12 months post-op: the good and the not-so-good.

Today I saw my surgeon for my 12 month follow-up.  The good news is that the X-rays showed a complete and strong fusion.  This made me really happy is that it is possible for fusions to fail to fuse and so hearing that it was complete was a nice relief.

The not-so-good news is that since mid-April I've had a return of pain, a different type of pain and location then pre-surgery. I chalked it up to an unfortunate twist in my back one afternoon as well as frequent weather changes annoying the instrumentation at my fusion site.  Today the surgeon did some movement tests and said that with the path of my pain (through side of hip/thigh, wrapped around the top of my leg and stopping at the top of my ankle) it is likely that my sacroiliac joint, which is the joint right below my fusion, is now degenerating.  He scheduled an injection test that should be both "therapeutic" and diagnostic---if the injection works and provides pain relief, then my SI joint is degenerating.  If there is no relief from my pain, then my SI joint is fine.  If I do get pain relief, it could last for a few days or several months.  
I do feel discouraged.  However, I could live with this degree of pain for a long time and perhaps that will buy me some time for some non-invasive procedures to work.  I guess I will know in a couple weeks if this is going to be a long term problem.  I knew fusions could create a domino effect both above and below the fusion site, I just didn't think it would happen so fast, particularly at the age of 35.

6 months post-op

Today I went back to the Ortho office for my 6-month post-op appointment.  I was hoping they'd give me some sort of % for how much I'm "fused" but they couldn't give me that number.  When I search the spinal surgery boards online it seems that other patients know their % after their appointments, but perhaps they are using different equipment than my ortho office.  Or maybe my team just doesn't want to put a number on it.  When I asked she (the PA, who is great) simply said that they hope that I'll be fully fused after 2 years.   I complained of some of my back pain and she said she'd be surprised if I still wasn't in pain, that it was still so soon after surgery.  Six months doesn't feel so soon.  But, apparently it is.  My pain isn't all that unexpected, and it's something that I can handle---which isn't something I could say before my surgery.  I mostly feel pain at the end of the day, if I'm doing a lot of bending (cleaning the house is a challenge), or if I'm having to sit for a long period of time (I still hate traveling).

I'm off of the "heavy" pain meds, I have been for awhile now.  This may come to a surprise to some of you----yes, this is my actual personality. :-)  The good news is that I can start taking ibuprofen again (I was told to avoid it for the first 6 months because anti-inflammatories slow down the fusion process).  This should help with pain management.

I have been able to start exercising again.  I can do the recumbent bike, elliptical (with stationary hand bars)  water-walking, and the backstroke in the pool.   I also got a "prescription" for physical therapy today---I'm hoping to get a few sessions in over the January-term before spring semester starts.  I also know that that I need to lose weight.  I imagine that losing weight alone can make my whole-self feel much better.  Saying that I need to, knowing that I need to, is sooooo much easier than executing a plan.

This post seems a little robotic to me.  But I guess that's just how I feel lately.  It is what it is.  :-)  I'm still thankful that I had the surgery.  The pain I experienced pre-surgery was unbearable and now I'm slowly but surely getting some of my favorite parts of life back.

3 months post-op

On 8/28 I was officially 3 months post-op.  I had my post-op appointment on 8/26, which I was looking forward to because I thought that things were going pretty well. 

Unfortunately, on 8/24 I had a fall.  A child of mine (may he rest in peace--just kidding...) spilled water on the floor without cleaning it up and I, in all of my barefoot wonder, slipped causing both feet to fly in the air and me to land pretty much directly on the fusion site, cutting my foot up on the way down.  I was so devastated when that happened---three months of very hard work in recovery flashed before my eyes. Thankfully Michael was able to come home ASAP and my awesome neighbor saw my frustrated post on Facebook and showed up at my door.  She asked if I was "okay" to which I sobbed "noooooooo".  When Michael arrived he patched up my foot and my neighbor took me into acute care.  My xrays did not show any damage to the rods and screws.  I left with three new medications (another point of frustration, before the fall I was down to just using Tylenol during the day and a muscle relaxer at night).  

The following Monday was my 3 month appointment.  I was still so sore from the fall and was not walking well.  Thankfully my surgeon agreed that the xrays showed no damage and that I had probably injured the weak muscles around it and "stirred up" the nerves.  

The past two weeks then have been.  Well. CRAP.  To say the least.  I started back at Loras full-time (which is awesome and a great distraction from my pain) but the changes in schedule coupled with the fall has left my right leg screaming at night. My muscle twitches all day long (I believe it's called fasciculations) and then at night, around 7 or 8 p.m. when I lay on my side to get some pressure off of my back for the first time of the day my legs start going into horrible spasms, particularly my right leg.  Since this has happened I have tried a slew of natural remedies but my surgeon has increased my muscle relaxer dosage by 3x.  What seems to help the most is a "sling" that I've fashioned for my foot that helps prevent it from "falling" into a pointed toe when I lie down.  Pointed toes cause calf muscle to constrict which increases the likelihood that I will have a spasm.  This helps some, but on the roughest and most exhausting of days it doesn't seem to have too much of an effect.

