My Carotid Artery Dissection with VEDS (Vascular Ehlers-Danlos syndrome)
HTML-код
- Опубликовано: 28 авг 2024
- This video is about my internal carotid artery dissection, which occurred before I knew I had VEDS, or Vascular Ehlers-Danlos Syndrome
The views, information or opinions in the blog, podcast, and vlogs are solely those of the individuals involved and do not represent the opinions of The Marfan Foundation. The Marfan Foundation is not responsible and does not verify for accuracy any of the information contained in them nor does the information constitute medical or other professional advice or services.
Vertebral artery dissection and stroke survivor here- I was dismissed by GPs and emergency physicians for 1 month- 6 years post n I wouldn’t wish it on my worst enemy. Thankyou for sharing your brave story ❤
I'm so sorry you had to go through this, and I'm really glad you finally got a diagnosis that helped confirm that this wasn't all just in your head. I'm a medical student right now, and stories like yours really motivate me to stay vigilant and do everything in my power to help my future patients, rather than just brush off what they're feeling as something normal.
Thank you so much! I’m so glad this can be helpful. I hope you are able to help so many people in your career! ❤️
Considering how you manage to keep beating the ood by not dying or having any stroke-related complications from having ICA dissection for over a year, you are truly the Chuck Norris of cardiovascular resilience-making arteries jealous and defying the laws of medical gravity like a real-life superhero!
This made me chuckle out loud! Thank you!! :)
Thank you for sharing. My first doctor dismissed me, so I sought another opinion and a new doctor. I am blessed that my doctors are listening. Your information will help me communicate my concerns better. I pray healing over your body and peace in your mind.
The fact you had to live so long with this pain astounds me. The fact that doctors kept dismissing you saddens me deeply. I am so sorry you went through this.
Thank you ❤️
I am newly diagnosed. Mine started as pulsatile tinnitus about a month ago and a few days ago, I had a weird occular migraine at work and thankfully I work at a hospital. They immediately took me to the ER and while they think it’s an incidental finding, they found the right internal carotid was dissected and 60% stenosis. No surgery needed. Docs put me on 162 mg of baby aspirin and will repeat scans in 3 months. Doc did say no roller coasters, no chiropractors and no neck massage or intense neck stretching. So thankful and consider myself lucky too.
That’s so interesting - I used to get ocular migraines but haven’t had any since my last TIA when they increased my baby aspirin. I’m so glad you got diagnosed!
Hello, I was diagnosed one month ago. 60% blocked. How is your new scan after 3 months?
bless you, so happy you persevered and got the help you needed ❤
Thank you ❤️
Hi Katie, wow, I’m amazed how long it took to diagnose and how you managed to carry on through all that pain! It’s great that you are sharing your experience to educate others of the condition. I experienced a carotid dissection in April this year and was diagnosed within 4 days (for which I am very grateful of the UK National Health Service). I had absolutely no idea what it was and more importantly how dangerous the condition can be, especially for someone my age - approaching 50! A carotid dissection can present itself in many ways, for me I had severe head pain and Horner Syndrome which most probably helped with the quick referral for a CT scan - different dilation of my eyes. I spent the first 3 months with severe head pain and now I’m 7 months down the road and still not yet fully cured, but making good progress! Early diagnosis for me most definitely prevented me having a stroke - I was very lucky. The reason why I write on your blog is that those who have had the condition ALL usually have one thing in common (although it can present itself differently), and that is head/ neck pain that DOESN’T go away with regular medication! I wish you all the best, and thank you for educating others of such a dangerous hard to diagnose condition.
Hi Steve! So glad you were diagnosed quickly and did not have a stroke!! Wishing the best for your continued recovery! ❤️
Mine is the same as you, I had the half left eye closed and bloodshot and went to urgent care thinking it was bad allergies. Evidently I went to the ER at UofM and was there 18 hrs in ER with a eye exam, CT & MRI and found the dissection and was put on 81 mg of aspirin and lipitor even though my cholesterol wasn't bad. I was told no lifting over 11 kilo's no neck stretches, no more Saturday night smoking and drinking, so I followed the rules and even mellowed out playing my drums. Well yesterday I got a CT scan and was told it healed well and I'm ok, next I'm getting a echocardiogram the 21st then I want a stress test. The arteries are plaque free but need to check cardio. And mate 50 isn't over the hill even kids get dissections , my age I just turned 57 but think 27, probably how I damaged my artery having seaweed fights with my son and his friend back in September at the lake. Throwing wods of seaweed as hard as I can I think I tore the artery, I don't think it's from smoking & drinking on Saturday nights, I could be wrong idk. .
What medication helped you neck pain?
