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.

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 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.

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!

bless you, so happy you persevered and got the help you needed ❤

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!

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.

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.

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.

Thank you for sharing your story

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.

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.

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 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.

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

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!

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'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.

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

Oh no, I'm sorry you went through so much. I'm thinking thats what I have, I didnt have this pain like yours until I went to the chiropractor who snapped my neck, all of this over a neck pop. So do you know if the cta or mra shows more, and did you get contrast ? Thank you, so glad I saw your video...

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

Wow! Thanks! I have a dissection in a similar area thanks for doing this video

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.

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?

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.

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!

This is some scary shit. Glad you're okay! What was the treatment after they found your dissection?

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?

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?

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.

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?

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 ..

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

Could you please share which segment of your internal carotid artery has the aneurysm and what is the size of the aneurysm?

Where was the pain you felt at in your neck? Was it in the front or back?

Did you also have inflammation in front neck muscles? Slight pain in neck area while swallowing?

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 Kate, how long did your dissection take to heal? Glad you are okay.

Did you have a CTA with or without contrast?

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)

Do you have any hearing imbalance when you turn your neck?

I have suffer vad in 2022 with only 27 years...😢

The first ER doctor was irresponsible and should be barred from medicine!

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

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????

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??.

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 :)

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.

Will a CAT scan show this Disection?

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

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 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 HATE THEM FOR NOT TAKING A CT SCAN!

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 .

you should pin point where is the area of the neck.

Its not heal itself ?

So basically there was no surgery needed for you ?

My neck is going thru this

I think I have VEDS, I am currently suffering from a vertebral artery dissection

I know the wooshing sound. Getting a ultrasound in 6 weeks.

So typical doctors, when you actually have something serious they don't take you serious.

Wow I still have a dissected carotid I’m 33

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.

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.

They always give you muscle relaxer these doctors really suck

That's why I dislike primary care doctors. It's like they just guess and charge you mass amounts of money for no reason.

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 .

My boyfriend has this he has had 4 strokes though small he has weakness on da left side

+

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!

This is horrifying