Time to Get Creative Again: PAO and EDS

This morning I saw my hip specialist. I had an idea of what he was going to say, and it has always been something that has been in the back of our heads as a possibility and something I would likely need down the road. It turns out that road was a little bit shorter than we once thought. 

My hip dysplasia (meaning I have a shallow hip socket, so the head of my femur does not have enough support) has become more unstable, requiring a PAO (Peri-Acetabular osteotomy). This procedure is centered around bone work to essentially rebuild my hip socket, providing more support to the ball (head of my femur) of my hip. By doing this I will be more stable, my pain will be reduced, and the amount of stress on a labrum will be reduced. I have always had borderline measurements for this procedure, but my hip has moved over the past couple years (like we thought it would) and my symptoms are more dominant. 

There is still a lot to think about and go over; that is something that EDS has taught me. Luckily, my hip surgeon is one of my very favorite people on my team, he gets EDS and takes all of my past experiences with surgeries into consideration. He realizes that I am not the textbook patient and that we always have to be a little creative with recovery and getting me to where I need to be. 

It's time to get creative and work out the logistics about how to make this surgery and four month recovery EDS friendly. 

Time for a Tune Up

Attending a holistic nursing school we are always taught to center ourselves and to take care of ourselves first, as nurses. If we are able to do that, we will be better nurses for our patients. Being a busy working college student, it can be challenging to take that advise sometimes. As the leaves are changing not only literally, but figuratively, it's time to take that advise seriously. 

As an EDS patient it can be very easy to ignore pain, especially when you are accustomed to living with a certain level of discomfort. It can sometimes be hard to tell if there is something really going on, or if it is just the normal discomforts of EDS. It can be a bit of a catch 22 sometimes. I work really hard to not allow EDS to take me down or control me. But, I am also conscious of the fact that I have put a lot of work into my body, allowing me to be where I am today, so I want to protect it and all that hard work. 

It's time to for a tune up with a couple of my favorite specialists. 

The first on the list; my right hip. This is the first hip that was operated (scope & Z-plasty of the IT Band) on. I've been having ongoing issues with my SI Joint for a very long time now. It will usually come and go for long periods of time. It's been back recently and more uncomfortable than ever. I've discussed before wether this is related to my hips or a completely separate occurrence, no one really knows. I have an appointment scheduled for next month with my hip specialist to hopefully develop a plan to gain some relief and get a better idea of what's going on. I also want confirmation that my Z-Plasty is still holding up, because my hips are been a little more mobile then they should be recently. 

I say this every time, and I'll say it again. Even with these mild issues, I am forever grateful for how together I am today. I don't think anyone would have predicted this success several years ago, and if they would have, I certainly wouldn't have believed them. EDS continues to teach me so many things not only about myself, but about everyone else as well. 

A scar does not form on the dying. A scar means, I survived. 

A Nurse To Never Forget

This year is flying by. 

I'm going to switch things up this post- I usually just update on how my body is doing and things to watch for and think about with EDS, but not today. Today I would like to share a part about how my journey is changing my life and changing how I see our medical world. 

If you don't already know, I am a nursing student (almost half way done- woo hoo!) at a holistic accredited school. When I was searching for colleges I knew that I wanted to be a nurse because of my previous medical journey and I decided that I liked the sound of having a holistic accreditation, but I wasn't exactly sure what that meant- until this year. 

Holistic nursing is about treating your patient, not the sickness or disease. It's a beautiful way of thinking and I honestly believe it creates better nurses- and I know that even more after being treated by many different nurses, the majority of whom were not holistic thinkers. One nurse always stays in the back of my head- she was my nurse after my first big knee surgery (the right knee re-reconstruction). After surgery I was in extreme pain and they were having trouble adjusting my pain pump. As my pain grew I got a migraine and was nauseous. She could have done many things- most nurses would have given me medicine to reduce my symptoms or would have pushed to get my pain pump. This nurse let the head nurse know that there was something wrong with my pump and while that problem was being taken care of she sat with me in my room at 3:00am and she gave me a massage. No one told her to do this. I didn't ask her to, my mom didn't ask her to- she just did it because she was taught to treat the patient. She stayed in my room for the majority of the night. That nurse showed me what medicine is supposed to be about. And that nurse changed my view of the entire medicine world. We are here for our patients and we must make them the center of our care in order to make people better. What that nurse did was such a simple thing, it didn't require any additional medications or supplies. Not only did she make me feel better by relaxation but she showed me that she cared. That allowed me to trust her and know that she was going to get me though that awful night. 