My pain was not managed well since they didn’t know I had a dissection. After several months of recurrent pain I was in pain management using a combo of muscle relaxers, Tylenol, NSAIDS, cortisone injections, etc. I am not sure what route they would’ve chosen if they knew I had VEDS and a dissection at that time.
I am so glad to find this video. I had a carotid dissection in January 2020. I was misdiagnosed after having a stroke. They told me my cholesterol was high. It wasn’t but 2 weeks after that i was having stroke symptoms again and they realized it. It has since healed but i have flare ups every now and again. Good luck on your recovery.
I’m so glad you found the answer for your stroke and that the dissection has since healed! ❤️ I’m now almost 3 years out from my last TIA :) thank you so much!
@@TranslucentOne mind if I ask if you experience stroke symptoms after healing? My doctor said i would have residual symptoms for the rest of my life. Unfortunately I don’t know anyone else to ask their experience.
My TIAs were deemed not related to my carotid dissection- they thought it was a smaller vascular injury that was too small to show on a scan. They came on some time after my carotid dissection healed. I hope this helps! It was hard to figure out why I was having these.
@fumaclan08 I have had TIA type symptoms since my dissection in 2014... just in the last year the Mayo, (after telling them the research I found) Clinic confirmed intermittent reverse blood flow in the vertebral artery... but offered no solutions. I'm having more frequent symptoms so this year I'll try going to the Cleveland Clinic. I hear they are better and more compassionate about finding solutions.
thanks for the informative video! As a healthcare professional you helped me to remember what other signs/symptoms to ask for when someone presents with severe head/neck pain. So sorry to hear about your experience, hope you're doing well now! :)
Wow Katie what a journey- so happy you are stable after your dissection and feeling better. As a medical imaging/ultrasound tech, I was impressed with the accuracy of your commentary. Bravo!
Thank you!
Wow. Shocking. So sad. I’m sorry you had to go through all this. So telling about our medical system. Glad you’re still here. Just wow.
Thank you ❤️
I really appreciate your long form story. It was very helpful for me. I’m not sure if this is what I have but i definitely needed a video where someone actually explained the feeling of the dissection in detail.
I’m glad it helped!
Thank you for sharing your story
I'm recovering from a traumatic brain injury caused from a very serious car accident. I got a dissection of the carotid artery I was unconscious for a month and 3 days.
I will never drive next to a box truck ever again.
Im so sorry you went through that ❤️
Wow! Thanks! I have a dissection in a similar area thanks for doing this video
Hi, Katie! Isurvived a massive stroke in 2018 at 41from dissections of both internal carotid arteries and my right vertebral artery causing a right middle cerebral artery infarction. I recall having shard pains in my neck and inability to move my neck for about 2 days in law school roughly 7 years prior to my stroke. Genetic testing didn’t reveal VEDS or any other connective tissue disorder, so ¯\_(ツ)_/¯ as to the cause of my dissections.i had other episodes of neck/trap muscle pain and headaches/migraines. Your videos are informative and welcoming; Sharing your story may save lives. Thank you for sharing. I feel inspired to share my story now.I do have tortuous arteries, which docs believe might be a connective tissue disorder-in my neck looks like spaghetti thrown on a wall.
I hope one day you get an answer and I’m glad they’re still following you for connective tissue disorder in the meantime. Also what a big deal surviving that stroke! Sending a lot of love. ❤️
I'm sorry you had to deal with such horrible pain for such a long a time. Sharing your experience helps me feel better. I've had some neck pain recently that was concerning me but it wasn't severe or intense. I really thought it was ligament issues and I still do think that. But having VEDS I worry it was something else. The pain has subsided. And your story helps me feel a bit more relieved.
All the love, Tara! I hope it wasn’t anything like this. Sometimes it’s so hard to tell and can be so anxiety producing having VEDS and wondering. ❤️❤️❤️
I hope you are still well. I started with a bout of intractable vomiting that repeatedly sends me to the ER. They were devastating to my system causing chemical imbalances and driving me insane as in the inability to think and process correctly a year of testing including an MRI where plaque was noted and a CMT which showed plaque but ejection rates unremarkable to be seen after a year without insurance where I did NOTHING and it helped :o Recently, an endocrinologist CIMT showed blockage of my caroiteds of 88%. I am just beginning this phase but I'm a log way from when I was saying "My head isn't right, there is something wrong in my head" Some of my other doctors insisted I was just dehydrated
You have been through so much. It’s so frustrating to be dismissed early on and then find out it was serious all along. Sending well wishes to you ❤️
The first ER doctor was irresponsible and should be barred from medicine!
