CCSVI patients' log

peekaboo · Post by **peekaboo** » Tue Jul 07, 2009 8:55 am

Wonderful news mark -

wow your oink oink vein must have looked funky was that on the MRV? Will watch out for your after stanford send accurate info/terminolgy

H

skydog · Post by **skydog** » Tue Jul 07, 2009 9:49 am

Yes, It is quite different from the normal jug configuration in that area. Adds another check mark for the congenital side of this disease. I cant see how else this would happen. I will send a picture soon... Dr. Dake was perplexed by some rather unusual dark spots that showed up on the mrv. Turns out that the spots were eyes of small hurricane like vortices in the blood flowing down stream from the twists and turns in my vein. A quote from Dr. D. ( Your the odd Duck ) Oh and terms like critters and stuff seem quite common in simplified med terms, and often used by professionals. Dr. Dake considers himself a plumber of sorts. He is my hero !!! a man of distinguished courage or ability, admired for his brave deeds and noble qualities. Cheers Mark

mrhodes40 · Post by **mrhodes40** » Tue Jul 07, 2009 10:51 am

Mark I am so pleased to read your report! It is in good detail, thanks so much!

I have said that some of us are born with these oddities as our sisters and brothers may have been born with crooked teeth where we had straight ones.

My husband and I have very naturally straight teeth but our son had a cross bite; some lower teeth meeting the uppers inside the upper bite line, some meeting outside so the row of lower teeth "crossed" the uppers, in TWO places! This of course ruins the teeth if left that way, never mind how it looks.

Repair is obviously needed.

Your severely twisted veins are a fascinating affirmation of the model, these swirls and turbulent twists of the blood and your more aggressive disease really counterpoint the idea. I didn't have terrible turbulence, but MY disease is really pretty slow moving. since '91, I could jog until 2000, and I still don't QUITE use a chair yet.

If you think about it, people with dramatically poorer circulation and ALSO with poorer MS outcomes really affirms it. Really bad circulation= aggressive MS progression rather than a milder course.

How can you say then that this is unrelated to MS causation?

It seems to me it makes it pretty hard to deny this is it.

Loobie · Post by **Loobie** » Tue Jul 07, 2009 11:07 am

Great to hear that you are feeling better Mark. Onward ho!

Jamie · Post by **Jamie** » Wed Jul 08, 2009 6:32 pm

patient: Melissa

diagnosis: RRMS 8/07 (at age 31)

lesions: multiple brain lesions, 7 or so, small, round and scattered ("Steiners' splashes"), 2x Black Holes (disappeared 1 year after High Dose Chemotherapy treatment (HiCy - www.rebootmel.chrishadms.com))

symptoms: fatigue, constipation, depression, occasional numbness and tingling in leg, foot, hand (left side), leg pain, heat intolerance
EDSS: 1.5
treatments: Rebif, HiCy protocol, copaxone since HiCy.

diagnosis at Stanford: 7/09 CCSVI- right jugular vein completely occluded with many small collateral veins, left jugular congenitally malformed, actually has two small left jugulars twisted together, Dr. Dake thinks one of them may be a collateral that formed in her childhood to compensate and is now indistinguishable from the original.

treatment: 7/09 1 telescoping stent on right side (12mm), one on left side (7mm)

Returned home 7/9 - updates to follow.

Jamie · Post by **Jamie** » Thu Jul 09, 2009 9:07 am

interesting that Mark.

Mel actually had TWO left jugulars, intertwined around each other but only one strand went to the brain and THAT had a stenosis.

The right one was nearly completely blocked with a web of collaterals.

I am 100% positive that CAN'T be good for the brain.

HappyPoet · Post by **HappyPoet** » Sun Jul 12, 2009 9:27 am

Hi Guys, for the record, the subject of MS lumbar lesions was discussed earlier in the thread.

The spinal cord ends between L1 and L2.

L3 - L5 and S1 - S5 nerves exit from the end of the spinal cord and continue downward (as the Cauda Equina) to exit at their respective Lumbar and Sacral vertebrae... and MS lesions can occur anywhere on those nerves.

I know because I have an MS sensory lesion near S4-S5 that affects my anal area -- to sit can be excruciatingly painful so I cannot use a w-chair without the use of heavy narcotics.

An excellent image and discussion can be found here: http://www.apparelyzed.com/spinalcord.html

~HappyPoet

cheerleader · Post by **cheerleader** » Thu Jul 16, 2009 8:11 pm

A gentle reminder to keep this thread for Stanford patients' info only. Thanks!
Bumped for Daisy, Lew and Randi- see page one for info to include
-cheer

MaggieMae · Post by **MaggieMae** » Wed Jul 29, 2009 10:44 am

Could we have a current update from all who went to Stanford? Jamie, Loobie, Cheer seem to keep us informed. But, I'm wondering about the rest that we haven't heard from in awhile. Are they seeing any differences? I can't keep track of everyone.

