money shots - this is CCSVI

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

money shots - this is CCSVI

Postby Johnson » Sat Mar 27, 2010 12:06 am

On Wednesday, I went to False Creek SC for Doppler US with Dr. Cooperberg, who is skeptical of Zamboni, Simka, et al. But he did find a narrowing in both IJVs, turbulence in both, weird valves in the right IJV, and found it rather odd that neither of my IJVs collapsed when I was upright (VVs are fine). I postulated that there was a blockage below his scan, which prevented the IJVs from draining whilst his transducer was in place. It occurred to me that the stenosis would have to be significant to prevent the IJVs from collapsing immediately...

Today, I went for the MRV. Like all of you who have been screened, I was worried that it was not CCSVI that causes my neurological problems, and that it might be something more nebulous, and not so simple to treat.

Here are the "money shots" (they cost $1851!). Nothing nebulous, but I sure hope that it will be "simple" to treat. I have a feeling that I am looking at stents required, perhaps more than one - especially on the right. I am calling that stenosis on the right a "Penny Whistle Stenosis"(TM).

Hey! Even a penny whistle costs money!

The Money Shots;

Dual stenoses - Left IJV
Image

Collaterals - Left IJV
Image

Right IJV is looking good!
Image

Er, maybe not...
Image

It's funny, but I feel such relief to see my messed up jugular veins. Even though I had to drop $2350 to find this mess, I found myself laughing with glee, and shouting "BINGO", when I got home and loaded the DVD.

Pay dirt! These is the money shots for me. Now, I have to start hounding IRs, Vasc. Surgeons, etc., to try and get "done" at home, before my May intervention in Poland.
My name is not really Johnson. MSed up since 1993
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Postby ErikaSlovakia » Sat Mar 27, 2010 12:54 am

Hi Johnos,
I am far from a doctor so my words might mean nothing but I heard from Dr. Simka and have read from Dr. Zamboni that it is often enought to treat on stenosis in the jugular even we see two and the stronger blood flow will fix the secondone by itself.
As you have 4 (at both sides) I would say you would need 2 stents but of course maybe angioplasty is enough - as I am not Dr. Simka or
Dr. Zamboni or Dr. Dake I am not able to decide.
Anyway: GOOD LUCK! :)
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby sbr487 » Sat Mar 27, 2010 1:06 am

"Not really Johnson"

I have around this forum since 3-4 months now and your comments really make me sit back and think. I used to always think the magic people like you can create if you are healthy and I cannot explain how much happy I felt reading your post.

You have crossed the toughest phase. Things can only improve from here on ...

Wish you the best ... enjoy this period while you prepare for one more final action ...
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Postby hope410 » Sat Mar 27, 2010 1:07 am

Johnson, is there a reason why the ultrasound and MRV weren't done the same day?

Do you receive a printed report identifying the blockages, etc. found on US and scan? Did you put the red parts in? If so, are you repeating a doctor's description that you heard or read? Why do you think stents are needed?
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Postby eve » Sat Mar 27, 2010 1:17 am

Amazing, how your right jug looks fine on one angle and uhm not so fine :lol: 8O on the other. Another reminder why it will be so important to be scanned by people who know what they are doing.

Definately moneyshots - I whistled!
dx 2002,RRMS,  suspected begin of MS 1978 (age 10)
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Postby Johnson » Sat Mar 27, 2010 3:52 am

ErikaSlovakia wrote:Hi Johnos,
I am far from a doctor so my words might mean nothing but I heard from Dr. Simka and have read from Dr. Zamboni that it is often enought to treat on stenosis in the jugular even we see two and the stronger blood flow will fix the secondone by itself.
As you have 4 (at both sides) I would say you would need 2 stents but of course maybe angioplasty is enough - as I am not Dr. Simka or
Dr. Zamboni or Dr. Dake I am not able to decide.
Anyway: GOOD LUCK! :)
Erika

Thank you, Erika. Your words mean a lot to me, and you are right. I hope that I need no stents, but that is my dream. I think that it is right that treating one stenosis (lower?) will relieve the others (upper). The one that worries me is the "Tin Whistle" on the right. That is a long, drastic narrowing, and looks like the "weird valves" might be in the middle of it. I think of Rici. I trust Dr. Simka, from all I have read and seen of him.

