1. < Stroke & Cerebrovascular Diseases

Cerebral venous sinus thrombosis (cvst)

Posted by brittalisse @brittalisse, Jul 14, 2011

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.

Interested in more discussions like this? Go to the Stroke & Cerebrovascular Diseases Support Group.

stuart23 | @stuart23 | Oct 16, 2024

Hello, I was diagnosed with CVST two weeks ago. I was suffering from bad headaches for three weeks, along with pain in my ear and those "whooshing" sounds as some of you have described them. I went to emergency and was initially diagnosed with a migraine, but as I often have migraines, I knew this was something else. Thankfully, the doctor listened to me and got me in for a CT scan which showed a suspected thrombosis. Had an MRI, and that confirmed the CVST with two blood clots. I was given Apixaban, and my initial headaches were gone within 48 hours. My next MRI is schedule in a few weeks, and obviously the hope is that it will show the clots have become smaller.

I'm 48, healthy, non-smoker, and I workout daily. All my blood work and tests have come back "unremarkable". So to say that this was a shock is an understatement, and I can see many of you here feel the same way. Right now I'm just thankful we caught this when we did. I feel very fortunate.

I'm still on Apixaban, and it sounds like I will be for some time. How does everyone cope after this? My biggest fear is suffering another stroke, so every time I feel a random pinch in my eye, or an ear ache, or a shooting pain through the skull I can't help but fear the worst. I still get headaches, which I'm told is normal, and Tylenol does seem to help with those so far. I know I need to give this time but its hard grasping the severity of it all.

I'm thankful to have found this site. I'm sorry so many of us are going through this, some worse than others.

REPLY
ttmarie04 | @ttmarie04 | Jan 14 10:08pm

Two years ago my 6 year old daughter was diagnosed with mastoiditis, CSVT and an abcess in her brain. After IV antibiotics for 6 weeks, additional oral antibiotics for 2 weeks, blood thinners a reoeat mri showed no clot or abcess. It did show optic protrusion which we had a lumbar puncture and that helped her tremendously. My daughter had an infection behind her ear, that rotted part of her skull. By time we went to the ER she was completley septic. Had very few symptoms. Shes doing great now however her mri shows "slow flow" which im told is normal for a CSVT? She has memory issues, slurring speech, cognitive issues.

Has anyone else had an mri show thia post CSVT and what does post op life look like for you? I keep getting told its normal but slow flow in a brain doesnt sound "normal" to me.

REPLY
gofffamilyquest | @gofffamilyquest | Jan 21 12:09pm

Hello All,

I came to this site in hopes of looking for some answers. My husband has had blood clots for over 30 yrs. He has the Protein S Deficiency, The Factor 5, The Anti-phospholipid Antibodies, and a few more that I can not think of right now. He has hundreds of Blood Clots to his legs and arms. Has had Dozens of Pulmonary Emboli's, has thrown them to his heart and even about 8 years ago had a Previous CVST, that we thought was all "healed".

In October we went to the Urgent Care because my husband could not hear... An ambulance ride later, we are in the Hospital being told that his O2 Levels were Extremely Low, his body was "filled" with extreme levels of Carbon Dioxide, and he would need to be placed on a "BPap" Machine to expel the "Dioxide". Unfortunately my husband is Extremely Facial Claustrophobic, and with the Numbers of Dioxide increasing, they had to intubate him. 1 Week later they discharge him, with no known reason for what happened. They set up an Oxygen take for use when his O2 numbers get low. They mentioned that he had had some Heart Issues and refer us to a Heart Dr.

Fast forward to November 27, I have to call an ambulance to my home as my husband is unconscious, and I am not able to wake him. His O2 bounced between 46 & 76. We go to ER again and I explain what happened in the previous month. Same thing, his O2 levels are in the dirt and his Carbon Dioxide Levels are through the roof again, and they can not get him conscious. They try to Not Intubate him, and instead try the High Flow Heated Oxygen to no avail and had to intubate him again. They completed head CT, MRI & MRI with Contrast. Several days later, we are told that he has had a "Type" of a Stroke, again a few days in they get his levels to normal and discharge him home with continued use of oxygen when numbers lower, with another referral to for an Urgent Sleep Study (Which as of today, we still have not had). We see the Heart Dr. in December and there are no abnormalities according to him.