I wouldn't be honest if I didn't say that I am EXHAUSTED of this.  I have no regrets for having had the surgery, and I can feel my lower back getting stronger, but after two years of these challenges I feel mentally done.  Some days I feel like I am the oldest youngest person I know.   I am VERY grateful for friends and family who have found ways to spend time with me knowing my limitations in travel and activity, and my friends and family who have had patient and kind ears as I've gone through what has been the 2nd most difficult emotional and physical journey of my life (the first being the initial diagnostic phases of Noah's chromosome disorder....so a huge kudos to family and friends who have supported and stuck by me through both of these times :-).  

I also thank God daily for my job.  Teaching gives me a focus and energy in a way that nothing else can, I truly believe that I would be much worse off if the semester had not started.  Even though there are many more demands on my body now, the mental lift is something that I desperately needed.  I don't take for granted that I have a job that does this for me.  

Another bonus is that since the the Great Kitchen Fall of 2013 the kids have been on high alert about cleaning up there messes from the floor.  Our youngest boy spilled water the other day and started shouting "Emergency!  Emergency!" and ran frantically around the house to find a towel.  Similarly my daughter spilled the contents of her taco on the floor and would not let me enter the kitchen claiming "But you fall down, Mommy."  So, at least it was a logical lesson learned by all :-)  

I will post again after my 6-month post-op appointment in November.  

First x-rays

I saw my surgeon today.  I was hoping he would shout "Hallelujah it's a miracle!  You are healed!". Well, that didn't happen.  But there was no bad news either :-).

Today was my first look at my new titanium body parts.  Rods in place with six screws.  It was strange to see them, for some reason.  But they looked good.  They were set in place nicely.  This was a "baseline" X-ray to track the fusion progress.  I forgot to ask what % fused I was, so I'll ask gain at my next x-ray appointment which I think will be at my 3-month appointment.

The only disappointment I had was that he said we would talk about "weening" me off of a brace on August 26.  I assumed at three months I would be done with my brace, the term "weening" makes me think it's not that simple.  I start teaching that same week and I was hoping I would be teaching brace-free, but it doesn't look like it.

End of Week 6

This week I have a more positive attitude. I think my progress is back on track again.  Partly because naturally I should be getting better, and partly because I am listening more to my body.  We had a busy Independence Day weekend.  On the 3rd watched the awesome Air Show and Fireworks on the Mississippi River.  My parents were in town for a few days and I was really glad that we got to spend some time together.  On the 4th we went to the parade in Galena (will try another town next year...just didn't enjoy it as much as I had hoped...) but then on the 5th and 6th I pretty much laid low because I could tell that my back needed a break.  The 6th was my birthday and I really wanted to go back to Galena to go "shopping" (probably would not have bought anything, but I love to window shop there) but I knew that it was just too much.  So, I guess that's what I'm learning the most these days...that I can't do everything and so be it :-)

I've been doing more driving around town.  Still can't imagine a trip longer than 20 minutes, but I am able to have some more independence.  I took a week off of walking because of the muscle cramping but I'm back at it again.  Right now I'm going out once a day for about 1.6 miles, after I get my xrays back on the 15th I may try to do that twice a day.

I started to take a calcium/magnesium supplement and changed my evening muscle relaxer and that seems to be keeping the muscle cramps at bay.  I still have significant popping and twitching but I try to move or if Michael's home, he'll massage it for me.  (Awwwww..... ;-)

I've been trying to gain more and more independence.  The neighbor on the other side of us happens to be a chiro and saw me carrying a couple of grocery sacks yesterday.  While I don't think he knows what type of surgery I had specifically (my brace makes it obvious that it was a spine surgery) he asked if I should be carrying the sacks.  I said "No, but there's frozen stuff in here."  His neighborly response?  "That's what's important."   Humph.  Touche'.  I don't even know him and was surprised by his license to administer sarcasm but really, he was right.  I should have waited and had Michael carry stuff in.  Sometimes it's so tough because you just want to get stuff done.  BUT, like I said before...I can't do everything, so be it.  Today I kept his sarcasm in my ear and let my house get messy beyond my comfort.  I'm trying hard to have the kids help out and pick up after themselves, etc.  but.....who cares.  We're far from being candidates for the show "Hoarders".

