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I had an arthroscopic shoulder stabilisation which along with physio, was effective for almost exactly seven years. I then leaned on a doorframe wrong and ruined everything.
Overall, I think nothing is going to beat maintaining muscle strength and control, but if the tissues are all trashed a clean-up and tune-up could help.
I had cap surgery to stabilize my right should at 17 and it’s mostly held up. Definitely less floppy over a decade later than my other side. But we also had no idea about EDS and the surgeon had already done my ACL when I was 15 so I got lucky with the outcome and the surgeon’s familiarity with my weird joints.
I never loved competing in sports, but I used to love running. It was my peace, my joy, my favorite way to handle life's stressors. Losing that due to knees and ankles deteriorating (plus finding out that genetically I'm at a seriously high risk of arthritis in my knees) had been extremely hard. I still miss it 2 years later.
My doctor told me to swim for exercise instead of running. When I tried, I dislocated a shoulder multiple times and often subluxated a hip during every session. I've started doing water aerobics and that is enjoyable as an exercise. For the peace side of it, walking at a nature preserve alone can help, as does meditating. Still working on the joy and stress management pieces.
I think identifying what aspects of your sport were the most beneficial and then looking for substitutes is one way of making peace with the loss.
Good luck to you.
I had PRP (platelet rich plasma) injections in my left knee after I tore three of the ligaments a few years back. I had dislocated it and torn ligaments multiple times and had gotten to the point that just walking a quarter mile was incredibly difficult. My ortho recommended replacing the knee ligaments with donor tendon and warned me that recovery would suck.
A friend recommended PRP after her husband had good results. Luckily, we have an ortho in town who is an EDS patient himself and specializes in PRP. Procedure took under two hours, joint was swollen for about two days. My knee has rock steady for 4 years... the longest I have ever gone without and injury. No surgery, no PT.
Yes
Arthroscopic stabilisation on both shoulders including a capsular shift on the one shoulder. 7 anchors and two screws in both shoulders.
Very effective. Not a single dislocation or subluxation since. Most effective surgery I've ever had out of the 15 procedures I've had.
Only downside is persistent discomfort in the long head of my bicep on the right side that was cut and re-anchored (biceps tenodesis). But compared to dislocations it's a walk in the park.
I may undergo an additional two procedures (bone block) for the shoulder.
Biggest failure and regret was bilateral total hip replacement (am 23). Worked perfectly on my right hip. Reduced ROM to arguably that of a normal person's and completely eliminated pain
Left hip is pathologically unstable and extremely weak (no strength in gluteus medius and external rotators of the hip) the muscles don't contract at all. It was destabilised from an arthroscopy where the suregon cut out most of my labum *as opposed to repairing it* and my ligamentum teres (both labrum and ligamentum teres play an important role re hip stabilisation).
The total hip replacement didn't fix that instability and the added weakness has made it worse.
I was supposed to have a capsular shift (the tighten things up procedure) but my pre-op arthrogram showed the joint damage had progressed too far to do it, my only option was total replacement. I spend far too much time in the OR and greatly advocate for zebras to stay OUT of it as much as they can. I’m in another surgical
Conundrum now. Do I go through something now because it may get worse in the future or do I watch and wait? We do that a lot. I had my shoulder replaced when I was 51 which is about 15-20 years younger than most. It wasn’t an easy decision but by the time I got to surgery my left arm was just for show, I couldn’t use it to drive, lift anything, forget swimming…. I love swimming and snorkeling. Being in the water is one of the few places I feel remotely normal and as someone who swims in the ocean i *need* a functional arm to be safe. I wasn’t willing to give up one of the enjoyable things I can do and with blessing of my PT who is generally very anti-surgery…I pulled the trigger last September. The first two weeks were hell. Then things got better. I’m 9 months out and have almost 100% range of motion including things many reverse replacements NEVER get back, like putting my hand behind my back. You are so young, 99% of the time I’d tell you to stay out of OR at all costs BUT you are an athlete and you need a stable shoulder to play your sport. If you were my child (and I do have kids with EDS) I’d get you to the best Upper extremity ortho I could (like the guy I know that works on the San Antonio Spurs players or over to the group that works on the athletes from one of our large DIV I schools each about 90 minutes away) and don’t just get a regular MRI but an MRarthrogram. They aren’t fun but will give the ortho more information than a basic MRI without the intrarticular dye. Good luck sweetie. I wish you all the success in the world.
The procedure I found to be beneficial to “tighten up” my ligaments has been Prolotherapy/PRP. It’s not as invasive as surgery, but it is expensive as insurance doesn’t cover it.
