Post if CCSVI treatment did NOT work for you

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

Postby pklittle » Sat Aug 21, 2010 12:47 pm

I suggest a thread be made that mirrors the positive CCSVI Tracking project. It would be very helpful. It should be maintained like that thread with no other responses except results.

I am interested in the Good, the Bad, and the Ugly. It would be more helpful.


Actually, the formatted tracking thread is for good, bad, and no change.

This thread is for us bad and uglies to report and talk.
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Postby KDGO » Sat Aug 21, 2010 12:58 pm

hi pklittle
sorry for all the questions...dild they enter left or right?
you had 3 balloons correct. where?
were they ballooned to get a good flow while you were
on the table or just an ok flow?
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Postby Cece » Sat Aug 21, 2010 1:11 pm

pklittle wrote:Actually, the formatted tracking thread is for good, bad, and no change.

This thread is for us bad and uglies to report and talk.

I agree with this.

Pklittle, will Dr. Siskin be scheduling you for a re-check, or does the lack of even initial improvements discourage him from doing this? Or will you follow-up with another doc (maybe Dr. Sclafani when he becomes available, he will use ivus)?
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Postby pklittle » Sat Aug 21, 2010 1:23 pm

KDGO wrote:hi pklittle
sorry for all the questions...dild they enter left or right?
you had 3 balloons correct. where?
were they ballooned to get a good flow while you were
on the table or just an ok flow?


Right. (I incorrectly said left earlier)
2 ballooned areas in left IJV
1 ballooned area in right IJV
Flow: I am not sure how to answer this. I do know from the report that I later got that my reflux was reduced, which implies I still had reflux post angio
Last edited by pklittle on Sat Aug 21, 2010 1:50 pm, edited 1 time in total.
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Postby pklittle » Sat Aug 21, 2010 1:30 pm

Cece wrote:
pklittle wrote:Actually, the formatted tracking thread is for good, bad, and no change.

This thread is for us bad and uglies to report and talk.

I agree with this.

Pklittle, will Dr. Siskin be scheduling you for a re-check, or does the lack of even initial improvements discourage him from doing this? Or will you follow-up with another doc (maybe Dr. Sclafani when he becomes available, he will use ivus)?


Cece, Dr Siskin did not offer a recheck, but I am very fortunate to have consulted with a local FSIR that now has all my ccsvi records from Dr Siskin. I am going to be rechecked this week locally.

I hope I didn't just jinx myself.
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Postby KDGO » Sat Aug 21, 2010 1:31 pm

pklittle wrote:
KDGO wrote:hi pklittle
sorry for all the questions...dild they enter left or right?
you had 3 balloons correct. where?
were they ballooned to get a good flow while you were
on the table or just an ok flow?


Left
2 ballooned areas in left IJV
1 ballooned area in right IJV
Flow: I am not sure how to answer this. I do know from the report that I later got that my reflux was reduced, which implies I still had reflux post angio

pklittle
I agree reduced does not mean eliminated...that will be a key perhaps for beter outcomes. This is my story too.
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dvt

Postby daytrader » Sat Aug 21, 2010 8:59 pm

I could see better, think clearer, no ANXIETY, sleep BETTER, and 6 days later it all changed at 3:32pm. I have a blood clot in the left jugular. Finally after 4 months I have an angioplasty scheduled on 9/10 to reopen the vein. I hope the valves are still good. Lovanox and coumadin after this time. Doing that now. I also hope they can even get the wire through to open it as I know first hand that this is not always possible in the subclavian vein. I am worse off now than before and hopeful to correct this.

I also did the alemtuzumab trial and read a 71% disease free after 3 yrs. Hopefully this combo of no bad t cells and fixing the flow delay will allow me a reasonable life. Time to heal will take a long time. The brain is slow to heal as I read.

I expect nothing and am grateful for anything. My former airline pilot life would be great, but a LIFE would be enough.

Dave
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Re: CCSVI Tracking Thread

Postby NHE » Sat Aug 21, 2010 9:11 pm

Hi Japentz,

japentz wrote:Hello all,
I've not had angioplasty yet, although doppler showed reflux in both jugular veins. I am awaiting my date. There are a lot of posts to this thread that are responses. I am interested in a real compare results thread.

I suggest a thread be made that mirrors the positive CCSVI Tracking project. It would be very helpful. It should be maintained like that thread with no other responses except results.


There seems to have been a misunderstanding somewhere. The tracking thread is not a "positive results only" thread. Everyone who has been treated for CCSVI, whether they have had positive, neutral, or negative results, is welcome to post in that thread. That was the intent of the tracking thread, i.e., to have a place for all CCSVI patients to post their results in one place to allow for review and comparison.

