Yes, if you get an official diagnose and the surgeon knows this they can operate acording to this so that its safer for you and more fitting your needs. You most likely benefit from it!
yeah that's where I started (and most people from what I hear). if they can't diagnose you then they can refer you to someone who can and help you find ways to make life easier in the meantime.
That your primary alteady agrees on the possibility this could speed things up. Once I had one agree on it the rest went realy fast - i have an upcomming surgery too and wanted something official and it went almost overwhelmingly fast. I wish you good luck for your surgery and a swift journey to you diagnose!
Yeah my spinal surgeon regularly did the surgery on patients with EDS which is a big reason why I went with him and he did a specific type of fusion combo ALIF PLIF
It has for me, good and bad. The good thing is they tend to be more gentle when it comes to positioning you on the operating table. The surgeons who know about it ask about previous surgery experiences and wound healing when they're making decisions. Most of the time it's a gray area though.I always get extra questions from the anesthesia team about neck/jaw mobility and pain.
On the downside I've been deemed inelligible for a few surgeries, or I've had to hunt around for surgeons who are familiar with or willing to operate on EDS patients.
The first one that comes to mind was a stomach surgery (hernia/reflux) because they said as soon as I was healed everything would just stretch back out, not 100% sure if they were on the right track with that one because I got other opinions and an alternative surgery but ended up needing the original one anyway. Fun!
The other one is my shoulder! It's permanently out at this point and I have tearing/bone wear down because of the grinding. Even though I "have the shoulder of an 80 year old" he said because of the eds it's not operable because the surgery tightens everything into the right spot and as soon as I start PT it would slide right out because of my elasticity.
Again not 100% sure how right they were lol
For my wisdom teeth they would not allow me to do it in a regular dentist office. I had to go into a hospital for extra monitoring. He straight up said "I am not equipped to handle you, sorry!" I very much appreciated his honesty though.
I also had to really fight to get my tonsils out but I'm glad I did because they were hiding a nasty infection.
EDS sometimes means you have to advocate extra for yourself with doctors!
I have not had any surgeries after my dx (only got dx last year), but I do feel it would help.
Every time I have had surgery I had doctors saying something "weird" happened. My scarring was bad even though I followed all directions or they could not get the veins and I wake up with soooo many black spots which take months to heal.
So I would push or ask her to push for the dx in your favor. You need an advocate in your corner to keep pushing for the dx. It can be a close friend, family member, anyone. Ask for help so that they can keep this in sight while you take care of your recovery.
Sending you love!
I also have a problem with having weird scarring. Both my wrist scars are especially weird, even the surgeon in post op appointments were stunned by them 😂 it’s less scary knowing why now. And thank you ❤️
“When all you have is a hammer, everything is a nail”. Surgeons do surgery. Usually they do good work. But sometimes there are other solutions!
Have you considered getting physical therapy to strengthen the joints before surgery, to see which joints benefit?
Keep doing physical therapy. Never a chiropractor. Also look into orthopedic everything. Shoes, chairs, braces, posture support, etc. I had major neck surgery years ago and that advice from my physical therapist has made a big difference.
Would you mind talking more about your experience? I’m 8 years into this and in debilitating pain with dislocations and constant grinding. I have severe pain laying down in any position at this point and haven’t gotten more then 20 minutes at a time sleep in over 6 years.
I’ve been told many times by numerous specialist braces will only weaken already hyper mobile areas and make them more out of alignment but at this point I’m wondering if there’s anything I can wear to get some sleep at night
Thanks in advance!
It depends on what area of the body we're talking about. I have lots of back and neck issues but they don't stem from hEDS (as far as I know). But I'd recommend searching for a physical therapist that specializes in neck/back/spinal issues, especially if you're in that much pain. They'll be able to more accurately assess the problem and give you specific recommendations.
It's interesting to hear that feedback from your doctors. I thought braces and supports were pretty standard recommendations for people with hEDS.
Yes I’ve been having this back pain for a year. I’ve been to physical therapy and have had many rounds of spinal injections. Unfortunately nothing has helped.
Absolutely! I've had a spinal fusion and I'm looking at a labrum tear repair sometime this fall, and I can tell you that having surgeons know about my EDS diagnosis has helped them make better decisions for my care.