The Angels had you wrapped up in their wings! Oof, that’s serious stuff! Sorry you had to deal with that! But most of all I am glad you got your diagnosis!
Thank you so much for all you do. It means so much to know someone out there understands. I hate though that means you also are afflicted with this disease. I was diagnosed with an internal carotid dissection a few years ago as well. Its stable and I also just get a scan every year.
Thank you for sharing this with me ❤️ I’m glad your dissection is stable too!
EDS sufferer here. Went through 2 long labors, 24 hrs and 31 hrs, no epidural. Migraines since 9yrs old, syringomyelia, chiari 1 malformation, scoliosis, neuropathy etc... If you consider labor pain a 10? This neck pain goes from 20-50. I am not exaggerating. This pain is a pain that is impossible to live with.
I am so sorry this happened to you.
I have EDS Spondylodysplastic (spEDS) but have cardiovascular issues that are more common with VEDS. I have a lower abdominal aortic dissection. As well as small aneurysms in my neck and my heart. I didn't get my EDS diagnosis until after the dissection.
So glad you survived the dissection and got a proper diagnosis ❤️
@TranslucentOne thanks. That was a Rollercoaster. And EDS has been as well.
Back story about Two years of Cronic migrains where o would lose the vosion completely in one or both eyes, and vagral syncope at random, cartioloigist said my heart was fine, so we just treated the headaches, and hoped the sycope would stop on its own. This year, this month was taken to the hospital on a Friday with BP 250/140 extreme pain in my neck, had a coratid artery dissection on the left bit the right was cleared. Was free to go home after they got my blood pressure down to 170/110. Im 34 there was no injury and no reason we could find, so it was considered spontaneous. I felt okay over the weekend bit by monday i couldn't get out of bed I was so dizzy, back to the ER i went this time they found a dissection on the right and had me transported to a hospital that specializes in strokes, when i arrived it was noted I had weakness in the left side of my body, slightly illregular speech and some memmory problems, i had had a minor stroke. Nobody jas been able to tell me why, i have seen neroligists Neurosurgeon, cartioloigist and my PCP, next os a vasular spesialist more nero doctors and a genetics specialist, i find ot wierdly comforting to know im not alone in this giving all me doctors had said they have never seen anything like it, i dont know if I have what you have or something else yet but knowing I not alone really helps!
I hope you get some answers ❤️
It's sounds like a lot of doctors are terrible at their jobs. They constantly gaslight and don't listen to the patients
Sounds like my vetebral artery dissection. I’ve wanted to see a chiropractor for so long but no chiropractor will touch me because of the aneurism in my communicating artery and the one behind my right eye. The vascular surgeon won’t go after my aneurisms because they are afraid they’ll do more damage. I so wish I could be adjusted. I take a muscle relaxer, dilaudid and a hole bunch of other stuff. Still only sleep a few hours. I swear when doctors look at my records they either look terrified or look at me like a science project. I have so many specialists who follow me which is good but recently my PCP decide to move and I had to see another PCP there who talked with all my specialists) cardio, 2 neurologists, GI and hematology) to help understand my condition and this new PCP wants to send me to a psychiatrist because I am so anxious, (I take Ativan when I have a panic attack) and she thinks all this anxiety is “all in my head “ and I need to deal better , she’s right in one respect it is in my head, 2 aneurisms that are time bombs, wonder how she’d feel with 2 little bombs in her head. I even named them, bob & bing! Mainly if I don’t make jokes or laugh at my condition sometimes I would go crazy. Anyway thanks for sharing your story , stay strong
Thanks for sharing this with me. Definitely sounds so frustrating and I can appreciate the humor you use to get through it. Wishing you all the best! ❤️
I also had a vertebral dissection from the left side 2 month ago and after one month had dissection from the right side. I also had a panic attack everyday. How do you feel now?
How are you doing now? I'd be curious too.
@@candaniel I hang in there,have doctors ants often to watch my “little friends” 😹 day by day is all you can do.
Thank you for sharing your videos and I hope you feel better soon and you are not alone. There's many of us going through something but it's different medical situations. You are looking great 👍👌 just take it one day at a time best of health and happiness to you and others that are going through the same situation as you and other medical conditions
Thanks Vance! I am doing a lot better now that the dissection is healed and the pseudoaneurysm is stable. Happy to share what I went through in case anyone out there is going through it and feels alone. Thanks for watching and wishing you all the best!
Hi, my condition is similar to yours. I went to ER & I got dismissed when I mentioned artery dissection. They said someone who have this won’t be talking like this & was able to walk. I’ve been wondering what happened after a chiro adjustment at the same area on my neck, i searched online what is the danger of chiropractor manipulation and they are articles that said it can cause dissection.
