Ehlers Danlos Syndrome?

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Күн бұрын

Ehlers Danlos syndrome (EDS) is a group of hereditary connective tissue disorders that manifests clinically with skin hyperelasticity, hypermobility of joints, atrophic scarring, and fragility of blood vessels... #drcyr #orthodoc #saspine #ehlersdanlos #ehlersdanlossyndrome #spinesurgery... SASpine.com

Пікірлер: 29

@vannayoung4122 Жыл бұрын

I was ready to share this, bc I have EDS, had ACDF c3-c5, pseudofused sadly only one level, and now have damage to the subsequent levels above and below my fusion. But PLEASE don't ever say anything about Ehlers Danlos Syndrome being kinda "cool" in any way. Doc there is absolutely nothing "cool" about EDS. I get why you put it in those terms. I am disabled now but started my career into healthcare as an EMT at age 17, then on to college for my RN, so I understand what "cool" is to you, and to my past self. My family is made of many healthcare professionals from doctors, pharmacist, nurses, respiratory, EMS, and people like us are different, we see and do things the average person would run from. We compartmentalize and talk about things in a manner patients and their families would find insensitive and inappropriate. I thank you for recording this video and giving the public knowledge on rare conditions like EDS. Once again I understand why you would say cool, whenever my stoma from my ileostomy prolapsed 8 inches, I was left holding my intestines which still maintained perstalsis external to the body, my doctor comes in and I am recording my intestines on my phone. He was like what the heck, and I said come on u can't tell me this isn't cool? 😂 We got a chuckle and it lessened my fear a bit. Thank you for educating the public, maybe next time use a different adj, bc it's a long, painful road us zebras and our families share.

@laurenmansell4346 8 ай бұрын

Amen sister! I just wrote a similar thing about it being nowhere close to “cool”. I also pointed out how some of the information is misleading here. Bless you, fellow Zebra. 🦓💜

@HollieBenji 3 ай бұрын

Thank you for sharing that, was going to say the same. It’s not cruel, it’s a complex and very challenging condition to live with.

@cookinmom35 7 ай бұрын

UGH! As a classical EDS patient I wanted to love this so much. I mean, here's a chance to hear a medical professional share important insights for non-EDS patients on how absolutely debilitating and painful this disorder is and maybe even provide a little validation to those of us who suffer every single day with little to no support, compassion or understanding. Instead, we get to hear how "cool" this disorder is because we so "bendable". Inappropriate, glib and insensitive. I feel so bad for the patient laying on the operating table waiting for his/ her back to be fused and the rest of his/her life being altered yet again forever while you're recording this "cool" video. Geesh...find some professionalism at the very least. What a missed opportunity.

@omanita7289 6 ай бұрын

🦓He forgets to mention how wonderful it is for young adults to wake up in the morning with a dislocated hip or shoulder. That it is a connective tissue disease, connective tissue not only holds your skeleton but also your heart, brain and lungs in place. Without connective tissue, your body collapses. Our muscle strength literally keeps us standing. This so-called professional has no idea how complex the multi-system disease EDS is. No two EDS patients are the same, it is an overwhelming hereditary disease. We are the zebras among the horses, doctors only listen to the massive horses' hooves, at least one zebra among 5000 horses.🦓

@octoberdawn1087 Жыл бұрын

My teenager flung her feet behind her head when you said they can do party tricks. 😆My kid and I both have it and I have permanent nerve damage from every surgery. My lingual nerve damage from wisdom teeth removal is a daily struggle. I have degenerative disc disease and cronic pain all over. I'm angry it took so long to get a diagnoses. It wasnt even ever offered to me as a posibility. I learned about it after my autism diagnosis 2 years ago (in my 40s 😒) I believe it's way more common than believed bc look how many of us have been hospitalized and needed p.t. over and over and all the obvious signs were there. 😵‍💫 Like everything I was forced to do in p.e. and labor jobs etc. Now I'm mush

@inigknot101 Жыл бұрын

I feel for you so much. I myself have DDD and was put through the ringer with pain management and PT. I was recently operated on by Dr. Cyr, and I'm a week-and-a-half into my recovery. I'm already on my feet and exercise is actually working for me now. This man (Dr Cyr) is an angel sent from God himself to fix us. I was on painkillers and pain management for years, going through the revolving door of pain clinics. The difference now is that everything seems to be working out. I had nearly my entire lower back (up to T10) fused with instrumentation. I was mush before too. And depressed. And all the things. No one would listen until I entered SA Spine. Dr Cyr looked at my case and tailored a treatment plan just for me. He really cares about people and is EXTREMELY talented. I highly recommend him, no matter where you live in the world. He can give you your life back. Best of luck.

@ruparkyitin 8 ай бұрын

@@inigknot101 Yes He is very strong

@jtfb7208 5 ай бұрын

I think this surgeon meant well. He did not mean to undermine by using the word “cool” but I also flinched at it.

@4wayStopEnforcement 10 ай бұрын

But also, not necessarily. I have EDS, and this kind of stereotyping led me to believe I didn’t have it until I went through the diagnostic criteria.

@spanque31 2 ай бұрын

Amen!

@jennbriscoe2622 4 ай бұрын

It's so cool it hurts!

@justinianiii4820 Жыл бұрын

Very problematic calling it a ‘cool’ syndrome or romanticizing ‘party tricks’ because those party tricks are very damaging over time for people with EDS. Especially coming from a medical professional.

