Cerebral venous sinus thrombosis (cvst)

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 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

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.

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

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!

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 and welcome to Mayo Clinic Connect. You are welcome to share as much or as little as you would like and are comfortable with. Would you please come back and share an update once you meet with the neurologist?

Hi.
My name is William Gallagher. In 1985 I was 19 years old. I was in college but I was working a summer job on a construction site.
It was seven days a week but we'll paid and I needed the money.
One day I realised something was wrong with my vision. As time went on I noticed my balance was off, my speech was sometimes slurred, my coordination was amiss, my ability to think and converse was impaired.
I went to all kinds of doctors and given different meds that I can barely remember but I knew something was seriously wrong.
This pandemic has given me the opportunity after all these years to finally try to find out what happened. It has ruined my life.
The only clue I have is I feel better when I can feel I have a cold coming on. As far as I know that is in the sinus area. That coupled with cognitive difficulties seems to point to CVST. I've had an MRI and it was fine. I'm now waiting to see a neurologist.
It's a struggle. Doctors have taken hundreds of blood tests over the years and all is fine. I'm on my own with this and I'm not going to give up. Thyroid, sugar, allergies, insulin resistance, liver, ammonia I've chased them all. This avenue though looks the most promising.
I'm sorry this post is short on specifics but if it offers anybody any hope or inspiration that's has to be good. Don't give up. Be the captain of your own ship. If you know something is wrong and your tests come back clear keep fighting. The internet is the gift that no library can match. Now is the age.
Thank you.

This post is an update to my previous post in January 2021. After having been told by my vascular neurologist that my clot had expanded, I waited three weeks to get any further discussion, guidance, or information on the issue. When I had my appointment with the vascular neurologist, I was told that she had consulted with my neurosurgeon and that he stated there was no change in my condition, meaning the clot had not further developed. My current reported symptoms, although important in 2020 when the clot and fistula were discovered, were now not important. The symptoms were attributed to stress. I was told that my neurosurgeon wanted me to have another angiogram as a follow up for the fistula. I was aware at the time of my initial angiogram procedure of needing a follow up a year after my procedure for the fistula. So, it wasn’t a surprise. I was concerned about the symptoms I was having and pushed for more guidance. I was told not to worry as the clot and fistula would not kill me. They would not cause a blood clot to my lungs or heart and result in death. I told her I didn’t want to take my family and friends on an emotional roller coaster with me and appreciated learning that this issue was no longer serious. She then said very firmly, “NO, IT IS VERY SERIOUS.” However, I could not get any further information regarding what was considered serious. Fast forward, I had an angiogram on February 22, 2021. Surprisingly, while I was laying on the table waiting for my angiogram, the Medical Fellow working with my neurosurgeon stated that the purpose of the angiogram was because I had two MRIs recently with one showing that the fistula had redeveloped and there was blood flow through the fistula and the other one showed the fistula had redeveloped and there was no blood flow through it. You can imagine my shock as I had been told there was no change. Suspecting that the fistula had redeveloped is a big change. When my neuorsurgeon came in, he made it clear that they were only doing the procedure to look at the fistula and not my clot. I thought that was an interesting clarification since they are both related/connected. He stated they would not be doing a procedure to fix the issue that day. They would only be looking at the development. I didn’t say anything. I was still trying to process the new info. Good news... they did not find that the fistula had redeveloped. At the end, I was abruptly told by my neurosurgeon that there was no new development and I didn’t need to see him anymore. Next good news... my recovery went smoothly. Little to no discomfort. More good news...I have an appointment scheduled with Mayo Clinic in Jacksonville Florida for a second opinion and to establish a relationship for further medical care, support, monitoring as I am in the process of moving to Florida. It is very confusing to get conflicting information from the various doctors involved with my case. I hope my experience with Mayo Clinic will allow me to get some questions answered. I will keep you all posted.

I am so glad to meet all of you who are dealing with the same thing I have never heard of but now deal with and think about daily, though I try not to! I began 2020 with horrible headaches, accompanied by a flu like illness. I was sure it was migraines, which I have had. The flu got better but the migraines got worse, pounding in my right eye was unbearable and bending over and back up was worse. In June I went for a 10 year breast cancer annual checkup and I mentioned it. My doctor scheduled an MRI immediately. I knew she feared metastasis. A couple of days later I had the MRI and shortly she called and said Good news, no cancer, but you do have a blood clot and must go to hospital right now. They admitted me to the stroke floor, though I had not yet had a stroke, ran lots of tests for 3 days, the neurologist saw me every day and finally gave me the diagnosis of CVST, cause unknown, put me on Pradaxa, and also sent me to their neurologist headache clinic (which has been a God send). In September I had another CT, and the results showed no improvement in the one clot, plus a second clot was discovered. I was sent to a hematologist. At the same time I made an appointment at Mayo in Rochester. My Hematologist here said Pradaxa had failed and he put me on Coumadin and felt like that would take care of things. I saw a wonderful team at Mayo who felt my diagnosis and treatment were on point, so I was feeling very hopeful. Fast forward to January 2021 CT scan, my initial clot has not gotten better, though it is no occlusive, and my second clot has grown, though still no occlusive at this point. My INR numbers are a roller coaster on Coumadin, though I eat and drink the exact same things every day to stay compliant with the diet. I expressed my concern to my headache neurologist and she admitted sometimes the hardest answer to my What’s wrong with me? Question is They just don’t know. So, still handing in. Feeling like my vision is blurry. Fatigued (might be headache meds, might be high doses of Coumadin?). I am going to see my headache doctor at the end of this month and discuss with her....I get to spend much more time with her than my hematologist. Thank you for listening!