Mayo Clinic Connect
I was diagnosed with a CVST a year and a half ago. I’ve been doing well, but it is always on my mind. It is quite rare and I’m interested in hearing stories from anyone who has been through something similar.
Hi I was diagnosed with a large CVST last September. It came as a massive shock as I consider myself to be relatively healthy and young – 23 at the time. Been through 2 CT scans, 1 week of IV Heparin and 7 months of Warfarin. Had my blood tests taken 1 month after coming off Warfarin and they have come back all clear recently 🙂 Was your vision affected at all? I had really bad double vision for 3 months. My vision is still not perfect but am lucky to be alive! It’s great to hear from someone who has had something similar. I think about it every day.
Mayo Clinic has been actively involved in working with the American Heart Association in the development of guidelines regarding your diagnosis. Although the guidelines do not specifically address recurrent CVST, if it would be helpful to you, please see this linked article http://stroke.ahajournals.org/content/42/4/1158.full.
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THANK YOU! This is amazing… Much more information than I’ve been able to find on-line. I really appreciate your forwarding this link to me. I printed out all 71 pages to read through tonight.
Thanks for your note! I was 35 when I was diagnosed and was otherwise a very healthy person. Like you, all of my blood tests came back normal for any pre-dispositions to blood clotting. I was on oral contraceptives, which they feel may have provoked this. I did not have any issues with vision. My only symptom was a horrible headache that wouldn’t go away for almost 10 days. I finally had an MRI and was admitted to the hospital for just under a week and put on IV Heparin. I was on Warafin for 6 months following that. I have not had any recurrences (going on a year and a half now), but am still a bit concerned. I had a 2nd MRI at the 6 month mark and there was slight improvement, but it was not gone yet. I, too, feel very lucky to be alive and credit great doctors for catching this before brain damage or worse occured. Thanks for writing… Touch base if you have any more questions or if you come across any interesting info on this.
Hello, I was diagnosed with CVST last year of March. I had ten blood clots to the brain and had sever swelling. I also had a change in vision, because of the swelling pushing on the optic nerve. I was put on a medication to reduce the swelling, but the vision change was permanent.
First of all, english is my second language so I'm sorry in advance for any kind of mistakes.
4 years ago , when I was 25 years old, after having very strong headaches, an MRI showed I have 3 blood clots in my brain. It happened because I took birth control pills and apparently I have a genetic disorder that causes blood clots.
Ever since then I've been taking blood thinners so I'm no longer at risk but I still suffer from daily headaches.
Ever since then my life changed completely. I had to stop working and take a break from college. I'm trying to get used to it and learn how to live with the pain, and hopefully completing my college degree.
I was wondering if anybody else who suffered from a similar problem could tell me if there's any triggers to those headaches, or things I should avoid doing or eating? And also what helped you cope with it and accept this new reality?
@segalit So sorry your suffering with headaches . Welcome to this wonderful group we all help each other the only thing I can say is do you journal this might help you find any foods that might be a trigger also what you do before your headache starts I only get sinus headaches but someone will chime in .Best of luck
I noticed your message in the Heart & Blood Health group, and moved to combine it with this existing discussion in the Strokes & Cerebrovascular Diseases group. I thought it would be beneficial for you to be introduced to other Connect members who are talking about sinus vein thrombosis.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.
I’d also encourage you to view this Connect video about stroke, https://connect.mayoclinic.org/webinar/video-qa-about-stroke-1/
How are you doing now, @segalit? Have you found some relief from the head aches?
Liked by Teresa, Volunteer Mentor, Lisa Lucier
I am sorry to hear about your blood clots and the headaches that are so bothersome to you. I would like to invite another member, @kweber, who discusses headaches after a stroke.
Are there any medications that have helped with these headaches?
Liked by Kanaaz Pereira, Connect Moderator
I am reaching out to this discussion group looking for advice. My 21 year old daughter is in a NC hopistal with the diagnosis of Cavernous Venmo Sinus Thrombosis. I have several questions that I am hoping someone can answer: my daughter had a CT scan, MRI and an MRA and was told the test were all normal. Unfortunately, it took 4 weeks of doctors appointments and test to finally get her admitted to the hospital. I believe the only reason they found the condition is because the oral surgery from our home town based on Symptoms, told me it could CST?
My daughter went to our local hospital with facial numbness and severe headaches. The hospital did a CT scan that came by normal. She was referred to a neurologist who referred her to have an MRI and MRA which were normal. All the test were done without contrast. We went back to the hospital and focused on the eye which lead to a MRI with contrast. The nurse told us the test was was normal. A doctor came in and announced they knew what was wrong.
It sounds like your condition was picked up immediately. Did the hospital run your CT and MRI’s with contrast or without?
Did your treatment include antibiotics?
I am worried my daughter not regaining her vision in her left eye.
I hope I am posting in the correct group. I honestly can not believe I found this group and hope I can find someone living with chronic CVST. In 2016, I was driving when I became aphasic, had double vision and lost the use of the right side UE and LE. I was on Bluetooth and EMS found me because I was in a company car on the freeway with my left foot on the brake on the side of the road. I was taken to a world famous hospital and the symptoms subsided and while I was being given the NIH stoke test they started again. I was rushed for a CT and nothing showed up. I was admitted for Observation. EEG and additional tests…. nothing. Husband says I’m stressed. Yes, I have stress but nothing that I can’t handle. Hospital gives me Lexapro and I’m to follow up with neurology. Meanwhile, I’m telling them I can’t swallow my food and I had the worst headache of my life and I never have headaches. Fast forward 3 years… I continue see neurology for hemiplegic migraines…and they send me for a MRIa and MRIv and there it is, the Thrombus on the Left side. Now had it been acute, I would have had treatment, now that it’s just sitting there, I can’t seem to get any answers. I’m going for more tests but what do they do? I’m not sure of size or decreased blood flow, but I take daily medication for severe migraines, which I never had before, vision loss and memory loss. I would like anyone to share their experience. Thank you in advance.
Hi @dphillips3108 and @gtownsend. Welcome to Connect.
I wanted to introduce you both to eachother and also to @segalit in hopes that you all can provide support for each other.
@dphillips3108 it must be heartbreaking to watch your daughter struggle so much. How is she doing now? How is she being treated at this time?
@gtownsend those migraines must be so frustrating since you had never had them before. How are you being treated at this time? Can you do anything to lessen their severity?
Liked by Lisa Lucier
I take 200mg of Trokendi and 20mg Amitriptyline daily. I never experienced headaches before that day I have vision loss and daily headaches along with slight memory loss so I make lists. I am so thankful for my neuro team because they continued to support me and look for answers. I know my outcome could have been much loss!! I am just not sure if treatment options moving forward???
Hi my name is Placy
Hi Placy, it’s nice to meet you. Do you have CVST? If so what is your current treatment? Is it acute or chronic?
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