Physical Therapy

I went to PT yesterday, everything is going pretty well. My hip has a pretty good range of motion (ROM) which is the main thing I'm working on now. I won't start much strengthening until I can bear more weight.

Recently, I've been having this strange left knee (operated on December 09) feeling/pain when my knee is bent. I notice it more when I lift up my knee in a bent position, like when I lift up my leg to get out of my wheel chair. My PT thought it might just be that my joint is stiff, so I'm going to work on that and see if it goes away. It's strange because it's not so much pain, which is a good thing but it makes it a little challenging to explain what it feels like.

I've been able to lay on my non-operative side recently which is very nice and more comfortable. I also have been able to lay on my stomach more. It gets rather boring to lay on my back all day, everyday so it's a nice, exciting step of mixing up laying around all day.

I get my stitches out tomorrow early morning, then I got to PT in the afternoon with my regular therapist.

Update

I'm not taking anymore narcotics, which is a big step. I'm feeling more like myself, also good but it makes not being able to walk more annoying. Even though my hip isn't hurting so much anymore it's still uncomfortable to sit up in my wheel chair. The couch is a little more comfortable, but my bed is still the most comfortable. I have to be careful and plan out my days according to when I need to be up in my wheel chair and make sure I'm not making myself do too much sitting. Needless to say, I'm ready to start walking, although I have quite a while before I'm actually able to do that.

I have another PT appointment tomorrow. Then Thursday I'm having my stitches removed, then more PT (this time with my regular guy).

5 Days Post-op

When I woke up this morning my feet were hanging off the bed, and my hip was killing me. I'm not sure what or how I pushed myself all the way down my bed, but I know my hip didn't like it very much.

I laid in bed all morning, well really until about 4:00, with the CPM machine trying to get my hip to calm down. As long as I'm lying down and not moving too much, then my hip feels alright. After a while, I got up and sat in my wheelchair, put on some real clothes and was feeling more normal. I sat up for over an hour, then moved out onto the couch in the family room. When I got out of my chair my hip immediately hurt a lot more. I knew it was starting to hurt more when I was in my chair, but getting up made me notice it more.

I was able to cut down a couple times today on my pain medicine, but I think it's going to be a little while longer before I can cut down any more.

I have a PT consult tomorrow. My regular therapist is out of town, so I'm going to see someone else just for this initial consult so that when it's time for me to start PT this is already taken care of.

Post-op Update

I'm slowly starting to feel a little better each day. As of yesterday I'm not as tired, I can keep my eyes open for a little bit, before it was a lost cause.

I'm not quite ready to start skipping and cutting down on my medicine, I'm still in quite a bit of pain. Moving around is a struggle and makes my hip very soar, so I usually stay in a spot for the majority of the day. Right now, it's uncomfortable to sit up in my wheel chair so I either lay in my bed or on the couch.

I'm still not eating much. My dad made some homemade pita bread last night and I was able to eat that. Once I start cutting down my medicine I'll get my appetite back, but until then I just have to be careful that I'm eating enough so that I don't pass out.

Yesterday I had a bad headache, almost a migraine. I had a bad one in the summer with my right hip surgery. It turned out that I was getting too much oxycodone. Remembering that, my mom had me skip my next oxycodone and just take my other pain medicine (trazadone). After a nice long nap, my headache went away. Skipping the oxycodone was good for my headache, but it made my hip pain hard to control after that. It took a couple rounds of medicine to get it back under control.

I had some friends visit Friday, which was nice. They brought me a bag full of stuff from my journalism class with lots of useful recovery items to keep me warm and occupied. I really appreciate having my friends stop by, it makes my recovery more pleasant.

I'm Home!

I got to come home today around 2:00, which was all I wanted to do since I woke up this morning.

Last night it took a while to get my pain under control, but they finally figured it out so that made me more comfortable. I got really nauseous last night so they gave me some IV medicine to make that go away and I haven't noticed it since then. I successfully got up with physical therapy today, without passing out which is something I often do post-op.

Right now I'm feeling much better than I was last night. As long as I take my medicine every 4 hours my pain is controlled fairly well. I'm using a CPM machine (I used it in June with my other hip). It bends my leg at my knee which provides movement in my hip so that my leg and hip don't get stiff. I like it, it makes my hip feel more comfortable. I have to use it for at least 4 hours for the next 2 weeks. When I'm not in the CPM machine I have to put these boots on. They look like soft ski boots and they Velcro together so that I don't laterally rotate my hip joint (a movement I have to avoid for the next 4-6 weeks).

So far I'm doing pretty well.

Thanks to everyone for all the good wishes, it mean a lot to me.

Surgery Report

Surgery went well. I'll have more specifics later on.

I think my pain is finally under control.

I started feeling very nauseous a little bit ago, but I got some medicine and it seems to be going away.

Well time for me to get some rest. I'll give a better update tomorrow hopefully.

A Little Update and Some Surgery Talk

I know it's been a while since I've filled everyone in, it's been a busy past couple of weeks. I thought I should get a quick update in before I have surgery.

My left hip (operative side) is pretty much the same, still popping out (the reason I'm having surgery) and still causing me pain. I guess that's a good thing since I'm getting it operated on this Wednesday. My right hip (June operation) is so much better than it was a year ago, and I can't wait until I can say the same about the left side. However, my right hip has started some new issues. I'm having more joint related pain, most likely due to minor subluxations in that hip. But, it doesn't cause constant pain and it seems to be subsiding from what it was a few weeks ago so that's good news. I'm still much much better than I was a year ago, even two and three years ago so I'm not complaining.

Well now that we have the hips out of the way...
I've been having more lower back pain (SI joint area). It's most likely due to the increased subluxations of my right hip. I've had SI joint pain off and on way before I knew I was diagnosed with EDS. It was always just on my left side, now it's on the right side too. There isn't much I can do before I have surgery, so I've been using the heating pad as much as I can, which gives me some relief. I'm kind of getting used to the back pain, which makes it seem not as bad. I'm hoping that I'll get some relief once my left side is operated on because I'm sure the fixed hip v. the not fixed hip isn't helping the situation.

