5 years looking back

It’s been awhile coming for this blog post, but I wanted to wait until I saw my surgeon again before updating.  My 3-month follow up surgical appointment was supposed to be early January, but with the holidays I was told by my surgeon to schedule it at the end of January.  I received a call the week the before my appointment and was told my surgeon was going to be out of the office my scheduled day, and they had to reschedule me and didn’t have any openings until the end of February.  I was supposed to go two weeks ago, but with the snow that was predicted that day I was too nervous to drive 2 hours to Columbus, so they rescheduled me to this past Thursday, meaning my 3-month appointment turned into a 5-month appointment.  Early February I received a letter that my surgeon and PT dropped my insurance as of the end of January.  I applied for a continuance of care, but it was denied.  We worked it out for this visit, and I had my x-rays taken locally and burned to a disc so they would be covered by my insurance.  It was all a bit stressful, but I did make it down to Columbus Thursday for the appointment.

The conclusion from my appointment was that I likely still have pain because I most likely popped a stitch or two from my rectus (a quad muscle) muscle that was partially cut during this latest surgery in October when I accidentally broke my precautions 8 days after surgery, and it will take a long time to scar down.  My surgeon said he rarely goes in to fix tears in this area because over time the muscle and surrounding area will build up enough scar tissue and anchor itself down.  He thinks that with more time the pain I have in that area will decrease as things continue to heal and the muscle tendon fully scars down.  He had my PT come and take a look at me and my strength is pretty good in my hip muscles (not so much in my back I suspect though) but I lack muscle endurance.  I personally also think from a neurological perspective that my muscles don’t always remember when they have to “turn on” and work, or remember how to work together, or what sequence they are supposed to fire in order.  It can be very frustrating.  Anyways, my PT gave me a couple of more exercises to do and said in about 8 weeks hopefully I will be able to progress to some single leg type exercises.  I am also supposed to get back into the water and do some PT stuff in there as well.  Both him and my surgeon said that regardless of the lack of insurance through them, they want me to keep in touch via email and if I have continued problems that they will make it work out for me to come see them again.  That gave me such relief, because being that I still have pain daily and many limitations I didn’t want that door to close, and they thankfully left it open for me.  It’s still hard for me to fully believe everything they predict, because so many predictions have been wrong through this journey.  Also, I am in pain most of the day all day and limited so it’s hard to imagine that in a few months I will be walking all over with little to no pain.  So I take it one day at a time and hope and pray that their prediction will be correct this time.

Being that I was thinking this was going to be my last trip to Columbus (and hopefully it will be) I have been reflecting a lot lately on the past 5 years since all of this started.  I decided last week that I was going to do summary flashback of this journey with words and pictures taken along the way just to help me grasp some closure from this final (hopefully) surgical appointment, and also for those that maybe have read a few updates here and there, but don’t know the whole journey I’ve been on both physically and spiritually.

Here it goes:

So this picture below is me 5 years ago at this time of year (pre-hip problems) getting ready for one of my running training sessions for the Cleveland ½ marathon.  We had just moved back to Ohio from New Jersey 7-8 months prior to be close to family, and life was really good all around.  For the first time in our married lives we had family support, we had a new house, good jobs, had started attending a great church, all was good.  I was itching to make a challenge for myself, so it became my 2011 goal to both complete a ½ marathon and to do it in under 2 hours.  I was a runner already, but only a 3-5-mile runner to stay in shape.  During this time in training when I hit the first 9 mile run I started to develop plantar fasciitis, first in my right foot and within a couple of weeks in the left foot too.  I ran through it and saw a podiatrist and did conventional treatment methods, but it never got better.  The podiatrist said it was safe to keep running, so I did.  I was addicted to running and the runners high so the idea of stopping was not something I was interested in hearing or thinking about.

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     I accomplished my goal May 2011 and ran the ½ marathon in 1:51:57, faster than I had hoped!  It was an amazing experience!  Despite my feet killing me, I couldn’t wait to run another ½ marathon, and my hubby and I decided to do the Columbus ½ marathon that fall together and I was so excited.