I had a spinal fusion about 8 months ago, and because my surgeon knew a bit about EDS, he decided on an ALIF approach that allowed him to make sure the fusion implant was extra tight and secure. Additionally, he knew that my skin would need stronger closures to help the healing process, so we went with staples.
Very, very worth it. :)
So, I did mention my primary is pretty confident I do had hEDS, but I’m concerned it won’t be taken seriously because it’s not a formal diagnosis. Do you think it would be beneficial to just keep bringing it up going forward?
Personally, I do think it matters. There are a lot of doctors out there who won't take suspicions of EDS quite as seriously as a formal diagnosis, and also, there are other connective tissue diseases out there that can look similar to EDS that are worth ruling out too.
It can be a long journey to get a diagnosis sometimes, depending on your doctors and insurance, but I think it's always a good idea to have your symptoms fully investigated. :)
I nearly made a similar post. I've had ten operations in 9-1/2 years and I have another two coming up. My last one was a fucking nightmare, a C0-C2 fusion with Chiari decompression, in Jan. Now I need C3-C5/6 done and I tore the labrum of my 'good' hip.
This is what I have to look forward to for the rest of my life, a surgery every year? I'm only 38. Three of them we had to pay for out-of-pocket (two were about $15k and the recent one was $23k). We sure as hell can't afford this financially, and I can't afford the mental damage.
I have had 9 surgeries in the past 6 years. Still have two more on my list. I was able to get a diagnosis in the midst of all of it. My sports med doctor led me to my diagnosis with a rheumatologist. It’s possible I promise!
Edit: a diagnosis will change surgery and rehab!
Hi 21f just got a spinal fusion last month if you need anything pls lmk 🫶🏻 always here to talk I know how difficult it is having to face major surgery and EDS at the same time it’s fucking horrible
It will help a lot to get a diagnosis before your next surgery. The downside is that not many surgeons will risk doing a fusion in a EDS patient and sometimes you won't be elegible for some procedures or it will get delayed for more years given the access to more varieties of treatments for you.
You have the (unfortunate) "luck" of already knowing how your body handle these types of procedures, as a counterpoint to the downsides i mentioned.
I also had many surgeries and it does help a lot in my treatment. I get access to many types of PTs without many issues weekly and my medical team works harder to manage my case, and they're more careful overall when touching/positioning me. All this based on my experience.
Edit: missed some words.
Omg and you're only 22!? I'm so sorry that you've had to go through all that.
Also - did your ankles make a snap crackle and pop sound when you walked? It used to snap every handful of steps when I was younger, and now it's every time I take a step in both ankles. God forbid I ever have to sneak away from an intruder. Game over.
So it’s actually a funny story, I had no idea I had snapped tendons. I only found out after I made a joke about how I sprained my ankles at least 3 times a year and needed boot and crutches. This doctor was the only one who actually listened and told me that’s not normal and to see a podiatrist. I then was told by said podiatrist that he was shocked about how loose my ankles were And I was the poster child for the surgery I had😂 as for the snap, crackle and pop. I only had that after my surgeries, I guess there was nothing in my ankles to begin with TO snap crackle and pop 😂
Shit for a second i thought i posted something and forgot about it, this is so similar to me! In high school i had both ankles reconstructed with cadaver ligaments and tore right through them almost immediately. Im now getting ready for my 9th ankle surgery, i will be newly 25 when it happens. Im also working on my wrists as well. Having a diagnosis of hEDS has made a huge difference in my surgeons decisions. If we had known about it i wouldnt have had to go through my first five surgeries. Now my surgeon knows exactly what to do to fix the extreme hypermobility in my ankles. I shouldnt need any more surgeries unless i do idiot things and break them, or develop more arthritis and need ankle replacements. But that would be years down the road.
Holy we are a chip off the same block! I have a question, what kind of symptoms did you notice during your ankle surgeries that weren’t successful? I had such a hard time getting back to normal after both ankles were complete and it honestly scares the living crap out of me to think I might need it again. Lastly as someone who has only gone through that procedure for one round, I just want to say that I think you are amazingly resilient. Honestly I don’t think people understand how crazy it feels to go from no tendons and stuff to having them. It’s a HUGE adjustment. I strive to be as tough as you❤️
Thank you ❤️ it’s nice talking to someone who understands. I had no ligaments left intact in either ankle when they did the cadaver ligaments. So yes, going from no internal support to immediate support was a huge change.
