Clicking Clavicle

My left shoulder continues to be unstable. I'm trying to really hammer my shoulder these next few weeks so that we can see if PT can and would be effective enough to keep my shoulder in place and avoid an operative fix. My shoulder doesn't seem to be getting much stronger. I've been getting more discomfort after doing exercises, so I'm now just focusing on a few simple exercises which will hopefully avoid irritating my shoulder more.

Ever since my dislocation (about 3 weeks ago) it felt like my clavicle was moving around, but since my shoulder was so generally sore it was hard for me to tell exactly what was going on. Now that my shoulder has calmed down from the trauma of a dislocation, it's more clear; my clavicle is moving. Yesterday in PT it was trial and error to try to isolate my movements and instability to see what was going on. It seems that when I have downward pressure (when my PT would push down on my collar bone) there is much less movement and it makes my shoulder feel more stable. To try to limit some of the movement my PT taped my shoulder with McConnell tape (similar to Kinesio) to try to put pressure on my clavicle and avoid excessive movement. I also have foam wedges which I tape to my shoulder to put even more pressure on my clavicle and take up the space that is created around my clavicle when I move my arm.

We'll see how this works these next few days. I'm going to PT twice a week now so that we can see quickly if I'm getting more stable, or able to gain more strength.

You Win Some, You Lose Some

Let's be honest, not every doctor is the best, and as an EDS patient, having a good doctor doesn't just mean finding the most talented one. I need a doctor who is going to take time to help develop a plan that makes sense for me. They have to be curious because chances are they've never had a similar case. Most importantly they have to be willing to learn about EDS, because again chances are they haven't seen many patients with EDS.

My favorite doctors, the ones who have truly changed my life, are these kinds of doctors. Maybe they aren't the best, most talented, nationally recognized doctors on the plant, but they are the best doctors for me because they know what they don't know and they're not afraid to say things like, "Madeline, everything about you petrifies me," (which is what my hip surgeon said to me the last time I saw him in clinic before having surgery when we were talking about concerning complications post-op). For many people things like this would make them worried, but it's comforting to me because he's not afraid to be honest and it shows that he understands EDS and how un-expecting treating EDS is.

It takes time to find the right fit with a doctor. Shoulder doctor attempt number one was this afternoon; I saw a shoulder specialist at my Sports Medicine office. Nothing against him and his practice, but he isn't the doctor for me. He hasn't seen many patients like me, and he didn't seem interested in my case or in learning about EDS.

I'm looking into who else I can see for my shoulder, and hoping my PT and my EDS specialist will have some good advise. In the mean time, I'm out of the sling. Being out of the sling is a good thing, but it also means that using my arm more makes a reoccurring dislocation more likely, which of course I'd like to avoid. That being said, being out of the sling is a good thing because it will limit any more atrophy from occurring and hopefully help stabilize my shoulder with more strength from performing daily activities.

Short term goal, keep my shoulder (and all my other joints) in place.

Unlucky Shoulder

Last Wednesday my left shoulder decided to go it's own way, it dislocated but luckily I was able to pop it right back into place. I had a PT appointment to pick up my orthotics on Thursday so I had my PT look at it when I was in. He was a little concerned with how it looked so we had one of my doctor's PA look at it. I got x-rays so we could be sure it had relocated properly. Everything looked fine on my x-rays, so she had me wear a sling for support.

Thursday night and Friday morning my arm got really numb/tingly so I was sent to the ER to double check everything and make sure I wasn't having permanent nerve damage. After a 5 hour expedition, we found out that everything was fine nerve wise. It was, and is clear that my shoulder is extremely unstable and seems to be shifting a little more each day.

I'm scheduled for an MRI Arthrogram this Wednesday and then I'm going to see a shoulder specialist next Tuesday. Until then I'm supposed to be in the sling all the time and avoid using my arm, which is easy because the more I use it the more discomfort I experience.

In sight of this unfortunate event, I'm very happy and feeling reassured about my college decision (deciding to go to school closer to all my medical people). I never wanted my college decision to weigh solely on EDS and the possibility of having to have surgery at some point over the next 4 years, but I knew I needed to be realistic. I don't live my life in fear, but I have to know that certain activities are harder for my body to handle. Things really worked out perfectly for me. I was able to find a school that had the best program for my major, was small and would be doable walking to class and such, and that had a close location to my medical team so I continue with treatments and not have to start over will a completely new team. Last week showed me that thinking ahead was the right thing to do, and I'm really glad that I did.

Back, Shoulder and Newness

Let's start with newness. New location. I see I've failed to include here that I've started and important chapter in life, college. I'm successfully moved in and have started class. New inserts. A couple weeks ago I was fitted for a new pair of orthotics at PT. The goal was to make new ones that I hopefully wouldn't hate as much as my last pair. They're in, now all I need to do is set up a time to pick them up and make sure they fit well. I'm optimistic about them, and hoping that they will help keep my right knee more inline and more pain free.

Unfortunately, carrying heavy text books around campus and climbing into a bed that is unnaturally high (don't worry mom, I'm getting it lowered soon...I promise) is taking a tole on my shoulders. I've been waking up more with shoulder pain, and the feeling that my shoulder isn't staying in place as well as it should. I'm hoping that hammering my exercises and trying to limit the stress to my shoulders will calm this down. Fingers crossed!