I felt my head was going to fall off too & sleeping is really tough. So I asked my housemate to show this to his cousin who works in ER. She said very unlikely too. At this point I have no idea what I should do next because I went to ER a few times & got painkiller injected or dismissed with pain killers.
I’m now on painkillers & anti depressants to deal with it. My case was dismissed because my mri has slight degeneration only. But this was before I went for chiro manipulation. I went to Orthopedics & neurosurgeon, neurologist. It has been tough dealing with a severe neck pain & spasm. It started off with an injury & after k took pregabalin, my neck start to spasm. I got much better in the beginning with the help of tcm & chiropractor. But all went downhill after the last adjustment & when I pull my hand out one day half of my face has frozen / numbness. Since then when I sleep my head on left side will be numb. I turn another side one day & i felt something goes up to my head & I puke. Er dismissed it saying it’s just migraine. But this spinning now happened on both left n right non stop. Is there a test that can be done to show artery dissection. I’ve been spending alot on seeing docs because I have no insurance. I called up one hospital and enquire. They too think it’s not possible n immediate surgery has to be done if that’s the case.
Thank you for sharing your story. For months now from one injury & going to one after another doc. I can’t show this video to doctors or show them the picture because some doctors dislike it when we try to diagnose ourselves but it’s tough living like this without a diagnosis. One doctor even told me I’m totally fine. Because he saw benzo dependent on the record. I had muscular & nerve pain in my body recently. Finally one doc found the reason for it. My vitamin d was low. But my neck issue isn’t related to that. He didn’t dismiss any other possibilities that is causing the neck pain. I went for physio 3 times & stopped now.
Can I ask how did you tell your vascular doctor about ur situation. At the moment from the 2 hospital, they all think it’s a life threatening condition & it isn’t possible to live for a month with it.
Hi there! I’m so sorry you are going through this and you feel not believed by your doctors. My situation was a little different because I finally got into vascular after my VEDS diagnosis, and with VEDS the plan was to get a CTA or MRA of the arteries in the body. So in that situation, even if my new vascular doctor hadn’t believed me, the dissection would’ve showed up on the scan.
You may want to reach out to the help and resource center at The VEDS Movement and see if they have anyone else near you they recommend trying to get in with. Just a disclaimer, I direct The VEDS Movement but this channel is not associated with it. I just really believe in our work and hope it can help. ❤️ thevedsmovement.org/ask
Had a dissection 2 months ago and the when I went to the emergency room with BP 225 / 125 they immediately put me through to MRI then MRA and CT scan diagnosed on the spot! This is in Europe…different medical system here. Sorry you had to go through so much!!
Still now in healing…process with Horner Syndrome as well out of which an otherwise perfectly healthy “me” has elevated blood pressure
Btw, I was told that people that have had Covid are among the people that often get this spontaneous dissections! I do have some antibodies, and possibly have gone through it in the beginning of the Rona era? Did you? Doctors have exempt me from having vaccine right now as well.
I am hopeful and grateful!
Thank you for your story…I am looking for people like me to see prognosis and what Therapies they are under and what medicine they take. Any advice?
Hi! Sorry you went through all that. I hope your recovery continues in the right direction ❤️ I have not had Covid and am vaccinated. My carotid dissection happened before the pandemic by a few years.
There’s a growing community online of people with VEDS who have had these spontaneous dissections. Have you already been evaluated for VEDS or other connective tissue conditions?
@@TranslucentOne good to hear. No, not conclusively with biopsy and all, but seems no vEDS although I was screened.
How do you feel now? Any changes?
Hey there! Not sure if you’re asking me or Anastasia, but if you are asking me, I’m doing good! My dissection is still stable
Hi, I'm so glad you have finally recovered.
Lately I've been experiencing random headaches, stiffness on my neck and feeling nauseous all the time.
My question would be, what were your synonyms prior to the major headaches you experienced? If you recall?
Thanks and many blessings
Hi! Sorry you’re going through this. I had sudden onset severe pain as my primary symptom. The headaches behind the left eye come and go still, but the first symptom I had was that sudden onset severe pain. Hope this helps!
I've been struggling for the last 5 years with something very similar to what this sounds like and all testing has come up negative other than having swollen lymph nodes early in the sickness. It all started after a bottom molar extraction.
Hey Katie!
I empathize with you ..all you had to go through to get your diagnosis and i am so glad you are on your path to recovery ((hugs)).
Furthermore Katie,i would like you to explore the fact that God offers miraculous healing as well(1Peter2:24)
Thank you!
