Do these pics look like CCSVI? So confused due to brain fog

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Do these pics look like CCSVI? So confused due to brain fog

Postby lowbrainpower » Wed Nov 14, 2012 8:25 pm

All the Ritalin in the world doesn't help with cog fog; the only thing it does is give me the energy to hammer through and try to find answers, even though I have virtually no short term memory.

I demanded an MRV from my Neuro (who has been great help in giving me the tests I want but not in helping me find a cause to my cognitive problems). He said, verbatim, 'asymmetric transverse sinus and jugular noted, but not of concern'. I wanted to get a few opinions from those who have been diagnosed MS or who have CCSVI to see if my pictures resemble something they have seen with their own.

ImageImage
ImageImage
ImageImage

My symptoms are: chronic brain fog (no short term memory, inability to focus, no concentration, imagination), chronic fatigue, blurry vision, derealization (feels like I'm living in a dream and nothing is real), dizziness, mental confusion, cannot comprehend or get a feeling of time/space, no depth perception, and the list goes on... The biggest problem is brain fog, chronic fatigue, and no visual/audio memory. I can't ever get songs stuck in my head, I can't imagine objects in my mind, and I can't plan/organize anything because I can't visualize what I want or have the memory to do it with. I am so frustrated it's not funny... :(

Thank you so much for reading. I was close to suicide today but after finding this forum I have at least some hope. I don't want to quit fighting but some days I wake up and completely forget I have a problem, and only after I get a sense of living in a dream do I remember I have to fight another day to regain my sanity/mental clarity.

- J
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Re: Do these pics look like CCSVI? So confused due to brain

Postby DougL » Thu Nov 15, 2012 4:21 am

Hi J. Welcome to TIMS

sorry, i really can't comment on your pictures but i wanted to say Hi.

glad you found us but wish you never had to look for us.
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Re: Do these pics look like CCSVI? So confused due to brain

Postby Cece » Thu Nov 15, 2012 8:30 am

Brain fog is terrible. And healthy people don't understand it.
Please keep fighting, there is hope.
I remember when I couldn't bring up a mental visual image of my own family (husband, children). I couldn't see them in my brain. That eventually recovered on its own after two years.

Some of the symptoms you list are the same as CCSVI symptoms. For some people, these improve after CCSVI treatment.

I am not a doctor but I think your images do not go low enough. The crucial area is down at the base of the neck. If your asymetrical transverse sinus and right jugular aren't carrying much flow, then your extracranial drainage would rely more heavily on the left jugular. If this is obstructed as well, then it gets harder to dismiss it as "of no concern." What's really needed is an image or an ultrasound of the base of the jugulars to see if the jugulars have a blockage in the usual spot from the usual cause (malformed valves).

Here was my MRV. If you can find the jugulars on both sides and follow them down, there's a place where it looks like they are both cut off and only a trickle goes further. That was because of malformed valves which were found and treated when I had the procedure done.
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic14456-60.html#p146167

The best medical advice would come from an IR who is experienced at CCSVI and who can do a doppler ultrasound of your neck veins.
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Re: Do these pics look like CCSVI? So confused due to brain

Postby lowbrainpower » Thu Nov 15, 2012 9:24 am

I can't bring up pictures of my family either. I remember when I used to be able to sit there and effortlessly memorize how to play songs on the guitar in my head. Now I can't play even the simplest of songs, and memorizing them is out of the question, no matter how many hours I sit there and try. It's like I'm incapable of learning.