The back pain is back. It had gone away for a little bit, or at least gotten a lot better, but now it's full swing again. The more I walk around, the worse my back gets because of the movement I have in my SI joints. Unfortunately, I am walking much more than I was at home. I've been trying to counteract that with doing my back stretches, using my heating pad and trying to not overdue things.

I have to say, when I was thinking about the transition to college at this time, last year I never would have thought things would be going this smoothly. I don't have any hip problems. My knee issues are minor, and not causing any damage. And other than my back pain returning and the shifting shoulders, I don't have any new developments causing me issues. I think that is something to be happy about.

Keep calm, and carry on.

Knee News

I got some very good news at the Cleveland Clinic, my meniscus isn't torn. I have developed a bursa where my MPFL graft was anchored on the inside of my knee. My surgeon thought that a cortisone shot wouldn't be as beneficial in my case because my pain is too general. Basically, all I need to do is mange my pain. Ice my knee, and not over do things. It's really nice and comforting to know that my knee looks really well and that this pain isn't doing any damage, which is what everyone was worried about. I occasionally have discomfort under my knee cap, which isn't doing any damage now, but that is pain that I have to respect and not push through.

I'm excited to be able to move in the direction of actually working out again.

Not so Great Knee

I went to Cleveland at the beginning of this week to see my knee guy. I had been having some odd knee discomfort the past couple months that just didn't seem right to me. At my 4 mouth check up he decided that it was too early to decide if this was something to worry about, or if it could just be something that would go away. Typically, when you have surgery it's normal to have some weird sensations early on post operatively. He decide to wait until I was 6 months out to decide if it was something we should look into more.

Here I am 6 months out now, and my knee pain has gotten worse and has really limited me in PT. So, he wanted me to get an MRI to see if I tore my meniscus or have a bursa (inflammation bubble) where they anchored my MPFL (ligament on the inside of the knee) graft. The complicated thing is that because of the screw in my knee, in order to be able to see my meniscus and MPFL I need to have a high resolution MRI because my screw will create a blurred area, which would limit visibility to my meniscus and surrounding area. Luckily, I was able to get an appointment for tomorrow so I can get the special MRI and follow up with my surgeon and develop a plan for this before I move into school next week.

Keeping my finger crossed!

Overdue trip to Cincinatti

I went to Cincinatti to see my EDS doctor earlier this week. I hadn't seen him on a regular basis because I keept having surgery, so there was a lot to catch him up on. He had a lot of great advice treatment wise.

He's going to look into a gait analysis for me. The hospital where he is located recently opened a gait training lab which he has been interested in doing research with EDS patients to see if that would be beneficial. This would be different than a traditional gait analysis (study of a patient's walking and movement patterns, usually with recording the movement patterns). From what I understand, there would be a gait analysis which would be evaluated, then followed by a correction plan. The goal would be to limit compensation and create a "normal" gait. He told me that he has been interested in this, particularly with my gait (because of my pre-hip surgery gait; see videos). He is going to see if he can work with the gait lab and develop a research project using my gait.

We're going to look into possibly seeing a cardiologist for my high blood pressure. He wasn't happy with where my readings were now after being on the diuretic from my nephrologist. We're most likely going to set up a phone call between him and my nephrologist so that they can discuss the issue and develop a better plan.

He gave me a PenAgain (http://www.penagain.com/) which is a specially designed pen to limit the amount of stress to your hands while writing. I don't have a huge issue with this on a daily basis, but my hand do get fairly fatigued after prolonged writing. The little I've used it already, it seems to be comfortable and even take some pressure off of my shoulder while writing (I hold my pencil in a cave-man-like fashion, which is probably not the best thing for me).

We'll see if I can get used to the PenAgain, and give my hand a little break.

Vertebras, Echos, Birthdays & Such.

Needless to say, I've been pretty busy lately. So there's a lot to update on this past month.

I graduated. I had an echocardiogram. I was diagnosed with high blood pressure. I (and when I say I, I mean my doctor) discovered I have a sixth lower lumbar vertebrae. And, I celebrated my birthday.

Let's start vascularly. A couple months ago I went to a regular doctor's appointment and noticed that my blood pressure was a little high (140/90- Normal for me should be about 115/70). My EDS specialist said to track it over a month and check in with my primary care doctor. So I did just that, and my bloop pressure (BP) stayed pretty consistently high. She was concerned with the numbers and the chest pain I presented with so she sent me to a nephrologist (kidney doctor- they see all blood pressure issues because most of the time high BP is related to the kidneys, unless it's thought to be genetic). He agreed that we needed to get my BP readings lower, so he put me on a diuretic (water pill) to try to lower it. His diagnosis is that it is genetic and that this will help lower my pressure, but if over this next month my BP doesn't go down then it is most likely kidney related and we'll investigate that with some kidney tests. I've been having some unusual chest pain, but he said to just watch it and if it changes we'll look into that more as well.

After I saw him I had an echocardiogram (echo- special ultrasound of the heart) just to make sure there wasn't something else going on. Everything was normal. I do have minor regurgitation in one valve, but that is completely common and there isn't anything we need to do about that.