@inigknot101 Жыл бұрын

Seems to me that people in this comment section are getting too hung up on the adjectives he used to describe this condition. I guarantee he does not find this person's pain cool in any way. Bottom line. He's a surgeon who is there to operate on someone. He takes this extremely seriously. I fail to see how he "romanticized" this condition by simply describing it.

@laurenmansell4346 8 ай бұрын

If you do not have it, then you will not understand where we as patients are coming from. It’s not just the word “cool” that people are disagreeing with. It’s the fact that some of the information this dr is sharing is stereotypical misinformation about the disorder. He’s describing things that are the reason patients are falling under the radar and not getting recognized for what EDS actually is. Patients have a right to state how they think and feel about this. I’m sorry if you have it too, and don’t agree. We just want people to understand how it really is, and it’s way less than cool and way more complicated than he’s stating. Surgeons are not usually the expert on this condition. Their specialty is surgery, but they need to know more and share the correct information so that more people get diagnosed properly and helped. Videos like these are problematic, whether his intention is to help or not. It really doesn’t when misinformation is spread. Also, the patient is going to really suffer from this and the future fusions which will undoubtedly come afterwards, so we feel for her.

@katelynfe 7 ай бұрын

Its extremely painful. People often claim that being super flexible is a flex or that its so called cool but behind the surface is an individual who likely is in debilitating pain. Many many patients with hEDS end up in wheelchairs

@rachel9052 9 ай бұрын

I’m not sure if you answer questions; however, I was curious how your approach changes both intra-operatively and post-operatively when you are working with a patient with hEDS. Are there any extra precautions or considerations that you account for that you would not need for patients without hyper-mobility issues? Does post-operative therapy play an even greater role in achieving positive outcomes for these patients than your typical pt?

@omanita7289 6 ай бұрын

Bravely despite the pain, many cope with an invisible illness that is often not understood by doctors. The doctor learns in his training that when you hear horse hooves, don't expect a zebra! We the ZEBRAS spread awareness. KZbin Ehlers Danlos society 🦓

@jtfb7208 5 ай бұрын

Wish prolotherapy was more readily available. Not sure what PRP is.

@michele0324 5 ай бұрын

0:10 Perhaps you mean to say you have a patient with Ehlers-Danlos syndrome because we are people not "unique conditions". And, I never met another person with EDS who thinks having it is "cool". 🕊️

@laurenmansell4346 8 ай бұрын

Ok, I have hEDS, and 2 things…it is a gross overstatement to say that all of us can or could do major party tricks. I was bendier when I was younger, sure, but I was never a pretzel person. I am still significantly affected by the disorder today due to my lax ligaments causing instability and hypermobile joints. As one gets older it usually leads to early and worse arthritis than most, so we can also become stiffer and carry much more damaged joints, and then suffer that pain as well. (i.e. My jaw joints were completely gone, worn away, by age 29. The hypermobility paired with a sleep disorder of night bruxism-extreme involuntary unknown clenching & grinding while sleeping, completely destroyed them. Yes, I wore nightguards all my life. All that’s done is keep me from completely destroying my teeth, but the hypermobility in my joints was no match for that disorder.). Anyway, EDS is a very complex disorder, that involves much more than our joints. It affects all soft tissues in our body, so even our digestive system, eyes, skin, etc. can be affected. Lastly, I would not ever refer to it as a “cool” condition as you did. There is nothing cool about it. It’s painful, complex, and takes many years to get people to listen to you because hardly anyone knows about it. The ones who do don’t know enough. So no offense to you, and I do not mean to sound unkind, but you are unfortunately one of them. Please educate yourself more so that when you are sharing about it, you are doing so accurately. This is how we become unseen, misunderstood, and dismissed by doctors. There is WAY more to look for than a person who can do party tricks or eventually ends up with severe cervical instability, which I’m so sorry your patient has. I have it as well, but so far prolotherapy and PRP have been enough for me to keep things from slipping out and causing catastrophic problems. I hope and pray that it stays that way, but my shoulders are also problematic, and I’ve already had major jaw surgery and facial reconstruction due to hEDS. I’m glad that you can help this young lady temporarily, and I hope she fares well in her fusion journey. It’s true that it isn’t a permanent fix, and that it will further compromise other areas and cause them to become more lax and damaged. Bless her heart, and I do thank you for bringing attention to the disorder. We certainly need it. I hope you will leave my comment up as I have the best intentions. Thank you.

@lilygal4975 Жыл бұрын

Terrible interpretation of a multi systemic disorder. One spinal fusion will lead to another spinal fusion until you become a human plank. May be a good surgeon but flippant and insensitive interpersonal skills create bad patient rapport contribute to medical mistrust. We are all responsible for how our words can affect others, particularly a medically vulnerable, under and mis diagnosed complex group of vulnerable people. Do better.

@inigknot101 Жыл бұрын

First off, you're fundamentally and emphatically incorrect about spinal fusions. Secondly, your interpretation of his interpersonal skills is flippant and insensitive towards the countless patients that have given this man 5 stars on his rapport, me included. See what I did there? This man stops at nothing to help reduce pain in patients. If you've never spoken to him personally, or even bothered to look at his reviews, I wouldn't be commenting on his rapport. Your comments need work. Do better. :))