Finally a Final Follow-up

 Okay so I am finally posting about my final follow-up.  It took me a very long while to get back in to see Dr. Sethi.  With my doctor moving to a new office, then my husband changing jobs which changed insurance, it took some time to finally have insurance again that would cover my visit.  At last on September 21, 2022 I was able to go in for my 5 year follow-up, just 3 years late.  (And I missed my 2 year follow-up)  I felt a little anxious about not getting checked for such a long time and was relieved that everything looked great.  They said I don't need to come back again.

I was so excited to see Dr. Sethi.  His nurse was relaying to him how things were going for me.  He was so excited to hear about my improved quality of life, he asked if he could go and get the doctor who assisted him with my surgery.  They both came in and seemed to marvel over their handiwork.  They looked at my new x-ray and talked about how they do things differently now.  I told them about how good I have been feeling and that I have started doing races (walking only 😉).  They were super impressed with it all. 

I felt star-struck during the visit and the long drive back home.  I felt tears of gratitude fill my eyes.  These doctors completely changed my life.  I know I would not be doing the things I am doing and enjoying life the way I am if not for their skilled hands.  I only wish I had gotten a picture with them.  

Already a Year!

It's crazy to think that it has been one year since my surgery.  I am so pleased with how well I have been healing.  Yesterday I went back to Seattle to see my surgeon.  This Spring he was named the medical director of the Virginia Mason Neuroscience Institute  (that's how skilled he is) so I went there to see him instead.  I wasn't sure how all that would work but no problems getting to see him over there instead and they are all just as professional and friendly as the Group Health offices.

First, I went to get new x-rays.  According to my husband I got x-rays there after my surgery.  It didn't look at all familiar but I do remember them telling me in the hospital that they would take x-rays before I checked-out.

Next, I met my surgeon's PA.  She introduced herself, showed me my x-rays and went to get Dr. Sethi.  He had looked over my x-rays.  Everything is still looking good.  No loose screws and you could see more growth of the bone graft all along the spinal fusion.  So, next check-in will be at two years, but this can be a phone visit.  Then I'll  head back over at five years.

So, overall I feel like things are normal.  I have a great friend who lives across the street that I exercise with regularly.  I have been able to see more progress and strength return.  It is very slow and I'm still learning to be patient with myself.  It feels great to exercise though and to feel stronger than I was when I started.  There are some things that I have to modify because I either can no longer move/bend like that or because I still have more back and ab strength to regain.  I actually feel quite strong.  I've been helping people pack and move, and carrying things around and it hasn't been too challenging.  People always tell me to be careful and not hurt my back.  I just tell them "I'm titanium!".  I wonder if I really can hurt my back?  It's not really going anywhere. So it's not like someone who twists wrong and hurts it because my spine doesn't twist! :)  I am very careful when lifting to squat and preserve the last few un-fused vertebrae I have.  When I'm cleaning and picking up often my lower back gets tired so I really try to focus on squatting or doing a lunge to reach stuff on the floor.

Also, I was feeling early on in my recovery that I would always notice my rods but I actually don't notice them all that often.  Generally I really only notice during exercise or walking and I'm swinging my arms around.  There's definitely a solidity there that is noticeable.  While bending of course I am aware of my limited range of motion.  But I'm okay with all that.  I no longer have pain.  Occasionally I am sore or a little stiff but that's it.  Being pain free is such a blessing!

I'm amazed at how well my incision has healed and the scar is really quite faint compared to past photos.

Free at Last!

I can't believe it's been nearly six months already.  I saw my surgeon this week.  He pointed out on my new x-rays where the bone graft was growing.  You can see a faint white line.  He looked at each screw to make sure there were no spaces around them that would indicate any loosening.  Everything is looking right so all my restrictions have been lifted.  Happily, I no longer have to wear my back brace!  I am now allowed to bend, twist and lift things over 10 pounds.  I don't have to do any physical therapy but can do whatever exercise I'd like.  My doctor just advised me to back off a little if I have a lot of pain or pressure.  He also said it is going to be difficult and slow because I haven't used my muscles in a very long time.  In reality it will be like starting with no muscle because I've been taken apart and put back together and everything is now in a different place. I've started right in on lifting (very small) weights and using resistance bands to rebuild my muscles.  I've missed my yoga and it's amazing how much flexibility I've lost.  I used to bend in half and now I can only make a right angle.  My hamstrings have been super sore with all the stretching I've been doing and my back muscles have been aching.  It's a good pain.  It means progress and growth.  