Thank you for sharing so others of us can spot signs, and for your positivity. I have been told I have EDS3 but after waking one day and having the room spinning any time I tried to get up, making my eyes dart side to side, I felt something was off. It resolved after about 5 hours. About a year later I had this intense attack of double vision where my eyes could see fine individually but not converge. Eventually I was sent for a CTA which confirmed a looped internal carotid on the right side and torturous internal carotid on the left side. Since then I get stabbing pains that aren’t very severe or deep aching in the internal carotid pathway and also hear whooshing in that ear when standing and sometimes bad head pressure. I also get pain behind that eye. But given the CTA showed no dissection, I’m not sure what else to do/if the spinning was related?
That sounds so scary and frustrating. I’m not sure if there’s anything else to check, but the VEDS Movement has a nurse in the help and resource center that may be able to help provide suggestions or a doctor familiar with these conditions near you to help. I hope you can find answers and a resolution! Thevedsmovement.org/ask
This is some scary shit. Glad you're okay! What was the treatment after they found your dissection?
Thank you! I get scans on the pseudoaneurysm yearly to monitor for any growth and I’m on baby aspirin to make sure it doesn’t develop clots. It’s a small pseudoaneurysm, and luckily it’s been stable in size for several years now 🎉
@@TranslucentOne Thank you for sharing your story with us!
I HATE THEM FOR NOT TAKING A CT SCAN!
Hello! I congratulate you for your videos, they give so much support to a lot of people. Just one question, What did you do with this disection and pseudoaneurism, how did the pain go away, you had a surgery or some medication?
Hi Gaston! The pain went away on its own after I got the clue in that it might be a dissection and stopped doing so much stretching. I think i must have been stressing the injured artery, but that’s just a guess. I did not need surgery as the pseudoaneurysm has remained small and stable in size since it was found on the CTA. Hope this helps!
@@TranslucentOne Yes, of course it helps, thank you very much for your answer!
Hi, I just found your video after having my own carotid artery tear and feeling all the symptoms you felt. Watching your video has helped me have a little peace of mind because it is scary and it’s definitely something to take seriously. I do have a question… did it cause you you have horners syndrome and did they give you any kind of medication to take for the dissection?
Hi there! I’m so sorry you went through this too! I did not have horners syndrome. The dissection was diagnosed over a year after it happened, so I got very lucky. They added baby aspirin every day when that dissection was diagnosed.
Hey if you please don't mind could you explain how you could diagnose it and they symptoms? I am a lean 23 year old female and i have anxiety, keeping that apart I can see my pulse clearly, the pulse on the neck exactly the carotid artery location, it feels like it's more visible then the left. Now I'm panicking. Please send me your help.
I've been to a cardiologist, did carotid doppler test, which is said is normal, but I can visibilly see the bulge which is slightly more then the left.
Hi there ❤️ my dissection was diagnosed with a CTA of the head and neck, which was ordered by my vascular surgeon. I do not have any visible signs and I’m not sure if yours are symptomatic of that because I’m not a medical professional. I’m sorry I can’t be more help! I’m glad you’re already in to see cardiology and hope they can help you more.
I have suffer vad in 2022 with only 27 years...😢
Ah I am so sorry you had one of these! I hope you recovered well from it
Hey if you please don't mind could you explain how you could diagnose it and they symptoms? I am a lean 23 year old female and i have anxiety, keeping that apart I can see my pulse clearly, the pulse on the neck exactly the carotid artery location, it feels like it's more visible then the left. Now I'm panicking. Please send me your help.
I've been to a cardiologist, did carotid doppler test, which is said is normal, but I can visibilly see the bulge which is slightly more then the left.
Thanks for sharing your story. I see some prominent muscles on either side of your neck. Do you happen to also have lordosis of your cervical vertebrae?
Hi! I’ve never been diagnosed with that.
So typical doctors, when you actually have something serious they don't take you serious.
Hey Katie,
first of all thank you so much for your video and sharing your story! Its really incredible what you have experienced!
I have intense neck pain on my left side since 7 days that i have never experienced before. It is often said that carotid dissection causes always headache. This i dont have, only the intense nack pain left. Have you had headache or mainly the neck pain?
Many greetings from germany :)
Hey Christina! At the beginning I didn’t have what I would describe as a headache. Just extremely intense pain. Because of where the pseudoaneurysm is now from of the dissection, I do periodically get headaches behind my eye. But that’s more of a chronic, after the aneurysm formed from the dissection thing. Hi from Washington! :)
Hi, did you experience ear popping all the time?
I don’t think so with the carotid artery dissection
I've had a stroke and heart attack that paramedics misdiagnosed for 2 days in a row where I had to have open heart surgery and a bypass the very next day and now I'm so paranoid every time I have any symptoms. It sucks.
