Cerebral Sinus Thrombosis

I had my CVST 5 years ago this past January. What were some of the things you were wanting insight on. Maybe I can help

I also had my CVST 5 years ago this coming June. What some of the things you are looking for. There are some of us that are still active and respond to questions. Please let us know what you are looking to find out. 

I had my CVST 18 months ago so feel free to ask any questions!!

I had a CVST hemmorhage stroke. June is 5 year for me. Feel free to ask anything .

Thanks John, my hubby's headache is gone completely 10 days after the event on the 19th March. We're now a week or just over of no headaches, still on warfarin of course, but no pain relief needed. Saw neurologist for the first time y'day. She's basically discharged him as no neurological deficit, but she said the clot in his head was 'extensive' and that the CT full body shows "possible multiple PE's in his chest". She 9the neuro) is referring him to Opthalmology to check his vision is unaffected (he says its no different to normal). We have to see the Haemotologist on the 18th April where we hope to have definative answers as to whether the 'possible PE's' are actually PE's or if not what they are seeing on the CT! It will of course be indicative of how long he stays on the warfarin for. They took bloods to do a thrombophilia screen but unfortunately they were taken after he started on warfarin and so he'd have to come off it to be re-screened. And of course that's a risk..

Thanks Helen, see my reply to John below, it's easier to write it all once lol

Thanks Tiger, see reply to John below

Thanks Melissa, much appreciated, see the reply I wrote to John, it's easier than writing it all again 

 

Hopefully your hubby continues to improve without the side effects or terrible fatigue. For me personally CVST has been a roller coaster physically and mentally- so prepare for ups and downs. When you think you are doing okay- the next day you can feel terrible. Keep in touch.

My illness was slightly different from most here as my vein ruptured and I had a bleed into my brain. The ER twice missed it even with a cat scan without contrast. If they used dye they probably would've found it. I was semiconsious with ems fire dept taking me out of house. Woke up with a tube being removed from mouth in ICU. Damaged every muscle. Every muscle gets tires quickly especially thighs. The steroids and coumadin put pounds on me. Don't want to sound like cry baby but this is what happeed to me.

Poor you John, you don't sound like a cry-baby to me, sounds like you went through Hell and are still dealing with the fall out? I'm suprised my hubby had no haemorrhage or symptoms given the clot's extensive nature. I'm waiting to see if he piles on weight too, as he's 6' tall, slim and fit right now. He lost 10lbs over the first 10 tens too with not eating due to the pain. I'm worried sick that he has these possible pulmonary emboli (PE's) inside too, which may shift and kill him. The kids are off for Easter next week, and I'm going back to work mornings only for 4 days next week and the week after with the Easter long weekend off. He's going to be coping with an 8, 6, 4, and 20 months old on his own for the mornings. I'm praying its do-able for him and it won't cause exhaustion.

Thanks for the reply Helen, he's reverted to needing an afternoon nap for the last 3 days, after about 6 days not needing a day-sleep. It's fine as I've been off work for 3 weeks dealing with everything. Kids are off for Easter next week though and I'm working mornings (see my reply to John). Unfortuantely I need to work as he's the child-carer and I work during the weeks, and we swap over at weekends and he fits kitchens/bathrooms etc self-employed (so no sick pay for him either!)

Hi Helen, I've replied but it's waiting to be moderated for some reason.

My advice would be for him to rest rest and more rest in the afternoon so he can hopefully keep up in the mornings!!

Yes, that's our plan, thanks

HelloI have been reading your comments and wanted to get an update on progress of your husband. My wife experienced CVST about 18 months ago, so just wanted to see how things are progressing. Here is her story. Thanks!

Hello, 

It has been about 18 months since we found out that my wife had CVST, and it has been a journey. She had just given birth to our second child, and thats when she started having her headaches. She thought it was a sinus infection, so she kept on pushing along, but the headaches became worse. Her left leg started to twitch, so we knew at that time something wasn't right.  We started to the hospital that second, and she experienced a seizure on the way to the ER. Obviously I was terrified and our newborn was in the backseat. I called the ambulance, and they picked her up and rushed her to the hospital. It wasn't long after, that the Dr came to talk to me and let me know she had a clot in her dural sinus. Thinking back, Im so glad they were able to diagnose it so fast. She spent a few weeks in ICU and then acute care after that. She was put on warfarin and keppra for a while, but we were unable to get her INR levels right. They switched her to Arixtra which is an injection blood thinner, but we went with this one so she could continue breast feeding while using this one...this was very important to her. 

It has been a journey regarding her building her strength and energy back up. She utilized a walker for a long time after the event, and her walking was showing much improvement for a while. But after about 12 months, the Dr took her off the keppra, and her walking showed immediate improvement. She still has residual effects when she goes in high sensory places with alot of movement...malls, restaurants, etc. Her head hurts a little, and her left leg starts to get weak. She has been getting stronger, and we are hopeful she continues to get better. Last month she had a checkup with her neurologist, and we found out that her clot had dissolved which we were very happy about. We will just continue working on her getting stronger, and hoping the residual stuff improves. She has recently accepted a job offer starting in August, so we will see how that goes. I feel she is getting closer to where she was, but no doubt there is still some work to go. 

Please give me an update on your situation, and I wish you the best.

 

John,

I had a sinus infection that moved to my mastoid and caused CVST much like your wife. I was in Neuro icu for 5 days. I used a cane when I came home and had severe papidilla. It has been 10 months and I am now working 7 hours per day but tire easy every day. If you or your wife need anything let me know. I still have my blood clot but thankful to be alive. Tell your wife to take her time. I keep pushing forward and the neurosurgeon says it may be my new normal.

Thank you gor the reply. I appreciate you telling me a littke about your story. It has bren 18 montgs since sge was first diagnosed, so i feel we have been taking our time with her recovery before going back to work, but i undetstand she may very well need more. Its just tge financial aspect of this entire situation is starting to take a toll. But definitely her health is number one, and we just want to make the right decision. 

Sorry about all the misspelled words. Lol. Typing on my phone is not a good idea.