If I make it to Prague, I hope maybe to make it to Slovakia, and take you out for lunch! I hope you are well.

hope410 - US and MRV were on different days because the next day I could do both was in May. I live in Vancouver (even though I showcase all the strange town names of BC in my profile), and it was not inconvenient for me to do it over two days. In fact, it was better for me, as I would have been wiped out doing them on the same day.

I do not have a report yet (that will be in 3-5 business days), but I know my way around anatomy, and MRIs, etc. (in a limited way), and diagnosed my self (I apologize to any doctors out there - I am the worst, and best patient!). The red annotations are mine. The technician made no comment to me, so the observations are all mine, and I could be very wrong in my interpretation.

I fear stents are needed because I see 4 stenoses, and I really don't want stents. Nothing has ever been simple for me (no matter how blessed i have been), so I must accept some kind of "complication".

sbr487 - the only thing "magical" about me, is my thinking... It drives "my" psychotherapist nuts! Grin.

Thanks so much, and I'm glad that my joy has brought some to you. Just wait until I get fixed up! I feel as if I have joined the club. I did not feel that when I was just whining about my problems. It is quite incredible to me how empowered I feel with the pictures of a real problem.

eve - yes, I agree! When I first started looking at the pics, I was thinking that there did not seem to be anything sinister, but as I rotated the views, I started laughing, and being really strangely happy. I almost forgot how messed up I am!
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Fight for local treatment

Postby MarkW » Sat Mar 27, 2010 4:16 am

Hello Johnson (not really),
Great pictures, I wish I could get these done in Oxford (England). I think Erika's suggestion of doing less and seeing what happens is very sensible. Interventional Radiologists/Vascular Surgeons should have much fewer professional problems if you ask for venoplasty only. You may be lucky and find that solves your stenosises (not sure if this is the plural). NB Prof Z started with venoplasty. I understand that money might be a problem as you still could need stents or more venoplasty later on. However getting local venoplasty is real pioneering for so many pwMS in your area. I wish I could get the IR/VS s to do this here in Oxford. They definitely have the skills but the Neuros are obstructing me.

Best wishes,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby JohnAm » Sat Mar 27, 2010 10:39 am

Hi Johnson,
Congrats! Nice pictures - I'm a bit envious I must say - wish I had the same pics to show the world. :)
I had an Ultrasound five weeks ago and a MRV the week after at the local hospital. The sonographer told me, as he examined me, that he could not find any structural/flow problems in my jugulars, triplex US was used. Now this Monday I will meet up with the vasc doc to get info about the MRV pictures. Public hospital so it has taken some time to see the doc again. I'm anguish to see those pictures!
I had a thought of getting this done locally since the hospital here has a state of the art diagnostic center with all and every equipment needed to do the diagnostics and a vasc center to do the procedure. Still it is, as far as I understand, many times an art of finding stenosis/occlusions and such. Given this fact and that this is all new I made up my mind last week to accept the date I have with Dr Simka on the 14th of April. His team has a lot of experience now and I feel very confident in going to Poland especially with the “should I have or not have stents”. I have the impression that Simka is avoiding stents if possible and if I need a stent I like that judgment from someone wise from experience. Well that just my opinion.
Thanks for sharing!

MarkW,
My neurologist and the MS RNs basically ignored the CCSVI info I sent to them in October 2009, I reminded them twice that I wanted a comment on what their policy was on CCSVI (I'm not easily deterred) I received a letter via mail saying they were ”observing”. So I decided to side step the neuro competely and wrote a self-referral to the vascular department. We will see what happens on Monday I have a feeling that the vasc doc has talked to the neuro... should be interesting! (Sorry if I am highjacking here)
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Postby annad » Sat Mar 27, 2010 12:13 pm

Johnson!
Way to go! Nice pics! You are allowed to jump for joy and yell, bingo! Good luck on your search to find someone back home!!! I believe you'd be the first to "break the code" if you did!
Congrats!
:)
a
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Postby ErikaSlovakia » Sat Mar 27, 2010 12:56 pm

Johnson wrote:...I trust Dr. Simka, from all I have read and seen of him.

If I make it to Prague, I hope maybe to make it to Slovakia, and take you out for lunch! I hope you are well.

hope410 - US and MRV were on different days because the next day I could do both was in May. I live in Vancouver


Hi Johnson,
Dr. Ludyga will see it exatctly and he can decide what you need only when you are on the table and he will inject thy dye and try ballooning - after the decision comes. I wish you the best possible solution.
I have never felt my stent. I even slept on that side the first side. I have never had pain or any problems because of it. Of course I do not know what the future brings. I only strongly feel it will be just OK.