I go in for surgery tomorrow, which I'm completely ready for. I'm ready to get it over with and I'm ready to have a working hip. The hospital will call sometime this afternoon with the time that I need to be at the hospital, most likely bright and early. The surgery is the same on I had this past June, just on the other side (left) and it's a combined surgery as opposed to the separate scope and Z-Plasty (lengthening IT Band) surgery. Overall, it will make my recovery faster, but I'm expecting to feel not as well for a little longer than I was in the summer since it will be more extensive surgery all at once. My surgeon will go in with the scope first to check things out, fix any tears and tighten my hip capsuel and any other surrounding ligaments that need tightened. Then he'll open my hip up laterally and lengthen my IT Band with the Z-Plasty technique. (see past blog post on Z-Plasty)

I'll update as soon as I can after surgery, probably tomorrow night.

Physical Therapy Check In

I went to PT yesterday to have my gait video taped for the last time before my surgery. My gait is even still improving from the surgeries on my right hip, which is very good news.

As always, good news comes at a price. Recently my right hip (operative side) has been causing me more discomfort. Since surgery I've had little, if any pain in that hip; but now it's beginning to sublux. (Just to clarify, this is not what was corrected in surgery. My IT band is not snapping over my hip anymore, which was what my biggest problem was) This subluxation that I'm experiencing is my actual hip joint moving out of place.

My PT tested my hip yesterday and confirmed that my pain and discomfort is coming from my hip joint. So this is good news because it means that IT band wise, the surgery is working and holding up; not so good news because my joint is now moving out of place.

There isn't much I can do right now for my right hip until I have surgery on my left side. Of course, I'm going to avoid movements that make me more prone to subluxations, but I can't avoid moving completely. My PT recommend sitting on an exercise ball while I'm at home; watching TV, or just doing homework. This is a simple way to gain core strength and balance, which will provide my hip with more support. I'm going to try it for the next week or so and see if I see any improvements.

No More Neuro

First off, I'm sorry about the video. I've completely forgot about adding the most recent one, the best one. I don't have the one from my PT but some day soon I'm going to take a new one so I can share that.

I talked about neuro PT in the last update. As of Thursday I'm going to stop going (which I'm kind of happy about). I was working with one guy who knows my original PT guy, he was trying to figure out if there was anything from a neuro standpoint. He didn't find anything and he didn't have any really new ideas that I hadn't already tried. Being in PT for really the past 4 years, I've tried almost every exercise any PT can think of, so it was a challenge for him.

However, he did want me to see someone in his office who specialized in women pelvis misalignment. I have off and on SI joint pain and she thought I might have a misalignment that is causing it. She discovered that my pelvis was indeed misaligned, so she did some muscle energy techniques to try to re-align it. The first time she got it to move so that it was in more alignment. Then she gave me some simple exercises to try. Then next time I came in, it was back in the same place and she couldn't get it to move at all. She tested other thing, like my sacrum, to see if that could be the issue but everything else was moving like it was supposed to.

We decided that it didn't make much sense for me to keep coming in since we weren't getting anywhere. It's hard to make much progress because my body is uneven right now, with one hip fixed and the other hip not. So, I'm going to be in touch with my regular PT and might start therapy back up with him, but it might make the most sense to just wait until after my surgery in December.

I'm also in the process of scheduling a gait analysis. It looks like it's going to be November 8th, for pretty much the entire day. I'll give an update about the analysis when I know more.

Neuro Physical Therapy

I've been working with a new physical therapist. He is a neuro specialist, which means he works with lots of patients who have neurological issues, like trauma patients. I don't have any known neuro issues, but the way I respond to different exercises sometimes makes it seem like there is some underlying neuro issue.

My main physical therapist has been sharing my case with this neuro PT for quite some time now to see if he had anything to add. Since I was starting to plateau in regular PT he thought it would be a good idea to have a neuro PT consult, just to see if there was anything else to add.

I've been to see my neuro PT about 4 or 5 times now. He's still trying to get a feel for me, and how my body works which always seems to take a while for others to fully understand. We're trying to find exercises that I haven't tried in the past and that I'm able to do. It's a little difficult because my right hip (operative side) wants and can do a lot more, but my left hip doesn't allow me to do those things.

I've been using this oscillation board which is proven to help with balance and back pain. Basically I stand on this machine and when it gets turned on it shakes, or oscillates back and forth. The goal is to hold a position, I do this with and without my eyes closed for more of a challenge. Here's a link to the kind of machine I'm using, it's not the exact one but you can get the idea.

http://www.vibra-trim.net/VT100.html

I haven't noticed any improvements yet, but I'm not expecting this to fix my left hip. I just would like to get as strong as possible before my next surgery (December 15th) so that my recovery is easier. This is always my goal because EDS makes recovering a little more difficult.

I know I keep saying this, but I'm really excited to get my left hip done. I know it's weird to say that you're excited for a surgery, but I really am. I still can't believe how much better my right hip is and I can't wait to say the same for my left hip. I can't wait to not have constant hip pain, it's an exciting thought.

Gait from Winter 2009

Gait from Winter 2009

Gait from Fall 2008

Where Did the Time Go?

Man oh man, I can't believe it's been so long since I've updated.

My right hip is way way better than I ever even imagined. To be honest, when I went into surgery I wasn't completely sure this was going to work. The surgery was just about my only option left and living with constant hip pain and popping for 3+ years, I was ready to do whatever it took. I wanted to have surgery just to finally do something to possibly fix my hips. The past 3 years have been a huge waiting game; trying new therpies, having countless tests, seeing more and more specialists and constantly planning my life around my hip pain. Needless to say, I was ready to have surgery even if it didn't completely fix my hips. I wanted to be confident that the surgery was going to work, but being let down many times before made it hard for me to put all my eggs in one basket.

