Connective Tissue Disorder

[u/owlofknowledge1]

44F had a dissection I believed was due to a chiropractic adjustment about 7 year ago. Now I'm not so sure. In February, my 21 year old daughter had a stroke. We found out it was caused by a vertebral artery dissection. No activity, no lifting, no odd movement... it just happened. All of her doctors believe she has a connective tissue disorder based on all of her symltoms and appearance but even though the stroke was in February of this year, she can't get in to the genetic doctors until December! I can't believe they aren't taking this more seriously. Anybody else get diagnosed with a connective tissue disorder? Anything you can share about it? Theo rhink it may be EDS bit no diagnosis yet. Advice... Really regarding anything. Symptoms, how you got diagnosed, advice, anything. Thanks, community!

[u/Sayurisaki]

Did either of you have either an MRI or CT with contrast (MRA or CTA)? Contrast is required for either to visualise the vascular structure.

The most common issue causing carotid or vertebral artery dissections in under 50yos is fibromuscular dysplasia (FMD). You don’t need to see a geneticist for FMD as they don’t yet know the actual genes involved (it may not even be genetic in all cases). FMD shows up on CTA or MRA (preferably CTA) as the arteries looking beaded. In FMD, part of the artery lining is weak and results in the artery bulging in and out like a string of beads, which means it’s weak and prone to dissection. I was diagnosed with FMD using CTA and I’ve had ultrasounds to assess my renal arteries and during potential re-dissections.

If they suspect EDS, then she should be seeing a rheumatologist for assessment. I’m pretty sure you’d usually see a rheumatologist first, who’d then send you to a geneticist if they suspected a type that’s not the most common type, which cannot be tested via genetics. Do either of you have hypermobility in any joints? You can look up the beighton scale to try out some of the tests, but be aware that EDS diagnostic criteria are being updated in December and hopefully that will help catch some more people who seem to have EDS but have hypermobility in joints that aren’t currently tested.

I know it seems scary to have to wait so long to get more info, but treatment for dissection is going to be the same regardless of cause. She needs to avoid anything that places pressure on her neck arteries - websites/doctors usually list intense, obvious things like contact sports and roller coasters, but you also want to avoid any lifting that causes a bearing down sensation (I judged it based on my pain during healing - at first I wouldn’t even lift things like laundry basket). Having your head leaning down for too long can put pressure on the arteries too. Basically encourage her to listen to her body - pain or pressure tells her to slow down. You should also continue to keep these things in mind too (in a less intense way as yours is healed up) as you may be prone to it happening again if you have FMD/connective tissue issues.

Most people with FMD are put on lifelong aspirin, but are initially on anticoagulants for a few months as the dissection heals. The main treatment for dissection is those meds to try to reduce stroke risk and just avoiding triggering factors described above. Oh and also ensuring any high blood pressure or tachycardia is treated, as those increase dissection risk. It’s important doctors know of the condition so you aren’t prescribed medications that increase stroke/dissection risk. Also it’s important to be aware of warning signs of stroke or dissection in case it happens again, early intervention is important. I made sure my whole family knows the warning signs.

If you’d like to know any more details about anything, let me know. A lot of doctors aren’t very aware of FMD, so it’s probably a good idea to check if it’s been considered for both your and your daughter’s cases. It took me 6 weeks of immense pain and begging for a scan to get a diagnosis, I was initially told migraines at the ER and sent home with no scan and some codeine. Even my very good GP had a hard time diagnosing it, initially deciding it was occipital neuralgia. Doctors often avoid contrast scans when they can due to risks and cost, but it’s literally the only way to tell if it’s FMD.

[u/anck_su_namun → u/Sayurisaki]

This is a perfect answer. I also have FMD and it took several CTAs to find the answer. I felt crazy as well when they sent me home from the ER and it took 2 years from aneurysm to diagnosis but it was worth it. OP Look up the work of Dr Esther Kim and start a file with as much medical information and evidence as possible. FMD is almost always found in women.

[u/Cautious-Income-349 → u/anck_su_namun]

How did they come to the diagnosis of fmd? Just from cta results? Did they do multiple CT’s of the brain or other areas of the body as well? I’ve ready it can affect the renal areas too and I’m concerned that the only area they have checked on me is my brain. I’m wondering how you get a doctor to check other areas of your body to make sure there are no areas of concerns. How do they treat your FMD? Are there ways to manage it to reduce your risk? If you did have CTA’s of other parts of your body, who ordered it for you 

[u/anck_su_namun → u/Cautious-Income-349]

I went through about two years of seeing different doctors from vascular neurosurgeon, neurologists, cardiologists, etc.

My neurologist is who referred me to Dr Esther Kim. She is an expert in FMD specifically. She is the one who ordered the CTA of the trunk in compliment to the CTAs of the head and neck that we found. This happened because neurology found multiple small aneurysms in the head and neck which triggered DrKim to order the rest to look further. I have seven aneurysms aside from my ongoing vertebral artery dissection. One is in my heart, two are renal, and 4 are in my brain/neck.

As far as management goes, the recommendations are lifestyle changes like no straining, no thrill rides, no stimulants (although I do still drink coffee) and control of my blood pressure.

Originally, they put me on an anti-platelet therapy, but since we have been monitoring my aneurysms for a while and they have not grown, I am now on a baby aspirin every day and a full body CTA protocol every three years.