Symptom wise, they were tight for a few months but then i would notice after getting more active that the hypermobility would come back pretty aggressively. I would start rolling them any time i walked and spraining them any time i did sports. They would hurt more all the time. My feet hurt in normal shoes most of the time and it felt better to walk in slides or barefoot. They just felt super unstable. When i would go back to the doctor and get imaging done they would find the ligaments torn through again. Ive even had artificial braces in my ankles (just a little strap that does the job of ligaments) and ive managed to make those fail. Same symptoms every time.
After doing this so many times, i think cadaver ligaments or even ligament reconstruction in general is a poor choice for anyone with EDS who is pretty active. I have found success with the last stabilizing surgery i got, it is what i will be getting done next month in the other ankle. I don’t know the exact terminology, but it involves rerouting a tendon in your foot to provide support. All my other surgeries failed within a year, ive made it three with no change with this last one.
I don’t think people understand how much of. Mental toll to be non-weight bearing is. I know how much it affected me to be practically bed bound for months. I’m so sorry that those past surgeries failed I can’t imagine how discouraging that would have felt, I am in awe of your strength and tenacity . Thank you for sharing that with me I’ll definitely remember this for the future. I wish you the best of luck in your next surgery and I hope this is the one that will do the trick! Keep me updated ❤️
Oof or just not being fully weight bearing messes you up. I spent almost an entire year in a walking boot and that sucked and screwed my hips up. Ive done a lot of processing about my failed surgeries and have gotten past the resentment i have for the surgeons who got into something they clearly weren’t prepared for. Ill let you know how it goes if i remember (ADHD for the win). Im getting it done in just under a month and i can’t wait.
Yes, if you get an official diagnose and the surgeon knows this they can operate acording to this so that its safer for you and more fitting your needs. You most likely benefit from it!
Thank you for this info, should I just bring it up to my primary that I’m wanting to start the journey of an official diagnosis?
yeah that's where I started (and most people from what I hear). if they can't diagnose you then they can refer you to someone who can and help you find ways to make life easier in the meantime.
That your primary alteady agrees on the possibility this could speed things up. Once I had one agree on it the rest went realy fast - i have an upcomming surgery too and wanted something official and it went almost overwhelmingly fast. I wish you good luck for your surgery and a swift journey to you diagnose!
Thank you ❤️
Yeah my spinal surgeon regularly did the surgery on patients with EDS which is a big reason why I went with him and he did a specific type of fusion combo ALIF PLIF
It has for me, good and bad. The good thing is they tend to be more gentle when it comes to positioning you on the operating table. The surgeons who know about it ask about previous surgery experiences and wound healing when they're making decisions. Most of the time it's a gray area though.I always get extra questions from the anesthesia team about neck/jaw mobility and pain. On the downside I've been deemed inelligible for a few surgeries, or I've had to hunt around for surgeons who are familiar with or willing to operate on EDS patients.
If you don’t mind me asking what kinda surgeries were you turned away from? And I’m curious for the reasoning.
The first one that comes to mind was a stomach surgery (hernia/reflux) because they said as soon as I was healed everything would just stretch back out, not 100% sure if they were on the right track with that one because I got other opinions and an alternative surgery but ended up needing the original one anyway. Fun! The other one is my shoulder! It's permanently out at this point and I have tearing/bone wear down because of the grinding. Even though I "have the shoulder of an 80 year old" he said because of the eds it's not operable because the surgery tightens everything into the right spot and as soon as I start PT it would slide right out because of my elasticity. Again not 100% sure how right they were lol For my wisdom teeth they would not allow me to do it in a regular dentist office. I had to go into a hospital for extra monitoring. He straight up said "I am not equipped to handle you, sorry!" I very much appreciated his honesty though. I also had to really fight to get my tonsils out but I'm glad I did because they were hiding a nasty infection. EDS sometimes means you have to advocate extra for yourself with doctors!