Now, onto the back. My PT wanted me to see someone and have x-rays for my back to make sure there wasn't something else going on, he was a little concerned I was going to get a stress fracture. So, I saw one of my sports medicine doctors who looked at my back and agreed that it was just SI joint pain, which there isn't a whole lot of treatment for. But, he also wanted to get x-rays just to cover everything.

After looking at my x-rays for quite some time in the hallway, he came into the room with a slightly puzzled and surprised look on his face. Apparently I have an extra lower lumbar vertebrae. Now, this was slightly comical for us because he is the same doctor who discovered I had an extra navicular bone in my foot several years ago which was resulting in severe foot pain and I later had to have removed.

Anyway, he thinks that the extra vertebrae is probably contributing to my back pain, but not the main culprit. So, back to more PT I go to strengthen my core to take some of the work load off of my back and hopefully be able to relieve some of my back pain.

Back & Blood Pressure

This has been a very busy past couple weeks!

My back continues to get worse. It's now constantly bothering me and I haven't really found anything that relieves it. We're backing down a lot in PT to try to allow my back to calm down, but it's hard to back down too much because the rest of my body needs to strengthen to keep up with my recovery. My PT has been doing some manuel work to try to relieve my SI joints (lower back) and re-align things. That seems to be helping a little bit.

Now, for a totally different, non-joint related topic...high blood pressure.

I've discovered that I've been having high blood pressure. Right now I'm keeping a log of my BP, as we try to figure out what's going on. The interesting thing with my having high blood pressure is that EDS patients usually have low blood pressure if anything. The systolic blood pressure (bigger, first number in a BP reading) deals with the elasticity in your vessels. Having EDS, there is thought to be more elasticity than normal, that's the problem with EDS things are too loose. Well, my BP readings don't match that thinking. I'm going to see my family doctor to see if we can figure this out.

Minus the back and BP, I'm feeling really pretty good. My knees and hips are pretty much right on track. The original goal was to stop with PT this summer, so we're hoping I can stay on that track.

May

An update is long overdue.

First of all I've been doing pretty well. Still going to PT twice a week. My quad is improving and I'm finally able to gain some strength. I'm still having significant back discomfort which is limiting me in PT. I'm focusing more on core strength to stabilize and hopefully help calm down my back issues.

It took a spill the other day, falling and landing with almost all of my weight on my knee. The good news is that my knee stayed in place and everything, but I'm having some pain posterior to my knee cap (patella tendon insertion area). I'm surprised with how good I still feel considering the fall.

I'm still trucking along in PT and will continue to do so until I'm able to be more active. My therapist thinks I might be able to be done with PT by this summer, so we'll see.

On an EDS note..
This month is Ehlers-Danlos Syndrome awareness month! I hope everyone reading this blog knows a thing or two about EDS now. But, in case you don't, or just need a reminder; EDS is a rare connective tissue disorder, dealing with a collagen dysfunction. Collagen is in just about everything in your body; bones, ligaments, tendons, blood vessels, organs and skin. EDS causes hypermobile and unstable joints, fragile blood vessels and organs, as well as heart complications. There is no cure for EDS and no specialized treatment. Most doctors don't know about EDS or have never seen a patient with EDS before.

The EDS National Foundation is working on more and more research, especially with the vascular components of EDS. It's interesting to see even in the three years since I've been diagnosed how much more they've learned and how many more research projects are going on today.

My goal as a patient with EDS is just to simply spread the word. If I can teach just one person, or make just one more medical professional aware of EDS that's all that matters. And even more importantly, if I would be to prevent just one patient from going through the long drawn out journey that I had to go through to get diagnosed by simply telling my story, then that's just what I'm going to do.

Cleveland Update

We went to Cleveland today, and all is well. My knee (bone-osteotomy wise) is healing as it should be and looks really good. My need is tracking clinically well and is not hyper-mobile. My surgeon thinks I'm not going to have any problems with either knee down the road. Since the majority of my reconstruction was boney work it will stay permanently, where as soft tissue reconstruction combined with my EDS will overtime loosen up and often need re-worked. He doesn't think that will be the case. We're going to be realistically optimistic about my knees in hoping that this will be the end of reconstructions, knee wise that is.

The goal is to be able to start being more physically active this summer, or at least as much as the rest of my body allows me to. Once I get to the point where I'm able to do more physically it's going to be extremely important for me to maintain that to avoid other issues down the road. Hopefully, I'll be able to start biking as my main source of exercise. That's something which is safe for my knees and hips, but will also not flare up my shoulders and hopefully not my back either. Swimming is another option, but that causes problems with my shoulders, so I'll most likely have to avoid that. My shoulders aren't a huge problem yet, but they defiantly have major instability which I would like to avoid increasing for as long as possible.

So, the goal for this summer is to be able to bike on a regular basis.

Physical Therapy Update

I went to PT again today (I'm doing twice a week now). It seems like I'm starting to plateau and having trouble gain quad strength.

This week I've been noticing some clicking/popping when I'm walking, but I don't notice it when I'm doing non-weight bearing exercises. Since I only notice it when I'm walking, it's not something to be too concerned about.