Fast forward again to December 24th and yet again, I need to call an ambulance as my Husband is unconscious, will not wake even with Oxygen and sternal rubs. We get him to the ER and this time his O2 Sats are in the toilet again, he has Extremely Elevated Levels of Carbon Dioxide & Carbon Monoxide. They were able this time to get him to tolerate the High Flow Nasal Canula. At this ER stay they inform us that at his November Stay they had discovered a "Unique" Cluster of Blood Clots called a CVST, and another unique cluster at the Back of his Sinus Cavity at the back of his brain. And yet again, after a few days of his O2 levels returning to normal they send him home with orders to use oxygen when his levels lower.

I am waiting for the "Bomb" to drop in January. No one can answer the question as to "Why this is Happening?"

They returned him to Lovenox Injections for managing his Blood Disorders after the hospital stay in October, and yet this continues to happen. We have Oxygen at Home for when his O2 levels decrease, and yet it continues to happen.... His Hematologist Expert at Oregon Health Sciences University (OHSU) in Portland is trying to reach out to other Pulmonology Experts in our State to no avail, and I am Extremely Concerned and looking for help.

Does anyone know if there is a way to reach out to the Mayo for assistance or where to go to next???

REPLY
2 replies
Moderator
Lisa Lucier, Moderator | @lisalucier | Jan 21 12:47pm
In reply to @gofffamilyquest "Hello All, I came to this site in hopes of looking for some answers. My husband..." + (show)
@gofffamilyquest

Hello All,

I came to this site in hopes of looking for some answers. My husband has had blood clots for over 30 yrs. He has the Protein S Deficiency, The Factor 5, The Anti-phospholipid Antibodies, and a few more that I can not think of right now. He has hundreds of Blood Clots to his legs and arms. Has had Dozens of Pulmonary Emboli's, has thrown them to his heart and even about 8 years ago had a Previous CVST, that we thought was all "healed".

In October we went to the Urgent Care because my husband could not hear... An ambulance ride later, we are in the Hospital being told that his O2 Levels were Extremely Low, his body was "filled" with extreme levels of Carbon Dioxide, and he would need to be placed on a "BPap" Machine to expel the "Dioxide". Unfortunately my husband is Extremely Facial Claustrophobic, and with the Numbers of Dioxide increasing, they had to intubate him. 1 Week later they discharge him, with no known reason for what happened. They set up an Oxygen take for use when his O2 numbers get low. They mentioned that he had had some Heart Issues and refer us to a Heart Dr.

Fast forward to November 27, I have to call an ambulance to my home as my husband is unconscious, and I am not able to wake him. His O2 bounced between 46 & 76. We go to ER again and I explain what happened in the previous month. Same thing, his O2 levels are in the dirt and his Carbon Dioxide Levels are through the roof again, and they can not get him conscious. They try to Not Intubate him, and instead try the High Flow Heated Oxygen to no avail and had to intubate him again. They completed head CT, MRI & MRI with Contrast. Several days later, we are told that he has had a "Type" of a Stroke, again a few days in they get his levels to normal and discharge him home with continued use of oxygen when numbers lower, with another referral to for an Urgent Sleep Study (Which as of today, we still have not had). We see the Heart Dr. in December and there are no abnormalities according to him.

Fast forward again to December 24th and yet again, I need to call an ambulance as my Husband is unconscious, will not wake even with Oxygen and sternal rubs. We get him to the ER and this time his O2 Sats are in the toilet again, he has Extremely Elevated Levels of Carbon Dioxide & Carbon Monoxide. They were able this time to get him to tolerate the High Flow Nasal Canula. At this ER stay they inform us that at his November Stay they had discovered a "Unique" Cluster of Blood Clots called a CVST, and another unique cluster at the Back of his Sinus Cavity at the back of his brain. And yet again, after a few days of his O2 levels returning to normal they send him home with orders to use oxygen when his levels lower.

I am waiting for the "Bomb" to drop in January. No one can answer the question as to "Why this is Happening?"

They returned him to Lovenox Injections for managing his Blood Disorders after the hospital stay in October, and yet this continues to happen. We have Oxygen at Home for when his O2 levels decrease, and yet it continues to happen.... His Hematologist Expert at Oregon Health Sciences University (OHSU) in Portland is trying to reach out to other Pulmonology Experts in our State to no avail, and I am Extremely Concerned and looking for help.

Does anyone know if there is a way to reach out to the Mayo for assistance or where to go to next???