I forgot to mention that I was only 36 at the time so I understand why they wouldn't have considered that but I was adamant about what was wrong and was basically told I was a hypochondriac.
I’m so sorry you went through this, Joshua!
Did you also have inflammation in front neck muscles? Slight pain in neck area while swallowing?
Not that I remember
@@TranslucentOne ok
Wow, we really have some amazing doctors, NOT! I had a dissected aorta in 2014 it had taken up to recently for them to figure out the intermittent reverse blood flow of the vertebral artery that causes such bizarre symptoms... and yes, that was after I got my records and spent hours pouring through the internet to figure it out and ask them to watch for it during my yearly testing. So far they aren't doing anything about it... just told me to try and hold on to something when it happens so I don't get hurt again. I guess I'll have to research the process to correct it and see if I can find a doctor that is skilled enough... not an easy task in the states .
Oye I am so sorry you are going through this! Where are you in the states? There is a help center at The VEDS Movement that can help you find a doctor familiar in VEDS/Marfan/Loeys-Dietz and aortic dissections. I hope they can help! TheVEDSmovement.org/ask
I went on a bunch of roller-coasters is what happned to me.I have chiari malformation so i shouldn't have been on them to begin with.Half of my ear is pins and needles.I have numbness down part of left side of face and under lip by chin.I never had it before the roller coasters.The doctor says i need a 2nd ct scam of the arteries to see if there is a dissection .He suspects there is.
Fingers crossed for good results from the Ct scan! ❤️
They only did a ct scan without looking at the vessels.Once that came back normal they wanted to repeat it with looking at veins.It was so late i didn't do it.I should have but didn't. I am going back becasue something isn't right.The ear ringing is constant and hasn't went away in a week.It is 24rs a day.I do feel dizzy and something is very off.
Glad you are going back!
4 years Ago I developed severe pain and pressure on the both side of neck below ears I went to so many Dr's they thought I was having a ear pain and one day I was lying down in bed I had a sudden blurr vision and started ti have have severe bleeding under the skin I think it was because of blocked arteries
That sounds so terrible! I’m so sorry you went through that
Where was the pain you felt at in your neck? Was it in the front or back?
It was hard to pinpoint an exact location, but I think I experienced it more on the side/overlapping with the base of the head in this case for me. Given that it was several years ago for me now, what I really remember most was the sudden onset, tearing pain without explanation.
Wow, thats pretty disgusting that they just kept saying you had muscle spasms. Dizzines, with nausea and vomiting are huge give away signs that so many of them missed. This really isnt good enough.
The fact the doctor didn’t feel comfortable ordering something is disgusting.
Doctors shouldn’t be able to do that. I had my primary care doctor not order testing for my bones because she “didn’t see anything and she has to be able to see it.” Even tho problems run in my family, pretty foolish I thought.
I do feel like the medical system is set up poorly if a doctor doesn’t feel comfortable ordering a test. I’m sorry you have gone through that with your bones.
It's because of money. They only want people physically close to dying to use equipment. So corrupt
Hello, I definitely have the same thing , I cracked my carotid artery once by stepping 2 steps down and I felt an intense pain.. I hear the shoosh sound but my question is ….
Should I do a surgery ? I don’t have pain, neither headaches ..
Hey Kostas! I’m sorry you are going through this. So painful. Mine didn’t need surgery, but I know everyone is different. Definitely a decision to make with your doctor!
Could you please share which segment of your internal carotid artery has the aneurysm and what is the size of the aneurysm?
Hi! Not sure about the first question, but it’s 6 mm pseudoaneurysm.
Did you have a CTA with or without contrast?
I think it was with contrast but I don’t remember for sure
Do you have any hearing imbalance when you turn your neck?
I don’t think so
I’m suffering with same issue. My right artery is blocked above 50%. Is it normal or do I get a surgery for this condition??.
Hi! Mine still has enough blood flow through it- I think it’s probably a case by case decision with a vascular or neurosurgeon. Mine is normal in the sense that these and other artery dissections are normal with Vascular Ehlers-Danlos syndrome, a genetic condition I have. Wishing you the best with your dissection! ❤️
@@TranslucentOne I’m with my cardiologist and he referred to cardiology vascular due to 50% right veritable artery blockage and 55% left subclavian artery. I’m suffering with dizziness, double vision, unbalanced walking etc.
@@5050toms I hope the vascular specialist will have some good information for you and that your symptoms will be resolved.
@@TranslucentOne Thank you so much for your advice. God bless you.
Hi Kate, how long did your dissection take to heal? Glad you are okay.