Now, all I can say is that I wish I did this 3 years ago. It's such a great feeling and I'm honestly excited to have my other hip done this December. When I say I'm excited to have surgery I think a lot of people don't really understand how I could be excited to be cut opened...again, but I really am. Seeing how well my right hips is doing I'd go in tomorrow to do my left hip.

I have some videos that were taken before my surgery and new ones just recently taken. I'm going to try to upload them within the next few days. It's really pretty cool to see how much better my right hip is now post-op. It's amazing!

I've been in North Carolina this week, I go every year with my dad. He has a summer staff meeting here and I tag along and we have a pretty good time. I wasn't sure if I was going to be able to go this year, but here I am.

We're in the mountains, and although I'm not quite ready to go on a hike, walking around here even just on the streets is still a bit hilly and defiantly a workout. It feels good though. My right hip is doing really great, much better than last year when I was here. I can walk more and it just overall feels much better.

My right SI joint (lower back) has been bothering me more. It doesn't seem to be effected by the amount of activity I do, which is good and bad. Good because it means I can keep doing what I'm doing activity wise, but bad because it means I can't really control or expect what it is going to feel like. I often plan my life around how I can expect to feel after an activity. For example, if I'm doing something really rigorous then the day before and the day after I'll try to rest and give my body a beak since it's more work for my body than it would be for someone else's.

Hopefully if I can strengthen my gluteus and core I'll get some relief in my back, as well as improve my hip and make it more stable. So I'm going to, as always, continue to work on my exercises and really focus on PT and getting stronger.

Knee Check-Up

I saw my knee guy in Cleveland last week and he thought my knees looked very good. If it wasn't for my hips and everything else that was going on I would be completely cleared and ready to do pretty much whatever I wanted physically.

Left knee wise (operated on in Dec), I'm doing good and really can't complain about anything. Right knee wise, I'm beginning to feel a little bit more unstable but it's not enough that I need to do anything yet. I'm going to continue to watch it, but I'm not too worried about it right now.

Physical Therapy

I went to PT on Wednesday. It seems like I'm making progress hip wise, but my back has been killing me. I'm going back to land based therapy for now and we're going to see how that goes.

Right now I'm really working on my core and gluts. When I activate my gluts it makes my back a little better, so hopefully strengthening them with improve that. On Monday I have PT again and I'm going to use a bio feedback for my pelvis. It's like a belt and it beeps at you when you're pelvis isn't in a neutral position. I tend to always want to lock everything out when I'm doing exercises, especially my back. The idea is that using the bio feedback will prevent me from locking out my back and force my muscles to do their job. It's going to be a lot of work because I have to re-train my body, and my muscles the correct way to work since they've been compensating for my hip issues for so long.

My therapist is also going to video tape my gait and compare it to my pre-op videos. I think that will be pretty cool because my gait always looks better, so I'm excited to see it side by side.

Long Time No See

I've been on vacation at the cottage on Lake Erie this past week, so I unfortunately haven't been able to give an update.

Before I had surgery I wasn't sure if I was going to be able to go to the cottage or even if I was going to be able to walk by then, which was going to put a damper on the trip. It ended up being much better than expected. I could do pretty much everything I wanted.

Going to the beach was no problem. I would take my crutches down to the beach and walk with them a little, just for added support. I think walking in the water ended up being really good for me. Not only did I have the resistance of the water, but the waves too.

My right hip continues to feel better and better. My right lower back, SI joint, has been bothering me more however, but I'll take what I can get. Overall I think I'm still in less pain than I was pre-op and for the past 4 years even with more back pain, so that's something I can't complain about :)

Walking & Popping

Day three of walking and things are looking good. I'm not have much pain at all, and if I do it's not from my IT band (z-plasty) but from my actual hip joint it's self.

Let me explain my "popping" for a second.

My hip problems consists of two different kinds of popping. The first is the IT band, when it slips over my hip (greater-trochanter; lateral side of the hip). I refer to this as "my hip popping out." The second is when my actual hip joint pops. It never actually pops out, like a dislocation. The best way to describe it is as a clunk, you can hear it and I can defiantly feel it. The z-plasty of the IT Band was to fix "my hip popping out", the scope may or may not fix the hip joint clunk.

With that said, my right (operative side) hip doesn't seem to be popping out now (IT band), but then again I try to avoid letting that happen because it would be very soar. It feels like it isn't going to do that anymore, meaning the surgery was successful, but it's still a little too early to say for sure. Right now the only popping I'm having in that hip is the clunk of my hip joint. It's hard to tell if it is better, worse, or the same as it was pre-op. My surgeon said at this point you just have to wait and see how the scope part of things heals. He said a lot of the time patients experience popping and other things post-op and by about 4 months later they all go away. He couldn't say for sure if the popping I'm having now will go away then, we'll just have to wait and see.

As you can imagine, when my hip joint pops (the clunk) I have more pain since it's newly operated on and things are still sore. Other than that I'm really doing remarkably well. My walking feel almost like normal. I even have to make sure I hold back a little bit since I'm not 100% yet and so that I don't increase my pain; pain is my guide.

Physical Therapy

I went to PT yesterday, and things went very well. I'm walking pretty much like normal, unaided. My PT was surprised at how well I was walking and even that I was able to at all. He was defiantly expecting me to be worse off than I am.

I did some light land PT exercises, some old ones that have always been apart of my exercises. Right now I'm going to be working on getting my core muscles back (abdominal), especially my lower abdominal (TVA), and quad.

My left quad (non-operative side) is showing major muscle atrophy. It most likely is still suffering from previous quad troubles I had after a femoral nerve block (about 3 1/2 years ago). I have mentioned before that I have trouble when I'm down and out for long periods of time, this is exactly why. The more my quad atrophies, the more danger my knee is in (operated on in December) because it has less support. I would really really like to prevent a dislocation in that knee so I'm going to be working very hard to get my quad some strength. My right quad (operative side) is actually stronger than the left. Good news for my right side, not so good new for the left.

