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.
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