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Donnchadh wrote:My thinking is that the accidental injury is what caused the venous stenosis. On my lower IJV-both sides-there were damaged valves which have been successfully opened by venoplasty, and they have stayed opened post-op. There were no bones compressing against these sites.

Most pwMS's valves look very smooth, as compared to patients with lyme disease who had valves with ripply edges. The smooth thickened obstructing valve might be the congenital kind, the ripply valve might be the acquired-through-a-disease-process kind. I don't know if an accident could damage a jugular valve or whether it would look smooth or ripply in ivus but I would like to know!

Tons of admiration for you, Donnchadh, for pursuing this to the lengths that you have.

Want to put out an recommendation for using the 3D CT scan for diagnosis. The imagery is absolutely amazing. By using contrast dye, it is possible to isolate the veins and rotate them.

Any stenosis, or narrowing, is quickly spotted.

Cost is much less than a MRI, the session lasts only a few minutes, and you are not inserted into a narrow tube.

Donnchadh

Just want to inform any followers of this thread that the companion neck surgery to the right hand side will be performed tomorrow [25 Oct].

If successful, a venoplasty will be scheduled in about six weeks later to completely open up the distal IJV stenosis.

Donnchadh

Donnchadh wrote:Just want to inform any followers of this thread that the companion neck surgery to the right hand side will be performed tomorrow [25 Oct].

If successful, a venoplasty will be scheduled in about six weeks later to completely open up the distal IJV stenosis.

Donnchadh

Serious good wishes tomorrow.
Please report back as soon as you can.

Bummer alert!

The throat surgeon had to cancel the day before the scheduled procedure. The hospital is attempting to re-schedule the procedure but that's not easy since two surgeons are involved. So as of today [28 Oct] its up in the air.

I now know how Charlie Brown felt after Lucy yanks the football away.

Donnchadh

I may have some similarities to yours. I had a bad fall predating my diagnosis. I fell of the top (never stand on the top!) of an 8 foot tall step ladder, onto my tailbone on a gravel driveway. On the other hand, during 13 of the 15 years I spent in the wilderness of non-diagnosis, I had a hobby (!!) farm, where for the first several years I repeatedly made the same mistake of trying to haul all the leaves off my front yard, to a mulch enclosure where I stood up to my ass in leaves in varying states of decay. I would be very surprised if many ticks had not had my legs for lunch.

Your situation sounds similar to mine, but I doubt I'll be able to inspire the Ontario system to give me any 3d CT scans.

I eye, have you tried NUCCA? I have had a lot of success seeing Dr Jim Moore in Stittsville - he is so close to where you live.

1eye wrote:I may have some similarities to yours. I had a bad fall predating my diagnosis. I fell of the top (never stand on the top!) of an 8 foot tall step ladder, onto my tailbone on a gravel driveway. On the other hand, during 13 of the 15 years I spent in the wilderness of non-diagnosis, I had a hobby (!!) farm, where for the first several years I repeatedly made the same mistake of trying to haul all the leaves off my front yard, to a mulch enclosure where I stood up to my ass in leaves in varying states of decay. I would be very surprised if many ticks had not had my legs for lunch.

Your situation sounds similar to mine, but I doubt I'll be able to inspire the Ontario system to give me any 3d CT scans.

Interesting. Are your symptoms progressive in nature? How soon did they appear after your accident? Was your head or neck involved in the accident?

Donnchadh

My procedure has been re-scheduled for 22 November and I hope it doesn't get bumped again! I want to get this over with!

Donnchadh

The procedure went well with no complications. My "hunch" turned out to be correct-there was a bone spur on the right hand side of the C1 atlas vertebrae which was compressing the IJV. The neurosurgeon followed the right IJV up from the horizental incision [which was about halfway between the jawline and base of the neck] to locate the stenosis. Unlike the left hand side, the vein stenosis is much shorter in length-basically just the area opposite the bone spur.

The bone spur was somewhat different in shape than was the right hand side. It was ground away by a diamond drill so it no longer pushes against the IJV. There was also some scar tissue tethered to the IJV which was also removed.

The neck has to heal up and I am tired, which is also what had happened from the previous procedure last May to the left hand side. This procedure was shorter time wise then the one in May; 2 hours versus 3. This time I stayed in the general hospital overnight instead of the three nights in the ICU....learning curve improvements?

There have been no improvements nor has any symptoms worsened but then I didn't expect any changes. The IJV didn't spontaneously "pop-back" into shape. I have a follow-up post op office visit with the neurosurgeon on 5 December and I hope to schedule yet another venoplasty attempt on the right side stenosis.

Donnchadh

The post-op office visit was instructive. Turns out that the IJV was flattened against a bony knob on the Atlas; in addition it was also thethered to it. The neurosurgeon removed [ground by diamond drill] this and the IJV is now completely free.

The next step is to have a venoplasty to break up the stenosis.

I am getting excited to be at this stage at last! It is now apparent why all the previous venoplasty attempts had failed.

Donnchadh

cheerleader wrote:What a story, D!
Thank you for sharing your diagnostic and treatment process with all of us.
Any chance someone in your treating/diagnostic team can write up a paper for a journal submission?
Getting these cases documented and shared can only be of service to others who may have similar issues, and help us keep CCSVI research moving forward.
http://ccsviinms.blogspot.com/2013/10/m ... rward.html
Hope so!!
best,
cheer

At the last office visit there was talk about writing up a paper about my case, and the neurosurgeon being willing to have his name released. They are waiting to see if there are any symptom improvements after my next venoplasty. This is a first for them and I am not aware of any other doctor doing a similar procedure.

I promised not to give out his name without his prior knowledge and permission.

I am not aware of any "MS" patient having his stenosis discovered by a surgery. Usually it's the result of imagery [ultrasound, MRI, 3D cat scan] or a venogram. The neurosurgeon traced the entire length of the IJV, located the stenosis, and removed the bone spur on the C1 vertebrae.

Donnchadh

The venoplasty on the right IJV has been scheduled for Monday 16 December! The hospital called and gave me the date on very short notice and everything just clicked. My PCP got me in and gave his pre-op checkover and approval. Because this date was within the 30 day window from the last procedure, I didn't have to repeat the pre-op blood tests.

The neurosurgeon is only going to do the right hand side; leaving the more complex problem of the stenosis in the left sigmoid sinus for later.

Going into this procedure, the exact location of the stenosis is known and now it is completely free of any impingement. So I am hopeful the right IJV can be fully opened up.

Donnhadh

Best wishes!!

Wishing you the best!