Today I got an electrotherapy machine (stim unit) to use at home. The goal with this is to try to turn on my quad, and in the end, gain more strength. I have some exercise that I'm going to use it with, as well as normal quad sets, so we'll see if it helps me gain more strength.

I'm going to start pushing flexion more since my incision is almost completely closed up now. My incision troubles have defiantly set me back. Hopefully, with the stim unit and focusing on gaining my range of motion I'll start to see more progress again.

I'm going to Cleveland tomorrow for a check-up. I'll get new x-rays to make sure my knee (bone work especially) is healing as it should be. They'll also look at my incision and make sure it's continuing to make progress and closing up nicely.

No More Brace.

No more brace, well at least not 100% of the time anymore. I stopped wearing the brace around the house and now I'm allowed to go out without it on. It's nice because my knee brace is gigantic and after almost 7 weeks of it, I'm sick of it. Since I haven't been walking much without my brace, I think I'm going to wear it at school for the next few days just until I feel more stable and until I can walk a little better. I walk much slower without my brace on. Also, wearing the brace is not only good for me, but reminds everyone around me of my knee. So I think it would be smart to keep it on for longer walking trips or more crowded areas, like school. I've come this far, and I'm not going to let not wearing my brace make me take steps back.

Good news PT wise. This past week I went to PT two days in a row, just because that's how scheduling worked out. I think it really helped, weather it was the fact I went two days back to back or if it's just a coincidence. My right (operative side) quad and left glute are really sore. Now, I imagine the majority who are reading this are thinking that's not a good thing. You're right, it's a great thing. Having sore muscles means that they're finally turning back on, it means that the new exercises I've been working on are actually targeting the correct muscle groups. It's a good step in the right direction.

Incision and Physical Therapy Update

My incision is looking much better, about half the size it was last week. I still have a couple more days on the antibiotics, which I'm looking forward to finishing because they make me very nauseous whenever I eat anything. I'm still going to continue my wet-dry dressing twice a day. I'm going to have it checked again next Thursday and if it looks better either stop the dressings completely, or go down to only once a day.

Until my incision closes up more, PT is a little difficult because I'm trying to avoid flexion. I was having pain under my patella (kneecap) when I did long arc quads (extending my leg up from sitting, bent position with a weight) and even slight discomfort with a regular quad set. Although I would be perfectly fine working through the pain, I have to be really careful not to. Pain under the patella, is essentially pain from the osteotomy to deepen the grove my patella sits in. If I were to push through that then I would most likely be destructing that reconstruction and causing even more issues. So, that's going to be avoided.

The challenge in PT right now is to figure out how to isolate my quad and glutes (mostly on the left side; non-operative side) and work on strengthening. There are many many exercises which target those muscles, but because of how my body is I'm always compensating. So, we have to find one where I can't cheat and where I can work until those muscles fatigue, as opposed to every other muscle and joint around.

EDS and Physical Therapy

One of the hardest things with EDS and it's effects on my body is physical therapy. Even since before I started having surgery after surgery my body would compensate for the lack of stability in my joints. Because of that, a big part of rehab for me is re-learning how to use my body. For example, when I'm doing an exercise that is supposed to work my glutes (this is a big issue for me) I rarely feel a traditional exercise in the muscle group that is supposed to be working, I'll feel it almost everywhere else, my calves, my back and especially my foot if it's a weight bearing exercise. Physical therapy for me, takes a lot of creativity and a lot of extra thought on just how to isolate my muscle groups that need strengthened and how to work them until fatigue. Most importantly, how to do that without making another part of my body suffer, like my back which often holds back which exercises I can do because of the stress I put on my back to compensate for everything else.

Yesterday my physical therapist told me he was writing a report on the top 10 most challenging disorders to work with in physical therapy. Because of me and lovely EDS, he added Ehlers-Danlos Syndrome to that list.

Today I have multiple appointments. I'm going to my PA to have my incision checked, then off to physical therapy again. Then I'm going to my compounding pharmacist to figure out some abnormal levels I have from when I got a ton of blood work done before my December hip surgery.

Incision Update

My incision is looking better, it's not great, but it's better than what it was a week ago. I'm still on antibiotics, which make me nauseous every time I eat, but they seem to be doing their job with the infection. My incision hasn't closed up anymore, but there isn't as much granulated tissue (which was preventing my incision from closing), and it doesn't seem to be as oozy. Both good things. When I change my dressing there is a little bit of blood, which is a good thing and shows signs that it's healing. Before there wasn't really any blood, just excess fluid.

I'm going to PT later today and then again tomorrow. Also, tomorrow I go to see my old knee surgeon's PA again to have my incision checked and make sure it's moving in the right direction.

Angry Incision

I my PA today, here in town. She put me on super antibiotics which treat a wide spread of infections. She doesn't think I have a huge infection, or something like MRSA, but this will for sure clear anything up.

On top of the antibiotics I have to do a special dressing change twice a day. It's a wet-dry dressing. Basically I pour a saline solution over my incision near the problematic area. Then I let it soak in for a little then dip a wick (special, sterile, gauze-like string) into the solution and pack it lightly into and over top the open, infected part of my incision. Finally a gauze like padding goes on top and it gets wrapped with an ace bandage.