In case you will have enough time and you come to Slovakia, come to Piestany - it is a nice small spa town. It is only 33 km far from my town.
There is a direct bus from Prague to Piestany - it takes about 6 hours to get there.
In case you make it we will meet there.

I have two cousins in Vancouver. I was there in 1992.
I am not healthy, I still feel my MS but I really do not have any problems because of the procedure. I for sure do not feel worse and I for sure did not have any attack. I am 144 days after my procedure - almost 5 months.
I will post a report in couple of days.
I have realized only couple of days ago that I do not feel any pain behind my left eye since the procedure - before it was every week for at least an hour.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby TFau » Sat Mar 27, 2010 1:48 pm

Congrats Johnson - I'm so happy for you!

I wish you could get the treatment in Canada, but maybe you need the experience of the Polish doctors?
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Postby CureIous » Sat Mar 27, 2010 3:08 pm

Gorgeous. Most beautiful thing I've ever seen. Congrats dude.

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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Postby Cece » Sat Mar 27, 2010 4:09 pm

wow, you are right about them being money shots! Now to get those fixed up!! Well done!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Johnson » Sat Mar 27, 2010 5:01 pm

Thanks, all. I still can't stop grinning, and my mood is hugely uplifted. I am so looking forward to getting that mess cleared up.

Mark - I knew you'd dig those pics. Thanks amigo.

TFau - I must do all I can to get it done here - firstly because I would rather put the money towards my son's future - though, I suppose I am doing that by getting fixed, but we have doctors in Canada, in Vancouver, who can do the work. We need to push for it here, so that people who don't have high limits on their credit cards can get it done as a matter of course. If I do end up in Poland, I will seek re-imbursement from the Gov't, and take them to small claims court if I have to. I'll have the energy then, and I am a very determined person.

I think that Dr.s Ludygya and Simka have the most experience with our problem now, but angioplasty is angioplasty. If Canadian docs can't do it, the medical system must pay for treatment abroad. The trick will be for a Canadian doctor to determine that blocked cerebral outflow warrants urgent attention. It's a no-brainer. Pun intended.

Erika - I hope that you can feel better in time. I am certainly glad that you are not feeling worse from MS. Do you know what was causing the pain behind your eye? Did you have that pain before your liberation? At least it is gone now.

Take care of yourself.

JohnAm - Thanks. I was always a bit envious of other people's pics too. It is hard to believe that we have fixable problems until we can see them. I feel, in a way, that it was worth the money, just for my change in attitude. I also have something tangible to present to Doctors than links and print outs of Dr. Zamboni's work. "Gee, Doc, do you think that these vascular problems might have to do with the pain in my neck, the transient pains in my upper chest, my dizziness and headaches? Do you think I ought to get them fixed? MS? Yes, I had an optic neuritis, and a few other MS-like symptoms, but haven't had that for years. Why? Do you think that MS might have caused these vein problems? Interesting..."

I don't know what your Freedom of Information laws are like (nor, where you are), but in Canada, we have a right to copies of our records (of any type), including MRIs, US, etc. Perhaps you could get those copies thusly? You might then be able to get other opinions from broader minds.

Good luck.

MarkW - thanks. I think that there are private clinics opening up any day now in the UK. Of course, the NHS probably won't pay, but you could get them, I would hope. Check at the MRSC site for that info. I believe there is to be a clinic at Manchester, and another in London - which is a bit closer to you.

My hope is that a venoplasty will do the job, and I would not be too concerned if it needed re-doing in a year or two. I'd take the stents if advised that it was the only viable route, but I'd rather not. Sometime in the next couple of months, I will know my outcome. I can read abstracts, and look at my pics, and such, but I am just a starving artist, without the benefit of medical training. The IR and Vascular guys will know what's advised once they get in there. I hope.

Whew. I hope I didn't miss anyone. Grin.
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doctors in Vancouver

Postby ljh » Sat Mar 27, 2010 5:47 pm

How can we get BC/Fed governments on side? I believe we have to detach MS from CCSVI- too controversial at this time. Let the B.C. Interventional Radiologists treat our veins just like they do for dialysis patients, etc.
Johnson, you are not alone in your determination!
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