Diagnosed with Cerebral Venous Sinus Thrombosis (CVST)

Amanda,
I will gladly give every thing I can. Living with a brain injury is like being under water two inches from the surface. It's drowning with the world almost within your grasp. The almost is the killer. Hope can be the cruellest emotion.
I'm lucky in the fact that I know I have a chance at recovery. My injury cannot be fixed but on good days I can see the texture of the world with my eyes. My brain still works and I am thankful for that. But it's bittersweet. I've lost my life to an injury that was brought about by a troubled childhood littered with anger regret sadness and indifference.
Amanda thank you so much for your reply.
I don't have any personal issues, if you or anybody else on this forum wants to ask me questions about anything I will answer them.
Emotional, sexual, historical, nostalgic, I'm an open book.
I don't have time to be I'll any longer and I think neither does anybody else.
Human beings are machines. Existence is a matter for philosophers.
As I said I am open to all questions. There are no boundaries.
Again thank Amanda.

Hello @billykegs

I just read your posts and wanted you to know how much I admire your persistence in advocating for yourself. You are a testimony to a determined spirit. I only wish I could instill that attitude in everyone who finds themselves with an elusive health problem.

I also look forward to hearing more about your journey!

Hello Theresa.
I'm a street musician in New Orleans. This pandemic as you know put the brakes on society so being cooped up I decided to attack this problem. I've seen countless doctors over the years to no avail.
The first thing I tried was eliminating processed food/junk, what I really mean is sugar. That's not an easy thing to do. Candy, cornflakes, tinned food and all the rest of that stuff is easy enough, but excess non refined sugar hides all over the place. I allowed myself berries and an occasional banana. Also chocolate with Stevia.
That improved my speech and conversation. It really works. Refined sugar is not a good thing. But although I felt better things were still wrong.
Insulin resistance had been ruled out, two endochrynologists said my hormones were fine.
So I went after the liver. Milk thistle, zinc, saw palmetto, thiamine, choline, b12, NAC... I got these off the shelf at Whole Foods. It was all hit and miss but I only have myself.
Anyway I seemed to have nudged my condition but things still weren't right. Back to the net.
Wandering through endless articles on brain fog and balance issues I stumbled on Ammonia. This is another hidden ranger. Excess ammonia causes hepatic encephalopathy. Those symptoms looked pretty close to mine. So off I went after that. Problem was Lactulose is the only viable solution but it needs a prescription. So I rang up a vet saying I needed some for my dog. They didn't buy it so I went to the hospital and told them I had hepatic encephalopathy. I got three weeks worth. When I needed refills they wouldn't give me any until I had my blood taken. My Ammonia level was 45 which is boundary high. I stayed on Lactulose for three months then went back to the hospital and my level was 22. But I still knew I was not feeling better. You can con yourself with that placebo effect for only so long. But encephalopathy was a step forward. It looked good. Back to the net.
Hidden in another article was Brain Hypoxia. This has its own encephalopathy. It was a shock. I always subconsciously hoped it wasnt my brain. That scares me.
The article also mentioned stroke and carbon monoxide, an evil thing I have worked around for years.
I had an MRI and it was normal. My NP gave me the news over the phone. She seemed busy as we spoke, "Well, is there anything else I can do for you honey?" Nurses are wonderful but I was feeling a little abandoned but I persevered. I asked for an EEG. I haven't got my appointment yet.
A few days ago I was on the phone to my buddy in Boston. He said he had got the vaccine. First thing I was concerned about was J+J, he has had problems with clots. But he got the Moderna. He casually mentioned the side effects name. Two words struck me. Sinus and cerebral.
Only recently I was talking to a retired nurse. I told her I only feel better when I know I have a cold coming on.
I was always under the impression a cold was the lungs but she mentioned the sinus.
Then I found CVTS.
As things stand right now I'm waiting for an EEG. I could be wrong but if I ever find this thing I know I'm a lot closer than I was a year ago.
So that's the basic outline Theresa. If anybody has any questions about anything I have experienced I'm right here always. Nothing is off limits, this is too important.
Thank you

Thanks for your reply, @billykegs. Is there any family history of this type of health problem? Have you kept copies of all of your test results?

I certainly hope you find answers. You have been very diligent in seeking answers.

Hi Theresa.
There is no history of this in my family. This is an injury. It was caused by exhaustion, alcohol or carbon monoxide or a combination of all three.
I was 19 working on the same site as my father. Being that age I tried to keep up with the big boys and overdid it. Its probably self inflicted unless it was carbon monoxide. Both my parents eventually drank themselves to death. Every drop of booze I took has been my choice (I was a bartender at 14), but growing up in that environment certainly didn't do me any favours.y

Hello everyone,

I’m so sorry to hear so many of you are having a hard time.

Could I ask if you had MRIs with or without contrast with your diagnoses?

Thank you!

Hi Amanda,
I'm on 81mg asprin daily dose for another 6 months. My doc said I could continue the asprin for little longer if my headaches return after stopping it, but that's optional.
During my time on Apixaban, I had noticed a few blue/black bruises on my body multiple times. After starting Asprin, I again kept seeing random blue/black bruises. The six said with Apixaban the bruises were expected, but not with asprin. So currently multiple blood tests have been done to check for some clotting disorder. I'm yet to hear back on this.. hopefully nothing serious.

Both. First the standard MRI before I was admitted to the hospital and later the MRI with contrast by night or next day, for a detailed scan or whatever the use is.
But even for the checkup after 4 months, they had done both MRI's for the report.

You said that "now my clot have dissolved"------does that mean it no longer shows on the scan?
In April I got diagnosed with CVST. While in the hospital, the neurologist said that in 6 months we hope it would be smaller. I recently had another scan. When I saw the same neurologist, he said it has not gotten smaller, and he wouldn't expect it to get smaller. He said it was "stable" and that blood was getting through it. He compared it to a scar on his finger: that it healed but still has a scar. My adult daughter was with me both times. She, too, remembers that in April he said he would expect it to look smaller on the scan, and now he is saying that he doesn't. He says that I can go off the blood thinners in a month. I am afraid to go off of them because: 1. the discrepancy in what he said; 2. my brother died this past year when he was taken off blood thinners for an outpatient procedure of kidney stones; 3. I was diagnosed in Febr. with skin Lupus (my aunt died of Lupus many years ago) and I've read that blood clots can be related to Lupus.

Anyone with CVST who can tell me if their CVST got smaller over time on their scans or not? I have Kaiser insurance and went online to try to find a vascular neurologist to try to get an appointment for a 2nd opinion, but could not find a vascular neurologist in Kaiser. Any suggestions would be greatly appreciated.