Pool therapy went very well. I did some walking in the pool. I can do forward walking with out popping with the exception of turning around because I have to stand on one leg. Backward walking is a little out of my game right now, I popped out with every step when I tried that. I was able to stand on one leg while holding on to the edge of the pool. My right side (operative side) was actually more stable than the left, VERY good news! I'm not sure if that's just from the scar tissue I have now or if the z-plasty is actually working. It's kind of weird for me to say that, my surgery is looking like it's doing it's job.

For me, with EDS, scar tissue is going to be my friend. With most patients you would try to manually work out the scar tissue because when it forms it makes the area very tight. But, for EDSers that's a huge plus, tightness is what we need. It will most likely go away with movement, but if it sticks around it wouldn't be a bad thing.

Right now, I'm allowed to walk unless I have pain. Pain is my guide. I really don't have much, if any pain. My IT band isn't painful at all (the most recent surgery). If I have pain it's coming from the scope, my labrum and my actual hip joint. My hip joint is still popping, which is something that may go away in a few months because of the scope, but right now I just have to wait and see. When my hip pops it's pretty painful, but that doesn't happen all the time.

So far, so good. I can't complain with the progress I'm having and I'm extremely happy that I'm able to walk unaided.

Counting Down

I'm counting down the days until I can start walking again. Wednesday is my day and it can't come soon enough. Lately, I've been using my crutches as my main way of getting around except fo when I go on a longer outing, like going shopping or something like that.

I'm more than sick of not being independent and I'm ready to be able to go places without the wheelchair or crutches. Not only do I just not like crutches, I mean who really does, but it's defiantly taking a tole on my shoulders. My right shoulder is starting to bother me more and more from the stress of the crutches. I'm anxious to get to walking so I can give my shoulder a rest as I would really really like to avoid a dislocation, boy would that complicate things.

I do have to say that I like being able to crutch around because I've been able to go out with my friends and hang out. The past couple nights I've been able to hang out with my friends and stuff, which is very nice. They just send someone over to pick me up and I'm ready to go.

Thursday's Appointment

I went to see my hip surgeon on Thursday to clear things up and talk with him before he goes on his 3 month fellowship in Colorado. He's studying with on of the best hip surgeons, so maybe he'll have some new tricks for me when he gets back.

I'm still non-weight bearing until next week. After that I can start walking as much as I want and am comfortable with. I'm starting PT and water therapy on Wednesday. I'm going to have regular PT first (30 mins), then water therapy (30 mins). After Thursday my only restriction is no active abduction, other than that I'm pretty much free.

I got back to clinic in another 2 weeks to have some x-rays and another check-up. This appointment will be with the PA (Physician's Assistant) since my surgeon will be gone.

We decided that my next hip (left) is going to be a combined surgery instead of 2 separate ones. I'm scheduled to have it done on December 14th. It should be easier because I should be able to use crutches by then, assuming that my right hip (and knee) are stable enough to support me. If I can use crutches I'm going to get the Mellennial In-Motion Pro crutches (http://www.millennialmedical.com), They take the stress of of your shoulders and wrists, major concern with EDS. They also have shocks at the foot and they fold up so it's easy to travel with them.

I'm very excited to start PT again, and especially water therapy.

Questions

I'm going to see my surgeon today and we have lots of questions.

Weight-Bearing Restrictions:

1. How much can I crutch?
2. Can I go to the beach (walking or with crutches)?
3. Can I swim in the lake after I start water PT?
4. Right at 4 weeks can I walk, or do I need to come back in to clinic?

The Other Hip:

1. Will I have the exact same thing done for the other hip?
2. More or less repair through the scope?
3. Combined surgery or one?
4. Have you ever used Millennium crutches (Specially designed crutches that reduce the stress on shoulders and wrists. This is a big concern with me when I have to use crutches because of EDS.) ?
5. Will I be able to use crutches after my left hip surgery instead of the wheelchair?
6. By doing more with my right hip will I make my left hip surgery worse

Other Questions:

1. When should I expect to be 100%?
2. Can I screw up my IT Band (if I fall, walk too much, abduct, etc.)
3. Since I didn’t have bone work done, am I going to have to have this surgery re-done down the road?

I’ll give an update of how the appointment goes either later tonight, or tomorrow (my appointment isn’t until late this afternoon).

A Little Update

I’ve started sleeping upstairs. My dad moved my bed back upstairs the other day. It’s nice to be back in my room and it feels like I’m getting back into the swing of things.

I’m starting water PT next week (Wednesday). I’m going to do 30 minutes of land PT, then 30 minutes of water PT. I’ll most likely be walking in the water and very simple exercises at first. My goal is to eventually be able to use the water and swimming as my exercise, doing lap swimming a while down the road. With EDS it’s important to keep your strength up, swimming is an excellent way to do this because it’s non-impact and unloads your joints.

Shower

Yesterday I was able to hobble upstairs and take a shower. I don't use the crutches or walker to go upstairs because I think it's too hard and I think it puts more stress on my other leg (hip and knee). To get upstairs I just hold onto the railing, hoist myself up, and hop.

It was very nice to take a normal shower since for the past month I haven't been able to. Washing your hair in the sink just isn't the same. I sit down in the shower, since I'm still not able to bear weight, but it's still worth it.

It's good to feel clean!

A Very Confusing Clinic Day

I saw my surgeon’s PA today.

She told me that she wanted me out of the wheelchair, but she also said I was still supposed to be touch down weight-bearing for 2 more weeks. It’s frustrating because it was obvious that she doesn’t understand my case, more importantly she doesn’t understand why I’m not using crutches like a “normal” patient would post-op.

I don’t want to be in the wheelchair a second longer than I have to be, but I also don’t want to start walking sooner than I’m supposed to and make something worse just because of miss communication.

My next concern is muscle atrophy. Anytime I’m down and out I atrophy more than the “normal” patient, this is attributed to EDS. I haven’t started PT yet, which is concerning because I don’t want to atrophy any more than I should. I’m ready to start water therapy after 4 weeks post-op (July 24^th), but I was expecting to start regular PT by now.

