Donnchadh: Update report; so close, yet so far.

[Donnchadh]

I am posting this from Phoenix AZ because I had an appointment with Dr. Nakaji at the Barrow Neurological Institute.

They require all your reports and test images to be sent to them before scheduling an office visit, with a review charge of $100 upright. Not covered by insurance.

After waiting about a month to arrange a flight [$560 round trip] and staying with my nephew's family, I made the journey by myself. US Airways really went out of their way to assist my movements. A $10 tip to the wheel chair guy goes a long way in getting assistance,

Some background. I have had an expandable mesh stent [7mm x 40 mm] implanted in the distal [upper] right internal jugular vein in July 2014. This was done by Dr. Lee at the University of Chicago medical school. It turned out to be a heroic 8 hour procedure because the vein stenosis was so severe [scarring from earlier attempts?]. A follow up procedure done this April showed that it is widely patent [wide open]. Everything is great with the right side now. No clotting, no vein occlusions. Dr. Lee did a great job with a very difficult case. I do highly recommend him, with the following proviso explained below.

However, Dr. Lee declines to do the stenosis on the left side based on that fact the inner cranial pressure is now equalized throughout my brain and is at normal values. Before the procedure, it was very high [about three times normal].

His position is that a single internal jugular vein should be able to handle all the blood drainage for my brain and it isn't necessary to open up the left side.

At the conclusion of my office visit [which also involved some observations, questions, and exams by an intern], Dr. Nakaji also stated that it isn't necessary to open up the left side stenosis, again giving the reason that one jugular vein is sufficient. I had a venogram scheduled for the following day, basically to determine if the cranial pressure is indeed at normal levels and if it is the same reading above and below the left side stenosis. This is basically an repeat of a procedure done just four months ago.

Dr. Nakaji then dropped a bombshell when he stated that my problem is not the vein stenosis but that there must be some bone compression. When I told him that already had two separate procedures done by neurosurgeon, Dr. Farhat, and that the bone spurs were successfully removed, he just claimed, "He must have missed some."

Dr. Nagaji had his mind made up before he even examined me. He was unwilling to open up the left side stenosis in the IJV. When I tried to explain that nearly all my "MS" symptoms cleared up after an earlier attempt on the left side, he basically just ignored me.

I do not think that Dr. Nakaji understands what CCSVI entails. He might be a great neurosurgeon for other conditions, but to me, he was useless.

I cancelled the venogram and his decompressive surgery. The following day, after thinking about Dr. Nakaji's diagnose, I should have asked, "If one internal jugular vein can handle ALL the blood drainage from the brain, then why are all the collateral veins still present?" They should have collapsed from not being used.

Just have to find an Interventional Radiologist willing to do a straight forward plumbing job. The "you only need one IJV draining" is a new objection I had never heard of before concerning CCSVI treatments.

With the advantage of hindsight, I now know that I had eight different things wrong in my neck. Seven have been successfully treated; only the left IJV stenosis is left!

Donnchadh

[Donnchadh]

I misspelled the doctor's name. It is Nakaji.

Donnchadh

[cheerleader]

Wow...you've been on quite the journey.
Sorry that you've been unable to get that left IJV successfully treated. I do know there are many differing opinions on what is essential for brain drainage. Many think one IJV and collaterals are just fine. But we really don't know if that's fine for you, as an individual with MS!

Dr. Sclafani seems to be the most experienced IR practicing now, who understands the vast varieties of stenoses. Dr. Dake was very matter of fact in stenting Jeff's jugular veins--which are still patent and flowing 6 years later. But while he and Dr. Siskin and other pioneering IRs are no longer treating "CCSVI", they still treat venous stenoses of the major veins, unrelated to an MS diagnosis. I really wish this was easier for you!! (Bet you do, too!)

Quick questions---are you able to stay physically active? Have you implemented any other cardiovascular health components, i.e. diet, UV rays, smoking cessation, better sleep habits, stress reduction? Have you found any success with similar lifestyle interventions. How are you doing (other than having no left IJV)?
cheer

[Donnchadh]

Right now, I am very sleepy. The trip has drained me physically and it was an emotional roller coaster ride. Will answer your questions later.

I have an appointment with Dr. Nero O.

Donnchadh

[Cece]

I cancelled the venogram and his decompressive surgery. The following day, after thinking about Dr. Nakaji's diagnose, I should have asked, "If one internal jugular vein can handle ALL the blood drainage from the brain, then why are all the collateral veins still present?" They should have collapsed from not being used.

I think that is the exact question that needed asking.
If his mind was already made up, though, he'd have dodged that one too.