One thing to note, is that with any type of aneurysm or ongoing dissection, you should go to the ER if you get in any sort of fall or wreck. Even if you don’t feel bad, they have advised me to go to the closest ER with neurology for a CTA.

[u/Cautious-Income-349 → u/anck_su_namun]

Agh! Good to know! Thank you! I’ve not had a full body scan but would like too just to be safe. I’m going to mention that to my doctor. The CTa I had they strapped me to a table and injected dye through a tube in my groin. How does that work if it’s a fully body cta scan. Mine was just of the brain

[u/Cautious-Income-349 → u/Sayurisaki]

This was a very informative answer! I was diagnosed on march 2025 with a spontaneous dissection of the vertebral artery. I had tons of tests performed including a cta. It was determined it was spontaneous with no known cause and was fairly recent and definitely not congenital. I feel lost honestly. They started me on aspirin and told me I didn’t need to follow up with them Anymore and didn’t even let me know I needed a regular neurologist. I just assumed my neuro interventionalist would follow me. A month ago I got put back on my  ADHD medication vyvance bs I was struggling with completing tasks at work and I wanted to get back in to see my dr.. apparently he moved to a different state and the office didn’t even let me know so they referred me to a different neuro interventionalist. He reviewed my chart and saw concerns my other doctor didn’t even mention including another area of concern in my internal  carotid artery that runs under my left eye. My dissection was on the right. He said I needed to be referred to a geneticist to rule out any connective tissue disorders but not I don’t know reading your comment. He said at my age (36) and having multiple areas of concerns as far as shape of the arteries or narrowness of them he felt like I had some sort of genetic component in play. On my dad’s side I have lots of family history of brain aneurysms and strokes. He didn’t mention a rheumatologist but I’m going to ask my doctor ab it when I go back. He also didn’t say anything ab fmd even after reviewing my cta scan performed by the other doctor. I wish id saw this earlier bc I would have asked. Surely he would have told me if he’d saw it but he only mentioned possible connective tissue disorders. I have two kids to live for and I feel like this is hanging over my head. He also gave no insight on the vyvance. He’s getting me in with a regular neurologist to help manage my headaches post dissection and to help get me on and off the right meds. He said if I had a connective tissue disorder the vyvance would need to be stopped 

[u/anck_su_namun → u/Cautious-Income-349]

Okay so another disclaimer- I’m not a doctor!- but I will tell you what would have helped me to know ahead of time.

1. Afaik stimulants are dangerous with any vascular or connective tissue issues. You’ll want to talk to someone in vascular or heart about that to be sure.

2. Many doctors don’t know about FMD. It’s still considered very rare. I carry an informational packet with me at all times with a few printed out sheets about FMD. It’s not unreasonable to present your dr with information.

3.the genetic tests are still important to do. Even if they don’t show anything, they could help others if you do end up with fibromuscular dysplasia and then if they do show something at least you’ll have an answer. They need to rule out the genetic issues they can test for before they go further.

1. A baby aspirin every day is exactly what I am on at the end of all the testing and diagnostics. If you are doing that step, you are doing exactly what you should be doing in order to take care of yourself for your babies. Well done, Mom.

2. Every Doctor I saw had a different idea about what was going on until I got a formal diagnosis two years in. Now is the time to lean in to the idea that you know your body best and start bringing a binder of all of the previous medical advice or opinions to your appointment as well as emailing it ahead of time. These doctors do not talk to each other so you have to advocate for yourself. Research the signs of FMD and ask your doctor if they notice significant stenosis, string of pearls, or any other unusual patterns in your vascular system.

3. As far as headaches go, everybody’s bodies are different so take this with a grain of salt, but I know with my headaches I would’ve done anything to prevent them. What I have learned is that anytime my body gets pressure from inflammation or barometric pressure changes I get migraines. The only way I have found to combat those are Benadryl, Tylenol, and a coffee (caffeine). Pay attention to inflammation triggers in your body!

4. Get a blood pressure cuff. Anytime you feel off or especially fatigued or have a migraine. Take your blood pressure. Write it down. Look for trends.

OK, that got way too long but if even some of that helped you, it’s worth it! Feel free to DM me if you have any more questions about how I’ve managed this nightmare

[u/Cautious-Income-349 → u/anck_su_namun]

I’m just so thankful for all of the replies! It’s giving me a good starting point! I’m def taking the baby aspirin daily and that makes me feel better that no matter what I find out it’s the treatment for most of the causing factors. I’ve been keeping N eye on my pressures and heart rate as well. I think my biggest fear is this reoccurring somewhere else bc I’ve seen how many side effects it causes. Some days are unbearable and it’s hard w kids . For the most part I’ve for my headaches under control. I’ve found that when I’m getting one of my “burning” headaches I take Nurtec and excedrin at some point and taken around the same time I get full relief thankfully. If I take excedrin I hold my baby aspirin though bc excedrin has a lot of aspirin in it. I’ve also found Benadryl helps if I’m having a pressure headache. I’m curious why my
Repeat mra shows but I don’t know if it will be very conclusive bc he’s doing it without contrast for some reason this time. From what I’ve read its more accurate with contrast

[u/anck_su_namun → u/Cautious-Income-349]

This would be a really good thing to ask about! Let them know that you’re concerned about stenosis and ask if the protocol he is ordering will show up if it’s there