CCSVI treatment for my friend's daughter

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

CCSVI treatment for my friend's daughter

Postby CureIous » Mon Sep 24, 2012 3:43 pm

My friend who went to Stanford with me in 2009 and I have a mutual friend from way back.

He befriended his supervisor back in the 80's and this is his daughter we are discussing.

She is mid 30's and has an interesting history:

She lost her mother to spinal meningitis about 10 years ago, and has had MS from her 20's. As a child, she had had issues with walking properly and maintaining balance, here's the kicker; after much testing and scanning, they deduced that the issue was her posture of all things. Once that was corrected the problems seemed to go away. Then in her 20's, here comes MS, and guess what one of her main issues is now? Walking problems. Sleeping problems. Fatigue problems. I'll have to get with her more on the exact nature of what led to the MS dx in the first place.

So my friend was talking to our other friend, and just happened to mention the whole Stanford thing, so he calls me and tells me about this very special girl, and would I mind discussing this with her? Well that's a dumb question :)

I spent a goodly amount of time "splainin things", sent her Marie's book, and she did the rest herself. Yes, I told her about her limited options for the LA area, and if she had a rich uncle to fly back East to see Dr. S. She doesn't, is a single girl with two very protective Aunts who I understandably had to pass muster with, and thoroughly (very) explained the pro's and cons of different methods of treatment, about stents, about valves, and why we may want them etc. etc.

I was also very very specific about the possible outcomes. Keep it simple. You may get something spectacular, you may get something "meh", you may get nothing, or you could get worse. You may have to wait awhile to even find out if any of the above are your lot. That we cannot compare her vs. me or anyone else, as she seems to have had a much longer, steadier course at a slower rate than I. This was so important to get across, so that she enters into treatment with a proper mindset.

So yes, she did go to see Dr. A. Her out of pocket similiar to others was 4900 mostly for the MRI and deductible etc. She is currently on Copaxone btw after a bad stint with Avonex.

Also, I have her explicit permission for all of this, the story and the images, just to mention. ;)

She had the imaging done, and sent to Dr. Haacke of course. Before I knew it she had an appt. scheduled and was treated, all within a few weeks of hearing about this. We discussed a little on the phone about her experience, and two weekends ago I met with her at her Aunt's house locally, and had a nice sitdown and I went through her CD's with her a little bit as she was a bit foggy about what exactly happened and we are still waiting to get the path report. I'll just number a few misc. items as I understood them. (Btw, on their way out from the initial consult, they stopped to gas up and met a man whose daughter was treated there awhile ago and is doing great. Also, while there for the follow up, they met someone from Canada whose parent had been treated there for Alzheimers. Their statement, "not just doing good, SPECTACULAR", go figure).

1. She was VERY adamant that I iterate that she had a pleasant experience and was treated very kindly at PI (which I know isn't PI anymore but you know...). From her POV, it was a great experience.

2. She knew going in that once those valves were gone, they were gone forever, and what function they served etc. etc. Assuming she even had nice functioning valves to begin with.

3. The drugs. She was prescribed the latest greatest which is good, I guess, but without much more info than "take one per day same time". The drug is called Xarelto, it's prescribed for DVT, it is not on the same level with Heparin, Coumadin, Aspirin, nor Plavix. It interrupts the coagulation cascade very early on, at Factor Xa to be specific. It is brand new, has had limited comparison studies vs. other modalities, and frankly is a bit of overkill AFAIC. http://en.wikipedia.org/wiki/Rivaroxaban Wiki has some on it. I would also like to direct the interested to a discussion between Dr.'s about this very thing at: http://tinyurl.com/8eyhdsk. Basically you have two lines of thought here, with the other drugs, specifically coumadin, you have a certain amount of adjustment and monitoring that is required. However the effects are reversible. Any bleeding event can be treated with Vitamin K for instance, in the event of an emergency.

With Xarelto, because it acts very early on in the cascade, this is not an option, it's effects are irreversible in an emergency, BUT, the effects also wear off quickly. It's a coin toss but myself, I'd rather have something predictable, tested, testable, and reversible, versus something new, tested only by pharmaceutical companies, and irreversible. The Dr's at the link above discuss all this in detail and it's worthwhile reading.


OKAY enough of that, on to the good stuff that's happened. Don't mean to be harsh, just want the best treatment for the best patients in the world, period. When it's friend, it's family, and that makes it personal. Color me biased ;)

4. Once again, for the most part she was VERY happy with how she was treated, and was insistent that I iterate that. No argument there. Her procedure was a fog afterwards, and she was not able to provide too many specifics, which is fine, for someone who just heard about this a little over a month ago, she's come a long ways... When the follow up appt. (consult not UT) happened, she was told there had been a possibility of a stent needed, in the renal area (she said "groin" so I assume renal), but after further review it was determined to not be necessary. So no stents. Good. Less the better. The interrogation of the AZY and renal veins appeared to be thorough and unremarkable. Fantastic!

5. Jugulars. Both sides were treated, both at the collarbone level. The waist is fairly evident. Here are the pics. Nothing fancy just what I cherry picked from the CD's.

Right side, front view, pre-angio.

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Right side, side view, pre.

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Right side, inflation.

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Right side, front view, post-angio.

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Right side, 2nd inflation, waist evident.

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Right side, post 2nd inflation. Good flow now.

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Left side, pre-angio. Bit less dramatic.