I will look into the full head/neck MRV. Thank you!
Last edited by lowbrainpower on Thu Nov 15, 2012 9:48 am, edited 1 time in total.
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Re: Do these pics look like CCSVI? So confused due to brain

Postby Cece » Thu Nov 15, 2012 9:47 am

What city/country are you in? With any luck, you're somewhere like NY or CA where there are several options of interventional radiologists experienced in CCSVI. Most CCSVI IRs are using doppler ultrasound, not MRV. It's really best to get someone with experience to do the diagnosis. Good luck. I would definitely look into finding a CCSVI IR and then following their advice of what imaging test to get.
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Re: Do these pics look like CCSVI? So confused due to brain

Postby lowbrainpower » Thu Nov 15, 2012 9:51 am

I'm in the USA. I'm in the Midwest but will travel to NY to get this done if necessary. I have thought about Sclafani. Is his expertise worth the $11,000 or should I find a clinic that does CCSVI for cheaper? I also don't want to spend the money and then find out it doesn't work, but I'm running out of options here and I don't have the mental capacity to keep searching for answers.

Thanks.
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Re: Do these pics look like CCSVI? So confused due to brain

Postby Barry » Thu Nov 15, 2012 10:12 am

lowbrainpower wrote:I'm in the USA. I'm in the Midwest but will travel to NY to get this done if necessary. I have thought about Sclafani. Is his expertise worth the $11,000 or should I find a clinic that does CCSVI for cheaper? I also don't want to spend the money and then find out it doesn't work, but I'm running out of options here and I don't have the mental capacity to keep searching for answers.

Thanks.


You might want to look into LDN - low dose naltrexone. There's a lot of info here. I've been taking 1.5 mg / day for 6 months.
I can't say that it's done much of anything about physical symptoms but it cleared up my brain fog big time within 2 weeks. It costs me
$25 / month. Finding a doc to give you a script might be the hard part.

Best of luck!

Barry
I run a fun little forum site – www.CanadiansTalk.net – check it out. You don't have to be
a Canuck. :)
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Re: Do these pics look like CCSVI? So confused due to brain

Postby Cece » Thu Nov 15, 2012 12:40 pm

You must have insurance that paid for the MRV? You might want to contact one of the Midwest doctors to see if they'll accept your insurance for the CCSVI procedure.

Dr. Cumming at HCMC in Minneapolis http://hcmcmn.org/index.php?content=phy ... nfo&sid=71
Dr. Arslan in Chicago http://doctors.rush.edu/directory/profi ... id=6106225
Dr. Ferral in Chicago http://www.northshore.org/apps/findadoc ... x?pid=9120

Dr. Sclafani in NY http://www.ccsvicare.org/sclafani.html

Dr. Cumming, Dr. Ferral, and Dr. Sclafani all use intravascular ultrasound. There are a few abstracts showing that intravascular ultrasound allows for greater accuracy in diagnosis and fewer complications.

I recommend Dr. Sclafani very highly. He is one of the leaders in CCSVI. When I had my procedures done in 2011, his clinic was accepting insurance. I don't think they are accepting insurance currently and I think that complicates the decision. If you can get insurance to pay for it, that's better for you financially obviously and also better if there is a need for a repeat procedure.
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Re: Do these pics look like CCSVI? So confused due to brain

Postby katepoet » Fri Nov 16, 2012 11:16 am

For cog fog, try increasing your vitamin D3. One survey showed that MSers do better with an average of 14,000 IU a day. Another survey found that it is safe to go up to 40,000 IU a day. You can get a blood test every 3 months to be sure you don't go too high. I take 40-50,000 IU a day and my energy level is better, as well as my brain fog. My spasms are way down, too. I aso find that copaxone helps with the spasms.

Take a bicarb. It makes you more base. It may clear oxygen receptors in the blood stream. WIthin 5 minutes, you should find your mind clearer.

Don't take bicarb if you have cardiac probs or have had stomach surgery. I take 2-6 a day. For example, when I take one medicine, I feel nauseas and can throw it up, but if I take a bicarb with it, I am fine. I take it when my ears turn red from exposure to outgassing chemicals from some hardware glue.
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Re: Do these pics look like CCSVI? So confused due to brain

Postby lowbrainpower » Fri Nov 16, 2012 2:16 pm

Thank you everyone :)
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