Reality check for me

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

Reality check for me

Postby pklittle » Tue Nov 09, 2010 2:13 pm

I had a good conversation with Dr. Siskin last evening. I wanted to share some information here. They are simple facts that he impressed on me about CCSVI and I’m sure he wouldn’t mind me sharing some of them.

He advised me not to get any more venograms (I have had 2), as having repeated venograms can present other problems. Non-invasive tests should be used when possible.

Treating the jugular veins are not the complete answer to MS, there is much more to it.

He stressed that although he’s done hundreds of procedures, he still doesn’t know why it helps some, and not others.

Stents are problematic and should be avoided. This is becoming more evident.

As for me, as soon as I get a clear answer on the state of my left IJV (two docs, two opinions), I am likely done with pursuing MS relief through CCSVI treatment. After 6 months of having hope to no avail, I need to move on.
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Postby prairiegirl » Tue Nov 09, 2010 2:43 pm

So sorry to hear this... no doubt you are very disappointed. I hope in time that there will be more answers for you. There is so much going on research-wise right now that we should hold optimism for the future for more and better treatment options. Thanks for posting this-- and wish you the very best! Better days may still be ahead...
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Postby Interrupted » Tue Nov 09, 2010 3:58 pm

I concur wholeheartedly with everything you've written and Dr Siskin has said pk. We have to judge our own boundaries as to how far we wish to go with this, but if things don't work out first time round I feel extremely cautious about how to proceed and personally now feel the need to take a back seat and re-evaluate. The next step for me I feel is crucial not to get wrong.

I've never felt comfortable with the prospect of stents and i'm glad that more and more surgeons are using them sparingly at the present time. Though of course I understand it disappoints those hoping for them, i'm not sure they should be used liberally at present.
I also feel more caution with repeat venoplasty should be advised at this stage, if the veins collapse through repeat surgeries there is little to no options left where perhaps a bit of patience may have seen more advancement and a better outcome. :roll:
28/07/10, 04/10/10, 16/11/10 - CCSVi Dopplers x3 ** 12/10/10 - Poland procedure. Symptoms worsened. No improvement.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.
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Postby pklittle » Tue Nov 09, 2010 4:22 pm

I really only had the second venogram because I wanted to know what my lower veins looked like (MT), so the second time was locally and the doctor entered from both sides and checked it all.
Last edited by pklittle on Tue Nov 09, 2010 7:04 pm, edited 1 time in total.
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Postby Cece » Tue Nov 09, 2010 4:33 pm

I'm glad you were able to consult with Dr. Siskin. Did he have anything to say that would give you that clear answer on the state of your left IJV? I think you have more than explored the possibilities of CCSVI, it has to be difficult to walk away. The docs will keep learning, they may not have answers today but I believe the answers will come.

Do you know what problems he saw with having repeat venograms? Is it the radiation or is it damage to the veins?
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ccsvi

Postby blossom » Tue Nov 09, 2010 5:25 pm

thanks for posting. although i only had it done once with not much out of it and now worsening i understand and feel your pain. i truly wish you the best and please let us know how you are doing. hopefully soon they will be to the point with this way of treating ms that it will help all of us.

although i will not try again at this point i want to keep an eye on things here to keep up with the good and bad and hope the good news outweighs the bad.

for me and others i hope our veins at least are not worse off. i thought just ballooning you shouldn't have much go wrong. but, there are cases coming out that are.

at least you got to talk to dr. sisken. i e-mailed the dr. that did me about a wk. ago as i had some questions. haven't heard back yet. i'm sure they are very busy--but? maybe tomorrow.

i hope you do well with whatever way you venture next.
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Postby vivavie » Tue Nov 09, 2010 6:12 pm

I agree that at one point we have to sit back and wait for more research to be done. I will after I feel that I have not been under treated. I was in the first 25 of my Dr in Poland and the 1st for the one in the states. I think they were conservator and also the way they surf the Azygos makes me want for more.

Dr Sinan and Dr Petrov both said that if there is no improvement right after the procedure it is because something was missed! I also like the low restenosis rate of Dr Sinan. Those were numbers in July, I wonder what they are now?

Dr Siskin talked about is 1/3,1/3,1/3 results in July, he has been treating seriously since march or april, after 8 months does he has statistics for re-stenosis? How come nobody asks him that? maybe it's less with smaller balloon or is it more? Is he using bigger balloons now?

Even with all the problems I encounter I am not ready to give up just yet - but soon
:cry:
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Postby pklittle » Tue Nov 09, 2010 6:42 pm

Cece, believe it or not the jury's still out on my left ijv. Dr Siskin did review my second images. I will be sending him my ultrasound images too.

Vivavie, I specifically asked Dr. Siskin if he is doing anything differently or more aggressively. He said no, the same as in June when I was treated.
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Postby ClaireParry » Tue Nov 09, 2010 9:43 pm

Hi pklittle,

I'm with you here. I've had it done twice now with some benefit but nothing miraculous, time will tell.

While I still believe that CCSVI has its place in the MS puzzle, its just a part and its time to watch and see what happens with the research, while still pushing for research in our own locations.

For me the theory is sound, but as patients there is not much else we can do, as campaigners however, I believe there is.

Claire
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Postby ClaireParry » Tue Nov 09, 2010 9:50 pm

Vivavie - thats how I feel. Treated in Poland and I am convinced I have been under treated. I'm not confident that all veins were checked, and thats why I'm not ready to throw in the towel totally yet. I'll sit back though and see what happens in other locations......
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Postby Johnson » Tue Nov 09, 2010 11:36 pm

Dr. Siskin is right, I'm sure - there is more to it than CCSVI. Dr. Simka has said that "MS" is CCSVI and an "unknown factor". I have believed for 18 years that bacteria is involved; Lyme, babeosis, whatever. I read the other day that certain bacteria can modify the endothelium... My first thought on CCSVI was what causes the stenosis?"

Two links for any who are interested:

http://www.canlyme.com

http://www.bacteriality.com/

It's just information.
My name is not really Johnson. MSed up since 1993
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