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

Questions for those who have the surgery

Did you need a referral from your neuro?
Who follows up with you when you come home?
How soon can you fly after the proceudre and how long do you need to stay near stanford?
I read they keep you awake duing the surgery, that is a little creepy but then again I really prefer that vs being put under. So they at least give you some sort of sedation to relax you or are ...
Read more : Questions for those who have the surgery | Views : 1935 | Replies : 14


The Unmentionables..and Time

Marie, Well, there are the symptoms of which we all speak freely---fatigue, imbalance, heat intolerance, impaired swallowing, foot drop, "franken-gait," spastic limbs, vision problems, slurred speech, weakness, muscle wasting, cognitive dysfunction and brain fog. But what about the "unmentionable" symptoms---bladder dysfunction, erectile dysfunction, chronic constipation and bowel dysfunction. Do you think the appropriate venous stent insertions could improve those problems? Even if they are long-standing problems?

It occurs to me that there may be a ...
Read more : The Unmentionables..and Time | Views : 1306 | Replies : 3


Neck pain and Muscle Relaxants

Sharon, that cagey lady, got the muscle relaxant Soma for her neck pain post surgery and felt great relief. She recognized relief after a massage and realized it was muscle tightness causing her misery.

This may be something others will try as well and I wanted a thread to follow the information regarding this idea. If you use a muscle relaxant for neck pain please report it here.

For me, I had stents on May ...
Read more : Neck pain and Muscle Relaxants | Views : 1815 | Replies : 4


Skydog (Mark) is leaving for Stanford

Hey, Mark!

Just wanted you to get your own "little space" on TIMS as you travel to Stanford. Those of us who have gone before you have left a few crumbs along the path to help you get there - you will leave more for the next person. We will all look forward to hearing from you - glad you are taking a computer - we are like a bunch of baby birds waiting for ...
Read more : Skydog (Mark) is leaving for Stanford | Views : 5670 | Replies : 38


Myelopathy associated with bilateral jugular vein occlusion!

YES!!! Seek and ye shall find!!!

Spinal cord myelopathy attributed to bilateral jugular vein occlusion and impaired venous drainage....
This gal had demyelinating lesions (just like MS) on her spinal cord because her jugular veins were blocked. This is the disease model we are seeing in patients tested by Drs. Zamboni and Dake.

http://thejns.org/doi/pdf/10.3171/spi.2007.6.1.60


Ventriculoperitoneal shunt failure causing myelopathy in a
patient with bilateral jugular vein occlusion
Case report ...
Read more : Myelopathy associated with bilateral jugular vein occlusion! | Views : 6536 | Replies : 33


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Read more : 123 | Views : 1740 | Replies : 10


Gibbledygook's Stents

I checked into Stanford on Monday at 7am for magnetic resonance imaging of the upper body which took place for about an hour. I then discussed the results with Professor Dake in the afternoon. The scans showed up some pretty severe narrowings of both jugular veins for quite extensive lengths.

Yesterday I had a 4 cm stent placed into the right jugular at C1 to 2 and a 2cm and a 4cm stent placed into ...
Read more : Gibbledygook's Stents | Views : 27116 | Replies : 227


Azygos question

Hi all.

I would like to ask a question. I have many lesions in my brain, most of them periventricular or in the corpus callosum. A very typical "Dawson's finger" image that could be a perfect example for a book, according to my neuro.

In addition, I have some small lesions in my spinal cord, at the cervical region. Finally, I have 2 very tiny at the level of T4 - T5 that are 100% ...
Read more : Azygos question | Views : 1706 | Replies : 3


next person who sees Dr Dake

Could you please ask him if he knows anybody qualified and interested, who is a surgeon, in France? It might help to have him spread the word to other doctors here, as they aren't very open to hearing anything from the patients. My husband was seen by one Dr who knows Zamboni (and he says he is a very serious doctor...), but when it comes to intervention, that Dr will need to find others who ...
Read more : next person who sees Dr Dake | Views : 1064 | Replies : 1


spreading the word

Do you guys agree that there is value in cautiously/respectfully spreading this new research and hope to other online communities?

It's somewhat delicate because I don't feel qualified to answer many questions about it, and Admins tend to frown on new members linking people to other "competing" forums ... maybe someone more knowledgeable could go be a CCSVI missionary to other boards?

(It would be interesting to compare and contrast the way different forums react ...
Read more : spreading the word | Views : 1366 | Replies : 8


 

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