So my final numbers are in...The thoracic region went from a 59 degree curve to 18 degrees.  This is the curve my surgeon said was very stiff and would probably only be corrected to about 30 degrees.  The lumbar region was corrected to 20 degrees from 47 degrees.  These are HUGE improvements.  I feel so blessed to have found such a skilled surgeon and that my spine was able to be corrected so much.  

In another six months I'll go back for a one year check-up.  Then again at the five year mark.  In the meantime I will continue to make myself stronger.  Looking back there was such horrific pain and terrible struggles but I truly feel it was worth it.  My quality of life is already such an improvement to the misery I lived in before.  I can already do so much more, without any pain, than I could pre-surgery.  Yes, it was all worth it!

Gratitude

I decided that my recovery is coming in leaps and bounds now (with stretches of time with no significant change) rather than each day so incremental as it was at first.  My back muscles are so much looser now and seem to be figuring out how to move more smoothly rather than so jerky.  I've been trying to stretch and move as much as is allowed.  My left side still has some numbness at the waist and hip but my right side is nearly free of all numbness (just between the shoulder blades is a bit numb).  I was out and about for about 6 hours yesterday without getting terribly sore and just a bit tired.  I had to rest for a couple hours afterward.  

I'm walking 2 miles some days and it's not too bad.  However now that weather has dipped below freezing and I'm thinking I'll have to go use my parent's elliptical to get my exercise in.  With the temps are dropping here the brace is more tolerable.  Also bulkier layers make it easier to cover up. :) 

I've been wondering if I need to keep up the huge caloric intake still.  I've been less hungry than at the beginning and I've slowly been gaining weight that I lost towards the beginning (and then a few extra pounds).  I guess I need to make healthier food choices so the ones I eat are helping me heal and not just adding fat.  I'd probably have more energy too. 

 I have had some people dealing scoliosis tell me that I've been helpful by sharing this. It's certainly a pleasant and unexpected side effect of going through all that I have.  I love being able to give some advice or information and feel like I'm helping in some small way.  

I really like this quote.  It is too true.  Without the struggles I've endured in my life I would not be as strong as I am.  I think if I could generally be patient and positive while dealing with pain then I surely can be patient and positive when I'm free from pain, etc.  Mostly I'm grateful that through my struggles I have come closer to God.  He makes weak things strong.  God is my strength!

In regards to my mental health, I'm doing much better.  We had some beautiful, warm, sunny days and I soaked up as much of it as I could.  The freedom of driving is fantastic.  I've actually only driven a few times in the past weeks but know that if I choose to I can.  Also, as I'm not so down, I've observed some things about my depression.  When I  am in that negative state of mind, everything feels so bleak and overwhelming.  It can be difficult to see things as they really are and the people that really are there.  It's like I shut my eyes to block everything out and forget that I can choose to open them and look for the light in my life.  When I finally do, I see reality isn't nearly as awful as it seemed.  When I felt like my house was falling apart I realized there actually wasn't much to it.  Just some clutter on the counters that I could sort through.  When a few shoes and socks or other things are left on the floor I realized it overwhelmed me because getting things up off the floor is a challenge for me right now.  Sometimes I forget I have a grabber to help with that.  A sink full of dishes?  Well it doesn't bother my back to load the top rack of the dishwasher and wash a few things by hand.  Trying to be proactive in finding ways to be a bit more independent and find purpose has be very helpful.  

My husband is incredible at helping me see a true picture of how things are.  He's also amazing at getting the kids to all pitch in and help him keep things organized around the house.  I know this surgery has been a challenge for him as well.  He's such a good example of someone who deals with challenges head on, with great faith and perseverance.  He builds me up and encourages me.  He makes me laugh.  He see all my flaws and loves me for who I am and who I am becoming.  He's a positive force in my life and I want to be a better person because of him.  It's a blessing to be married to him! 

2 Month Check-up

I went to Seattle for my 2 month post-op check-up a couple weeks ago.  All is well.  They had me take x-rays first and everything was still in place and looking good.  Dr. Sethi was very pleased with how things looked and reiterated what an amazing correction they were able to achieve.  He asked me about medication and told me I needed to be off all the prescription drugs in 2-3 weeks.

I went home and decided I was more emotionally attached to the meds than needing them physically.  After experiencing such excruciating pain I was afraid to have pain again.  I had only been taking hydromorphone once a day anyhow so I dropped that all together.  The Lorazepam I switched from two times a day to once a day.  I decided I didn't need the baclofen either because it was for muscle spasms and I hadn't been having any.  So after a week and a half I was only taking Tylenol (3 times daily).  Now I take Tylenol about twice a day and seem to be doing fine.  My muscles get kind of tired and achy but not really painful.  Sometimes my shoulders still burn, like after a good walk with trekking poles, but an ice pack works wonders. 