So, for those of you who are reading this because you are also considering or will be having a spinal fusion, here's a summary of what I can/can't do at 6 weeks post op:

CAN'T:
Load/unload my dishwasher
Do the laundry
Vacuum
Sit longer than 30 minutes comfortably
Properly put something in my oven (I have a throw/slam method that I am sure is not safe...)
Use a dustpan
Put on my own socks/shoes
Use the bottom shelving of cupboards/refrigerator (unless I sit in a chair and then reach, sometimes that works)
Among a bunch of other things...those are just my thoughts on daily living.....

CAN:
Drive around town
Dress myself with the use of a long-armed grabbing tool
Shower
Wash dishes at the sink
Go on long walks
Shoot my children with a water gun from the chair on my deck (that's essential, right??)
Cook successfully on my stove top (though my children need to fetch me pots/pans from my lower cupboards)
Among a bunch of other things as well :-)  That's just the jist.

My biggest advice to myself and to others at this point is to not set your expectations to high for yourself.  Make them high enough that you can steadily progress, but not too high that you actually regress.  Unfortunately trial and error seems to be the best way to figure that out.

I will blog after my appointment on the 15th.  I hope they give me a picture of my rods/screws, I think that will help my case with the kids that I actually am Frankenmommy.  After that, I will probably do an update at 3 months, 6 months, 9 months, and 12 months post-op.  I can feel this blog is/should be winding down.

End of week 5

Recovery is slow.  This is not a surprise.  They literally took out my supportive structures in my spine and reconstructed me with titanium.  So, of course it takes time.  But my patience is thinning as I feel worse off today than a week ago.  I have started driving occasionally around town so that's progress and I did sit through a movie on Saturday.

Sunday a.m. I woke up screaming bloody murder.  On one hand I was embarrassed because I thought the neighbors could hear me. On the other hand they didn't hear me so I guess if we ever do have an intruder I should come up with a better plan than the use of my lungs.  What happened was the mother of all muscle cramps.  My nerves are no longer compressed but are pretty damaged, causing numbness, tingling, heat sensations, and the worst...muscle cramping.  Michael rushed in and started massaging my leg which is the only thing that works to get it to stop.  I fear when I am alone and he's at work what I will do.  I can't bend to well to do it myself and the pain is so intense that my brain hardly can process what to do, other than scream.  Unfortunately the aftermath of the spasm left me needing to use my walker the remainder of the day.

This morning I also woke up with some light bleeding.  Michael says the incision is looking great so we can't figure out why/how.  I get the rest of my stitches out on the third so perhaps the surgeon can enlighten us.  I imagine some drainage must be normal. Hopefully it subsides ASAP.

This morning my leg was not well but tolerable.  I was able to drive Noah and the kids to his tball for the first time.  The chair I brought was horrible (I'm on a quest for a supportive lawn chair) so ended up switching between standing and sitting on the bleachers).  It was fun to see Noah play.  He's a cute kid.

So, I guess that's it for now.  I hope my doctor has some solutions for the nerve issues.

End of Week 4

This past week has been pretty good.  But I have horrible cabin fever.  I want to wear jeans and go without my back brace and go out to eat with my friends.  I want to walk around Galena and make poor shopping choices.

The good news is that I can walk about a mile and a half in an hour.  You can do the math on how slow that is, but I am proud of that progress.

At 4 weeks post-op my hot flashes are slowing down, my legs have small but semi-mighty muscle cramps, and a strange tightness and then shakiness to them.  I haven't asked Dr. Google about it yet but I'm sure it has something to do with the healing nerves.  Nerves Be Crazy.  That's the title of my next album.

My incision infection seems to be healed and Stitches version 2.0 will come out on July 3rd.

I'm trying to find the confidence to drive.  The recovery schedule says I can 4 weeks post op and I am off of the heaviest of pain meds.  It's the twisting involved when you drive that has me worried.  But I really want to go buy some tank-tops so I can wear my brace under my t-shirts (not sure if I mentioned that my surgeon gave me the blessing to take off the hard back of the brace so I have moved from being a turtle to simply being the heavy-weight champion of the world).  Anyway I thought wearing the brace under a t-shirt and on top of a tank-top might be a nice change of pace.

I know I am doing great but this recovery process is longer than I originally imagined.   I thought perhaps by today I would be able to drive to Des Moines to participate in a two-day meeting regarding some efforts in our state for Early Childhood.  Boy, was I kidding myself.  I can comfortably sit for about 20 minutes.  I can walk way longer than I can sit.  Which is why I spend the majority of my day horizontal.  Watching Netflix.

Speaking of Netflix, I watched all 6 seasons of Private Practice in 4 weeks.  That's a lot of screen time my friends.  And almost every episode makes me cry so you can imagine how fun it was for Michael to come check on me in the past 4 weeks.  Pure joy.  He didn't regret "for better or worse" even once, I am sure.

Well, that's really all that's going on now.