As we started out training runs in August, I woke up one morning in so much pain in my feet that I could hardly walk.  I went back to the podiatrist who threw meds at me and sent me to PT, where they told me to take a short break from running.  I was devastated, but thought if I could take care of this problem in a matter of weeks, I could be back out running strong in the spring.  I ended up in PT 2.5 months and never felt any better, but they discharged me anyways.  I watched Yago run the ½ in Columbus from the sidelines with tears in my eyes.  It was a hard day for me mentally because not only was I not running, I was in the same amount of pain as when I stopped running 7 weeks before.  In the meantime, the foot pain evolved to where I was having horrible calf pain in my left calf as well.  I was biking indoors at the time and took a break from that because it seemed to make my calf pain worse, and I tried just swimming for exercise.  (Long story short the plantar fasciitis developed from a rotated pelvis as a result of the hip problems, but at this point no one knew this, we only knew it was PF).  I had started reading my Bible for the first time that year, and was hearing God calling me to trust Him with this.  I decided on December 11, 2011 to get baptized.  I decided that day to follow God no matter what the cost because for so long I knew He had been calling me and I had been resisting Him.  I saw what a broken mess I was on the inside and I knew I needed God to heal me yes physically, but even more mentally, emotionally, and spiritually.  It was a beautiful day.

Looking back, I now know it was not a coincidence as to what happened a few weeks after my baptism.  It was early January 2012 and it had snowed a lot, and our kids (who were 3 and 5 at that time) wanted to go sled riding.  I felt instinctively inside that it was not a good idea for me, but I was desperate to do something fun with them because our plans of going to the zoo and an amusement park that past fall were thwarted due to the pain in my feet and inability to walk very far.  As I walked up and down the hill multiple times I started to have not very good pain farther up my legs.

 

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     By nighttime I had horrendous burning pain all through my low back and both legs down to the toes.   I actually had to use crutches the next several days because I could hardly bear weight through my left leg (looking back I feel fairly confident my second, left, hip labrum tore that day and screwed up my pelvis and lower back even more).  Long story short, the next year was filled with the awful, awful pain 24/7, many dr appointments, meds, tests, therapies, ART, braces, devices, etc… No one could figure out what was wrong with me.  I became severely depressed from the horrendous pain and no longer felt like the same person.  I was not active, I was not functioning as a very good mom, wife, worker at my job as a pediatric occupational therapist.  I spent hours nightly crying and trying to use various interventions to release my rock tight muscles from head to toe for 2-3 hours to relieve my pain to the point where I could wake up the next day and get through the day.  I started giving up hope, but my hubby kept insisting I continue to search for answers.  It was during this time that I started really growing so close to the Lord.  I continued to read my Bible daily, and see the promises of God and how he worked all things for good, even when situations seemed impossible.  My faith was really grown and reading the Bible really transformed me.  Even when I was having really really bad days or weeks I still read the Bible, I still listened to worship music even when I didn’t feel like worshipping.  The Lord carried me completely those days, and I saw evidence of Him working in my life and caring for me with small answered prayers many days when I thought I could not take it anymore.

Through a long story I won’t go into, we figured out something was wrong with my hips late fall 2012.  I was misdiagnosed at Cleveland Clinic in November 2012, but didn’t know it at the time.  The surgeon I eventually met with there agreed I had a hip problem, but told me it was FAI with torn labrum and that me being excessively hypermobile didn’t matter when It came to the surgeries I needed.  I didn’t trust him and he didn’t answer all of my questions, something definitely didn’t sit right with me, so at the advice of a PT friend I called down to a surgeon at Ohio State for a second opinion.  I had to wait 2.5 months to see him, but I felt God tell me it would be worth the wait.  Looking back I can see how God orchestrated these days to lead me to the surgeon I eventually found.

End of January 2013 I met with my surgeon the first time.  He spent almost an hour with Yago and I, and he was patient and answered all of my questions.  I knew that I was led to him by the Lord, and I trusted him immensely at the end of that hour.  He was the first person to suggest I possibly had a connective tissue disorder (which explained the excessive hypermobility and many other joint problems and pain I’ve had throughout my adult life), and said that my back pain and nerve pain he felt sure was a result of having FAI and the hip labrums being torn, and me being hypermobile with instability.  It was a bad combo, but he thought he could fix all, or at least most of the problems.  I scheduled surgery with him at his first available spot which was April.  I was so miserable at this point, I was wearing a sacroiliac belt around my waist at hip level to literally hold my hips inside of their sockets, as they were literally falling out all day long and the muscle were in constant guard mode, and nerve pain that went with it was unbearable.  The surgeries were supposed to be arthroscopic and each was to be a 3-6-month recovery.  He agreed to set my other hip up for its scope for July, 3 months after the first one.  I left that day feeling nervous, but happy to have answers and a solution and plan for the awful pain.  I anticipated I would be fine in a year.