I have not had any surgeries after my dx (only got dx last year), but I do feel it would help. Every time I have had surgery I had doctors saying something "weird" happened. My scarring was bad even though I followed all directions or they could not get the veins and I wake up with soooo many black spots which take months to heal. So I would push or ask her to push for the dx in your favor. You need an advocate in your corner to keep pushing for the dx. It can be a close friend, family member, anyone. Ask for help so that they can keep this in sight while you take care of your recovery. Sending you love!
I also have a problem with having weird scarring. Both my wrist scars are especially weird, even the surgeon in post op appointments were stunned by them 😂 it’s less scary knowing why now. And thank you ❤️
“When all you have is a hammer, everything is a nail”. Surgeons do surgery. Usually they do good work. But sometimes there are other solutions! Have you considered getting physical therapy to strengthen the joints before surgery, to see which joints benefit?
Keep doing physical therapy. Never a chiropractor. Also look into orthopedic everything. Shoes, chairs, braces, posture support, etc. I had major neck surgery years ago and that advice from my physical therapist has made a big difference.
Would you mind talking more about your experience? I’m 8 years into this and in debilitating pain with dislocations and constant grinding. I have severe pain laying down in any position at this point and haven’t gotten more then 20 minutes at a time sleep in over 6 years. I’ve been told many times by numerous specialist braces will only weaken already hyper mobile areas and make them more out of alignment but at this point I’m wondering if there’s anything I can wear to get some sleep at night Thanks in advance!
It depends on what area of the body we're talking about. I have lots of back and neck issues but they don't stem from hEDS (as far as I know). But I'd recommend searching for a physical therapist that specializes in neck/back/spinal issues, especially if you're in that much pain. They'll be able to more accurately assess the problem and give you specific recommendations. It's interesting to hear that feedback from your doctors. I thought braces and supports were pretty standard recommendations for people with hEDS.
Yes I’ve been having this back pain for a year. I’ve been to physical therapy and have had many rounds of spinal injections. Unfortunately nothing has helped.
Absolutely! I've had a spinal fusion and I'm looking at a labrum tear repair sometime this fall, and I can tell you that having surgeons know about my EDS diagnosis has helped them make better decisions for my care. I had a spinal fusion about 8 months ago, and because my surgeon knew a bit about EDS, he decided on an ALIF approach that allowed him to make sure the fusion implant was extra tight and secure. Additionally, he knew that my skin would need stronger closures to help the healing process, so we went with staples. Very, very worth it. :)
So, I did mention my primary is pretty confident I do had hEDS, but I’m concerned it won’t be taken seriously because it’s not a formal diagnosis. Do you think it would be beneficial to just keep bringing it up going forward?
Personally, I do think it matters. There are a lot of doctors out there who won't take suspicions of EDS quite as seriously as a formal diagnosis, and also, there are other connective tissue diseases out there that can look similar to EDS that are worth ruling out too. It can be a long journey to get a diagnosis sometimes, depending on your doctors and insurance, but I think it's always a good idea to have your symptoms fully investigated. :)
I nearly made a similar post. I've had ten operations in 9-1/2 years and I have another two coming up. My last one was a fucking nightmare, a C0-C2 fusion with Chiari decompression, in Jan. Now I need C3-C5/6 done and I tore the labrum of my 'good' hip. This is what I have to look forward to for the rest of my life, a surgery every year? I'm only 38. Three of them we had to pay for out-of-pocket (two were about $15k and the recent one was $23k). We sure as hell can't afford this financially, and I can't afford the mental damage.
I totally get it, it feels like I can’t live life. The constant pain is such a hindrance. I’ll be thinking about you. You got this ❤️
I have had 9 surgeries in the past 6 years. Still have two more on my list. I was able to get a diagnosis in the midst of all of it. My sports med doctor led me to my diagnosis with a rheumatologist. It’s possible I promise! Edit: a diagnosis will change surgery and rehab!
Hi 21f just got a spinal fusion last month if you need anything pls lmk 🫶🏻 always here to talk I know how difficult it is having to face major surgery and EDS at the same time it’s fucking horrible
I really appreciate that, I will definitely reach out if needed ❤️ I wish you an easy and quick recovery!