To complicate this miss understanding, my surgeon is going away for the next 3 months. Next week will be his last week here. I wanted to see him before he goes away because otherwise I won’t see him until my next surgery and we have to decide if he’s doing the scope and Z-plasty combined or separate. Now most importantly, we have to figure out what exactly my weight-bearing restrictions, when I’m able to and supposed to start walking, and when I’m supposed to start PT.

Lots of questions, so hopefully we’ll get them all cleared up next week when I see my surgeon.

10 Days Post-Op & Z Plastia

It's 10 days post-op and it seems like it has been a lot longer then ten days. I think have the scope two weeks before this last surgery makes it seem like I’ve been recovering forever. I do have to say that I’m doing very well for 10 days post-op, but I’m already ready to be done (well just to walk). To be able to walk is all I want to do right now. I’m able to sit for longer periods of time now, which is nice because I can do more and mover around more. I also can pretty much get around by myself and do transitions alone, from bed to wheelchair and vice-versa. Being more independent makes all the difference and makes me feel like I’m part of the world again.

Z-Plastia
I thought I would explain a little about what Z-Plastia really is. So the term Z-plasty refers to a surgical technique of making a Z incision into the effected tendon (or whatever the effected are is) in order to lengthen it. If you think about it, it is really the only way to lengthen the tendon.

This is the best, non-graphic picture that I could get. First the surgeon makes several cuts (which eventually form a Z), then the cuts are flipped around (see the first picture the Z incision is going one way and in the last picture the Z is flipped around), and stitched so that the tendon is all one piece. After this procedure, the tendon is actually longer.

Personally, I find this a very interesting technique. Maybe at first it doesn’t make much sense how it can actually make a tendon longer, but I think seeing it like this might make it easier to understand.

Happy Fourth of July!

This morning, I got out of bed all by myself. It’s a little tricky because I can’t use my abductors, so I have to scoot into a sitting position on the side of my bed to avoid pulling my leg outward. It probably sounds a lot more complicated than it actually is. Once you understand what abductors are, needless to say with going through multiple years of PT and counting I know when I’m using my abductors, it’s not too tricky.

Everyday I feel a little better. I even feel like I could just get up and start walking, but I’m still non-weight bearing for 3 more weeks. I’m glad that I feel better, but I hate feeling perfectly fine and not being able to move.

I’m getting a little worried about the rest of my body, my other leg in particular. The thing that is complicated with EDS is that when you have a surgery and aren’t going be able to use a leg, your other leg takes on added stress, joints specifically. For EDS patients this becomes more of a problem than for the average bear because EDS joints aren’t in the best shape in the first place and really relay on the rest of the body to support them, a lot of compensation goes on. It’s not just the leg you have to think about, the shoulders, wrists, elbows, and any other joints all go along with that. My newly operated knee (left side, which is where I have to now carry all my weight) is starting to feel a little over worked. It’s only been six months post-op, so it still isn’t even completely back to normal it’s self (it really takes a year post-op to fully return to normal and get all the benefits of surgery). So for the sake of the rest of my body, I’m hoping that I’ll be able to start walking sooner.

Not being able to do anything is hard and it’s hard to think that in 5 months I have to do this all over again on the other side. But, hopefully if this surgery makes my hip more stable and stop it from popping out because then I should be able to use crutches by that time. That would make things so much easier and I could be more mobile. There are some really great crutches that take some of the stress off of your shoulders that I’ve researched. I will defiantly get those if I’m going to be able to use crutches for the next surgery.

I hope everyone has a great 4th. I think we’re going to have a little neighbor get together tonight which will be fun. Other than that, we’re just hanging out and enjoying the lovely weather.

Uncomfortable

I’m defiantly feeling better, which is good. I’m not in as much pain anymore; it’s more of just soreness, which is also good. But, as I start to feel better lying in bed all day gets very uncomfortable. It’s still uncomfortable to sit in my wheelchair for long periods of time (over an hour) so it’s beginning to be a little bit of a catch 22, as it seems many of my medical adventures turn into. I’m hoping that in the next days I’ll be able to sit longer, which would allow me to do more.

Last night I was able to roll over to my non-operative side, which has been all I wanted to do. It might seems like a lame accomplishment to all you healthy movers out there, but let me just tell you, it is a pretty big deal for me.

I have an appointment in clinic a week from today. I’ll get my stitches out and such. It will be two weeks post-op, so I’ll be halfway done, well at least half way done with non-weight bearing, my recovery will be much long than just a month. My stitches seem to be healing very well, but I still have the rash all around my incision. Keeping up the Benadryl.

Busy Day

Well today has been one of the most exciting days in a while.

This morning my mom and I went for a walk (well a wheel for me) around the neighborhood. It was perfect weather. We got to stop and talk to my old babysitter, down the street from us, which was nice.

By the time we got home I was having more pain so I took some medicine and laid down in my bed for a little nap. When I woke up we went to the lovely little farmers market in town, got some fresh local produce and some other tasty things.

That alone was a pretty big day for me, with my first outing and all. But, there’s more. My sister is coming home from Bolivia tonight. She’s been there the past month, so I’ve very excited to see her and it will make things more interesting around here.

So far today I’ve only taken one dose of pain medicine and I don’t think I’ll take anymore until I go to bed for the night. I plan on skipping the middle of the night doses as well, and then I’ll see how I feel in the morning. I’m hoping that I can drop it all by tomorrow; maybe just take one does before bed.

Incision and Such

Yesterday I took off my dressing and what did I find?... another reaction of some sort.

I started taking Benadryl a few days ago because I was really itchy so I’m going to keep that going until it starts to clear up. The rash is all around the steri strips that are over my stitches. My incision is on the side of my leg from my underwear line to about the middle of my quad. I’m supposed to leave it open (with the steri strips on) until I go to clinic to have the stitches taken out, July 9th. I’ve been keeping a chuck pad under my leg just so it’s clean and so I don’t get any drainage on my bedding. Now, I just have to avoid itching my leg.