I had to get a 3D CAT scan before the surgery to help him see how much of the bony impingement he should remove, but he said I could do it the night before surgery so I wouldn’t have to come down to Columbus for an extra trip.  The night before surgery we went down, had dinner, had the test, and slept in a hotel.  The next morning I arrived at the hospital and said farewell to Yago and got prepped for surgery.  While in pre-op my surgeon came in with very bad news.  Due to me having a tilted pelvis on my x-rays and MRI’s (which we didn’t realize until he saw the 3D scan) he missed the fact that I actually had mild hip dysplasia.  It showed up obviously on the 3D scan and he told me that a scope would fail, but he still wanted to go in and see if I would be a candidate for the much bigger surgery needed to fix dysplasia, and during the scope he would at least fix my torn labrum because it’s easier with a scope.  He said he would proceed with the scope and do what we originally talked about if I wanted him to, but again it would likely fail.  He gave me the choice, and I told him to do what he thought was best in the long run.  When he left I cried and I prayed to the Lord to please guide my surgeon to do what was best for me in the long run.  It was the first time I truly put my trust in God, I felt completely helpless.  When I woke up in post-op the doctor doing a fellowship with my surgeon came in and said they were going to do the bigger surgery (PAO) in a few weeks.  I cried again and the nurses broke rules to bring Yago in to comfort me.  I did thank the Lord though because I sensed that was the best decision.  I was pretty bruised and swollen, but recovered quickly from the scope, and was scheduled for 5 weeks later for the PAO.

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     May 17th, 2013 was the big day.  I was scared.  Actually I was terrified.  My sister had PAO’s and I remember talking to her about how hard it was.  It is essentially the surgeon taking a hammer and chisel (and a saw at times too) and cutting the 3 bones in your pelvis around the hip socket, then rotating the socket, then putting crazy big screws in to hold that bone in place.  6-8 weeks of no weight bearing and 3-4 months on crutches.  An epidural is used to numb the leg for the first 48 hours because the pain is so bad.  I was also on morphine and 2 other narcotics.  The pain when the epidural wore off was the worst pain I can ever imagine.  Hopping with a walker 6 feet across the room made me sweat profusely and almost throw up and pass out.  I woke up one morning and my BP was 78/39 and I thought I was dying.  I received 2 units of blood (1 pre-donated by my brother and 1 pre-donated by myself) and left the hospital after 5 days.

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     The recovery was tough.  The hardest part was hopping on a leg that was not fixed yet.  My in-laws lived with us 7 weeks to take care of the kids and house.  I spent the greater part of the first 3 weeks in bed, and finally started leaving the house for short outings (mostly in the wheelchair) with the family around 4 weeks.  I didn’t expect the amount of exhaustion that comes with major surgery and blood loss.  That part was tough for me.  I had a hard time focusing on anything for over a month due to fatigue and pain meds, so I was not able to continue with reading my Bible these days, but I did continue to pray and listen to worship music.

About 3 weeks after surgery I developed carpal tunnel as a result of so much time on crutches having  the 2 surgeries so close together,  I still remember the blog post I wrote then.  My operated leg was in pain and the muscles had no started working yet, the other leg was in pain because I was hopping on it and it was not fixed yet, and both wrists were burning in pain non-stop from carpal tunnel, and all I could think about was “I have to go back and do this all over again on the other side.”  It was a whole new low for me that week.  I researched and bought these fancy Mobileg crutches online later that which and had them rushed to the house, and they did help take the pressure off of my wrists and cut my wrist pain by 75% within a couple of days, and I was so grateful for that.

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     Week 7 I went and saw my surgeon and got clearance to start land PT (I was doing water PT already for 3 weeks) and to start bearing weight on my leg.  I spent another 4-5 weeks on crutches and slowly got stronger.  This is the x-ray taken from that visit of my newly reconstructed hip socket.

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     It took a good 12-18 months for that side to feel ok.  In the meantime my biggest problem became that the other hip got so bad while rehabbing the operated side, after a month with no crutches I had to go back on them for the right (non-operated hip).  I had to quit PT then because it was causing my right hip and lower back to be incredibly painful.  We met with my surgeon in August and he was very convinced that the right side was very borderline dysplastic (much less than the left was), and that I did not need a PAO, just arthroscopic surgery to shave excess bone and repair the labrum.  It was a much simpler surgery and recovery.  I was scared it would fail, but he sat with Yago and I and went over everything for almost an hour and we left the office feeling ok with the decision.  I spent 7 weeks on crutches leading up to that hip scope in miserable pain.  On October 22nd, 2013 I had the scope.

