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Cannot wait for the movie

History

Thanks for the updae. And yes we do have much for which to be thankful. Happy Thanksgiving to all.

Wanted to update for Jeff, now 2 years past first intervention.

Jeff had a stenotic dural sinus on his left side. It was narrow on his very first MRV, and once his left jugular was flowing, he heard the blood whooshing thru this tight area against his cochlea. Dr. Dake wanted to wait to see if the sinus would open on its own with restored flow thru the jugular, but it did not. Jeff had a procedure to widen the venous sinus, which was stented. This is done for those who present with this venous malformation, pulsatile tinnitus, idiopathic intercranial hypertension, papalladema and headache.
http://www.medscape.com/viewarticle/714384

Jeff lost his peripheral vision as a child, and there was no cause given...his optic disc was swollen, and the eye specialist saw drusen/papilladema and sent him on his way saying he might lose his sight, he might not. 30 years later, after a lifetime of altitude sickness, depression, and fatigue, he received an MS diagnosis with over 20 lesions on his brain...imagine if he had an MRV and MRI when he first lost his eyesight. This is now standard protocol for children who go to the eye doctor with Jeff's original presentation.....may those children never go on to develop MS.

Jeff's a month out from this most recent procedure. Blood flow is excellent, no more whoosh (!) no more postural headaches. The return of bloodflow 2 years ago gave him back energy, removed heat intolerence and stopped disease progression and brain atrophy. This most recent procedure addressed his stenotic dural sinus, and will hopefully end the vision loss. We hope all remains open and flowing.

Presentation of CCSVI like Jeff's, with a stenotic dural sinus and hypoplasic jugular veins is rare, but there have been a few others. Most folks present with lower valve issues, webs, etc...which are easier to address. Jeff's valves are just fine, as is his azygos and lower veins. We are thankful that Dr. Dake continues to follow Jeff and monitor his progress. Jeff will have OCT scans to see if his vision improves/stabilizes.

I keep bugging him to come on here and say hi...we'll see if I can
thanks for all the support,
cheer

Good to get an update. I sent an e-mail to the patient coordinator at Duke University where they are doing a study on Chiari since both my daughter and I had postpartum optic neuritis. Am learning that chiari is poorly understood, frequently misdiagnosed if diagnosed, diagnostic criterion may be too restrictive, if present, the corrective surgery is serious and the results are mixed and the recovery is long. Feel like I'm between a rock and a hard place. I may be barking up the wrog tree, but I thought it was worth checking into. Glad Jeff seems to be doing ok. He's in good hands with Dr. Dake.

Joan,

Thanks for the update! Always glad to here more good news. And thanks again for all your contributions, you've been an invaluable resource and tremendous help to many

Hi cheer,

You and Jeff must be extremely happy, and I'm extremely happy for both of you, too.

Because I, also, have dural sinus malformations, I have some specific questions if I may...

In which section of which sinus was the stent put?
What are the dimensions of the stent?
What kind of doctor performed the procedure?
Was any brain tissue affected by the procedure? (I am uncertain of the anatomy.)
Did Jeff experience the same level of pain in this procedure as he did in his first procedure with Dr. Dake?
What anesthesia was used during this procedure?

Thank you very much for your time!

HappyPoet wrote:Hi cheer,

You and Jeff must be extremely happy, and I'm extremely happy for both of you, too.

Because I, also, have dural sinus malformations, I have some specific questions if I may...

In which section of which sinus was the stent put?
What are the dimensions of the stent?
What kind of doctor performed the procedure?
Was any brain tissue affected by the procedure? (I am uncertain of the anatomy.)
Did Jeff experience the same level of pain in this procedure as he did in his first procedure with Dr. Dake?
What anesthesia was used during this procedure?

Thank you very much for your time!

sorry--missed your post HP...the wall moves pretty quickly. I do not have the exact specs on the stent, all we know is that it sized for this area, and is used to treat dural venous stenosis. It is not near the brain, it's just above the left jugular where it bends into the sigmoid sinus...see the pic I link. Jeff's was very tight and narrow.
link
Jeff has a really high pain tolerance...he was on a bit of IV painkillers, he said it was not as painful as first procedure and he had no nausea, no headache. This can be done by neuroradiologists or IRs.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1656639/
cheer

cheer,

Thanks so much for your terrific reply which I'm sure will be helpful to everyone with malformed dural sinuses (I'm missing my left transverse sinus).

The graphic you linked is fantastic and answers even more questions I had. The graphic easily shows where veins drain making it easy to understand how vision can be improved so soon after IJV venoplasty -- the optic nerves drain down through the dural sinuses into the IJVs... I'm guessing the other cranial nerve veins (hearing, smell, taste, touch) drain into somewhere other than the IJVs, like perhaps the external jugular veins (another guess).

My best to both you and Jeff,
~HappyPoet

The graphic you linked is fantastic

It is, indeed. I like how they have included dental imperfections (or is it just my eyes?).

Here's Jeff and Joan, both real and both amazing, telling their story.

i registered but can't get it.

It worked for me without registering or logging in. A lot of resonance between the improvements he's seen and what I've had too. I like when he mentioned that he seems to still be having "uphill progression," meaning improvements 2 1/2 years post-procedure. And they come across as a really nice couple. They're welcome at my house for dinner anytime.

Cece wrote:It worked for me without registering or logging in. A lot of resonance between the improvements he's seen and what I've had too. I like when he mentioned that he seems to still be having "uphill progression," meaning improvements 2 1/2 years post-procedure. And they come across as a really nice couple. They're welcome at my house for dinner anytime.

Thanks so much for finding this thread, bumping it and posting the video link, Cece! Jeff hasn't been coming on TIMS, and it's good for anyone interested in his story to hear it in his own words. Really appreciate it. We'll take you up on the dinner offer when we're in your neighborhood (although after yesterday's feast, I'm having trouble considering food

Jeff and I were supposed to do the Canadian CCSVI expo live, and we're in northern CA for Thanksgiving break. Our internet router was fried over the weekend (lightening strike), and we couldn't participate...so Jeff suggested we sit down and make a video to document his improvements and talk about his journey. He's been doing so well, and still experiencing healing. Will be interesting to see what the next MRI shows, since his gray matter was "plumper" last time...can't believe it will be 3 years next spring. He posted the video, open access...shouldn't need to log in to see it.

cheer

Cheer/Joan - thank you and Jeff for making the video. You two are adorable together. Thanks for sharing your experiences with us. Sorry your router got fried, but in one sense I am glad it did!

pklittle wrote:Cheer/Joan - thank you and Jeff for making the video. You two are adorable together. Thanks for sharing your experiences with us. Sorry your router got fried, but in one sense I am glad it did!

thanks so much, PK! Lucky I married my best friend
cheer