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

Monday, January 31, 2011

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.

Thursday, January 27, 2011

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.

Sunday, January 23, 2011

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.

Tuesday, January 4, 2011

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.