My incision is healing well.  

A week ago I really felt like I had turned a corner in my recovery.  There were a couple of busy days in a row.  I had been sitting up far longer than I do most days, had to go someplace in the afternoon and the evening.  Pre-surgery I would have been in horrible pain, wearing my TENS unit, and not been able to sleep that night because of pain.  Instead I felt tired, my back muscles felt fatigued but I wasn't in pain and I didn't have any trouble sleeping.  Yay me!

I've been walking a mile most days.  It feels good to get out and enjoy the cooler autumn weather.  A few days ago I walked two miles.  That was too far.  I was so slow on my way back and my back muscles were very sore.

I'm not good at really opening up to my feelings and struggles but here's a glimpse.  Hopefully I don't sound like I'm whining.  I'm just really trying to understand what's going on in my head.

Regardless of how well I was doing physically I was really struggling emotionally. Which is why it took me so long to post an update. I was just feeling too depressed. It was much easier to lay around and do nothing when I was so tired.  Now that my brain wasn't drugged up and my body was feeling better it was much more frustrating to do nothing.  It's difficult to be so dependent on other people.  I have tried to do more but I have to be very careful or it is painful.  There's not much I can do when I'm not supposed to bend, twist or lift over 10 pounds.  Even getting dinner in the oven can be tricky.  Straddle the oven door, bend the knees, try not to get burned...  I need to be very careful not to damage anything.  Squatting and kneeling to pick things up is very exhausting.  I helped my son clean his room using my grabber but it was somewhat challenging. 

I still struggle with having to wear this back brace.  It's uncomfortable, restrictive and it makes me so hot.  But more than that I have been hating it for how it makes me look.  I feel like I've been deformed by my scoliosis for so long that I was really looking forward to my new improved back and body.  So, I have this "normal" body now but I have to cover it with this horrible brace.  I feel so bulky, awkward and lumpy.  Sounds kind of vain.  It's helped me better understand the pressures some women feel to look a certain way.  I've felt like a teenager again struggling with my self-image and self-consciousness.  I don't like being different and sticking out.  I'm much more or a sit in the back and try to not draw attention to myself kind of person. ;)  So I had a good talk and cry about it with my therapist husband and am feeling a bit better about it.  Still haven't embraced the brace but I'll tolerate it until February.     

I have really had to force myself to go out walking in the morning.  If I don't go in the morning I probably won't go at all.  Although now the the weather is cooling down it isn't so bad going out in the afternoon too.  In the heat I instantly break into a prickly sweat under this back brace.  I've also had to force myself to eat more and healthy foods.  Sometimes having to eat so much gets terribly boring.  Not complaining, just stating a fact. 

I've talked to a few people about my struggles.  I'm not sure what to tell them when they ask what they can do.  I guess just check up on me.  Text me, visit me, go on a walk with me, ask me if I've eaten.  I'm going to start driving soon and I'm a little nervous about it.  Turning to look over my shoulder is difficult so I'm not sure how safe I feel.  I plan to just drive short distances at first.  Hopefully this new freedom with help lift my spirits.

Among my many wonderful blessings is having my mom be able to come help me on Thursdays and Fridays.  So, as I watch my house fall apart during the week, my mom comes in at the end of the week and whips it back into shape.  (My kids try to stay up on there chores but some days are som busy with schoolwork and other activities)  She's also been able to get my kids to and from appointments.  It's such a relief to know that help is on the way!

I Am a Child of God!

The night before my surgery I received a phone call.  The caller was somewhat muffled so I wasn't actually certain of who was calling me.  They asked me how I was feeling.  Then they asked me something else that I couldn't quite understand.  I told them I was having a difficult time understanding them.  "Just a minute" they said and after some rustling on the other end of the phone they got back on.  "Sorry, I just got a waterproof cover for my phone."  Oh!  Now I recognized that voice.  :)  It was my Stake president.  (For those not of the LDS faith he is the leader over 11 local congregations [wards], which form a Stake)  We talked a bit about my surgery and he let me know he would  continue to pray for me.  He also told me his sister-in-law was having the same surgery on the same day as me.  He called and talked to Joe after my surgery.  His sister-in-law was also not doing well with pain management.  I felt it was so thoughtful of him to take the time to check up on me. 