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Within weeks of the scope my pain never lessened.  I started PT and it made me worse instead of better.  I was so miserable and depressed, and was trying so hard to lean on the Lord, but it was really tough these days.  By 3 months I knew something wasn’t right, but no one believed me, everyone said it was too early after surgery to say if it failed or not.  My good friend gave me the following paper and it encouraged me to hold on:

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      I decided to quit PT at this time and tried rehabbing with a personal trainer friend of mine, and I got a little better.  At this time I decided it would be worth it to drive bi-weekly to Columbus (2 hours away) and see my surgeon’s PT who focused on hip patients.  I realized I was not a” typical” patient and needed someone who really knew what they were doing.  I saw him 2.5 months and improved some, but plateaued and never really could go farther in my PT without flaring my hip and low back.  It was around this time (spring 2014) where I realized that perhaps things were not going to work out as I expected them to.  That maybe God had another plan for me, and that this was not a detour in the path of my life, but the main road.  For so long I had kept expecting to get back off the detour and carry on, but that was my plan and not God’s.  I put my faith in Him that things would turn out ok however that looked (and it was likely not going to be the ok I was expecting up to that point).  That’s not to say I never struggled after that, or that I still don’t, because I do.  I’m just saying that I fully put my trust in God and gave up on thinking this was a detour in my life.  I came to peace with things.

At 9 months’ post op my surgeon and PT finally believed me that the scope failed and we put a PAO for the right side on the calendar for late August.  I was relieved and wanted to get it over with ASAP because of the pain I was in.  In early August I found out my surgeon was leaving Ohio State and going into private practice, and that being he was going to be at a new hospital with a new staff who had no experience with this surgery (he is one of the only dr’s in Ohio who can do this surgery) I now had to wait until November to get the PAO.  Another major setback, but I had no choice but to continue to wait.  I so badly wanted to not be in pain anymore (Still waiting and praying for that), but God was definitely growing my patience at this time.  I prayed for patience back in late 2010, and boy did the Lord answer that prayer in a way I never would have anticipated.

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     I knew what to expect going into the PAO this time, and had a decent leg to hop around on.  Also, at this point my kids were 6 and 8 and both were in school all day which took a tremendous burden off of us.  My in-laws could not come, but my mom had retired that year so she agreed to come over daily the first weeks to take care of me and get the kids ready and off to school daily.  I pre-froze meals and some friends from church cooked meals for us as well which was so helpful.  The surgery was November 18th, 2014.  It was bad again, but not quite as bad as the first time.  I received two units of my own pre-donated blood and spent another 5 days in the hospital.  One of the worst things that happened this hospital stay was that I got dehydrated and my nice big veins shrunk and they couldn’t get an IV in me to hydrate me and give me my second transfusion.  I was poked with various IV needles for 2 hours 7 times before we had success.  During those 7 times they were digging around with the needles.  It was awful.  I still had some issues and had 3 more pokes before leaving the hospital, YUCK!

I started water PT a few weeks later and spent weeks in bed again, but slowly got better.  New Years was at 6 weeks and my sister was here from CA visiting and we enjoyed time together despite me being non-weight bearing on crutches in pain.  I tried to be in good spirits and enjoy the evening.  The following is a picture of my sister, myself, and my mom from that night (my mom does not drink alcohol for the record, we were joking around telling her she had to hold a bottle of rum to be in the picture).

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     The next week after New Year’s I saw my surgeon and got clearance to start bearing weight and land PT.  We decided given my complicated history having me go to Columbus to see his PT vs. seeing PT here where I live.  My dad drove me at first weekly, then bi-weekly, then tri-weekly, then monthly for several months.  I myself couldn’t even drive locally until 4 months’ post op since it was my right leg and I was having major pain in my hip flexors. The following is the x-ray from that visit.

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     As time went on I continued to struggle with my hip flexor muscles.  I was getting stronger in hip glute muscles, but had so much pain so easily at the front of my hip.  Everyone kept saying give it more time, but I felt something was wrong.  I went through the spring and summer rehabbing and doing my best despite my limitations.  I could not be on my feet more than 10-20 minutes without bad pain starting in my low back and front of the hip.  I am very hypermobile as mentioned earlier here, I have always had pain in my neck, and on/off in my low back and various joints in my body, but this pain was different.  My hip joint itself felt stable (which it had not before the PAO) but I could not figure out what it was.  That summer of 2015 we visited my hubby’s family in Guatemala (the plane ride and walking through the airport almost did me in!) and we finally went to the zoo, but I had to ride on a scooter.

