Surgery date set…..the waiting period

Well, as the title says I am going through with an RPAO on my right hip.  The last post I wrote and talked about the hip and low back flaring up from my surgeon manipulating my hip.  That alone convinced me that the instability in the right hip is just as bad as I suspected and that I am not crazy for getting a PAO on a hip that is very mildly dysplastic.  It took a good 3 weeks to recover from that day.  Since recovering from the manipulations to the hip that day, my hip has not been the same.  I’m not angry (frustrated a little some days because I am on the cane in the community pretty much always, and I cannot walk as much as I could before that day) because it gave us the final information that we needed to decide to go ahead with the PAO.  My surgeon left OSU and went into private practice during the month of August.  Thankfully he is still in Columbus though!!  Once he came back from vacation and his new assistant started I was able to get on the schedule for August 27th to see him again and get put in their system and get a surgery date.  My dad drove me to Columbus again on the 27th and we talked everything through once again, he apologized for causing me to have such a bad flare up.  My surgery date will be Tuesday, November 18th.  It will be a new hospital, new OR, new OR staff, BUT my same surgeon and his PA from OSU is coming in September to join him so that is very comforting to know that she will be in the OR again as well.  I will go back within 30 days of my surgery to get a physical, bloodwork, sign consent, and another 3D CAT scan.  At some point the Red Cross will contact me to set up for me to donate 2 units of blood again (so if I need to have a transfusion then it will be my own blood).  Last time things were rushed and I donated 1 unit and had my brother donate the other unit and I ended up using both units.  The first unit of my own they put back in me while I was still under anesthesia since it was there and I lost a bunch of blood despite the cell saver used.  The second unit (my brother’s) I didn’t have to have because I was just into the normal range (I think this was day 3), but I was so weak, dizzy, and tired symptomatically that they gave me a choice and I choose to get it, which I was so happy I did because it made a pretty big difference in how I felt almost immediately.  Anyways, that’s about all I need to do to prepare on that end.  On the home front I’ll need to start freezing meals a month before and pull back out all my DME stuff and take care of Christmas and birthday (my daughter will be 8 on December 22nd) shopping ahead of time.  This time should be a little easier because both my kids are in school all day now and are gone 8:30-4pm, my mom is retired so can help out, and with colder weather I shouldn’t be so depressed about being stuck in the house (as compared to the last PAO when it was May/June and I felt like I was ruining everyone’s summer).  Christmas school break does fall at weeks 5-6 after surgery and my kids will be home then, but hopefully I’ll be up to hanging out with them and going a couple of fun places (me watching of course) with them at that time.  Also this time around my left hip is fixed and pretty strong so I hope not to have compensatory pain as bad as I did with the LPAO.

Anyways, we are hosting an exchange student who is arriving tomorrow from China.  He’s 15 and will be with us for the school year.  We are nervous and excited about it.  I worry for my husband who will be in charge of everything those 6-8 weeks I’m laid up and unable to drive, but he says he can handle it.  My kids started school on August 18th and have settled into a routine nicely.  I’ve been volunteering at our church library a few hours on Thursdays to have something to do.  I would have loved to go back to work, but physically cannot be on my feet walking around a school all day long (or chasing an occasional “runner”), so I’m trying to find smaller volunteer opportunities that allow me to sit and stand, not have to walk long distances, and only last a couple of hours.  I’m trying to minimize my flare ups until surgery, although there are a few things on the horizon that I know will flare me, but I have decided they are worth it.  This weekend we are going to the OSU – Virginia Tech game.  The walking to the stadium alone will flare me, then sitting 3 hours in the stadium and then back to the car, well…..you can say I’m a bit nervous.  We are staying the night in Columbus being that it’s a night game, so at least I don’t have to worry about a 2 hour car drive back after that.  We bought these tickets months ago assuming I’d be better, which I’m not so this is an instance I will suck it up, flare a few weeks, then hopefully go back to my “normal” pain.  My son’s birthday is also this month and we told him we would take him to the zoo, so I will rent the electric cart and we’ll go; although I know this too will flare me.  Every decision I make to do anything (small or big) I have to decide if it’s worth the pain it will cause.  Sometimes it’s not, sometimes it is, and sometimes I think I’ll be ok until that day comes when I realize it would be a mistake to continue with plans I made.