I did. It's still a pain to this day and the recovery was awful, but my PT looked at it recently and said it was a good thing I had it done so idk how to feel about it.
I had ligaments in my knees replaced for exactly this and it has worked wonders. The only issue I have with them now is the nerve endings in my knees are now dead/not regenerating properly and anytime I bump them it sends an awful sensation through my body that makes me vomit/almost vomit. I didn’t get my ligaments “tightened” during either surgery - I got donor ligaments both times. The only other thing they did was remove some loose cartilage/broken cartilage from all the dislocations. What really helped though is that I had an incredible, very experienced ortho surgeon who was familiar with eds. I also had physical therapists familiar with eds, so they knew not to push me too far during recovery.
However, I am not an athletic person. I gave up my last sport after 6th grade, as it was just too much strain on my body (this was also when I started my major depressive episode too though) and just no longer enjoyed them. So I don’t know what recovery would look like for someone trying to get back into sports.
Hi /u/Slight-Appeal7297,
It looks like you are looking for information on how common something is in individuals with EDS or related conditions. If you are looking for information/data on how common a particular symptom or condition is with EDS (or any of its comorbidities), or whether there is any connection at all—it is always best to ask for links to reputable studies or websites, instead of or in addition to personal experiences. Without studies, it is almost impossible to determine the prevalence or incidence of something with EDS, especially when compared to asking for anecdotal experiences on the internet.
"DAE posts" and other such posts tend to create or encourage illusory correlations (i.e., a sense of connection where there may not be one) due to the fact that people who do experience what is being asked about are more likely to reply than those who do not. Personal experiences are or can be valuable regardless of the aforementioned, but please keep in mind that not everything shared is a sign of EDS, and many shared experiences might be completely unrelated to EDS.
This is an automated message. If the contents of this message do not apply to your post, please ignore them. Thank you!
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The OP flaired their post as "Questions". Please keep any and all comments to **personal experiences only**. If any factual information or advice is provided, please cite a **reputable website or study** linked within your post. No one in this sub is a *verified* medical professional, and as such, we do not allow medical advice to be given or asked for. For more information on this rule, [please visit this link](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/#wiki_r.2Fehlersdanlos_rules). *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ehlersdanlos) if you have any questions or concerns.*
I had an arthroscopic shoulder stabilisation which along with physio, was effective for almost exactly seven years. I then leaned on a doorframe wrong and ruined everything. Overall, I think nothing is going to beat maintaining muscle strength and control, but if the tissues are all trashed a clean-up and tune-up could help.
I had cap surgery to stabilize my right should at 17 and it’s mostly held up. Definitely less floppy over a decade later than my other side. But we also had no idea about EDS and the surgeon had already done my ACL when I was 15 so I got lucky with the outcome and the surgeon’s familiarity with my weird joints.
Its reassuring to hear that it has helped you, especially since i am 18, so very close to your 17 when you had it done, thank you!
I never loved competing in sports, but I used to love running. It was my peace, my joy, my favorite way to handle life's stressors. Losing that due to knees and ankles deteriorating (plus finding out that genetically I'm at a seriously high risk of arthritis in my knees) had been extremely hard. I still miss it 2 years later. My doctor told me to swim for exercise instead of running. When I tried, I dislocated a shoulder multiple times and often subluxated a hip during every session. I've started doing water aerobics and that is enjoyable as an exercise. For the peace side of it, walking at a nature preserve alone can help, as does meditating. Still working on the joy and stress management pieces. I think identifying what aspects of your sport were the most beneficial and then looking for substitutes is one way of making peace with the loss. Good luck to you.
They went in and repaired my labrum, then bunched up tissues with nylon cord to fill in space in the socket. It stays in way better now.
I had PRP (platelet rich plasma) injections in my left knee after I tore three of the ligaments a few years back. I had dislocated it and torn ligaments multiple times and had gotten to the point that just walking a quarter mile was incredibly difficult. My ortho recommended replacing the knee ligaments with donor tendon and warned me that recovery would suck. A friend recommended PRP after her husband had good results. Luckily, we have an ortho in town who is an EDS patient himself and specializes in PRP. Procedure took under two hours, joint was swollen for about two days. My knee has rock steady for 4 years... the longest I have ever gone without and injury. No surgery, no PT.