At the end of summer 2015 I visited my surgeon again with the ongoing problems, and he suggested I get a shot into the area at the front of my hip as a diagnostic tool, as he suspected my hip flexor tendons were rubbing on my Anterior Inferior Iliac Spine (AIIS) which is a bony prominence on the pelvis.  With the left hip he shaved it off during that PAO, but on the right he didn’t foresee a problem so he left it on.  The shot took away all of my pain temporarily and confirmed what he suspected, impingement of the AIIS.             We scheduled surgery for October 1st, 2015 to shave off of my AIIS and remove what screws he was able to remove (because I was worried that maybe they were contributing to my ongoing pain and muscle issues).  When I woke up after surgery he told me that he partially detached and re-attached a muscle to get to the bone he needed to shave off (and then shaved it off), got 4 screws out, got another 5 screw heads out but they broke off and those parts of the screws were still embedded deep in my bones and should never be a problem, and 1 screw he wasn’t able to get to at all without cutting muscles so he left it in there.  So here is the final product.  I guess I am “screwed” for life, lol.  I got to keep the screws that came out and the heads that broke off as a momentum.  They are as big as they look, several the size of a pencil, crazy.

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     My PT said I shouldn’t need direct PT afterwards, that he and I could email back and forth and I could do my exercises at home.  I’ve had so much PT for my hips, and 1.5 years’ worth by him at that point, that he knew I could do all of the exercises correctly.  I mentioned in the beginning of this post about the breaking of a precaution 8 days post op and the stitches popping, which was scary and frustrating (and still is).  I am trying to stay positive and hope that by taking things slowly with strengthening that maybe that pain will disappear and my pelvis will get more stable, but I don’t know God’s plan for me, and I have to be ok with that.  Giving control to the Lord was both a one-time as well as a daily decision I have had to make.  My life may never be active again, but I will continue to hope and pray it will be.  To hope and pray for no pain is asking for a miracle given the hypermobility problem I have (I have had PT for most of my joints and have had long term pain in several of them even leading up to my hip problems), but through God all things are possible, so I will continue to pray to be pain free as well, BUT I am not going to be angry or upset or bitter if those prayers are not answered while on earth because one day I Will be pain free when I leave this earth, and I look forward to that new body and new life. While I am here on earth though, I am determined to keep my focus on the people and missions God has put in my life and be open to how and where He wants to use me to spread His love and His message and His glory…..because this life, it’s not all about us, it’s not about trying to find things to make ourselves happy by chasing after things that temporarily fill the voids deep inside that we cannot fill on our own.  It’s about God, and finding love and peace in relationship with the Lord, and allowing Him to transform us and use our lives to glorify and serve His purposes.

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     I’m closing out this very long post today with the saying above which I found on social media.  It has really stuck with me since I saw it a couple months ago.  I consider myself blessed in that as I look back now I see that God has shown me a big part of the purpose of the suffering I’ve been through these past years.  I know not all are so lucky as to see His purposes while they are still walking this earth, and I imagine that must be frustrating and discouraging.  Whenever I have felt these feelings in the past, while in the middle of the storm, when I didn’t see the purpose at the time, I turned to God’s word for comfort and to read and re-read His promises.  Several of these verses helped to give me peace during those times:

Romans 8:28 “And we know that God causes everything to work for the good of those who love God and are called according to his purpose for them.”

John 17:33 “I have told you all this so that you may have peace in me.  Here on earth you will have many trials and sorrows.  But take heart, because I have overcome the world.”

Romans 5:3-5 “We can rejoice too when we run into problems and trials, for we know that they help us develop endurance.  And endurance develops strength of character, and character strengthens our confident hope of salvation.  And this hope will not lead to disappointment.”

2 Corinthians 12:9 “My grace is sufficient for you, for my power is made perfect in weakness.  Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.”

Psalm 119:14 “You are my refuge and my shield; your word is my source of hope.”

If you’ve made it this far and read everything, I feel honored and say thank you for caring and reading.  I hope that something that I’ve learned and shared from these past painful 5 years somehow helps or impacts you in even a small way, and that if you are not in active relationship with Jesus that you know He is there waiting for you and doesn’t want you to wait until you are heading into the storm to accept His invitation (which is what I did), but would love to take the life you have now and make it even better with and though Him.  Thanks again for reading, until next time.

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4 days until surgery

I didn’t realize it has been well over a month since my last post.  I’ve been through a myriad of thoughts and emotions during this time period.  I am 4 days away from the RPAO and hip scope surgery.  I’ve been waiting many months for this which has taught me even more about patience and has given me a lot of time to reflect on the past 4 years, as well as my whole life in general, but I’ll get to my reflections in a bit.

