Capillary brain telangiectasia

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

Capillary brain telangiectasia

Postby Sharon » Sat May 09, 2009 4:58 pm

Does anyone else show a telangiectasia on their brain MRI? This is a brain stem vascular malfunction. My MRI shows that I have the "t" in the pons area of the brain.
Abstract: Repetitive cranial magnetic resonance imaging (MRI) showed lesions typical of multiple sclerosis (MS) with one Gd-enhancing focus in the left parietal cerebrum which correlated to the clinical symptoms of a secondary progressive female MS patient. Since this Gd-enhancing lesion lasted over more than two years even after numerous intravenous high-dose methylprednisolone administrations and intrathecal triamcinolone injections the inflammatory etiology of this lesion was questioned and T2* echo-gradient images and MR angiography showed a capillary telangiectasia mimicking an active inflammatory MS-lesion


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My neuro said that I was probably born with the "t". Now I am wondering if there is an association. I told Dr. Dake - he really did not make a comment about it.....This too may be interesting. Comments Marie?

Sharon
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Postby mrhodes40 » Sun May 10, 2009 12:37 pm

Wow, I don't have one. They've been finding more of these oddities in the brain since we do MRI's these days. they have found that the malformation they used to think rare are not at all.

They've also been finding venous variations in normal people's bodies as well now that they look with venograms at chests a lot: some have valves some not, some have a reversed venous system it is wild.

It'll be interesting to see what your MRV shows Sharon, if there is some association at all, like I wonder if the t is pressing in some way on the veins and that is the cause of CCSVI in your particular case? I can't wait for your report when do you go?
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Postby Sharon » Sun May 10, 2009 3:48 pm

Marie - testing is June 1st. - Peekaboo will be there June 2nd - we are hoping to be able to meet each other. You have a couple more weeks - right?

I am starting a journal - writing down every little thing that I can feel or not feel - this will become my point of reference for after treatment.

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Postby mrhodes40 » Sun May 10, 2009 4:14 pm

Smart. I was thinking the same thing. I got the video out to do a short movie of me walking, standing on tip toes etc. I do not expect to walk better but that is worth recording it seems to me...just in case!
I have had the thought that it will not be long after treatment and a person will not remember how it "used to feel".

I am leaving in 6 days. Monday after next the 18th, I'm in MRV, Tues stents. I'll do a regimen entry also and I got a room at the Sheraton. We are bringing our doggie so we needed a good room! they have sweet sleep doggie beds there! :lol: I got internet for the room so we will be set, I'll take my lap top so I can post hello........

is anyone going this week?
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Postby Sharon » Sun May 10, 2009 6:21 pm

Marie, good idea about the video - I am also going to ask my exercise trainer to write down her thoughts.

I think Dr. Dake is out of the office this next week.

I am also planning on taking my lap top ----- this is getting exciting!!
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Postby mrhodes40 » Sun May 10, 2009 7:22 pm

Maybe he's in Ferrara!!! ohhhh that'd be cool. :D :D :D Iknow ther eis a trip planned................

Good plans on the documentation side of it there a personal trainer is a good idea for cheking up. I can't wait to read everyone's regimen enrties.

I am so excited for this I can hardly say. I was lucky enough to talk to one of the Liberation 100--I'm expecting to do pretty well :wink:

I PM'd wobbly the new home, haven't seen any wobbly posts though.

Probably living life and being happy!
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Sharon » Mon May 11, 2009 6:40 am

Marie
I am so excited for this I can hardly say. I was lucky enough to talk to one of the Liberation 100--I'm expecting to do pretty well


Wonderful, wonderful --this is great news :!: :!:
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Postby marti » Thu Jun 25, 2009 3:56 pm

Yes, yes.... my latest mri shows enhancement in the right aspect of the pons suspicious of capillary telangiectasia. So, what is it???

Is this part of the MS or is it some other defect?
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Postby Sharon » Thu Jun 25, 2009 4:08 pm

Marti -
The capillary telangiectasia is not associated with the MS (at least at this time). I am interested to see if mine changes any after treatment for CCSVI. My neurologist said it is not an uncommon malformation - could have been born with it, or could have been caused by a brain concussion when I was five years of age.

Here is info http://emedicine.medscape.com/article/337451-overview

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Postby marti » Thu Jun 25, 2009 4:12 pm

Thanks Sharon,

But please tell me all you know about this. It's totally new to me. What is the treatment and is a treatment necessary?? Is this dangerous? What are your symptoms?? I have a lot of dizziness and some head pain. I also have Grave's disease (hyperthyoridism). I need some soothing here please! This scares me.

Thanks and good luck
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Postby zap » Thu Jun 25, 2009 4:40 pm

Could be related to increased venous pressure in my mind.

http://emedicine.medscape.com/article/337451-overview

And come to think of it, this is a lot like the one large old lesion I have on my pons: http://emedicine.medscape.com/article/337451-media
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