Post if CCSVI treatment did NOT work for you

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

Postby Vivianne766 » Mon Nov 29, 2010 12:15 pm

L wrote:
Vivianne766 wrote:I'm also one of the unfortunate 1/3's that saw no improvements.
It's been more than 3 weeks.
:(


Let's hope you are one of the other 1/3rd who sees improvements within six months..


Dear every one,
It's been over 7 weeks now since my procedure. And I thought I had no improvements but the fact is there has been some. The first 2 weeks were bad. Esp. the bladder control was so bad I could not be out for even an hour.
But since 2 weeks ago I have realized a great improvement on my bladder control and that is a big deal to me. Also my energy level has been UP.
A friend of mine who did not even know I have done any procedures met up with me one evening. It was around 11 pm. That is kinda LATE for me.
Not only I was awake enough to greet her. we spent a couple of hours doing stuff. And I even made coffee and cleaned up and was actively working with her. Even got up a few times to get her stuff from the kitchen and ..... The next day she called me and asked what was going on? I was not the same old tired worn out Viv anymore.
So............ that's good news.
My walking is not better at all !!! Not yet.
Still hard to use hands for typing etc.
But well let's wait and see what happens.
My ultrasound that was done the day after my procedure still shows abnormalities. 3 out of 5 of the CCSVI criteria are present and .... stuff.
It's funny. Can some one tell me why we must do the ultrasound after the procedure? Mine was still abnormal in some ways but that's all the told me.
Any way. people hang in there and all tips all welcome.
:)
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Postby Cece » Mon Nov 29, 2010 1:19 pm

With 3/5 still remaining, something must still be disrupting flow? Maybe your case surpassed your doctor's ability to find and treat CCSVI. I am surprised he called it a day with 3/5 still remaining. :?
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Postby Vivianne766 » Mon Nov 29, 2010 5:15 pm

...well, she just told me there are still "some" abnormalities.
I got the written report about 10 days ago.
I think she saw some narrowings and opened them up. The blood flow looks different but I don't know if it's still normal.
I still feel pressure in my neck.
I guess that's all she could do.
:!:
I just don't know what was the use of paying 2K for the ultrasound.
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Postby Cece » Mon Nov 29, 2010 5:24 pm

Ouch. I thought ultrasounds were closer to $300 to $400?

The ultrasound should be helpful as a comparative tool, if you feel like you're restenosing, your doctor can order another ultrasound and compare.

If you're feeling more energy, there must be improved blood flow - congrats on that.
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Postby Vivianne766 » Tue Nov 30, 2010 2:27 pm

Cece wrote:Ouch. I thought ultrasounds were closer to $300 to $400?

The ultrasound should be helpful as a comparative tool, if you feel like you're restenosing, your doctor can order another ultrasound and compare.

If you're feeling more energy, there must be improved blood flow - congrats on that.


Thank you. Yes I do have better energy now, after 2 months. I have good days and bad days just like before liberation, but my good days are far better now and my bad days are not as bad. So... that's good !!!
The reason I posted these observations is because on the first 3 weeks when I had no improvements I was heart broken. I want others like me to know there's hope. I must add that I eat fresh fruits and vegies and I take D supplements (2000 IU) and fish oil. I think I feel better whenever I take D+ fish oil the evening before.
Last edited by Vivianne766 on Tue Nov 30, 2010 2:28 pm, edited 1 time in total.
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Re: update

Postby Peaches1 » Tue Nov 30, 2010 2:27 pm

I had the procedure June 3 by Dr Siskin. He put in 2stents in ILJV
He gave me 3mos of Plavix, he doesn't like to use coumadin
At my 4mo doppler, it showed a clot.
I did have some small improvements after the first. Went back last wk to try to remove the clot Dr Siskin couldn't remove it. So I am gack to square one with 2 metal stents
Glad I tried but disappointed that he couldn't get the clot out.
After the first procedure I had better color, more energy, walking easier. It was a slow loss of gains over the mos.
---------------------------------------------------------
Went to the Hubbard F to see if Dr G could get the clot out. He worked on me for 2hrs, but couldn't get the clot out. He did reopen the RIJV, it has narrowed some. He said my azy vein is very large, like a firehose
So that is the lastest, still on coumadin, plavix. Dr G said he thought I could drop the Plavix but it doesn't bother me to take it. Will see my GP this wk. Not any worse than before, I will still do it again, I couldn't not try
Mino/Copaxone, IVIG
LDN, Prokarin
</li>
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Postby Vivianne766 » Tue Nov 30, 2010 2:32 pm