The point of this dressing is to lift up the fluid and particles so the the infection can heal, and the incision can finally properly close up. The solution makes the incision wet at first, of course, but then it dries it out which is how it helps to stop the fluid build up.

There are three other spots on my incision that aren't open or infected, but are not closed as tightly and nicely as the rest of my incision. Those are most likely due to a suture that my body rejected, so it's trying to work it's way up to the surface. I just have to watch for that and pull it up if it comes up enough.

The incision is defiantly something to watch and it's good that I got in so soon, but it's not a HUGE problem. This treatment should clean up my incision nicely. I'm going to be seen back in the office next week just to make sure everything is moving along as necessarily.

Incision Troubles...Again

I thought my incision was clearing up, but it's not looking like that. I woke up yesterday morning and my incision had oozed all the way thorough my steri strips, gauze pad and ace bandage. Not a good sign.

By the time I go to PT (in the afternoon) it was looking better, but still not great. My PT said to call my knee surgeon and see what they thought, he thought I needed to be seen by someone to make sure it's not and infection.

I'm going to see my first knee surgeon's (he operated on bother knees, the first time; he's in town) PA (physician assistant) tomorrow. They think it's most likely a superficial infection, on the top skin layer. Since I don't feel ill and I don't have a fever it's most likely that as opposed to an underlying infection, more in my knee.

We'll see what happens tomorrow. I'll most likely be put on antibiotics and it will hopefully clear up quickly. It's important to get this cleared up, not only because having an infection isn't a good thing, but because with this open, oozy part of my incision I can't push my range of motion, and I have to hold off on several exercises to avoid popping my incision open more.

I'm on my own two feet!

I'm ditching the wheelchair, ditching the crutches. I'm on my own two feet now.

This weekend I started walking without the crutches, in my brace, locked out. It's not as sore anymore, and I pretty much don't having any pain now. I've stopped using the wheelchair at school, which is going well.

I'm starting to get more back pain. I've had off and on SI joint (lower back, it's a joint that not supposed to actually move. Mine does which is why I have pain) pain for the past couple years. Recently, my SI joint pain started to come back as well as more general back pain bilaterally along my spine. Sitting in the wheelchair all day defiantly made the pain worse, which was one reason I was ready to ditch that thing. My back pain has gotten worse, but I think it would be worse than it is not if I was still in the wheelchair all day. I have to really work on my core because I arch my back out every chance I get to compensate. We're going to continue to watch it closely to try to prevent any damage.

Yesterday was 4 weeks post-op exactly. Between the next couple weeks I'll be able to start driving again. I need more range of motion and I need more quad strength before I can start.

Even with the back issues, which I'm used to, I'm very happy with how my recovery is going. My knee feel pretty good and I know when I get more quad strength that will only improve.

I'm Vertical

Although I'm still using my wheelchair at school, other than that, I'm vertical. I've been leaving my wheelchair at school, then using crutches to get into school. I used crutches when I went to PT on Thursday. I'm not a fan of crutches, whatsoever, and lets be honest, the wheelchair is even lower down on that list, so yesterday I started just walking in my brace without them. My surgeon said that if I have the brace on and locked, I can't do any damage.

My knee is still sore and there is still a lot of strength I need to gain, but I don't have any true pain anymore. I haven't taken my pain medicine since Tuesday, I've been taking Advil occasionally, but no more than twice a day. It feels really good to get out of the wheelchair and to be able to ditch the crutches, at least around the house. Being able to bear weight through my leg will also help me gain strength in my quad, critical for my recovery.

My incision has been slightly problematic, but nothing huge. Like I said when I went to Cleveland, there is a part of my incision that wasn't completely closed so I'm keeping a steri strip over it to keep it in place while it heals. Slowly, the top part of my incision started to seem like it was doing the same thing and has been a little juicy. My physical therapist had me put more steri strips over the problematic areas and said to watch it. Most likely, it's just taking a little longer to fully close and be healed. There is a chance that it could be getting infected, so if I start feeling sick that would most likely mean that's what's going on. If so, I would just go on antibiotics and it would clear its self up. Because of this I'm not going to push my flexion exercises (range of motion, bending my knee) too much to avoid completely opening the incision.

Post-Op Appointment

I went to Cleveland today for my post-op appointment, I'm 3 weeks post-op now.

I had to have some rather unpleasant x-rays before my appointment so that they could see how my bones (from the osteotomies- cutting bone) were healing. Usually x-rays are a painless easy thing to have done, well not this one. For two of my x-rays I had to bend my knee at about 30 degrees, which shouldn't have been a problem since that's about where I am right now, but the x-ray tech was, for lack of a better word dumb and oblivious to the fact that I had just had surgery and bending my knee aggressively was not pleasant. I was laying on my side and needed to bend me knee, laying on my side. I didn't have enough strength to bend it myself in that position, so she had to do it. Well instead of doing it nice and slowly, she just basically jams my knee as hard as she can to try to bend it. Of course, then I get completely still because it's extremely uncomfortable. After several attempts to push my knee farther than comfortable, as I'm about ready to jump off the table, she brings in my surgeons PA (physician's assistant) who just simply gently and slowly bends my knee, no problem. Imagine that!