The names I can remember:
Mel (Jamie)
Lew (Loobie)
Jeff (Cheerleader or Jeff w MS)
Marie (MRhodes40)
Alex Gibbs (Gibbledygook)
Sharon (Sharon)
Holly (Peekaboo)
Mark (Skydog)
Randi (Arcee)
Daisyduck
Sharon (LadyStewart)
Mark (CureIous)
James (Skydog's friend)
Mary (Sharon's friend)
Cindi (Catfreak)
Steve (Mormiles)
Co-worker's wife (Mel/Jamie)
Coach
Kate (Katelayne)
Blake (Greenwave)
Tracy (Questor)
Zap
Prof8

Please correct me if I'm wrong on any of these and I will edit.

Arcee · Post by **Arcee** » Wed Jul 29, 2009 11:55 am

Happy to update here. I think many of us were using our individual threads.

Other than dealing with the annoying coumadin monitoring and side effects, my recovery was really easy and over quickly. In truth, the simplest MS treatment I have dealt with as I have had allergic reactions to the meds.

I think the most noticeable change that I can identify is that sense of clarity I described experiencing after surgery. Specifically, I think the world literally looks crisper. I would not have said that I had vision issues previously, but then again, I thought my digital cable was just fine until I saw HD.

It is hot and humid in Boston, and yesterday when I was out walking I was wearing a long sleeve sweater to cover up my bruises. Later that day a relative asked me how I was doing in the heat and it was only then when I realized that I had been just fine - - didn't feel bad or badly. I never had horrible heat issues, but would have some tingling and just an overall blah feeling. None of that.

On the other hand, a few days after the surgery, I did have noticeable symptoms - - tingling and pressure - - in my forearms. It came and went, just like it did pre-surgery. Am curious to see if it happens again.

And overall, like others have noted, I definitely am being more social. Not sure if it because I am feeling perkier or because everyone wants to check me out in person. (Apparently many people think I will have a bolt in my neck like Frankenstein...)

So, things are good here and I am looking forward to my follow up exam in September and meeting with my neuro in October. Also, for those who it may interest, I do think my PCP is as excited about this as any of us. It's been really great dealing with her.

Can't wait to hear what they say in Bologna. Cheer, let us know if we should start a campaign to get you there - - emails, cards, etc.

LR1234 · Post by **LR1234** » Wed Jul 29, 2009 12:20 pm

Thanks for the update Arcee. Even though we know that MRI's don't actually have that much significance in the clinical presentations of MS. I am still interested to see if those that have had their CCSVI show improvements on the MRI. Can you all keep us updated when you get your follow up MRI's?

peekaboo · Post by **peekaboo** » Wed Jul 29, 2009 12:53 pm

8 wk anniversary today from the Staford experience. Not much has changed since I last checked in. Remember I have PPMS and am wheelchair bound. There's gotta be alot of healing to show any "real" changes if any. hopefully the worst would be no more progression.

I wrote Dr D on the 7wk anniversary and here was his replay

Dear Holly,

Thanks for your recent note. I really enjoy hearing from you and learn a lot from each report. For you, these updates may seem boring or unrevealing, but they are quite informative. Believe it or not, I have learned a great deal about this procedure from the experience gathered just since your (#4) encounter. My sense is that although some things are modestly improved as far as your symptoms, you were hoping for more. This is natural and I understand the phenomenon. The good news is that I have been thinking long and heard about you and two other patients (out of 25) in whom I think I should have done more. What do I mean? Specifically, in your case I have been lamenting that I didn’t treat the lower segments of your right AND left jugular veins. I think we left something on the table. Even though there was no measurable pressure gradient associated with the MRV “lesions”, I have come to believe that this is very difficult to demonstrate when someone is laying flat. If you have a gradient…like your azygous did, it is really significant. Likewise, it is clear that just the force/pressure of hand injections of contrast within the involved segment of narrowed vein can (in certain types of narrowing) artificially make the vein appear enlarged or non-stenotic---at odds with the MRV. The significance of this is not clear in terms of the relative need to treat these areas versus another type of lesion or the outcome or possible benefit for symptoms if one were to stent. In any event, if I knew then what I know now, I would have been more aggressive. Having said that, I am still convinced that we did the most prudent thing at the time--given our knowledge. I certainly didn’t want to be meddlesome and actually, we both thought at the time we were clearly leaning to the assertive side of intervention.

So, when you return, we will talk more about it and decide if more is right for you. Let me know any thoughts. Thanks again.

Best,

Dr. D

I'm going for it if I can get some $ help. We will see..still need to get an appt that is confirmed not attentative.

Arcee · Post by **Arcee** » Wed Jul 29, 2009 1:51 pm

Yes, of course, will update after the MRV follow up in September. And I am having that done in Boston, so also will pass on anything I can find out about expanding these tests here.
If and when outcome data gets published that doctors can use to motivate insurance companies, I think this procedure will be a cash cow for hospitals and they should start thinking about getting set up for it...

Jamie · Post by **Jamie** » Wed Jul 29, 2009 2:42 pm

It's great that Dr. D is so willing to say what he doesn't know or how he is learning about this alongside everyone else.

good stuff.

Ernst · Post by **Ernst** » Wed Aug 05, 2009 11:43 pm

I would be very very good if "new ones" would type their log's here. Easier to follow you all in here. Thank you.