to whom it may concern

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

to whom it may concern

Postby 1eye » Fri May 13, 2011 11:09 am

I finally got my follow-up. First one was in Sept. 2010, 2nd was in Feb. There was a blizzard, so my Jan appt. was a no-go. In spite of another blizzard, we made it. Anomalies in red. I am still going to be in stubborn mode for a while. I am still having problems but the left side is relatively OK, and that's where all my atrophy is. A neuro told me my right side was going too but aside from what you see here and the right-brain stuff, I can still tap out flight of the bumblebee on the right, and play melody blind (with mistakes). Not sure if it affects my slow gait. I think that's mostly left foot drag.

http://alturl.com/f5vow
Last edited by 1eye on Sun May 15, 2011 10:35 am, edited 1 time in total.
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Postby Johnson » Fri May 13, 2011 11:21 am

So the stenosis seems to have re-asserted itself? Or am I jumping to conclusions?

I forget where you were "done" 1eye. Wasn't it Dr. Siskin?

If you can tap out Flight of the Bumblebee, you are doing way better than I am. Then again, my mother had a heck of a time getting me to practice! Eventually my lessons were suspended. I can still do Ode to Joy though (like a 9 year-old. Snicker).
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Postby 1eye » Fri May 13, 2011 11:30 am

It's really a finger of speech, meaning I haven't really got any problems with my gas-brake pedal foot (reflexes, speed, sensitivity), just my clutch foot if I tried to drive standard, which is moot anyway without a license.

Yes, it was Dr. Siskin, and he spent a while on my left which is maybe why it has lasted longer. Or it could be that it was messed up worse, and the other side didn't like angio as much. I dunno.
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Postby Cece » Fri May 13, 2011 11:48 am

It may be that the stenosis is back but not as bad as it was to begin with. You've been doing some impressive biking, in general you've been doing better post-procedure?

What next?
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Postby 1eye » Fri May 13, 2011 2:10 pm

Like I said, I'm in stubborn mode for a while still. Today I think my adventures maybe caught up a bit, as I was pretty sleepy. So far things are still on the up-grade, though maybe quite a bit less steep. That reminds me: a couple years ago when I was out on my trike I had to be pushed, because I just couldn't manage a slope, and was going backwards. This time, I thought that had happened again, but then I realized I had 2 smaller chainwheels! So I haven't stopped blowing up my own little balloon. I've got a way to go yet.

The other realization from yesterday: I might've done a bit better at the mall had I remembered my "go" pills: modafinil is usually a good energy preserver.

Had friends and hard-to-reach daughter over, and the birthday was a success. A good age to surpass.
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Postby Trish317 » Fri May 13, 2011 4:11 pm

1eye wrote:Like I said, I'm in stubborn mode for a while still. Today I think my adventures maybe caught up a bit, as I was pretty sleepy. So far things are still on the up-grade, though maybe quite a bit less steep. That reminds me: a couple years ago when I was out on my trike I had to be pushed, because I just couldn't manage a slope, and was going backwards. This time, I thought that had happened again, but then I realized I had 2 smaller chainwheels! So I haven't stopped blowing up my own little balloon. I've got a way to go yet.

The other realization from yesterday: I might've done a bit better at the mall had I remembered my "go" pills: modafinil is usually a good energy preserver.

Had friends and hard-to-reach daughter over, and the birthday was a success. A good age to surpass.


Happy Birthday, 1eye....
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Postby CD » Fri May 13, 2011 7:11 pm

Happy Birthday 1 eye. I hope you had a great day with your daughter and your friends.

I had my follow-up with Dr Siskin. I never received a print out like that. :?:

What next is a good question Cece. "Wait and see" perhaps for me.

1eye what are your plans?
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my followup

Postby 1eye » Sat May 14, 2011 5:00 am

It's actually a web page made using a year 2000 version of excel to copy my two pages of results from Dr. MacDonald's lab. I don't know what the latest one can do, but in those days it would export an excel file pretty much as-is, to html (a web file). I used an editor to insert it into a web page I have and an url rewriter to point to it. Voila.