That is the kind of nurse I want to be. 

EDS has taught me so many things about myself as a person, but as I move forward in my education I have the pleasure of discovering all of these wonderful things that EDS has taught me about the entire medical world. 

Very Over Due Updates

Apparently, I've been a little behind in my updates.

Shoulder Update: I had originally thought that I would have shoulder this December, but I decided that I wasn't ready to do that. I know that it is something I will probably have to have done in the future, but the timing and the uncertainty of the outcome made me decided that putting it off for a little while wouldn't be such a bad idea. I'm not actively doing anything for my shoulders right now, although I have adapted how I do things on a daily basis in hopes of keeping them as stable as possible for the time being- for now that is good enough for me.

Hip Update: Two months ago I stated having some mild hip discomfort. After experiencing it for a couple weeks and knowing that something was just not right, I decided that the time, effort, and resources put into my hips to get them back to a functioning point was not worth the chance of ruining; so I made an appointment with my hip specialist. When I saw him, about a month and a half ago, he was very optimistic that this was just my hip flexor inflamed and that jumping back in PT would do the trick. We briefly talked about possibly doing injections if I came back in a month and things were not where we wanted them to be. We also briefly discussed the possibility of doing a scope down the road to fix a possible labrum tear. I took that next month and work hard at PT and was really careful regarding my movements to make sure I wasn't putting added stress on my hip.

As my hip flexor got more inflamed and continued to slip over my joint, it began rubbing on my labrum- most likely creating a tear. My SI joint (that little dip in your lower back-one on each side) began getting more fired up as my hip flexor kept getting inflamed. And as my SI kept getting fired up, because my hip flexor was inflamed and popping, the muscles on the right side of my back got really tense and filled with knots. As you can see, it was a chain reaction. We started backing off in PT and began working on relaxing my back muscles and working out the trigger points (basically, the knots). Doing that gave me relief in my back and we attempted to try to settle down my SI so that I could focus on my hip flexor and gain stability again. We couldn't find anything that would relax my SI, while gaining strength. I got an SI belt (basically a brace looking belt that sits around the lower back to put pressure on the joint to get relieve) that I wear when I'm going to be on my feet for extended times. The belt helps, but as soon as I take it off it's back to the way it was before.

I saw my hip specialist on Monday and I was expecting him to want to give me injections, which would allow me to relax my hip and gain strength in the mean time and overcome the hip flexor issues. Well, that's not exactly what he said; he thinks that I need to have a PAO (rebuild my hip joint to make it more stable) on my right hip (the problematic one). We've known that my hips are mildly dysplastic (not developed properly- in my case the socket is too shallow), but my right hip has gotten worse since the last time he did measurements on my x-rays (probably 4 years ago- before I had the Z-Plasty to correct my snapping hips). He thinks that in correcting the underlying joint issue, my hip flexor problem will be resolved. He is unsure what it will do to my SI issues since it is hard to tell if my SI is directly related to my hip discomfort, or something independent. He gave me a script for massage therapy and acupuncture just so I can try some different things and see if I can get relief, either until I'm ready to have surgery, or to get me back to a more functioning point to avoid surgery altogether.

If I do decided to have a PAO, it won't be for a couple of years and I will have a second opinion with a hip specialist in New York. But before I can do that, I need to take the time to research and to develop a solid plan for how this is going to be effected by EDS, and how it is going to effect the rest of my body.

Other than those little bumps in the road, I am doing remarkably well. I am using my winter break this year to rest, relax, research and enjoy the time with my family.

Happy Holidays!

The News

I heard back from the specialist who I saw in clinic with my EDS specialist. The news is a bit confusing and complicated. I've discussed earlier the readings of my shoulder MRI, which we had sent to this specialist as well. Shoulder MRIs can be tricky to read because there is a lot going on in the shoulder, this makes it hard to see and be precise about possible damage.

Just to summarize about the reading of this same MRI; the first shoulder surgeon who I saw thought there was no possible tear. He recommended doing more PT and things would get better. The next should surgeon I saw said it was too hard to tell if there was a tear, and that if there was one she thought it was small and that waiting for surgery would not cause any damage. The shoulder surgeon I saw most recently thinks that there is a tear and that I need to have surgery sooner rather than later.

Even with this new news, I still feel as though I am not ready to have surgery. Like I've said before, having surgery as an EDS patient is complicated. There are many possible complications that will occur, understanding that I strongly feel that surgery is absolutely the last resort and I can't come to that until my quality of life is effected on a daily basis.