Hey there! Thank you. :) It was a long process when I didn’t know it was a dissection and was doing a lot of physical therapy and stretching. Once we thought it might be a dissection I was advised by my doctor to stop that and I think it was a few weeks later it started to feel a lot better? It healed into a pseudoaneurysm, so I still get monitored every year with a CTA or MRA to watch for growth. Hope this helps!
@@TranslucentOne Ya you're lucky girl I was warned against any physical stress on it, even no lifting over 11 kilo's, no silly yoga, neck chiropractor no more Saturday night smoking and drinking, etc. This was in September, yesterday I had a CT with the contrast and got a call today and it's healed. I had a headache for about a month, only once it was bad enough to take Tylenol. occasionally I get a little pain in my left side neck but don't know if that's still from the old injury or if it's from old pillows and this 30 year old bed I sleep in! Ya you're lucky you were on deaths bed almost. Did anyone speculate how it happened to you? I think it's from throwing hard balls as hard as I can (I'm left handed) at my son at the lake. It was actually seaweed balls, I was acting like a teenager not a middle aged man playing with my son (he's 21) and his buddy.
Hey again Ken! Missed this comment at first. Mine was a spontaneous dissection due to my underlying VEDS diagnosis. Glad you’re on the mend!
@@TranslucentOne I lost you what was the speculation why you got a artery dissection?
I just found out I have moderate blockage in my right side carotid artery. Lifeline screening found it. I'm go in ng to a cardiologist soon.
I hope your follow-up on that goes well ❤️
Hey if you please don't mind could you explain how you could diagnose it and they symptoms? I am a lean 23 year old female and i have anxiety, keeping that apart I can see my pulse clearly, the pulse on the neck exactly the carotid artery location, it feels like it's more visible then the left. Now I'm panicking. Please send me your help.
I've been to a cardiologist, did carotid doppler test, which is said is normal, but I can visibilly see the bulge which is slightly more then the left.
I'm currently trying to figure out what is causing many unrelenting chronis pain in my head and neck and am experiencing the same dismissive answers from doctors. My MRI was abnormal showing "ischemic changes most likely" they said and no further testing is necessary. My headaches are at the base of my skull and behind my eyes and 1 to 5 days out of the week. When they say "it's all in your head" that's literally true lol. Constant pain in the head and neck makes living life everyday a struggle and I'm so glad to hear that you were able to find the cause! This gives me hope that I desperately lack due to doctors insisting that my bloodwork and scans prove that there's nothing wrong. I'm going to look into finding some kind of vascular specialist to see if that might be what's going on. Thank you for sharing this!
Wishing you the best in your search for an answer!! I hope you find it and it can be resolved very soon ❤️
you should pin point where is the area of the neck.
When it happened, I couldn’t pin point where it was. But the dissection is actually in the carotid inside the skull.
Will a CAT scan show this Disection?
Mine showed up on a CTA of my head and neck. Hope this helps!
My Corotid artery on the left of my neck happened in September, they don't know how, (I was 56) I also got Horner's syndrome from it with half my left eye closed and part of my left side of my tongue muscles wouldn't work. Today I was told with a CT that it healed but not 100% my eye. I had headaches but not as bad as you in pain. I was told no lifting (before it healed) more that 11 kilos , no drinking no smoking etc. So are you saying that sleeping wrong on your neck caused this????
Hey Ken! I’m so sorry you went through all that. And I’m glad that it’s recovering! My dissection was caused by my (at the time undiagnosed) VEDS. Turned out it was nothing to do with sleeping at all! Just something that can happen to my arteries because of that genetic condition.
@@TranslucentOne Genetics, naw I don't believe that I could be wrong but I think most dissection is caused by some kind of physical exertion like me throwing seaweed balls as hard as I can at my son playing in the lake like I was 16. I used to be able to throw a hardball over 80mph ..when I was 30 lol now I'm 57. They told me I have to stay on 81mg of aspirin and 20 mg of Lipitor even though my cholesterol isn't high it's insurance if you will. I also got a pass to play my drums, I also wondered if jamming caused the dissection and she said she doupts it. I played three hrs today sweating and I'm ok. I didn't say I also got "Horner's syndrome from this that's probably what saved my life with my left eye half closed like Pink eye with strange headaches that were different from my allergies
VEDS is a genetic condition known to cause spontaneous artery dissections and other life threatening things like bowel perforation. for my case VEDS was the reason, but it might not be for you! Check it out
@@TranslucentOne They don't just dissect sitting in a chair in perfect health I don't believe that. People have to actually do something to cause some kind of force, well the 24th I go to get a echocardiogram then after schedule for a stress test, I want to make sure cardio wise I'm ok. Now people drop dead on stress tests so time will tell. See you. in the next world 💐
Hope your stress test and echo go well!