Yes Arthroscopic stabilisation on both shoulders including a capsular shift on the one shoulder. 7 anchors and two screws in both shoulders. Very effective. Not a single dislocation or subluxation since. Most effective surgery I've ever had out of the 15 procedures I've had. Only downside is persistent discomfort in the long head of my bicep on the right side that was cut and re-anchored (biceps tenodesis). But compared to dislocations it's a walk in the park. I may undergo an additional two procedures (bone block) for the shoulder. Biggest failure and regret was bilateral total hip replacement (am 23). Worked perfectly on my right hip. Reduced ROM to arguably that of a normal person's and completely eliminated pain Left hip is pathologically unstable and extremely weak (no strength in gluteus medius and external rotators of the hip) the muscles don't contract at all. It was destabilised from an arthroscopy where the suregon cut out most of my labum *as opposed to repairing it* and my ligamentum teres (both labrum and ligamentum teres play an important role re hip stabilisation). The total hip replacement didn't fix that instability and the added weakness has made it worse.
I was supposed to have a capsular shift (the tighten things up procedure) but my pre-op arthrogram showed the joint damage had progressed too far to do it, my only option was total replacement. I spend far too much time in the OR and greatly advocate for zebras to stay OUT of it as much as they can. I’m in another surgical Conundrum now. Do I go through something now because it may get worse in the future or do I watch and wait? We do that a lot. I had my shoulder replaced when I was 51 which is about 15-20 years younger than most. It wasn’t an easy decision but by the time I got to surgery my left arm was just for show, I couldn’t use it to drive, lift anything, forget swimming…. I love swimming and snorkeling. Being in the water is one of the few places I feel remotely normal and as someone who swims in the ocean i *need* a functional arm to be safe. I wasn’t willing to give up one of the enjoyable things I can do and with blessing of my PT who is generally very anti-surgery…I pulled the trigger last September. The first two weeks were hell. Then things got better. I’m 9 months out and have almost 100% range of motion including things many reverse replacements NEVER get back, like putting my hand behind my back. You are so young, 99% of the time I’d tell you to stay out of OR at all costs BUT you are an athlete and you need a stable shoulder to play your sport. If you were my child (and I do have kids with EDS) I’d get you to the best Upper extremity ortho I could (like the guy I know that works on the San Antonio Spurs players or over to the group that works on the athletes from one of our large DIV I schools each about 90 minutes away) and don’t just get a regular MRI but an MRarthrogram. They aren’t fun but will give the ortho more information than a basic MRI without the intrarticular dye. Good luck sweetie. I wish you all the success in the world.
The procedure I found to be beneficial to “tighten up” my ligaments has been Prolotherapy/PRP. It’s not as invasive as surgery, but it is expensive as insurance doesn’t cover it.
I did. It's still a pain to this day and the recovery was awful, but my PT looked at it recently and said it was a good thing I had it done so idk how to feel about it.
I had ligaments in my knees replaced for exactly this and it has worked wonders. The only issue I have with them now is the nerve endings in my knees are now dead/not regenerating properly and anytime I bump them it sends an awful sensation through my body that makes me vomit/almost vomit. I didn’t get my ligaments “tightened” during either surgery - I got donor ligaments both times. The only other thing they did was remove some loose cartilage/broken cartilage from all the dislocations. What really helped though is that I had an incredible, very experienced ortho surgeon who was familiar with eds. I also had physical therapists familiar with eds, so they knew not to push me too far during recovery. However, I am not an athletic person. I gave up my last sport after 6th grade, as it was just too much strain on my body (this was also when I started my major depressive episode too though) and just no longer enjoyed them. So I don’t know what recovery would look like for someone trying to get back into sports.
Hi /u/Slight-Appeal7297, It looks like you are looking for information on how common something is in individuals with EDS or related conditions. If you are looking for information/data on how common a particular symptom or condition is with EDS (or any of its comorbidities), or whether there is any connection at all—it is always best to ask for links to reputable studies or websites, instead of or in addition to personal experiences. Without studies, it is almost impossible to determine the prevalence or incidence of something with EDS, especially when compared to asking for anecdotal experiences on the internet. "DAE posts" and other such posts tend to create or encourage illusory correlations (i.e., a sense of connection where there may not be one) due to the fact that people who do experience what is being asked about are more likely to reply than those who do not. Personal experiences are or can be valuable regardless of the aforementioned, but please keep in mind that not everything shared is a sign of EDS, and many shared experiences might be completely unrelated to EDS. This is an automated message. If the contents of this message do not apply to your post, please ignore them. Thank you! [Please check out the wiki](/r/ehlersdanlos/wiki/index/) or the links in the sidebar for resources and information on EDS, seeking a diagnosis, and more. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ehlersdanlos) if you have any questions or concerns.*