From what Dr. E told me the Siskin team are not using stents anymore if possible.
... Oh also she entered the veins from the right side.
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Re: update

Postby pklittle » Wed Dec 01, 2010 2:46 pm

Peaches1 wrote:I had the procedure June 3 by Dr Siskin. He put in 2stents in ILJV
He gave me 3mos of Plavix, he doesn't like to use coumadin
At my 4mo doppler, it showed a clot.
I did have some small improvements after the first. Went back last wk to try to remove the clot Dr Siskin couldn't remove it. So I am gack to square one with 2 metal stents
Glad I tried but disappointed that he couldn't get the clot out.
After the first procedure I had better color, more energy, walking easier. It was a slow loss of gains over the mos.
---------------------------------------------------------
Went to the Hubbard F to see if Dr G could get the clot out. He worked on me for 2hrs, but couldn't get the clot out. He did reopen the RIJV, it has narrowed some. He said my azy vein is very large, like a firehose
So that is the lastest, still on coumadin, plavix. Dr G said he thought I could
drop the Plavix but it doesn't bother me to take it. Will see my GP this wk. Not any worse than before, I will still do it again, I couldn't not try


Thanks for your update Peaches. Sorry to hear of your clot. I can definitely relate. I was treated in June by Dr Siskin too and presently am clotted in my left ijv, confirmed by all tests. I just spoke with the doctor and he said there is nothing that can be done. Perhaps this was based on his experience with you and others that he has attempted un-clog.
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Postby longman111 » Thu Dec 02, 2010 1:10 pm

Did you have stents also?
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Postby pklittle » Thu Dec 02, 2010 1:40 pm

longman111 wrote:Did you have stents also?


No stents.
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Postby pklittle » Tue Dec 14, 2010 4:36 pm

pklittle wrote:
pklittle wrote:
pklittle wrote:
pklittle wrote:My initial venogram and angioplasty on 3 areas was done in Albany, no benefits realized.

*UPDATE*
8/27/2010

Consulted and tested by a LOCAL FSIR (yeah!) on 8/24/2010. He did a thorough job using venogram to check my lower veins for MT and also the IJR, vena cava, illiac (don't know all the names). They entered from both sides. All was flowing great except for my left IJR which is a whole mess of collateral veins that he couldn't get the catheter by to check any further up or do angio. They provided me with a DVD of the entire test and written report as well.
The sad part is, nothing can be done. I guess I'm done. CCSVI got
me.


*UPDATE*
9/25/2010

I have learned that my second venogram report is INCORRECT. The doctor was in the WRONG VEIN... thought he was in the left IJV when in fact he was in a smaller vein next to it. Sooooo, my left jug is not as messed up as I have been thinking it was for about a month.
Someone stop this merry-go-round. I wanna get off.


**UPDATE** 11/7/2010

Had an ultrasound of my left jug last Friday. It confirmed that the doctor was NOT in the wrong vein in my followup venogram. So what this means is my left jug has restenosed and grown collaterals since June.
I don't have a clue at this time what the next step is. I'll keep you posted.


**UPDATE** 11/18/2010

Now I will have an MRV. There are still doubts regarding the state of my left IJV. Sometimes these things are not cut and dried, particularly when more than one doctor is involved. In hindsight I wish I had not started down this road.


**UPDATE**. 12/14/2010
Ok, I've had the MRV and have the result. After all the uncertainy due to differing opinions, I know ( today anyway) that my left IJV is clotted. I have been advised that aftereffects of removing the clotting are too risky. I continue to progress downward with my mobility and now often use a walker rather than a cane. I am weighing the risks of retreatment and trying to decide whether to get the clot removed anyway. I am told this often doesn't have the desired outcome.
Some positive news.... My vision has improved and this was just confirmed by my annual eye exam. I aced the color test, something I haven't done for about 15 years! also, my vision improved too! I was blown away. So, I know changing blood flow, even though I re-stenosed, did make a difference. That's why I'm mulling over whether to take the risk to try again, in hopes
of gaining more.
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Postby Cece » Tue Dec 14, 2010 5:22 pm

pklittle wrote:**UPDATE**. 12/14/2010
Ok, I've had the MRV and have the result. After all the uncertainy due to differing opinions, I know ( today anyway) that my left IJV is clotted. I have been advised that aftereffects of removing the clotting are too risky. I continue to progress downward with my mobility and now often use a walker rather than a cane. I am weighing the risks of retreatment and trying to decide whether to get the clot removed anyway. I am told this often doesn't have the desired outcome.
Some positive news.... My vision has improved and this was just confirmed by my annual eye exam. I aced the color test, something I haven't done for about 15 years! also, my vision improved too! I was blown away. So, I know changing blood flow, even though I re-stenosed, did make a difference. That's why I'm mulling over whether to take the risk to try again, in hopes
of gaining more.

