Vertebrobasilar dolichoetasia and aortic aneurysms

Not two aortas! Two aneurysms!

@chuckb - thanks for starting this discussion on vertebrobasilar dolichoetasia (VBD).

Tagging a few members who may know something about this condition and your concern for preventing conditions for which the VBD puts you at higher risk for @scottrl @waynen @dhutch @pks3carlson @hopeful33250.

Hello @chuckb

I found your post very interesting. I had not heard of this diagnosis before. So, I did a little research and found this information on a link from the Cleveland Clinic website, https://my.clevelandclinic.org/health/diseases/22452-vertebrobasilar-insufficiency-vbi

As this disorder is associated with hearing loss, you might also find it helpful to post this in the Hearing Loss Support group, where @julieo4 is the mentor. Here is a link to that group:
https://connect.mayoclinic.org/group/hearing-loss/
What type of specialist diagnosed this disorder? Do you have many troublesome symptoms that you deal with daily?

@hopeful33250
Neurologists and neurosurgeons. I have no symptoms at sll. However, serious events can result such as Locked-in Syndrome if clots develop. The torturosity and difference in size between vertebral arteries creates turbulence that can cause clots. The enlargement of the basilar arter can cause compression on the Pons. Most people are asymptomatic and never know they have it.

This is interesting information, thank you. I have a lot to learn.

I just found out that I have VBD through an MRA to monitor the dominant left vertebral system and diminutive right vertebral artery system that they found last year while looking for something else {eyeroll} I don't have any symptoms, and I hope it stays that way.

I'm doing everything I can to avoid symptoms. Suggestions are welcome. I have yet to see a neurologist, which will be soon I hope. I need answers, one of which is, I have had tinnitus for about 30 years. Is this related?

@chuckb Phone dictation isn't prrfect...!

@bethl203 I would suggest involving a neurosurgeon in your monitoring. Your neurologist might refer uou. Mine did.
VBD can be congenital, the result of hypertension, or an issue with arterial health. Since I discovered I have a dialated ascending aorta and my father died post-op from an aorta aneurysm surgery, I am getting some genetic testing. Routine MRAs at the same facility can give you the data you need regarding growth and compression.
I always get CDs of each scan and report for my own records. Asymptomatic is great and common. If your local doctors don't know much about it, consider finding a higher volume center with experience. It is a rare condition. Best of luck. I never let the diagnosis run my life and am thankful I know I have it.

Thank you for your response and for the heads up about aortic aneurysm. I didn’t know that. My late father told me that they discovered an aortic aneurysm during a heart valve replacement, so I will definitely follow up. He was 88 at the time and lived to be 96 years old. I had Echocardiograms and Abdominal Ultrasounds recently, and none were found, but they can increase the frequency of these tests, if need be.
An MRA found the Vertebrobasilar Dolichoectasia a week ago Thursday, while monitoring a dominant left vertebral system and diminutive right vertebral artery system, which they found while looking for a cause for some cognitive problems I was having. They also found some structural issues in the back and neck, which are being (carefully and passively) addressed. My VBD could be congenital, complicated by chronic hypertension and environmental factors.
I live in NE Ohio and have access to Cleveland Clinic, SUMMA, Aultman, and University Hospitals, which provide world-class medical care. Like you, I take control of my health care and don’t sit around waiting to be sent for generic care and cookie cutter treatments. As a result, I have stayed ahead of potential health issues for me and my family for years.
After rejecting the automatic referral, I researched the best Vascular Neurologists in the area to handle my case, and I found two. I have my referral for them and am waiting for scheduling.
I check credentials, because I realize that half of all doctors graduated in the lower 50% of their class. As a result, I have built an incredible team of talented medical professionals. I also share my CDs across the health care systems I use.
I like the medical alert system that I got through my insurance. It gives me peace of mind. The company also provided a key safe so that the EMTs can get into the house and instructions regarding where to place my medical information for them. I went beyond the normal form and left essential information in a more logical format. This is how I deal with stress. I prepare.

Best of luck with everything. Self advocacy is so important these days. I try to learn enough about an issue so I can have an actual discussion with a doctor and ask the right questions and make informed decisions. At a recent electrophysiologist appointment we had a great conversation and I even referenced a study my EP had not seen yet. My wife works for a medical school and tells me I should have been a doctor. 😀 It's not paranoia to get involved in one's health issues. It's self preservation!