Physically I have went downhill these last weeks.  I still never fully recovered from the hip move Dr Ellis did July 31 (the one that left me realizing without a doubt that I needed this surgery).  I started using the cane outside of my house about a month after that visit and have continued to since then, and this week have even pulled out my Mobileg crutches when having to do long distances (ex. going through Toys R Us Christmas shopping).  My hip instability has just slowly gotten worse and worse over these last weeks.  It probably didn’t help that I have been a shopping, decorating, and cooking maniac trying get everything ready for Christmas and my daughter’s birthday (which is 3 days before Christmas) as well as for surgery.  I have prepared and frozen 8 large meals so I’m hoping that will help my hubby out some.  Last surgery his parents came and lived with us for 7 weeks which was awesome!  They did everything for us and took care of the kids, he just had to work, grocery shop, and take care of me.  This time although they will not be here my kids are 1.5 years older and in school (although they have 6 days off at Thanksgiving and 2 weeks at Christmastime, yikes!) at 6 and almost 8 years old so thankfully they will be easier and more independent than last time.  These kids have been so good going with the flow and learning to be independent with things so much earlier than most kids their ages.  We will also have my mom several hours a day (before and after school to help out with the kids and some cooking), but I know that things will be different and the stress level will be pretty high.   I think I mentioned before that we are hosting a high school exchange student this year as well.  We committed to this last winter before we knew for sure this PAO would be necessary so that’s a little more added stress as well as things are not going quite as expected with that.  Anyways, I have done all I possibly can to get things ready around here, and am unfortunately paying the price for it physically.  I was using my SI belt to try and hold my hip better in the socket, and it did help for awhile, but this past week it started making things worse instead of better, so I stopped using it again.

I have been doing my 3-4 basic glute PT exercises at least every other day, as well as a couple of planks and some basic upper body stuff with my bands to try and keep my core and upper back from getting too weak while waiting on surgery.  It’s not enough though, as I can feel myself getting weaker, but if I try and add anything else in my routine it just flares my hip up even more.  I’ve also continued to get myofascial PT every 2 weeks to try and give myself a little relief (which is lasting less and less days again, kind of like before every surgery I’ve had).

This weekend we are going to a concert tomorrow night with my daughter and friends (her first concert-we are going to see TobyMac who she really likes so we are all very excited) and church, but other than those things I’m just laying low and trying not to flare myself up too much.  I plan to use crutches at the concert as not to put too much pressure walking, but I know I will flare some from standing and attempting to “dance” while enjoying the music.  Monday night we head to Columbus, then Tuesday morning I head into the hospital.  My anticipated discharge will be Friday, but last time I stayed an extra day due to very low blood pressure so I’m thinking it will either be Friday or Saturday to come home.  I have all the equipment from all of my other surgeries, so I just have to bring it all up from the basement and we should be good to go.  My parents are coming to stay with the kids next week, so praying for patience for everyone here at the house.

People keep asking me how I feel about the upcoming surgery.  I have mixed emotions on it.  I’m ready to be on the other side of it because I am so sick of the pain I’ve lived with so long, that seems to be getting worse these last weeks, but I also know what to expect afterwards and remember how bad it was to have a broken pelvis and be so dependent on everyone for everything (even getting up/down out of bed/off of couch).  I know it needs to be done, I’ve seen the positive results from my LPAO 1.5 years ago, but I also know it took a good 3-4 months to feel not too bad, and a good year+ to feel “ok” in that hip.  I will say that honestly I am looking forward to being under general anesthesia to be completely pain free for those hours (projected surgery time is 5-6 hours).  Call me crazy I know:)

It’s been over a year since my right hip scope that we can now officially say failed.  I think in this journey of 4 years I’ve grown and learned the most in the past year, particularly in the last 7 months.  Most days I’ve learned to relinquish control and fully trust God.  Some days I backslide, but instead of breaking down crying and being a mess, I put on some loud worship music and praise God or spend time just talking to him and praying my way through the days.  I’ve spent countless hours doing this on days when I am doing things and when I have  quiet/reflective time.  I always end up in a lighter and much more positive mood after this. I spend a lot of time alone which would have driven me crazy in the past, but I actually like the alone time I’m spending with God now.

I feel like such a different person now than I used to be, a much better person in so many ways.  Trying to live a life for God vs. living life for myself has made me a much more peaceful person.  Where doubts, fear, and anxiety ruled my thoughts much of the time before, when those try and come in I turn to the Lord who releases those things from me.  I realize now that had my scope been successful, had I been healed and well within the 6-12 months that people normally recover and move on I would not have grown this close to God, would not have gone through so many of the changes I have gone through, and I would not be the person I am today (which is sooooo much better than the person I used to be).  My marriage is stronger, my husband has grown closer to the Lord and in his faith, our priorities are very different than they were before, and we now have a clearer vision of how we want to raise our kids in these times of change in the world.  When people say to me “you’ve been through so much” I agree that I have, but it’s not in vain, not without purpose.  Romans 8:28 “And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.”  So even though I wouldn’t have chosen this road for myself, He has chosen it for me, and it has worked for good in many ways, and even though I get weary and down on this journey at times, I wouldn’t change it or take it back because SO much good has come out of it.  He knows better than I what I need and what is best, His plans sometimes are so much bigger than what we can see.  I just need to keep trusting Him and keeping my faith in Him and His plans.  God knew/knows what I need(ed) in order to change into the person who he intended me to be, and I am open to letting him continue to changing me and preparing me for what he has for me to do in this life, and also for what lies ahead beyond this life.  I’ve come to an  abandonment of my plans in order to follow his plans for me.