I forgot to mention my scope incision. My surgeon took my scope stitches out when I was at the hospital for surgery #2. Since I have EDS a big concern is with stitches because my skin doesn’t properly heal together and a big risk is having stitches pop open after they’re taken out. To avoid this he put cement over my scope incision after he took out my stitches to double secure it. It looks like someone put clear nail polish over my incision. He said in a few days the excess cement would roll up and fall off. I thought it was kind of interesting, and my guess is that he’ll use it again when he takes my other stitches out.

I’m going to try cutting down on my pain medicine today. I’m going to start taking one pill during the day, then go back up to two tonight and see how it goes. Hopefully I’ll still be able to get pain relief and be a little livelier, since as of right now all I do is sleep. Also, I’m hoping that it makes me feel a little better because I’m still just eating sick food. I’m keeping my fingers crossed.

We scheduled days for my other hip this morning. As of right now the plan is to have the scope the day before Thanksgiving, then have break to heal and go back to school so that I only miss one day (surgery day). Then in December, have the second surgery the Wednesday before break so that by the time school starts I’ll be feeling good enough to go back. I’ll probably have to go back to school in a wheelchair because it won’t be 4 weeks post-op yet, but I think that will be easy enough.

Soar Throat, No More

I’m happy to say that after a few frosty treatments my soar throat is much, much better.

My hip is still pretty soar, I’m still taking all my pain medicine. Going to the bathroom seems like it’s gotten a little easier, it might just be that we have a routine down now. I pretty much stay in my bed all day. Sitting in my wheelchair is too uncomfortable because it puts pressure on my hip and makes me bend right where my incision is. I sleep most of the day away, and the night for that matter, but that’s ok because I don’t have much that I could be doing.

My incision has started getting itchy again, so I started Benadryl just to be safe. I’m supposed to take my dressing off today or tomorrow. I haven’t seen my incision yet so I’m kind of interested to see how it looks. I have to keep my stitches in until the first week in July, so I’m not too sure if I’m supposed to keep my incision open for that long, the discharge instructions weren’t very clear. I think my mom is going to call my surgeon’s office tomorrow and see what they say.

Overall, I’m feeling pretty good.

Home!

I came home from the hospital late yesterday afternoon. My surgery went really well. He ended up doing a lot less than planned, which means that my recovery should be more pleasant than expected.

I have to be non-weight bearing for 4 weeks, and I'm not allowed to do any abductions (pulling my leg outwards). Other than that I don’t really have any restrictions.

I’m defiantly ready for my pain medicine when the time rolls around. Getting up to go to the bathroom is a struggle, but I think we have a system down which works pretty well.

Ever since post-op I’ve had a pretty soar throat. It’s from the tube they put down your throat in surgery for anesthesia. Whenever you have surgery you get one of these, but I’ve never had such a soar throat. It makes eating a little tricky, so I think its frosty time.

Tomorrow's The Day

Well, I go in for surgery bright and early tomorrow at 6 AM.

I'll defiantly be in the hospital until Friday, but weather I go home Friday or not depends on how much my surgeon does. The blood that I previously donated will be at the hospital tomorrow just in case I need it. If I need blood during surgery they'll start a transfusion in the operating room, but usually a transfusion happens post-op (it could be the same day or even a couple days after). Transfusions are determined by amount of blood loss from surgery and hemoglobin level, so I'm sure I'll be having my hemoglobin checked often while I'm in the hospital.

I'm very excited to see how this surgery goes, as well as what my surgeon finds and what he thinks about my other (left) hip. We're going to see how this surgery goes, recovery and all and then probably schedule surgery for my left hip. The sooner we schedule the better because my surgeon has a very full schedule. I think with school and all, the smartest things seems to do my scope around Thanksgiving break and then do the next surgery around Christmas break, that way I won't have to miss school. Thanksgiving break gives my plenty of time to recover from the scope, then Christmas break gives me a little longer to recovery from the next surgery since that will be more invasive.

I'll keep you guys posted. I'm going to take my computer to the hospital so I'll try to write at least a short something about how things go, but I'm not making any promises.

Adiòs for now.

Whoops.

I guess I’ve gotten caught up in things, and have been bad about writing lately.

I’m doing really well! Walking fairly normally. I can’t walk around the mall or anything, but I can walk short distances and I’m supposed to take frequent breaks. I’ve been working on my PT exercises. I’m sleeping upstairs; I’ve even felt good enough to sleep on my stomach and non-operative side recently. It seems like my rash around my stitches is clearing up, we’ve discovered it’s probably from the beta-dine that we used at home to change the dressing. I’m not wearing a dressing over my stitches anymore, just the steri strips that they put on post-op in the hospital. Eventually the steri strips will fall off and my stitches will just be bear, one already has. Because I’m having surgery again instead of making me come into clinic they’re just going to take the stitches out when I go in on Thursday, convent. I’ve gotten the showering down. I wrap my leg in saran wrap so that my stitches don’t get wet, and then I’m good to go. It works very well.

Getting ready for surgery number 2.

There isn’t a whole lot I have to do since my last surgery was so recent. Just get together lost of loose clothes, and dresses as that seems like the easy way to go. I’ll probably shoot for more dresses because this surgery will have a larger incision and pants will just be too uncomfortable. I think I’m going to pack a hospital bag for this one since it’s likely I might have to stay.

Physical Therapy

I went and saw my physical therapist today. I've been working with him for years, I feel like he's family. He's been with me since my very first knee, so he knows how I work. When you're a tough case it's good to have someone who has been there from the beginning. He's good with thinking about new ways to approach exercises to adapt them for me, which let me tell you is how we make all of my exercises.

Anyways, I'm going to start on some exercises to work on my lower abdominals. This is something I've been working on for a while. The idea is that because I have this hip issue, I compensate by rotating my pelvis forward and then trying to lock everything out because that's where I'm more stable. I unconsciously do this to protect myself because my joints aren't strong enough to support themselves alone, hence EDS.

So what I have to do now is retrain my body how to work. Since I’ve been locking out for so long it’s what’s most comfortable for me and I have to undo all of that, easier said then done.

