low blood pressure.  That was a feeling I hope to never feel again...very scary.

Later that day they moved me out of ICU and I spent the next two days trying to manage my pain.  I started to get dizzy and nauseous.  After a few more days they sent me upstairs for rehab.  I was extremely dizzy and nauseous.  Luke stayed with me.  He was so wonderful.   I had a few more days of bad dizziness and nausea while I tried to do my therapy.  They finally gave me a nausea patch and then I was good.  I was trying to do without narcotics as the side-effects were worse the the pain.  After a few days I went to just using a muscle relaxer and tylenol and that was much better.

Rehab was really interesting.   They discovered I was completely shifted to the left.  I had been compensating for the right side for quite a while.  I also have a lot of muscle weakness that maybe I have had for a while.  They got me using a walker pretty quickly but it was hard at first because my right foot and calf are still very numb.  I had to trust that I could use them even though I couldn't really feel them.  I have had some slight return of feeling and I can wiggle my toes a bit more. Otherwise there is still at least one muscle that refuses to work and so I cannot turn my right foot out at all.

I worked on climbing stairs after I had mastered the walker because my house has a ton of stairs.  With a cane and a railing I have mastered that now, but it hurts a bit.

Being on the rehab floor was a bit hard because I was not allowed to get out of bed or the wheelchair without a nurse.  It just felt really confining even though for most of my stay I absolutely needed help.

My in-laws drove in the day after my surgery to hold down the fort. I can't tell you how much that helped!  They are still here to help for the rest of the week.

After a few days in rehab I got a new roommate.  Strangely - she had the same injury as I did!  What happened to us is called Cauda Equina and it's pretty rare.

In addition to the physical therapy I had occupational therapy.  I folded clothes, made toast, picked up socks using a reacher.   I also put dishes and food away and some laundry tasks.

The day before I got out (I was in rehab for a week) they lifted my restrictions so I could walk around in the walker on my own.  Yesterday I got to come home.

So - here's where I stand:

I'm using a cane to get around the house.  My right foot and calf are still numb.  My leg strength is pretty good.  I can stand without aid but I'm not doing that much because I do need the cane once I start moving to be stable.

There is still swelling around my surgery site and until that goes down I won't know what functions are going to come back.  It could be a year even from what they have told me.  Worse case I stay like I am and I can live with that.

My back pain when I need to roll over in bed and if I turn the wrong way is still pretty strong.  I'm not on any pain medicine so just dealing with it.  I also have major pain in my leg when I am lying down.  I'm really hoping that some of that will abate as I am not sleeping very well.

I have to be very careful about bending, lifting, and twisting.  I'm carrying around a reacher so I can get things off the floor.  I do not know when I might be able to drive. I have regained a lot of movement in my ankle and I feel like I will eventually be able to drive.  I think the physical therapist will need to give me the OK.  Meanwhile it's going to be a bit hard to not be able to drive.  I will start outpatient therapy soon.  I am waiting for them to call me to set it up.  I decided to go with the hospital's outpatient therapy because they seem good - but the facility is pretty far from my house which will make getting rides hard.  It will all work out though.

All of this was a shock to the system.  It was such a whirlwind and to go from feeling "normal" to needing assistance to walk, perhaps forever.  That's the way life works though. It could have been much worse so I'm thankful for the mobility I do have.