Deep stuff for a Friday night, but I felt it was necessary to share, especially to those who are struggling in their own lives and feel hopeless in their situations.  I’ve been there, I’ve been through the storm, I’ve been through deep depression, I’ve been hopeless and have felt like giving up, like dying to get out of the awful pain, but turning to God who has shown his faithfulness over and over again and has given me the strength to get up and keep going even on the hardest days and He has rewarded me not with a quick healing, not with a fixed body, not even with a pain-free day, but with love, hope, patience, endurance, and a new sense of peace deep in my soul.  I wish all my friends and family could experience this, which is why I am sharing  this tonight.

So the next time I blog I will be on the other side of this surgery, probably on heavy narcotics (so the post may be a little loony so please forgive me ahead of time).  I’m hoping everything goes smooth, but it’s all in God’s hands.  I ask if you are a praying person (which I’m assuming if you are still reading at this point you probably are) to say a prayer for me on Tuesday morning, that there will be no surprises, that surgery goes smoothly, that pain is controlled well, and I have been praying for supernatural healing (which I know Is possible with God).  Thank you for reading as always, signing off with Love to all who read this, hoping that the Lord too can touch your life the way he has touched mine.

My experience with scoping a very mildly dysplastic hip while having hypermobility

I don’t usually post on my blog twice in a week, but decided I wanted to write a post specifically for the PAO group on Facebook.  This group has been a wealth of information for me the last few years and I notice a topic that comes up frequently and thought I would write about my own experience with it—mild/borderline hip dysplasia with impingement and torn labrum, how it presented/is presenting and considerations to think of when trying to decide what surgery is best for it: scope vs PAO.  I realize everyone’s bodies are different and that symptoms and severity vary between all of us with dysplasia, but there are often communalities (even in those of us that don’t present as a “typical” hip dysplasia patient), so I am simply sharing my experience hoping to help someone who is in the same shoes I was last year.

On my left hip I had a scope April 2013 then a PAO on it in May 2013.  Once my surgeon was in with the scope and saw the hypertrophic labrum and where the wearing of my cartilage was taking place, he said that my hip presented more dysplastically (it had a CE angle of 22 with some acetabular retroversion and 27 degrees of femoral anteversion) then it did like an impingement.  Being almost 16 months post op on that hip it’s not perfect, but it is way better than it was and I have absolutely no regrets with the decision for the PAO on that hip.

When it was time last fall to decide on the future of my right hip (CE angle 24 with same version measurements as the left) my surgeon really thought I could get away with just a scope because the dysplasia was so mild.  My symptoms on the right were somewhat different then the left, so we really thought the impingement was the main problem.  I was scoped on that hip October 2013.  It had a bit more damage to the cartilage than the left did, and although the labrum was bigger than a normal hip, it wasn’t as large as the left had been.  Where the cartilage damage was had been more typical of that of a person with FAI, so my surgeon after the scope again told me he did not think I needed the PAO, and that being it was such a big surgery with a lot more risk he didn’t want to perform it on me unless absolutely necessary.  He did say that my recovery would probably take a longer time than most being that I am very hypermobile (likely have EDS, but haven’t pursued the official diagnosis).