I have to say that my whole body has responded negatively to that flare up from July 31st.  Now the hip feels like it is sitting to the back/lateral part of the socket and not up in the socket where it should be.  Being that my labrum is likely not torn (although I will get scoped again with the PAO at the same time to make sure it’s not torn) I think the lax ligaments don’t hold everything where it needs to be and my whole body responds to that.  Being hypermobile (likely with EDS although I don’t want the official diagnosis) my low back muscles are compensating for the right hip, which is causing tightness all the way up to my neck.  I’ve always had neck pain and trouble for years, and my chiropractor I had been seeing said I had the most hypermobile neck he has seen in his 15 years of practice.  Well, it’s getting worse as the hip got worse and pelvis got more unstable.  When my neck muscles get tight, it pulls my vertebrae out of alignment.  That may seem weird or impossible to most people, but if you live with EDS you know anything is possible.  Anyways, I could tell something was out way up high in the cervical vertebrae, my dizziness that I get when going from laying or sitting to standing increased, and once when I got up too quickly and walked a few steps I blacked out and collapsed on the floor.  After a few seconds I came to and crawled to my bed and got up more slowly.  This would probably freak most people out, but I’ve had many instances over the years where this almost happened so it didn’t freak me out too bad.  I saw the chiro a few days after and told him I thought my C1 or C2 were out because of all the neck pain and dizziness.  Usually he works on the muscles and loosens them and things rotate back into place.  Well this time they didn’t rotate so he asked if he could adjust me.  I should have said no because on hypermobile people adjustments rarely produce positive results, but I stupidly said yes and he did it and instantly the dizziness was worse.  Over the next 3 days I experienced horrible bouts of vertigo with my heart racing and head thumping.  I was totally freaked out.  My myofasical PT added me in to her schedule Friday and she was able to fix a lot of what was bad.  My C1,2,5,6,7 were all severely rotated to the right as was my sacrum which is my bad hip side.  This is what I’m talking about, bad hip for me = pelvic instability which = compensation of low back muscles which = jacking up everything up the kinetic chain.  Anyways, she released a lot of tightness in the pecs and shoulders and neck and did gentle muscle energy to re-align my neck vertebrae then released some tight stuff around the sacrum to allow it to move a bit back into place.  Things are still off from the muscles pulling, but I don’t have the dizziness or vertigo and the neck pain has decreased 50% so I am happy with that.  I will be seeing her bi-weekly now until surgery to try and stop things from getting so bad again.

Anyways I’ve been relying on my faith to get me through the last couple of weeks, not letting myself panic when the worry and what if’s start in.  I’ve been more regularly reading my Bible and some days just keep worship music on in the background all day long to keep my spirits up.  When I start focusing on my circumstances and all the things out of my control I find myself starting to freak out, so I try not to let myself “go there”.  I’m really trying to focus on God and the eternal perspective instead of the temporal stuff, it’s tough though because I am human and want to feel good, do fun things, and have a “normal” life; however that is not God’s plan for me, at least not now.   I’ve been also thinking lately about how privileged I am in the USA compared to the majority of people in most countries in this world.  I have food, water, a house, the ability for free speech and religion and to not be persecuted for it, spending money, a good educational system, access to great medical care, and on and on….. If you have never visited a third world country before I would highly suggest it, no matter how bad your circumstances may seem, there are people going through the same things, BUT in a country where they don’t have the same medical care, freedoms, accessibility, etc… It’s very humbling and places a large amount of perspective in even the bleakest of times for me.

I don’t know what’s in my future, I just keep taking things one step at a time (since when I did try and plan ahead for things in my life, particularly in my career over the past 3 years since this hip journey began, they never worked out).  I don’t know if physically from my body being so stressed from the hips/pelvis/EDS over the past several years if I physically will be able to my job as an OT in the future or not.  Only time will tell, but I am thinking and praying over whether that is God’s plan for me going forward or not.  I always felt deep inside that I would not be an  OT forever, that there was something else I would be called to do.  With all of this happening and not being able to work the past year and a half I wonder if this is what will lead me to what I am supposed to do.  I don’t know, I’ll keep putting one foot forward, taking each step as it comes, letting this all unfold as it’s meant to, trust in God’s plan for me and all that it encompasses, and try to enjoy each day as much as able because really my time here is just a snapshot in the eternal perspective (daily reminder to selfJ).  Thanks for reading.

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3 thoughts on “Surgery date set…..the waiting period

  1. I’m both happy and sad to hear this. Surgery is bad, but being in chronic pain and disabled is much worse. You know it’s really bad when you are excited for surgery. At least I was. By the time I saw Mayo I was ready to jump up and down and hug him. You mean I’m not crazy and you can fix this?! What are you, a magician 8D My hysteria came right after Dr. Philippon said I wasn’t a scope candidate. By the time I got to Mayo and Sink I just wanted my life back and didn’t care what surgery was needed. I spent 3 continuous years being bedbound, and 4 years total over the past 5 years, which is when this all started.

    I feel the same way about my right hip. Dr. S did everything else but derotate socket or femur, so if this fails, I’ll know that a PAO or FO is needed. But if he had done the FO and I had complications, I might regret it. It’s also possible to derotate too much, and my tibias are more twisted than my femurs. I was worried that would make my knee problems worse D: At least you will have no regrets about this surgery.

    I’m doing pretty good though, and that severe pain along with sublaxing is gone. It still gets achy, but I know I take a long time to heal, especially with the EDS. Only time will tell if this surgery was enough to permanently fix my hip. Good luck, and I’ll keep you in my prayers. The months after your surgery will be filled with healing, and a bright new future 🙂 *Hugs*

  2. Julie remember that your friends want to help in “little’ ways. We can prepare meals for you! Just ask and we will be there. I know that this is not major in what you face but most of us don’t know how to help. Prayer is the weapon we know that can help. Let us know what else we can do. God bless you!

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