My actual appointment went much better. I got my sutures out, my incision looks pretty good. There is one spot in the middle of the incision that isn't healed quite as well as it needs to be. It's not completely open, but it's not completely closed, so I just have to keep a steri strip over it to secure it, no big deal. I'm allowed to take a bath now, which I'm looking forward to. It's one of those little things that makes you feel like you're really getting back into things, sponge baths and washing my hair in the sink just isn't the same.

I'm allowed to bear weight with my brace on and in the locked position (it's a full leg hinge brace). With the brace on and locked, there isn't any way I can do any damage. In 3 more weeks I'll be able to get out of the brace completely and walk without it. I have no more flexion, range of motion restrictions.

My recovery is right where it should be for 3 weeks post-op. I'm going to start short distance (around the house) walking with my crutches, but I'll still use the wheelchair for longer distances and at school. It doesn't hurt to put weight through my leg, but it's difficult to pick my leg up to follow through as I take a step because I'm still weak.

Things are going very well and I'm looking forward to being vertical.

A Good Day

Today was an eventful day for, the not leave the house and lay in bed for 3 weeks, me. Needless to say, the worst is over.

First of all I went to school for the first time today. I did a half day, 4 classes, and then went home at noon. I was really tired by the time I got home, but I felt good. It feels good to start to get back into the swing of life. Then I went to PT in the afternoon, where I had some great progress.

My range of motion (ROM, or flexion) is at 34 degrees, double what it was on Friday (16 degrees). My quad is firing very well, extremely good sign for me with my usual quad troubles. I was able to do multiple sets of strong straight leg raises, first time I've done those post-op. I also did some side lying leg raises (laterally).

I go to Cleveland tomorrow to see my surgeon. My PT thinks he's going to allow me to bear some weight, which is exciting. So far today I've only taken my pain medicine once (when I got home from school today), most likely I'll take another before I go to bed and that will be it. Hopefully I won't need them too much longer.

Overall, things are finally turning the corner. I'm making progress, my pain is getting better and getting around is a little easier. Looking forward to walking, hopefully very soon.

Physical Therapy

I went to PT today and things went pretty well.

There's not a whole lot I can do now, but I was able to do what I needed to do. I did some quad sets, which my therapist was surprised I had as much strength as I did. It wasn't great, and it's defiantly atrophied from surgery, but since I usually have a hard time turning on my quad post-op it's a good sign. I also did some glute sets and TAs (lower ab contractions) to keep up my core strength. Lastly, I did some flexion to work on my range of motion (ROM). This was the first time that I bent my knee at all. It wasn't painful necessarily, but my knee is very tight since I haven't really moved it for two and a half weeks. I was able to get to 16 degrees of flexion, my restriction is at 30 degrees right now. Because of EDS I don't have to push the flexion too much because being loose is not an issue for me, even if I wanted to I don't tighten up.

It seems like I'm finally turning the corner. I'm still on my medicine every 5 hours, and at least today, I'm not able to stretch that out another hour. It's getting a little easier to move around, although I still need a lot of help and I can't really be left alone yet, I can see the light at the end of the tunnel.

Medicine Update

I've been trying, unsuccessfully, to cut back on my medicine. The other night I skipped my 2:30 AM pills, which didn't turn out so well the next morning. I was in a lot of pain and wasn't able to get much sleep.

My pharmacists recommended extending the amount of time between doses before skipping one completely. Yesterday afternoon and all day today I've been able to spread out my medicine an extra hour (5 hours apart now). It seems to be working well. I'm still in some pain, but it's manageable and I'm still comfortable.

Unfortunately, I'm still not very mobile. Hopefully by the end of the week things will change and I'll be able to move around better. The new goal is to be able to go back to school next week.

What Happened in Surgery

Going into surgery we knew there were three possible reconstructions that I would need, but my surgeon didn't know what he would do exactly until I was in surgery. He ended up doing all three reconstructions.

The first, which he was pretty sure he was going to do, MPFL replacement. My medial patella femoral ligament was replaced with a cadaver tendon.



The second, osteotomy of the tibia. The goal of this is to deepen the grove that the patella (kneecap) sits in. This can be done without using bone to build up the grove, in those cases a wedge is used to build up the grove instead. On my left knee (December 2009) my surgeon used a wedge, but for this knee he used my bone of my tibia to build up the grove.

The third, adjustment of the Q-Angle. The Q-Angle is the angle between the tibial tubercle (right under the kneecap on the tibia) to the middle of the patella and the middle of the patella to the ASIS (hip)

The Q-Angle:



The Surgical Fix:

No PT For Me

I was supposed to go to physical therapy today, but we decided it was just going to be a bad experience. Since just getting up to go to the bathroom is still such a task and painful, going all the way to PT was not going to be good. Plus, I still feel weak, like I'm on the verge of passing out when I get up, so being up for that long makes passing out for real a lot more likely situation.