Wow I still have a dissected carotid I’m 33
❤️
@@TranslucentOne I’m still recovering from my terrible stroke at age 32. It has been so hard for somebody that was very tough. we are still trying to figure out what caused it. It’s been a huge mystery. I do have EdS supposedly…
So basically there was no surgery needed for you ?
That’s correct in my case
I think I have VEDS, I am currently suffering from a vertebral artery dissection
I’m so sorry you’re going through that dissection! Have you explored ways to get tested for VEDS? I remember my carotid dissection being incredibly painful. I hope your pain for the vertebral dissection is being managed ❤️
Hey if you please don't mind could you explain how you could diagnose it and they symptoms? I am a lean 23 year old female and i have anxiety, keeping that apart I can see my pulse clearly, the pulse on the neck exactly the carotid artery location, it feels like it's more visible then the left. Now I'm panicking. Please send me your help.
I've been to a cardiologist, did carotid doppler test, which is said is normal, but I can visibilly see the bulge which is slightly more then the left.
What were some of your symptoms before it got that bad? 22 and I’m experiencing some much pulsating pain in my right artery and dizziness, my carotid artery beat is so hard!!!!!lightheadedness etc no insurance tho so don’t know where to go from here
Hey there! The symptoms of my carotid artery dissection were very sudden, so there weren’t any precursor symptoms. It was sudden severe pain. I’m so sorry you’re going through this! I’m not a doctor and this is not medical advice. Have you considered the emergency room?
Its not heal itself ?
Hi Shai. My carotid dissection healed into a pseudoaneurysm, which has remained stable for several years now. So it healed, but has an aneurysm there.
@@TranslucentOne
What is considered more serious aneurysm or dissection?
Can't the aneurysm heal on its own and the artery will be completely healthy again?
I don’t know which is more serious- from my understanding they both are serious with their own set of risks. I also don’t know if an aneurysm can heal on its own, I’ve never heard of that. Sorry I can’t be more help!
@@TranslucentOne
Thank you very much for the comments, I'm glad you feel well and I wish you perfect health
I’ve been in med device sales for 15 years and support carotid stent procedures.. I can tell you that both manifestations are very serious and aneurysms don’t heal on their own. If they become significant there are covered stents and grafts that Drs will implant. Those seal off the aneurysm.
I know the wooshing sound. Getting a ultrasound in 6 weeks.
Help, I come from europe and my health anxiety is on highest levels ever since I found out about this disease. I dont move my head to left and right for a few months now. I got high muscle tension which freaks me out even more. Every twitch in my throat makes me believe I got a a dissection... Every time I get jump scared by something I get a panic attack because I think about how I moved my head and if I could get a dissection because of it. Do you have any idea what I can do to loose this fear? Its getting worse and worse
I am so sorry you are going through this. Where in Europe are you? There are some virtual support groups through The VEDS Movement, the Ehlers-Danlos Society, and I believe Annabelle's Challenge (for those in the UK). I have found that connecting with others has helped me, but some people have also found help through a professional counselor or therapist. VEDS is a scary diagnosis- you are not alone in that feeling.
@@TranslucentOne I didnt got diagnosed with VEDS. That's one of the things, I am just scared of a dissection in gernal without having higher risk for it :/
Ohhh I understand. Yes a dissection is scary. Perhaps there are support groups for other people with health anxiety you could join? Big hug from the US
That's why I dislike primary care doctors. It's like they just guess and charge you mass amounts of money for no reason.
More education and awareness needed in that realm for sure! And maybe more support so they don’t have so many patients and can give each one more attention.
Your right shoulder sits a little higher and forward . See how you have that wrinkle in your shirt..
It's telling..
I worked for a chiropractor that wouldn't let you leave til you looked in the mirror to see if your shoulders were level .
It’s not recommended to see a chiropractor with VEDS bc the arteries are fragile. So you’re probably right. I also have some minor scoliosis. 🤷♀️
@@TranslucentOne
massage may help..
When I injured my neck after a car accident I used the chiropractor massage and traction.. after 15yrs the best was the traction.. because it was gently pulling the vertebrae off the nerve .
They always give you muscle relaxer these doctors really suck
I think if we had known I had VEDS it would have been different, but it was definitely so frustrating
My neck is going thru this
I’m so sorry you’re going through this. This pain was the worst for me. I hope it resolves soon for you!
My boyfriend has this he has had 4 strokes though small he has weakness on da left side
Hey Crystal! Thanks so much for leaving this comment. I’m sending you and your boyfriend all the best ❤️
+
This is horrifying
Yeah, it was a pretty rough experience for sure