It will help a lot to get a diagnosis before your next surgery. The downside is that not many surgeons will risk doing a fusion in a EDS patient and sometimes you won't be elegible for some procedures or it will get delayed for more years given the access to more varieties of treatments for you. You have the (unfortunate) "luck" of already knowing how your body handle these types of procedures, as a counterpoint to the downsides i mentioned. I also had many surgeries and it does help a lot in my treatment. I get access to many types of PTs without many issues weekly and my medical team works harder to manage my case, and they're more careful overall when touching/positioning me. All this based on my experience. Edit: missed some words.
Omg and you're only 22!? I'm so sorry that you've had to go through all that. Also - did your ankles make a snap crackle and pop sound when you walked? It used to snap every handful of steps when I was younger, and now it's every time I take a step in both ankles. God forbid I ever have to sneak away from an intruder. Game over.
So it’s actually a funny story, I had no idea I had snapped tendons. I only found out after I made a joke about how I sprained my ankles at least 3 times a year and needed boot and crutches. This doctor was the only one who actually listened and told me that’s not normal and to see a podiatrist. I then was told by said podiatrist that he was shocked about how loose my ankles were And I was the poster child for the surgery I had😂 as for the snap, crackle and pop. I only had that after my surgeries, I guess there was nothing in my ankles to begin with TO snap crackle and pop 😂
Shit for a second i thought i posted something and forgot about it, this is so similar to me! In high school i had both ankles reconstructed with cadaver ligaments and tore right through them almost immediately. Im now getting ready for my 9th ankle surgery, i will be newly 25 when it happens. Im also working on my wrists as well. Having a diagnosis of hEDS has made a huge difference in my surgeons decisions. If we had known about it i wouldnt have had to go through my first five surgeries. Now my surgeon knows exactly what to do to fix the extreme hypermobility in my ankles. I shouldnt need any more surgeries unless i do idiot things and break them, or develop more arthritis and need ankle replacements. But that would be years down the road.
Holy we are a chip off the same block! I have a question, what kind of symptoms did you notice during your ankle surgeries that weren’t successful? I had such a hard time getting back to normal after both ankles were complete and it honestly scares the living crap out of me to think I might need it again. Lastly as someone who has only gone through that procedure for one round, I just want to say that I think you are amazingly resilient. Honestly I don’t think people understand how crazy it feels to go from no tendons and stuff to having them. It’s a HUGE adjustment. I strive to be as tough as you❤️
Thank you ❤️ it’s nice talking to someone who understands. I had no ligaments left intact in either ankle when they did the cadaver ligaments. So yes, going from no internal support to immediate support was a huge change. Symptom wise, they were tight for a few months but then i would notice after getting more active that the hypermobility would come back pretty aggressively. I would start rolling them any time i walked and spraining them any time i did sports. They would hurt more all the time. My feet hurt in normal shoes most of the time and it felt better to walk in slides or barefoot. They just felt super unstable. When i would go back to the doctor and get imaging done they would find the ligaments torn through again. Ive even had artificial braces in my ankles (just a little strap that does the job of ligaments) and ive managed to make those fail. Same symptoms every time. After doing this so many times, i think cadaver ligaments or even ligament reconstruction in general is a poor choice for anyone with EDS who is pretty active. I have found success with the last stabilizing surgery i got, it is what i will be getting done next month in the other ankle. I don’t know the exact terminology, but it involves rerouting a tendon in your foot to provide support. All my other surgeries failed within a year, ive made it three with no change with this last one.
I don’t think people understand how much of. Mental toll to be non-weight bearing is. I know how much it affected me to be practically bed bound for months. I’m so sorry that those past surgeries failed I can’t imagine how discouraging that would have felt, I am in awe of your strength and tenacity . Thank you for sharing that with me I’ll definitely remember this for the future. I wish you the best of luck in your next surgery and I hope this is the one that will do the trick! Keep me updated ❤️
Oof or just not being fully weight bearing messes you up. I spent almost an entire year in a walking boot and that sucked and screwed my hips up. Ive done a lot of processing about my failed surgeries and have gotten past the resentment i have for the surgeons who got into something they clearly weren’t prepared for. Ill let you know how it goes if i remember (ADHD for the win). Im getting it done in just under a month and i can’t wait.