My pain is still the same, and obviously moving is still just as difficult. I'm supposed to be backing down on the ice machine (I have a machine that circulates new cold water to my knee, it hooks up to a cooler type thing with a water/ice mixture) but when the ice is off my knee gets a very hot feeling inside. Overusing the ice can delay superficial healing, which means my incision. I had problems with that on my other knee last year, it really isn't a huge problem, I just had to keep my stitches in longer on one part of my incision. That can also give you a bigger scar, but because of EDS my scars are never perfect anyways. So, I'm working on backing off on the ice, but it's not a major priority, if I can get some pain relief from it then I'll use it. I've been turning it off at night, and saving it for the day which seems to be working.

Incision

Today we unwrapped my leg. My incision looks good. Unwrapping my leg was a little uncomfortable, but it felt good for it to get some air. We took off the extra gauze that was on my knee. Right now there is just one layer of padding, a small wrap and a large ace bandage which goes all the way down my leg covering my knee.

Same Old, Same Old

Unfortunately, I'm pretty much doing the same as I was last week. My mom moved my bed into the family room so that I can watch TV and be with everyone more. I'm still having significant pain, and it gets worse the more I move so I pretty much stay in bed all the time. I'm not ready to start decreasing my pain medicine yet, well see how I do the rest of the week. Apparently, I move my leg and jump in my sleep, so I often wake up in more pain.

The plan was to try to go back to school sometime next week, hopefully I start to turn the corner this week and can start going back to school next week.

Update

There's not much to update on. My pain is still the same and it's still quite uncomfortable to move. I haven't gotten out of bed at all today, which isn't such a bad thing. I keep my leg elevated, but after a while (a couple hours) it gets uncomfortable in the same position, so someone has to move it around for me. I've been able to drink more today, which is good to try avoiding passing out. I've been able to eat a little bit, some crackers and soup mainly but not "real food" yet. As long as I can keep on top of staying hydrated we don't have to be too concerned with the eating part.

I'm going to see my PT next Friday (I think) to mainly check in with the rest of my body and make sure I'm not loosing too much strength everywhere else.

Home!

I came home yesterday afternoon. Once I was in the car, the trip wasn't so bad but getting there was a little bit of another story.

We planed to leave right when it would be time for my medicine again so that I could just sleep the whole way home. My parents had started getting everything ready and were putting everything in the car. I got into my wheelchair by just lifting myself up and scooting into it while my dad held my leg up (my wheelchair was right against the bed, parallel). I've learned that that's the easiest was to transfer, rather than using the walker. I sat up in my wheelchair for a little bit because I often have problems with passing out post-op and that was the first time I got out of bed since my surgery. I was able to get into the bathroom with the walker and I was feeling tired, but still thought I could do it. I put some clean clothes on and then was going to try to stand up again and get back into the wheelchair. Then next thing I knew I was sitting down and just shaking. Luckily, my mom and dad were there. My dad was holding my leg up because it is very uncomfortable if it hangs down, and my mom was holding me up to make sure I wasn't going to tip over. Once I felt better I was able to get back into the wheelchair and then into the car and I pretty much slept the whole way home.

I'm still in quite a bit of pain and still really tired, so I'm pretty content with just laying in bed all day and moving as little as possible.

Surgery

Surgery went well. I ended up having pretty much the exact same things done as the other knee.

I'll give a more detailed update later on. Thanks for all the good wishes.

Getting Ready

I am pretty much ready to go for surgery. I have everything moved downstairs for surgery. My dad just moved my bed down this morning (I'll stay downstairs for 4-6 weeks). I finished getting all the little random things I needed. My bag is packed for Cleveland (that's where my surgery is going to be).

I'm looking forward to spending the rest of my day with my friends and having some fun before I leave (we're going up to Cleveland Sunday evening).

Right now the post-op plan is to go back to a hotel in Cleveland Monday night and stay there until Wednesday. My surgery is being done at an outpatient center so I can't be admitted, we'll see how that goes. If my pain can't be controlled and I'm having problems, then I'll be transported to main campus and admitted there. Hopefully I'll be comfortable enough to not need to be admitted.

Knee Surgery

I'm going to have right knee surgery this Monday (February 14th).

We know for sure that he will do the MPFL replacement (with cadaver tendon). We don't know exactly what else he will do, neither does he until he's in surgery. On my other knee I had an osteotomy done to deepen the grove that my knee cap sits in (bone work of my tibia). I also had my Q-angle adjusted (removing the insertion of the patella tendon on my tibia so that it becomes more aligned). Most likely, he will have to do at least one of those other things, but we won't know until I'm in surgery.

Right know we're developing a surgery plan, so I will update on that soon.

Knee Appointment

I'm going to Cleveland tomorrow to see my knee surgeon. Honestly, I would rather he just say I should have surgery now and get it over with, as opposed to making me wait until this summer. We'll see what happens. I'll update after my appointment tomorrow.

Physical Therapy

I ended up being able to go to PT on Tuesday and I'm going again this afternoon.

I'm slightly limited with my knee, but I'm able to do some exercises. It's obvious that my knee is going to hold me back as long as it is so unstable, but hopefully I can respect my knee and still gain some more strength for my hip.

Hip Appointment Update

I saw my hip surgeon yesterday, he is very impressed and happy with how my hips are doing. Honestly, I think we are all a little shocked at how well they are doing. They're like perfectly normal hips now, which I have to say is a lovely thing.