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Left side, inflation, waist evident, again at collarbone level.

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Left side, post.

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Interesting the lack of collaterals, at least that are easy to see. So many different people with differing courses and outcomes.


Thoughts? Critiques on the critique? Oh and there was no IVUS on the CD's but wasn't expecting to get that anyways, nor was there any of the UT's on the CD's, which I DID expect to see. Can't have it all I guess... :)


She is doing great so far, no ill effects, no worsening. She had a few comments, that she is finally sleeping soundly through the night, and others have noted that she is walking better (she was able to do that unassisted prior to). Also, she says that her fingers used to "tremble" when using the keyboard and that is gone. I'm sure there will be more specifics in the future, but she is VERY hopeful for the future, heck her whole family for that matter, but level headed at the same time. Still on the shots. Can't think of much else right now but will update as I get it.

Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: CCSVI treatment for my friend's daughter

Postby CureIous » Wed Sep 26, 2012 12:38 pm

Hi all, wanted to expound a bit more on the previous post. You'll note I've made some edits to previous post, this for a reason I can't get into right now, but will become evident in the future.


Just had another wonderful conversation with her this AM and got into a bit more of her history, plus some cool stories to boot!

Her onset was at the tender age of 20, what started as a black dot in her field of vision morphed overnight into sudden blindness in the left eye, DX'd as optic neuritis, treated with IV steroids etc etc. This resolved in a matter of weeks. 1 year later, same thing happened, at which point they urged her to use DMD's and she refused. This all started about 1998.

Then the balance problems started, I characterized it as "walking" problems but it was more balance related when stationary, once she started walking there wasn't too many issues. Being that she is 15 years into this, I find it interesting that her veins seem to match a slow and steady course of the disease too. No major stenosis nor collaterals.

Then in 2009 after another onset (she wasn't able to recall the sx exactly), and the finding of a black hole on her MRI, she was again urged to start betaseron, which she did. That didn't agree with her so off to Copaxone. She then stopped that again after the "trembling fingers" wouldn't resolve, which is also a side effect of the drugs. She then started again this year and has been on them ever since. Anyways she remains very hopeful and at the same time, realistic as to where this all may lead.


What was thrilling was to hear her talk about some of the other people who were there in the waiting room.

One was the one previously mentioned having Alzheimers, well not exactly, she talked to his wife in the waiting room the day she had her procedure, the lady's husband had one of those dx's that says, "we don't know, but it looks like everything else put together". Dementia, signs of Alzh. but not Alzh. Signs of MS but not MS. No man's land, worst possible place. She (the wife) had heard about this from a neighbor of theirs that DID have MS and DID get the procedure, someone they had known quite some time, and, this person went from wheelchair bound to NOT wheelchair bound afterwards, and that is why they decided to go for broke for her husband.

My friend, she talked to them the day of the procedure, and since she accidentally came the next day for her follow up, was able to talk to that very same wife the next day when they came in for a follow up also. The wife had said, and I quote, "When we came here, I was expecting and hoping to at least get 25% of my husband back, realistically, it's closer to 95%!". Hey I'm just passing it on, not sure what to make of it but it is exciting to think that there are other possible avenues for a variety of patients beyond MS, even those without a diagnosis.

That was just overnight results. This reminds me of that other patient one of my Dr's had that went to Hubbards, same thing, early onset dementia, or so the neuros said, until he got treated, same effect, dramatic turnaround.


Anyways, my friend's daughter went in armed and ready, for anything, good bad ugly or nothing and all points in between. Unfortunately not everyone is mentally prepared for ALL possible outcomes. There was someone else there that day that got the opposite, and was severely disappointed to NOT be out of the wheelchair the next day. Hope springs eternal, but reality is a pesky sniping little creature ready to nip at our heels every step of the way. Only way to combat that is knowing he's coming like it or not. Knowledge.


She goes to see her neurologist tomorrow, he knew beforehand, will be interesting (as always) to find out his response to her getting treated.

M
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: CCSVI treatment for my friend's daughter

Postby Cece » Wed Sep 26, 2012 6:36 pm

Thank you for sharing all this. Gotta love it when new people learn the facts and make the decision to go for the procedure. Really interesting to hear about the maybe-Alzheimer's patient's quick recovery. Interesting too to see the images. Looks like CCSVI to me! The contrast is darker that I am used to seeing, meaning more is injected.
Interesting the lack of collaterals, at least that are easy to see. So many different people with differing courses and outcomes.

I suppose it could mean that the jugulars had stasis but not reflux or it could mean the collaterals were higher up or the contrast was injected less forcefully or it could mean that she developed fewer collaterals or it could mean that the image was taken after the collaterals were seen but before the contrast had drained out of the jugulars? Too many different possibilities. You can see a collateral in the very first image of the right jugular and several in the next image with the head turned to the side. In that one, it even looks like there is a collateral down by the area of the valves, which is a useful place for one. On the left jugular, in addition to the usual valve stenosis, doesn't it look like there is a brachicephalic stenosis? In the innominate vein, after the jugular meets up and the vein is going horizontal rather than vertical, there is what looks like a line of contrast that then gets lighter for a block and then gets darker again. I wonder if any images were taken more directly in that vein. You can see it again in the post image. A compression by the artery?

Let me grab the image I'm talking about.
CureIous wrote:Left side, post.

Image

Some flow looks like it could be backing up into the subclavian instead of straight through the innominate.
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