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.