My Journey with Ehlers-Danlos Syndrome

"On the girl's brown legs there were many small white scars. I was thinking, do those scars cover the whole of you, like the stars and the moons on your dress? I thought that would be pretty too, and I ask you right here please to agree with me that a scar is never ugly. That is what the scar makers want us to think. But you and I, we must make an agreement to defy them. We must see all scars as beauty. Okay? This will be our secret. Because take it from me, a scar does not form on the dying. A scar means, I survived."

- Little Bee by Chris Cleave

Showing posts with label Z-Plasty. Show all posts
Showing posts with label Z-Plasty. Show all posts

Tuesday, December 14, 2010

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.

Friday, July 23, 2010

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.

Monday, July 5, 2010

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.

Saturday, June 26, 2010

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.

Wednesday, June 23, 2010

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.

Sunday, May 9, 2010

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!