The way you do that is to strengthen all of the muscles that I’ve avoided using the past years, so off to my exercises I go.

Super Fine

We'll I'm happy to say I slept upstairs last night. I scooted up the steps because I'm too afraid to let my hip pop out, I'm sure that wouldn't be too pleasant. I slept in Alex's room because my bed is still downstairs and it made more sense to just leave it down here for my next surgery then to carry it up and down, well for my dad to carry it up and down. I started the night out with the CPM machine on, but it was bugging me and it keept slipping off the bed, I don't know how tall men use it because the bed is even too short for me. So anyways, I took it off and sleept on my side, that was lovely.

This morning I hopped down the stairs, that scooting business is just too slow.

My pain is not bad at all; it's better than what my hip pain was pre-op, so that's good.

I ate real food last night, and pretty much all of yesterday.

Walking

Today I decided I didn't want to use my wheelchair, or my walker. I simply walked all by myself to the bathroom, then outside. Now I'm going to go upstairs and take a shower, like a real person does.

Oh did I mention the walking and the going upstairs part!

Allergic Reaction?

So we tried to do everything possible to prevent me from getting a reaction to adhesive and everything else they used on my skin during surgery. You might remember the terrible reaction I had to the tape that was used for my epidural with my last surgery. It was a mess, to say the least. After experiencing that disaster, we though that I had an adhesive allergy, specifically to Medipore (a specific type of tape, which is commonly used for surgical dressings). So for this surgery, we told the hospital that we thought I was allergic to Medipore tape, so they used a different kind of tape, which I’ve used before and hadn’t had any trouble with. Thinking that would be the end of that, we didn’t pay too much attention to my dressing. When I went home we changed the dressing daily, like they told us to. The stitches looked really good, I didn’t even have bruising.

By about day 3 or 4 my stitches started to turn red and they were super itchy. Knowing my history, we started on Benadryl pronto. Today, the redness is a little worse, and there are several little bumps that have formed around my stitches. It doesn’t make much sense because I never had any adhesive right around my stitches; the tape that was on my hip was much farther away, not close to my stitches. So it seems like I might be allergic to the beta dine that we used to clean my dressing.

We’re going to make a call to my surgeon’s office to see what they think, and to see if we can narrow down what I’m having a reaction to so that I can avoid this for the next surgery.

Ramps

My ramps came today so I can freely go outside. It makes things so much easier. Right now I have one 2 foot and one 4 foot ramp. The 2 foot one is nice because it's shorter and doesn't take up as much room, but it makes the angle of elevation a lot steeper, so someone else has to ease me down the ramp. The 4 foot one is really just too long, but I like it because I can do it by myself. I think we're going to get the 4 foot one exchanged tomorrow for another 2 foot one. It makes it more manageable, and this way we can take them to the cottage when we go for vacation.

After the ramps came my mom and I went to Kohl's. It was really nice to get out of the house finally. I got dressed in clothes, as opposed to just nightgowns. Let me tell you, getting dressed makes you feel so much better.

Another big accomplishment, I skipped one of my pills. I'm hoping to be completely off my pain medicine by the end of this week. I think I'm going to try skipping the 2:30 AM pill too and see how that goes, maybe even the 6:30 AM. Then just take the 10:30 AM one and see how I do for the day. It would be nice if I could just do two tomorrow, morning and right before bed. We'll see how it goes.

Headaches

On Saturday I started having a really terrible headache. It made me nauseous and everything, just about the worst headache I've ever had. We called my surgeon's office to see if it was some sort of reaction from my medicine, or from the anesthetic during surgery. It turns out that I was getting too much medicine and that was causing the migraine. I decreased my medicine down from three pills to one and eventually started feeling better. By Sunday my headache was completely gone, and thank goodness for that!

As long as I don't have another headache like that I'm doing really well. My pain is manageable and I'm using the CPM machine as much as I can. I'm finding that the more I use it the better I feel. I use it almost every time I'm laying down because I find it more comfortable, and I always use it at night. I've even started to increase the amount it bends my hip, I'm up to 52 degrees now.

Somehow last night when I was sleeping I pulled my leg out of my CPM machine. I have no idea how I did this because my leg gets strapped into the machine when it's on. When I woke up my leg was out of the machine, but the straps were still buckled and everything which means I pulled my leg out with out undoing the straps... interesting.

CPM Machine

This is the CPM machine I had in the hospital, I have one at home with me now. It bends my leg at my knee to prevent scar tissue from forming around my hip. I really like it, it makes my hip feel better. I even sleep better with it on becasue I can't move my hip around so much when it's on.

Home Sweet Home

My surgery went really well, like I said and my surgeon thinks that my next one is going to go better than expected.

I had a spinal tap put in in pre-op, which I don't remember at all. They put medicine in through my IV which I remember, but after that I was out.

I woke up fairly comfortable in PACU (post-op). After I was more awake, my mom and dad came in. I don't remember a whole lot from PACU because I was still pretty out of it. When I was ready to go up to my room they called the transport people. The guy came and got me, but when we got to the elevator my bed wouldn't fit in. I had bars all over my hospital bed, kind of like a canopy, so that I could lift myself up, but they stuck out too long so the elevator wouldn't close. As you could imagine, coming right out of surgery it wasn't very plesant to move let alone have someone push and pull on my bed to try to make it fit. So he took me to another elevator which was bigger, the only trouble was that this elevator was on the other side of the hospital. When I finally got to my room, about 20 minutes later, I was in more pain, but they got it calmed down and then I just sleep for a while.

It seemed like everytime I woke up someone was bringing me another plate of food. I hadn't eatten anything since before surgery and the first thing they tried to give me was spaghetti. Does that sound like a good idea to you? Well I didn't think so. Needless to say I skipped out on the spaghetti.

I had a pretty good night in the hospital last night. The morning didn't go so well though. Physical therapy came in the morning to get me up and walking. I thought I was ready so they got me up and I went to the bathroom (they took out my catheter). By the time I got to the bathroom I was really nausous and dizzy. Needless to say it was time to go back to bed. Once I got back to bed I feelt a lot better and took a nice long nap.