We talked about my knee and although he was bummed, he said that my hip can handle if I have to have surgery so soon. In the long run, that's good news for my knee and my hip as well.

I'm supposed to start back with PT (I haven't gone since I subluxed my knee) today, but the weather might be an issue with that. We got a huge ice storm over night and quite literally everything is closed. I'm hoping that things get better throughout the day so that I can get to PT, otherwise I'll hopefully get in another day this week.

6 Weeks Post-Op

Last Wednesday was my 6 weeks post-op date.

Today I'm going to see my hip surgeon just as a regular post-op appointment. I haven't talked about my hips much lately, but they're doing really really well. I think my surgeon is going to be very surprised and impressed with my progress. I'm able to do single leg exercises on my left side now, too! Unfortunately, the knee has limited that progress for the past week but even with the knee issues, overall I'm more functional than I was before my hip surgeries.

We'll have to discuss my knee issues and see if my hip surgeon feels that my hip is strong enough to support me through another surgery so soon.

Same Song, Second Verse.

I saw my knee surgeon, who did my original knee surgeries (about 3 years ago) today. He agreed that I need to see my other knee surgeon in Cleveland (he specializes in reoccurring patella instability, he did my left knee surgery a year ago). He also confirmed that my knee is much looses and I'm going to need a surgical fix.

I have an appointment scheduled with my Cleveland knee surgeon for February 8th. I won't know what this knee will need to have done until I see him, and until he can review my MRI (which I had done today), but I do know that it's going to be around the same thing that I had done on the other knee.

The other thing we'll have to decide is weather I have surgery now, as in before the end of February, or if I wait until school is out, as in sometime this June. There are pros and cons of both options. If I have surgery sooner then there is less possible damage to my knee because I'll be able to prevent another subluxation/dislocation. Another pro is that having surgery sooner will be able to guarantee that I'll be ready to go off to college without a problem in August. At the same time, I just had hip surgery a month and a half ago which doesn't give my body much time to recover and I will have to miss a couple weeks of school.

There is defiantly a lot to discuss with my Cleveland knee surgeon, so I'm looking forward to seeing what he has to say about all of this.

Some Not So Great News...

On Friday I went to PT and had a little knee incident, I subluxed my right knee.

I was getting ready to do an exercise on the BOSU (one side is a hard flat surface and you balance with the other side, half ball part on the ground) and my therapist was standing right in front of me. I was moving my right leg out so that I was shoulder width apart, and between moving my right leg and setting it down on the BOSU, my right knee subluxed.

Right away, I knew it wasn't a good sign and I knew that my right knee wasn't as tight as it was a year ago but I still wasn't expecting it to sublux right then. My therapist examined my knee and my patella was significantly looser than it was when I woke up that morning, not a good sign. He went to go see if my knee surgeon (he's in the same building as PT) was still in his office so that he could check my knee and decide where we should go from there. He wasn't in so I'm going to get an appointment with him as soon as possible, most likely this coming week.

Unfortunately if I have to have surgery I will probably have to go to Cleveland (where I had my most recent knee surgery, left knee). Since I have reoccuring patella instability the knee surgeron in my area (who did my first 2 knee surgeries, left and right side) hasn't felt comfortable doing the surgery that I need to re-stabilize my knee when the first surgeries he did didn't hold.

I dread having to have surgery, let alone having to have surgery in a different city but I have to do what I have to do and it's better to get it over with now than to have to deal with it down the road.

Walking!

I'm sorry I've been so bad about updating lately.

Good news is that I'm walking unaided now and I feel really great. I'm able to do stuff in PT that I haven't been able to do since before my entire hip problem started. The surgery defiantly has fixed my hip problem and I'm very happy with how things are now.

Right now I'm still going to PT twice a week, but hopefully soon I'll be able to go down to just once a week and join a gym so I can do more stuff there to help me gain more strength.

Update

Last Thursday I saw my surgeon's PA and had my sutures removed. My incision looks good and seems to be healing normally. I'm allowed to bear 30-50 pounds through my left leg now, so I've been able to use crutches around the house (much easier than the wheelchair).

Physical therapy is going well. I'm starting to work on more strengthening to get ready for when I'm allowed to start walking. My therapist has been working out my IT band, meaning, massaging my leg so that my IT band feel more relaxed. I starting using the shuttle (a leg machine) to help gain some strength in my leg while bearing a little bit of weight through my leg. Today, I was able to do some single leg strengthening on the shuttle, which is huge progress for me already. When I would do that pre-op my hip would pop out. Although it's not perfect yet, because I'm still quite weak in that leg, it's already much much better than before, a very good sign.

Today, I noticed my hip flexor (located in the front of the hip) was aggravated. When I tried to do a straight leg raise I had a lot of pressure in the front of my hip as well as pain. My PT wasn't exactly sure why it was feeling like that, so I'm just going to watch it and avoid anything that makes it worse. I only notice it when my hip is working, like moving my leg up as necessary in a leg raise.

All in all, my hip is doing very well. I'm excited to get to start bearing more weight next week (4 weeks post-op).

Post is Coming, I Promise!

I'm off to Physical Therapy now, but I promise I'll give an update hopefully later tonight.