Jump to this post

Welcome to Mayo clinic Connect, @gofffamilyquest. It sounds like a lot of unknowns, wondering why this is happening and waiting for the next bomb to drop. I'm so sorry to hear all this.

If you'd like to make an appointment for a second opinion for him at Mayo Clinic, please follow this link http://mayocl.in/1mtmR63.

All the best on your quest for answers for him.

REPLY
1 reply
gofffamilyquest | @gofffamilyquest | Jan 27 10:37am
In reply to @lisalucier "Welcome to Mayo clinic Connect, @gofffamilyquest. It sounds like a lot of unknowns, wondering why this..." + (show)
@lisalucier

Welcome to Mayo clinic Connect, @gofffamilyquest. It sounds like a lot of unknowns, wondering why this is happening and waiting for the next bomb to drop. I'm so sorry to hear all this.

If you'd like to make an appointment for a second opinion for him at Mayo Clinic, please follow this link http://mayocl.in/1mtmR63.

All the best on your quest for answers for him.

Jump to this post

Thank you Lisa! I have indeed reached out to the link that you provided. Hopefully we will hear something soon...

REPLY
Moderator
Lisa Lucier, Moderator | @lisalucier | Feb 18 9:44am
In reply to @gofffamilyquest "Hello All, I came to this site in hopes of looking for some answers. My husband..." + (show)
@gofffamilyquest

Hello All,

I came to this site in hopes of looking for some answers. My husband has had blood clots for over 30 yrs. He has the Protein S Deficiency, The Factor 5, The Anti-phospholipid Antibodies, and a few more that I can not think of right now. He has hundreds of Blood Clots to his legs and arms. Has had Dozens of Pulmonary Emboli's, has thrown them to his heart and even about 8 years ago had a Previous CVST, that we thought was all "healed".

In October we went to the Urgent Care because my husband could not hear... An ambulance ride later, we are in the Hospital being told that his O2 Levels were Extremely Low, his body was "filled" with extreme levels of Carbon Dioxide, and he would need to be placed on a "BPap" Machine to expel the "Dioxide". Unfortunately my husband is Extremely Facial Claustrophobic, and with the Numbers of Dioxide increasing, they had to intubate him. 1 Week later they discharge him, with no known reason for what happened. They set up an Oxygen take for use when his O2 numbers get low. They mentioned that he had had some Heart Issues and refer us to a Heart Dr.

Fast forward to November 27, I have to call an ambulance to my home as my husband is unconscious, and I am not able to wake him. His O2 bounced between 46 & 76. We go to ER again and I explain what happened in the previous month. Same thing, his O2 levels are in the dirt and his Carbon Dioxide Levels are through the roof again, and they can not get him conscious. They try to Not Intubate him, and instead try the High Flow Heated Oxygen to no avail and had to intubate him again. They completed head CT, MRI & MRI with Contrast. Several days later, we are told that he has had a "Type" of a Stroke, again a few days in they get his levels to normal and discharge him home with continued use of oxygen when numbers lower, with another referral to for an Urgent Sleep Study (Which as of today, we still have not had). We see the Heart Dr. in December and there are no abnormalities according to him.

Fast forward again to December 24th and yet again, I need to call an ambulance as my Husband is unconscious, will not wake even with Oxygen and sternal rubs. We get him to the ER and this time his O2 Sats are in the toilet again, he has Extremely Elevated Levels of Carbon Dioxide & Carbon Monoxide. They were able this time to get him to tolerate the High Flow Nasal Canula. At this ER stay they inform us that at his November Stay they had discovered a "Unique" Cluster of Blood Clots called a CVST, and another unique cluster at the Back of his Sinus Cavity at the back of his brain. And yet again, after a few days of his O2 levels returning to normal they send him home with orders to use oxygen when his levels lower.

I am waiting for the "Bomb" to drop in January. No one can answer the question as to "Why this is Happening?"

They returned him to Lovenox Injections for managing his Blood Disorders after the hospital stay in October, and yet this continues to happen. We have Oxygen at Home for when his O2 levels decrease, and yet it continues to happen.... His Hematologist Expert at Oregon Health Sciences University (OHSU) in Portland is trying to reach out to other Pulmonology Experts in our State to no avail, and I am Extremely Concerned and looking for help.

Does anyone know if there is a way to reach out to the Mayo for assistance or where to go to next???

Jump to this post

@gofffamilyquest - how is your husband doing?

REPLY
View MoreView Less
Please sign in or register to post a reply.