When I woke up I felt a ton better and I was ready to go home. PT came in again and I successfully went to the bathroom and practiced walking. The nurse changed my dressing, which looked pretty good. My hip isn't bruised or anything. Then I was ready to go home.

The car ride home was a little stressful because every turn and little bump made my hip hurt more. Once I got home and got into my bed I was much more comfortable.

I'm defiantly glad to be home and I'm having pretty good pain mangement.

Scope

Scope went really well today, better than expected. My surgeon think my next surgery will be better than expexted as well.

I'm staying in the hospital untill tomorrow (Friday) late mornig, at least thats the plan so far. I have a catheter in, so I'm pretty much bedridden, which I'm fine with and it makes things easier and less painful. I've been pretty nauseous, so I haven't eatten much today.

I'll give everyone a more detailed report later when I'm more with it.

Ready To Go!

I'm all done with school, so now I'm full force ready for surgery.

Insurance issues are all resolved, thank goodness.

I've got almost everything moved downstairs, for the scope. I'm planning on being about to go upstairs by about day 3 after my scope. The scope isn't going to be a big deal whatsoever, so I'm not worried about stairs with that. However, for the osteotomy /z-plastia I'm planning on not being able to go upstairs for 6 weeks or so. Being 100% non-weight bearing and plus having an already unstable "good" hip, I just feel like is setting myself up for disaster to try to tackle stairs. I'm trying to avoid making this harder, and I can't even begin to imagine if I dislocated my left hip while having the right recover, so I’m just going to stay away from the stairs.

My aunt is coming to stay with me after my scope because my brother is graduating in Cinci. I’m sad I can’t see him graduate, but I'm looking forward to seeing my aunt and it will add some fun to recovering.

I’m getting things set up to be able to have a hospital bed at home. I’m not going to have it here for the scope, but defiantly for the osteotomy/ z-plastia. After the second surgery I won’t be able to sit down anywhere low, the couch is even going to be too low, so the hospital bed will pretty much be my only option. There are some hospital recliners that I could get, but I haven’t decided weather or not I’m going to get that. I’ll get ramps installed so that I can go inside and outside by myself. For my last surgery when I was in a wheel chair my dad would pick the wheelchair up over the step, in and out of the house. Let me tell you that was nerve racking! I’m also getting a tray for my wheelchair and hopefully a bed try because I won’t want to or be able to put anything on my lap.

I have a few extra things to do around the house, but for the most part everything is set to go. I’m going to enjoy my next two days of summer while I can still move around freely.

:)

One Week!

I can't believe my scope is only in a week. I feel like time has flown by.

I know most people would be nervous at this point, but I know I'm ready and I know this is the right thing for me. It's exiciting to think that my hip issues (the right hip at least) are soon going to be no more. I'm not expecting to be able to run a marathon, or play soccer, but I'm ready to be able to run around with my friends and not have to constantly be thinking about how something is going to effect my hips. I'm ready to not have to worry about going up and down steps, and most of all I'm ready to live painfree (or at least live with decreased pain) !

Blood...Check!

I donated my last unit of blood last night. (I did two all together) My hemoglobin droped about 1.5 which isn't terriable, but I have to make sure I load up on iron. I have to keep it above 12 (it was 13.3 before I gave blood this last time) inorder to be able to have surgery.

Cream of Wheat here I come!

P.S. Thank you for all the good wishes, it really means a lot to me.

Pre-op Appt

I just had my pre-op appt today and everything seems like it's all lined up.

We're working out an insurance issue. My insurance company denied coverage for the surgeries, but my surgeon isn't concerned. They are going to resubmit the claim and he's pretty sure they will end up covering it when they make a coding change on my paper work.

I'm getting ready to donate 2 pints of my own blood, which I'll use if I need to have a transfusion post-op. I have to do one this week and one next week, so I'm hoping they don't have any trouble getting me in quickly. I have to make sure I have time to resupply so that I'm not weak for my first surgery.

I feel ready now for surgery. It seems like this is the right thing to do now and I'm exicted to finally fix my hip problems. I have total confidence in Dr. Ellis and I'm sure he's going to take good care of my hips.

Welcome

Hello everyone and welcome to my blog. I'm am scheduled to have surgery this June and I want this to be a place where I can share my experiences, as well as an easy place for my friends, family, and fellow hip chicks to see how I am doing.

Here's a little bit of background info about me.

1. Winter 2005 - Appendectomy
2. Summer 2005- Bilateral Foot Surgery
3. Winter 2007/2008- Left Knee Reconstruction (this included tightening of my patella tendon, as well as surrounding tissues and ligaments)
4. Fall 2008- Right Knee Reconstruction (identical to left knee reconstruction)
5. Winter 2009/2010- Left Knee Reconstruction (this included patella osteotomy, moving patella tendon to adjust the q-angle, and replacement of MPFL with a cadaver ligament, as well as tightening of surroundings)

Needless to say I'm unfortunately experienced when it comes to surgery. I also have a connective tissue disorder, Ehlers-Danlos Syndrome (EDS) which makes my joints, ligaments, and tendons extra laxed which is the bases of my orthopedic issues.

After almost three years of putting up with major hip instability, as well as significant pain I have finally decided to have hip surgery. As all of the conventional treatments (PT, acupuncture, and pain medicine) have failed me, surgery is pretty much my only other option at this point. This June I am scheduled to have two separate hips surgeries. In the first surgery my surgeon will fix a labrum tear and look at my hip joint to see what he will be dealing with. Two weeks later, he will perform a pelvic osteotomy as well as z-plastia (lengthening of the IT-Band), which will hopefully correct all of my hip issues. This surgery will require me to be non weight bearing for 6 weeks post op. Because of the instability in my other hip I will have to be in a wheelchair for this time.

I'm exicted to get the surgery over with and hopefully fix my hip issues. I can't imagine what my life will be like without having to deal with my hips, I'm so ready to find out!