I am hoping for vision improvements, congrats on getting those at least.

When the IR said the aftereffects of removing the clot would be risky, what did he mean by that? If it could be removed, then ... it should be, right? I understand the alternative is to try to get it removed but not be successful. Or is it a risk of a piece breaking loose and traveling to the lungs? Or is it thrombolysis drugs injected, so risk of internal bleeding?

If I understand this right, you had three areas treated, two of them have remained open, and one clotted which makes it worse than it was to begin with. I would hope that the two that are open are helping. But if you're progressing, that's not a good sign.

Wish that the answers were easy and the path clear.

Yesterday I told my husband about what Dr. Sclafani's doing with hypoplasia treatment, I'm not sure if I'd want the accelerated version of that as opposed to the every-few-weeks version. Even a vein that is not much to lose could be left as-is for awhile until the technique gets worked out. But I'm also thinking that, at the state of CCSVI treatment today, many who get treated now will need repeating as more is learned, and despite trying to hedge that by going for the best, I'd be surprised if this is one-and-done.
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Postby pklittle » Tue Dec 14, 2010 6:12 pm

When the IR said the aftereffects of removing the clot would be risky, what did he mean by that? If it could be removed, then ... it should be, right? I understand the alternative is to try to get it removed but not be successful. Or is it a risk of a piece breaking loose and traveling to the lungs? Or is it thrombolysis drugs injected, so risk of internal bleeding?

If I understand this right, you had three areas treated, two of them have remained open, and one clotted which makes it worse than it was to begin with. I would hope that the two that are open are helping. But if you're progressing, that's not a good sign.


The risks are drugs/internal bleeding, with an increased risk of falling from poor balance leading to internal bleeding. Another risk is from having a stent to keep it open. Yet another is more clotting.
edited to add another: heart beat irregularity.

Your summation in the second paragraph is spot on.[/quote]
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Postby Cynister » Sun Dec 19, 2010 12:46 pm

I was treated October 11, 2010. I have had no improvement. I was thinking that I was a slow healer and that perhaps improvement, or at least no further decline, were in my future. Unfortunately I am experiencing another relapse which makes typing difficult so I'll keep this short. I'll use the questions from page 3 of this thread.

1) How long ago did you have the liberation procedure? Two months and one week ago.

2) What do you mean by 'it did not work for me'? Did you get worse? Did you have another relapse, if so how soon afterwards?
Saw not one iota of improvement then had a relapse that started about 6 days ago.

3) What sort of MS (or other condition) you had before the treatment and what were your symptoms. For how long have you had MS. How progressive was your condition.
RRMS, diagnosed 12 years ago. EDSS of only 3.5-4, so have been relatively lucky. Have been able to work mostly full-time as a teacher, even.

4) What sort of venous abnormalities did you have and where? Were all your venous abnormalities successfully treated, if so by what means (balloon angioplasty, stent or other?
Right IJV and ayzgos were found to be normal at the venogram although the azygos blood flow looked suspect in the tests. Left IJV ballooned in three places.

5) Are you having a vascular follow up? Have you checked that your veins have not restenosed?
No, but never felt any difference and the doppler the first time didn't show the stenoses.

I wish I were a YouTube case but plan to be retested elsewhere in a year or two when things have advanced a bit. Not giving up!
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Postby PointsNorth » Wed Dec 22, 2010 3:59 pm

PointsNorth
RRMS since 2003. Recently diagnosed as SPMS. I was on a downward slope aprox. 1-year before procedure.

1. Treated: Albany, October 7th. Coming up to 3 months. Considering Doppler US but not sure of its worth($) at this point

2. Fatigue and balance improved for 8-days following procedure. Gradual decline since that time (as before procedure).

3. RRMS since diagnosis in 2003. Recently diagnosed with SPMS.

4. Narrowing of RIJV as shown in initial MRI/V (June '10). IR said I had narrowing in LIJV as well with collaterals on same side. Both Jugulars and Azygous treated (12 times total). Doppler US taken day after procedure showed that I tested positive for two of the Zamboni criteria?

5. Still considering the value of follow-up at this point. As per Z-criteria, I was re-stenosed the day after the procedure! No follow-up (doctor)available locally.
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