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!
Thursday, December 20, 2012
Friday, July 20, 2012
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.
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.
Tuesday, July 10, 2012
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.
Wednesday, June 6, 2012
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.
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.
Friday, June 1, 2012
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.
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.
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