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.

An Over Due Update

It's been way too many months later, and I would love to say the reason is because I haven't had anything to update on, but that isn't quite the case. My first year of collage, an awesome babysitting job, and a few too many EDS issues have keept me busy over the past couple months. Now that I'm on summer vacation, after a successful first year of college, I hope to be a little better at keeping things up to date.

I suppose I should start where I left off; the shoulder issue. My shoulder is just about the same as it was in October. I did several months of intense PT to try to tighten things up, and strengthen my muscles, but my shoulder just didn't quite play along. In December I got a second opinion (recommended by my EDS specialist) for my shoulder to make sure that I was with the right doctor and to make sure I was doing the correct treatment, as well as to see if this other doctor had any other options available for me. I could say many things about that doctor I saw for a second opinion, but to sum things up, he just wasn't the right fit for me.

Like I wrote in an earlier post (You Win Some, You Loose Some-10/5/11) , finding a doctor who works with you is extremely important as an EDS patient. To me, my doctors are my team. We're all teammates and everyone involved has to feel that way for treatment to be successful, because let's be honest- I am not a textbook case and my doctors are not going to always have all the answers. I need a doctor on my team who realizes this and who is willing to invest time in my case to work with me and to find something that works; this doctor I saw for a second opinion just wasn't a good fit for my team.

After that appointment, I saw another doctor in my Sports Medicine office in town (who I had seen a year or two earlier for initial shoulder consult- and who operated on my brother a couple years ago for a broken clavicle). She is my current shoulder doctor and she totally understands my case. She works closely with my PT, which is important and she understands that she doesn't have all the answers. We decided that PT wasn't working, which we already knew. She agreed that it made sense to stop PT at that time since I wasn't advancing. We discussed surgical options, but she thought that it was up to me and how my quality of life was. We talked about how my subluxations and dislocations were not doing any permeant damage, so it was not going to put me worse off if I decided to wait to have surgery.

At first I felt like planing to have surgery over my winter break this year would make sense, and that's what we planned on. Now looking at it, I'm not sure I'm ready to have surgery. My shoulder is unstable, but at this point it is something that I can adapt to without negatively effecting my quality of life too much. This is something that is hard for people to understand, but I know that there are great risks for me going into surgery. Being realistic, I will have complications and my recovery won't be easy, thanks to EDS. For me to go into surgery understanding that, I have to be at my last thread, I have to know that my daily life is so effected by my issue that it is worth the risk of undergoing surgery and knowing that there is a chance that the operations won't provide long term relief. As of right now, I'm planning on waiting to have surgery, at least for this year.