My plans are to get better till I can't get better no more, then make new plans.

You think maybe I should plan while I still can?
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Postby CD » Sat May 14, 2011 9:19 pm

1eye thanks for the info on the excel sheet. I thought you received that from Dr. Siskin's office. You did a great job making it so concise. :)

What I meant was, I might be getting a blockage in my LJV that has the 3 stents, but I plan to wait and see rather than rush to get a third procedure.

Are you in need of another procedure or are your Jugulars flowing well enough for you? That is why I asked what your plans are for now, or later.
You wrote:
as of Feb. 9, 2011

Post angioplasty residual B-mode abnormality and reflux/insufficiency in RJV at 0 and 90
deep cerebral flow abnormal
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Postby Cece » Sun May 15, 2011 6:42 am

What I meant was, I might be getting a blockage in my LJV that has the 3 stents, but I plan to wait and see rather than rush to get a third procedure.

CD, have you asked a CCSVI IR about this?

A partial blockage can become a complete blockage. Then nothing can be done. "Catch it early" is the motto, not "wait and see." :(
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Postby 1eye » Sun May 15, 2011 10:24 am

I agree if there is a clot forming, which is the more likely in a stent. I had no CCSVI stents (although if I have clots in my cardiac stents you may not hear much more from me :) ) so if I have recurring problems it is less likely, and I *can* do the stubborn thing.

I agree completely: a friend has clots, and it is too late for hers short of reconstructive surgery. :cry:
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Postby CD » Sun May 15, 2011 8:59 pm

Without another procedure they won't know if it is clot/s or scarring, etc., right? The US can only tell if there is a partial blockage or a complete blockage.

I am going to my Vascular surgeon in my state soon, to get my annual US of my Carotid arteries. I will ask him to check my jugulars. That should be okay, yes?

Then I will go to a CCSVI IR later on, but they will want to treat me I assume, to know for sure.

I feel fine, why rock the boat? I may change med ins in the next few months so perhaps I can go out of state. I really can't afford to pay for another procedure. I could have bought a new car cash already. Yikes!
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Postby Cece » Sun May 15, 2011 10:01 pm

Yes, going to your vascular surgeon soon (within network) is an excellent idea. Soon is very soon? It would be easier for me to give up worrying if there weren't such things as partially occluded stents. We've all come so far together.

(It could be thrombosis or intimal hyperplasia regrowth. I think these can be differentiated on ultrasound. Maybe not, when stents are involved? Not sure. There is compressibility with clots; intimal hyperplasia changes the look of the vein wall, as I understand it. If it's clotting, an option for the doctors is to prescribe anticoagulants. Manual removal of clots has also been done. Intimal hyperplasia regrowth can be treated by placing another stent within the stent. Both are treatable, hopefully successfully, until it's fully occluded, then it's not treatable.)
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Postby CD » Sun May 15, 2011 10:37 pm

Cece thanks for the reply. :) I had no flow the first time. Then two more stents were put in already to open the vein and bust the clotting with tPA. 8O

I really don't know how much flow I had after the two additional stents were placed.

Saying I have flow could mean lots of things, like a little flow, a lot of normal flow, or the collaterals gave me flow. I was put on the Lovenox and Warfarin and then Aspirin.

Do I really need a fourth stent in there? I can see the bulge in my skinny neck already. I am running out of room. I go next week to the Vascular surgeon, I just wish he knew about CCSVI. It is not his "Thing" I asked last year.
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Postby Johnson » Sun May 15, 2011 10:56 pm

Cece wrote:There is compressibility with clots;


Actually, a lack of compressibility of the venous lumen is indicative of clot or DVT. The vein will be solid.

I would imagine that a stent would make the vein less compressible as well - where the stent is located. It is probably wise to inform the ulltra-sound tech. that you have a stent.
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