This Is MS Multiple Sclerosis Community: Knowledge & Support

Hwebb, I threw out the idea of two hypoplastic jugulars as a what-if and already it is a reality? I wonder, since she gets benefit from treatment and if the hypoplastic jugulars have survived treatment, how small are they and is it true hypoplasia? It is better for her if they are not.... I have not heard of stents being successful in hypoplastic veins; with the poor flow, a stent might be even more likely to thrombose. Send her a link to this thread, maybe she would share the images....?

That's not surprising, i havent met a patient i didnt want to help.
I want to treat everybody. See if she can't post the images here and in the doctors thread. Perhaps we can work out some solution.

I had an interesting hypoplasia today. It was segmental, in J3 and J1 (highest and lowest parts of the ijv. ) I dilated the lower segmente with an 8 mm balloon with minimal improvement so i increased balloon size to 12 and to my surprise, there was a focal waist on the balloon that opened at moderate pressure. and stayed open!

The upper lesion was still pretty small, measuring at its smalles about 3 mm in diameter.

what was most interesting about the J3 hypoplasia was that there was no retrograde flow up into the cranium and no filling of the dural sinuses. needless to say, i thought that the dilastation of the J3 hypoplasi would be fruitless and stopped

So we will get an MRV of the dural sinuses to see what the problems are above the jugular.

Its sad for patient and doctor when no solution presents istelf.

s

Hi Dr.Sclafani,

I was wondering if you saw this and would love to hear what you think about that!
http://www.physorg.com/news140694612.html

Thanks!

I will ask her (double hypoplastic jugular) if she'd like to participate and put her images on this thread. This may take a little time, as she'll need help doing this (and I'm not sure if she holds the images at the moment).

Helen

This is interesting and could add some clues for some examples of flow issues.
http://www.thebarrow.org/Education_And_ ... rly/204853
Abstract

A 36-year-old hydrocephalic male became symptomatic with progressive cervical myelopathy caused by dilated epidural veins compressing the ventral surface of the upper cervical spinal cord. The veins were collaterals from the internal jugular veins, which were occluded bilaterally. The obstruction to venous outflow was treated with a sigmoid sinus-to-internal jugular vein bypass. The obstruction accounted for both the hydrocephalus and the myelopathy. The pathophysiology and treatment of this unique problem are reviewed.
Summary

We have presented a patient with progressive cervical myelopathy as a consequence of dilated epidural venous channels at the craniocervical junction. The obstruction of normal routes of venous outflow from bilateral jugular vein occlusion directed the venous return into the epidural venous plexus. Only the initial surgical approach yielded the diagnosis, which was not apparent from the patient’s preoperative MR imaging and CT studies. Angiography delineated the vascular anatomy and allowed treatment by creating an alternative, low-resistance circuit for venous egress.

I love a happy ending, at least for this segment of the vein. Was it an 8 mm vein as measured by ivus? So to go from 8 mm up to 12 mm, the balloon was oversized by 50%?

The plastic valve they are writing about is aimed at the m arket for venous insufficency of the legs. It will be interesting to see this develop. perhaps a version would be useful in ccsvi, but i am thinking more in the lines of a treatment for reflux, not the stenosis we see in PwMS.

Such a device might have more value in someone such as RICI who has no pretective valve. Reflux back from the heart is not good for him.

I see the problems with the ccsvi veins as very different. These valves are malformed and prevent flow DOWN toward the heart.

one of the unique challenges of the IJV is the fact that there is little flow about half the time due to posture.

Hi Dr (remember me?),
Do you know if anyone you have treated has received relief from burning leg pain and/or numbness?
thanks,
Pam

actually could you share some of the relief you have seen since doing teh procedures?

this is an interesting point! Is it fair to say that our issues correspond to the performance of the IJV while sleeping only? Or are other veins that are screwy bear some of the responsibility? Take me for example. A septum in the vetebral vein and stenosis of the jugs. Am i just screwed around the clock or what?

I was also going to ask something like that because the mechanics and results of the posture transition are still unclear to me, though I know it happens.

When supine, I think some of the load is taken off the vertebrals, and the jugulars take over (if there is no stenosis). So a) does a different part of the brain get drained when lying down? b) if there is little flow when (stenosed) jugular veins are supposed to be (but aren't) in use, because gravity isn't there to force vertebral drainage, is that why we don't dream? c) if there are problems with vertebrals too, is there going to be even worse problems?

Which position do you normally see the least flow? Is there a difference (should I sleep standing up?)?

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

pam, i certainly remember you and your husband

however, cannot recall that specific scenario

perhaps you made more of an impression

s

These are perhaps my ten most memorable reports from patients. they are not typical, for most patients have slight changes, that are sometimes pregressive improvements over time, others may not even be real. Other patients have never given me a followup

I ask all my patients now to send me a monthly email on their 'Liberation Day". hopefully many will do it so i can put what i do in perspective.

of course, i have said many times, my goal is to prolong time to disability. Everything else is a joyful surprise or a frustrating disappointment.

So here is the cases i will share with you

1. i its like all of a sudden someone took off my glasses and washed all the smudges off. But i wasnt wearing glasses.

2. i was so tired that i have never stood by the family bonfire as long as my kids can remember. Now i do. A few months later i am cross country skiing with my wife in the evenings.

3. I had a patient who was a wall walker, day after the procedure he came back and stood on one leg for what seems like a long time, and then rode a bicycle two weeks later.

4. i see in technicolor

5. I am less tired

6. I can harvest the winter wheat driving the combine and walk on the uneven terrain of the mud without falliing

7. nothing has changed

8 i feel worse, my balance is not as good

9.My feet are warm now

10. everything looks sharper and clearer

greek

you have to look at this as a life time affair, not night or day. those are extremes. As you know perfectly well, it is not just the jugulars that are at play here

its simply a lake with several outlets. if some get blocked, others will come into play. the effects are of a lifetime. i do not think we can say this causes that