From early on I was miserable, I knew I had a lot of things against me (EDS, weakness-I was on crutches for that hip for 5 weeks leading up to surgery because of the pain-, age-I was 34 at the time, and of course having very mild dysplasia still).  Everything I did in PT flared me after the first 3-4 weeks; I could not progress past very basic isometric hip exercises without flaring bad.   The bike even flared me and I did very little of it in my recovery.  My ROM was of course wonderful and within the normal range within weeks (thanks to lovely EDS) but I could not gain strength or get rid of the terrible pain in the back of the hip joint and all the muscles around my right hip and even the whole pelvis at times.  My PT kept pushing me through more difficult exercises talking about how I was “behind” in my recovery.  I started to hate PT because of how awful it would make me feel for days at a time.  At 4 months I saw my surgeon and said I thought the scope failed because I was maybe 10% better than pre-surgery.  He said to wait more time, and we couldn’t call failure until closer to 9 months.  We agreed my PT was doing me more harm than good (and this is the 3rd hip PT I had—a different one after each surgery since they were not good and always made me worse) and I quit PT.  I had been getting ART at the time for pain relief from all the flares PT caused, and his personal trainer who worked there said he would work with me for free doing the FMS training and going very very slowly.  As the weeks went by I still had pain everyday all day, but was able to gain some muscle and core strength, so the pain decreased bit to a tolerable level on many days, I had minimal flares, and instead of muscle pain all over I was developing more and more pain deep in the back of the butt/hip socket area.  At month 7 I started traveling 2 hours away to see my surgeon’s best PT guy who had tons of experience working specifically with my surgeon’s post op patients.  I started seeing him every 3 weeks.  He had me start back at very simple isometric glute type exercises.  I had a hip injection around this time also, and although the muscle pain did not go away (muscle pain in psoas, low back, hip rotators, glutes and IT band) that deep aching and sometimes burning pain in the back of the hip/butt went away for a few hours.  My PT started saying that was more a sign of joint dysfunction then just “chronic” muscle issues.  I kept up with the simple PT exercises and my pain decreased more, I was actually doing things like going to the park with my kids and pushing them on swings, staying on my feet for up to 30 minutes with only minor pain.  My PT didn’t want me to progress with exercises until I could do all 5 every day and get through my whole day with little to no pain for at least a week.  I started to get excited that maybe it really was a muscle issue from my PT pushing me too hard too soon over the winter time.  That feeling that I was getting better lasted less than a week before I went backwards.  This summer has been filled with ok/tolerable pain days for a day or so, followed by a bunch of really bad days, followed by mid-level pain days.  When I saw my surgeon July 31st and we talked and he moved my hip around and saw that my crazy ROM I still have and all the pain I still have and finally said that it didn’t appear the scope worked.  According to his PT my strength in ALL of my hip muscles improved greatly, but the pain level only improved minimally.  That too apparently is a sign of dysfunction.  As I was talking to my surgeon that day thinking I was a bit better he asked me what percentage of my pre-hip life I was living, and I honestly told him maybe 30%.  That pretty much summed up the decision to have a PAO on the right hip too.

Anyways, on the PAO group we always want to know symptoms so I am going to write my symptoms pre and post scope hoping maybe it helps someone in their decision making process when faced with the option of scope vs PAO with mild dysplasia.  Pre-scope on the right I had pain deep in the butt, some groin pain although not terrible unless I was pivoting on my right hip then I got this sharp, deep catching pain in the groin (this was from the torn labrum).  Muscles all around my right hip were constantly going into spasm, as well as my back muscles, and even at times all of the way up the neck.  Sitting hurt, standing hurt, walking hurt.  Laying down I still had pain but it was much better than any other position.  Post scope as I am at almost 11 months out on this right hip, I still have the deep butt pain and it will burn in there if I do too much (which I’m chalking up to inflammation because it usually happens later in the day and I know it’s not nerve pain because I’ve had a ton of that due to my EDS and lumbar instability and pelvic instability) and the muscles around my right hip and low back fatigue and develop trigger points everyday very quickly.  I wouldn’t say they are in spasm (unless I go crazy and try to do too much causing a spasm) but they get very tight quickly and hurt/ache/burn a lot of the time.  I also can feel the femoral head is not situated up inside of the socket the way it’s supposed to be.  It feels like it is lateral and sitting too far back.  It’s hard to imagine I suppose, but after my LPAO within a couple months I could feel my hip was in a good position inside of the socket.  On this hip I have never felt that, and as time has gone by this past year I’ve felt it settle even more to the side and back.  Day by day my symptoms are becoming more and more reminiscent of the how my left hip was before the PAO. My whole body responds to the tightness around my right hip, my sacrum twists, lumbar spine gets pulled on, sometimes I have nerve pain, and my right foot collapses into pronation.  I can use my muscles to pull it back up in the socket and hold it in place, but immediately the muscles feel overworked and spasm if I try to hold that position to walk or weight bear.  If I walk more than 5-10 minutes I also develop that deep joint pain in the butt and it hurts to weight bear.  I also feel much better when laying on my right side, which seems to help push and support the hip in the socket.  When I lay on my left side it feels like the femoral head shifts around and the muscles respond badly in that situation.  Well, I hope if you read this it can help you with your surgical decisions.  It would have been great to go right to a PAO and skip this past year of misery, but I’m not dwelling on it, I just hope to help someone else in the same situation.  My surgeon did say that he really believes that if I did not have hypermobility I would have done ok with the scope, but having lax ligaments and borderline measurements is like a double whammy and set me up for failure.  Live and learn then move on:)  Thanks for reading!