Last Sunday was Stake conference (twice a year conference with all 11 wards).  I was sitting with my family in the second row.  I told Joe I wanted to go tell the Stake president thank you for the calls but I had a feeling I would get too emotional.  When the Stake president got up to start the meeting he saw me sitting there.  He got a huge smile on his face, waved at me and gave me a thumbs up.  Totally made me smile and tear up.  After the meeting he came down from the stand to greet me.  He told me it was miraculous to see me there  and looking so well.  He asked if he could give me a gentle hug.  I told him I had my armor (back brace) on so it wouldn't hurt.  Then he wanted to introduce me to his wife.  He tried to get her attention in the crowd.  We chatted a bit more about how I was doing and then headed towards his wife.  She was so wonderful!  She told me she had said many prayers for me and my recovery.  Getting teary eyed again, I gave her a hug.  I asked about her sister (who has been really up and down in her recovery).  It was a brief interaction but I felt so touched by their concern and love for me.  I have had interactions with him before and always felt his sincere love for me as part of a whole group.  But on these occasions out of the thousands of people in his "flock" how wonderful it felt that he reached out to me personally.

As I pondered this experience I felt encompassed by love.  I felt a stronger realization of my Father in Heaven's love for me.  He knows me.  He is aware of my needs.  He inspires many people to reach out to help and serve me.  They are Christ's hands in my life. 

(Awesome message about being Christ's hands)  https://www.lds.org/general-conference/2010/04/you-are-my-hands?lang=eng

4 Weeks Later

A few days ago I was looking at my calendar and realized I had my surgery almost 4 weeks ago.  I was surprised...and greatful that it seems like time is passing quickly.  As the time passes I see small improvements on nearly a daily basis. 

I love that I'm sleeping more deeply at night.  As I taper off my medications my pain and muscle spasms are also tapering down.  It still hurts just to a lesser degree.  I still have muscle spasm just not as frequently and they are easier to calm down.  I still get tired easily and take a couple naps a day.  When I'm not napping I'm generally laying in bed resting my muscles.  Showering and washing my hair or trying to put my hair up absolutely exhausts my shoulders.  Many things exhaust my shoulders!  Laying in bed with a book propped up makes my shoulder burn like I'm doing some intense weight lifting routine.  I recently borrowed some treking poles for when I do my walking and it seems to be helping to loosen up my shoulders a bit.  My daily walk to the mailbox is getting easier.  Although I'm looking forward to cooler weather as I get so hot outside in my backbrace.  I've also started walking laps around my backyard.  Trying to promote new blood vessels and healing!   

I'm starting to lose some of the numbnes in my back.  It's kind of weird because it is just in random places.  My hips and rear and getting feeling back.  My left side waist is starting to feel more.  For the longest time it just had that irritating feeling of pins and needles.  Having more feeling is good and not so good.  I have such strange sensations in my back.  I feel the pressure on my spine, especially right where the worst curve was.  Maybe I'm feeling the hardware.  It is so odd having my back touched. I can feel some layers but not others. It's all a little eerie feeling.  There have only been a few times where the itchiness of healing was noticable.  I do occasionally get little shocks as my nerves regrow. 

The physical therapist sent me home with little exercises to do and I feel like I am getting stronger.  I'm not so dizzy or off balanced like I was when I first came home.  I'm getting better at squating down to reach something.  I'm so greatful for my flexibility!  Being able to dry my own legs, without bending my back, after a shower is liberating.  ;)  Still, the best way to put on socks and pants is to lay on the bed on my back and pull my knees up to my chest.  I'm just trying to take it easy and not overdo it.  No way do I want to break hardware and have to go through surgery again.  I was given a lifting/pushing/pulling  limit of 10lbs.  In the beginning I couldn't even lift my waterbottle to my mouth withouth straining if it was filled all the way.  I use more of my fingers and wrists for opening the refrigerator and microwave.  The sliding glass door is still a challenge.  Somethings I can adapt to and other things I just ask for help with. 

My husband, children and other family members are always so eager to help me.  They'll run back upstairs for me to get my medications or something I forgot.  They help me get my backbrace on and off.  They get my icepacks and move them around to where it feels the best.  They get my food, refill my water bottle and clean up all the food I drop.  The list goes on and on of all the ways my sweet family assists me.  I am so blessed to have such a caring, compassionate family!

Here are the improvements to my back!

My awesome x-rays





So easy to see the difference even from the outside :) (oh and that is actually 3 weeks post-op)

 

 



 My rib doesn't stick out so much in front.  My waist is still not quite even.  The muscles are all pulled so much it's going to take months for everything to relax and settle into place.  My torso is so much longer it seems crazy to me but I guess it's just normal.