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.