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Venous sinus thrombosis

Posted , 5 users are following.

sandra79399
sandra79399

My husband had just been diagnosed with venous sinus thrombosis. He is in hospital now. I just need someone to talk to who has been in a similar situation

0 likes, 10 replies

10 Replies

  • Tiger12
    Tiger12 sandra79399

    Posted

    Hi Sandra. I was diagnosed 3 years ago this past June. The clot is gone now adn I am fine except for headaches. I get headaches when I get overheated so I have to watch how warm I get. Since the clot, my body temperature has also run very warm. I don't typically wear anything longer than a short sleeve shirt, even in the winter. My husband finds it kind of funny because he was always the warm one on the couch without the blankets and I was cuddled up in the blankets and now it's the exact opposite. I just recently started working out with a personal trainer in terms of exercise and it's going great! We have kept my headaches at bay and I have become physically stronger and have been able to lose weight. Any more questions, let us know. This support group has been awesome!
    • sandra79399
      sandra79399 Tiger12

      Posted

      Hi Tiger.

      Thankyou for your reply. Its reassuring to hear from others who have had this.you seem to be recovering well.

      Can you remember how you were in the early days and the symptoms you had .

    • Tiger12
      Tiger12 sandra79399

      Posted

      Hi Sandra, 

      I went to the doctor after having a severe headache for three days. It hurt to look at the light, I started vomiting, my whole head just hurt, I just didn't feel right. I told my husband that he couldn't go in to work that day and that he needed to call my doctor and make an appointment. He couldn't get me into my regular doctor so when my husband called, they set up an appointment with a different one. When I saw her, she said I wsa too old (I was 45 at the time) for my first migraine and she sent me for an MRI. That is when they found the full blockage of the juggular vein. I was sent immediatley to the emergency room where I spent the next week in the hospital. They did stroke checks on me every hour (thankfully, none occured as that doctor caught the clot in time). They sent me home on a blood thinner which I was on for the next year and a half. 

      Tha only symptoms I had and have are headaches. Early on, the headaches were pretty bad (behind the ear and across the back of the head). Now, thanks to the medication, I very rarely get them, but when I do, they are still behind the ear and across the back of the head. I asked my neurologist about why I still get the headaches since the clot is gone and even she doesn't know. She told me that all of her patients with conditions like mine, suffer the same thing. 

  • johnhopps
    johnhopps sandra79399

    Posted

    This past June was 3 years from my cvst condition. Even though I had terrible headaches, the clot was not found and was misdiagnosed. The sinus vein wound up rupturing in my head so I had a cvst hemmorhage. I wish mine was found; would've been alot less traumatic.
    • sandra79399
      sandra79399 johnhopps

      Posted

      Thankyou John for your reply. You must have had a nightmare. You still sound very traumatised by it all.

      Was your recovery a long process

    • johnhopps
      johnhopps sandra79399

      Posted

      The ordeal was terrible. Thankfully I survived. If I survived with a hemmorhage, your husband will be fine without. The warfarin didn't work for me. My inr stood low no matter how high the dose was raised. I was switched to brand name and that worked. Brand name also packed on 20/lbs which every Dr denied was a side effect.
  • melanie_11602
    melanie_11602 sandra79399

    Posted

    I'm being treated currently for a superior sagittal sinus thrombosis. I had a seizure out of the blue 2 months ago and went to the er. They did a mri and found the clot. I was in the hospital for a week on heparin then discharged on Coumadin (blood thinners) for 6 months. It's a very scary thing to deal with! Where is your husbands clot located? How is he doing now? Hope all is well
    • sandra79399
      sandra79399 melanie_11602

      Posted

      Hi Melanie.

      Very scary for you.

      My husband had a rapid onset of confusion.I got him to hospital that same day. After a week and various investigations they found two clots in the veins draining from his hypothalamus. This was being flooded as the blood couldn't drain away .this was sat 2015.he will be on warfarin for life ad they can't find a cause for the thickening of his blood. He had had to leave his job. He was a specialist nurse too much stress.

      the confusion lasted 2/3 months the Dr said he would need 24 hr care

      We see him improving every day and hope this continues.

      He is almost back to the man I knew before all this happened. They say it takes time

      to recover from these types of trauma.

      I hope this is helpful.

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