I will be checking in with the second shoulder specialist I saw to get her opinion once again, but I don't think there will be any changes in our plan. (she's the one who really understands EDS and me as a patient, the other two just don't get it- see "You Win Some, You Loose Some" post explaining what makes a good doctor for EDS patients).

Keep calm and carry on.

It's Waiting Time

After my trip to my EDS specialist a couple of weeks ago, I took another trip that following week to go to a new clinic opening with my EDS specialist and a shoulder orthopedic surgeon. I'm glad I went because it's always a plus to have two heads, with different backgrounds, thinking at the same time. They were both in the room when I was being examined and they were able to bounce idea off of each other- this is the way medicine should be done, as a team. We didn't get any new information on my shoulder, but it was worth it for my EDS specialist to be able to see my shoulder from the orthopedic perspective so he can be more helpful down the road suggesting treatment methods. It is clear that eventually I will have to have surgery on my shoulder, but I'm hoping that I can get another 2 years out of it. Like I've said before, surgery is risky for EDS patients, even more so on the shoulder, and even more so with mulit-directional instability on the shoulder (basically I'm unstable at every direction). Deciding when the right time to have surgery is up to me because I'm the one who lives with it on a daily basis, and I'm not to that point yet- hopefully I won't be to that point for another 2 years or so.

A Trip to The Specialist

On Monday I went to see my specialist. It was a very long appointment, as always, but we were able to cover a lot. We had a somewhat long list of things that needed to be discussed (shoulder, blood pressure, wisdom teeth and heart-mitral valve issues).

First of all, the shoulder. As I wrote earlier, I have been thinking that I am not ready to have surgery on my shoulder; it just isn't bothering me that much, and I can compensate easily to avoid subluxations/dislocations without it greatly effecting my quality of life. I discussed this with my specialist and he agreed that having shoulder surgery was risky business (he's found the EDS patients are 50-80% successful with shoulder surgery, and he feels it's closer to the 50%- not great numbers to be working with). Understanding those outcomes, my thinking is that I need my shoulder to be more limiting, more painful, and effecting my sleep in order for me to take that kind of risk- I just am not to that point yet. He agreed with that, but he was apprehensive to let me think that I could go several years avoiding surgery, and he thought that I needed to be doing more to keep my shoulder in working order (ex. physical therapy). I do understand, that most likely I will need to have surgery given my joint history, but still I don't think now is the right time to that that jump. He would like me to go to a new clinic that he is starting with a few other physicians that focuses on joint instability. I'm all set to do that next Tuesday (6/12). In that appointment I will see my specialist (geneticist), a shoulder orthopedic, a sports medicine physician, and a physical therapist. Together they will all discuss what they think my best plan of action would be. I'm not expecting anything too different then what we are already thinking, but it's always nice to have everyone around the table at one time to think about my case and discuss the possible outcomes.

Secondly we discussed my high blood pressure and the chest pain I started having earlier in the year (there's a post explaining more about what was going on). My BP (blood pressure) has a large gap, maning that the systolic (top number) is always higher than normal (the reason I was diagnosed with high BP) and the diastolic (bottom number) is normal to low. The systolic number represents the pressure exerted on blood vessels when the heart is beating. A high number shows that my vessels have a high pressure, most likely that my heart does more work to compensate for the low diastolic pressure ( the pressure of vessels between beats). My specialist is questioning if I have POTS (Postural Orthostatic Tachycardia Syndrome), rather than a true high blood pressure issue. POTS is a condition of dysautonomia, in which a change from sitting to standing creates abnormally increased heart rate (tachycardia). This would explain why my systolic BP is higher, and would also explain the light-headedness/ dizziness that I frequently experience when standing from a sitting position. I have another appointment in August to see a cardiologist who works with my specialist.

Lastly, we discussed my wisdom teeth. In my last appointment with my physician, he told me not to have my wisdom teeth taken out and that many EDS patients have sever complications when they are taken out (ex. their jaw falls forward and their bite become effected- since I have jaw popping already, I am more likely to have these kind of complications). Last week one of my teeth was starting to come in, making my whole right cheek swollen and I wasn't able to chew much at all. We discussed that if I have infections, and there truly isn't enough room in my mouth for them to come in, then I would have no other choice but to have them removed. He gave us many tips if it came to that point; have my teeth taken out symmetrically and have as gentle extraction as possible.

All in all, it was a long, but worth wile appointment. I've started increasing my hydration (with Gatorade) and adding salt to my diet to try to compensate for the suspected POTS. I'm headed back on Tuesday for my shoulder. And I'm getting along with my wisdom teeth for now.