NHE
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Postby LR1234 » Sat Aug 21, 2010 11:03 pm

Hi Day, SOrry t hear about your clot.
When did you find out the clot had happened? (not just when you felt it but when a doppler revealed it) and were you on the blood thinners at the time? and how long have you been taking them since the blood clot was found?
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Postby japentz » Sat Aug 21, 2010 11:38 pm

It should be adapted to show no change but with all the other information. What type of MS, when diagnosed, treated . .etc . . . that is what i was getting at. There is not information with details on it at all.

Up to you but would be better to be a bit more descriptive. Leave out what is not relevant.

If I have no change, I will post the details.
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Re: dvt

Postby KDGO » Sun Aug 22, 2010 8:05 am

daytrader wrote:I could see better, think clearer, no ANXIETY, sleep BETTER, and 6 days later it all changed at 3:32pm. I have a blood clot in the left jugular. Finally after 4 months I have an angioplasty scheduled on 9/10 to reopen the vein. I hope the valves are still good. Lovanox and coumadin after this time. Doing that now. I also hope they can even get the wire through to open it as I know first hand that this is not always possible in the subclavian vein. I am worse off now than before and hopeful to correct this.

I also did the alemtuzumab trial and read a 71% disease free after 3 yrs. Hopefully this combo of no bad t cells and fixing the flow delay will allow me a reasonable life. Time to heal will take a long time. The brain is slow to heal as I read.

I expect nothing and am grateful for anything. My former airline pilot life would be great, but a LIFE would be enough.

Good morning daytrader
Where did you have your ballooning? Why do you mention the subclavaen vein?
I now understand what japentz is asking us...if we follow the same form we can note the details of our procedures and add commentary. Although this is the same form good outcomes post we will at least be able to read the details of not working for us. I don't know all the answers to some of the questions but will fill out what I know now and add to it as I learn or go back for a recheck or redo.

Dave
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Did not work but at least I tried

Postby KDGO » Sun Aug 22, 2010 9:00 am

CCSVI TRACKING [Please use date format MM/DD/YYYY]

MS HISTORY
Name (if want to give other than TIMS login name):KDGO
Male/Female: female
Age: 54
Date(s) & type of neurological diagnosis :
2004 initial diagnosis..graduated to SPMS symptoms '09

Lesion locations (most affected side, if known), number:
? # in head will advise.
MS treatments:
avonex 6 yrs till this last June, steroid treatmens '05,'06
MS symptoms before stenosis intervention:
pins&needles weak legs causing mobility issues. Walk with
cane. Unbalance, tinnitus
Number of relapses before intervention (if applicable):
initial attack in '04 was the most I have experienced. Hopitalized
with left ear vestibular neuritis last July '09 with severe vertigo
left me with tinnitus.

EDSS before CCSVI intervention (physician-assessed): 4.5

FSS before CCSVI intervention:
[To calculate FSS rating, click the following link: http://www.mult-sclerosis.org/fatigueseverityscale.html ]
MSIS before CCSVI intervention:
[To calculate MSIS rating , click the following link: http://healingpowernow.com/msis.htm ]
Are you using Inclined Bed Therapy I.B.T? (Y/N) N

Have you had testing (and possibly procedure) for blockage yet: (Y/N) Y


STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: 08/05/10 USA
Type of venographic study: MRV w IVUS and procedure all one sitting

Type of procedure: left entry presented with May-Thurners but no symptoms-
dr advised he doens't treat pictures, RIJV fine, LIJV upper
and lower collapsed (w extra valve?) ballooned up to 18
left then went to twisted azygous. Balloned there then
went back over to check out left again, ballooned again.
Procedure/drug related symptoms: 325m aspirin bayer


Number of relapses since first CCSVI intervention: 0
Impact on your MS symptoms in words : For about one week after procedure,
my mobility improved a bit but has now gone back to
where it was. The issue most likely is my LIJV which did not
have best flow after ballooning but I was not prepared for
stents. Presently researching more on M-T. Will follow up.

EDSS as of this update (self-assessed or physician-assessed?)
FSS as of this update:
MSIS as of this update:[/quote]
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dvt

Postby daytrader » Sun Aug 22, 2010 3:08 pm

My clot came 6 days after angioplasty. Was on no thinners. Have been on them now for 3 months. No change in the clot so we are going to try and reopen the vein. My subclavian vein is perm. blocked due to a picc line misplacement. That is why I mentioned it. Best to avoid the whole dvt thing and avoid a potential lifelong problem.

Dave
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operation by sclafani late march improvements disappeared

Postby jak7ham9 » Mon Aug 23, 2010 6:04 am

Hi pkittle etal. I had surgery at very end of march by sclafani. Both jugs opened a couple times and cutting blade used.Tons of collateral like spaghetti. At that time they were not very good at imaging the azygous and blockages/stenoses were missed. Improvements at first easier going up stairs, clearing thinking, not urgency to pee, much more energy. Within a month though I was even tighter and my neck started aching all the time. Restenosed. I amon several waiting lists now. siskin poland etc. I barely am hobbling around supoer duper tight. I still have some relief when I start to menustrate and am at my tightest the week before. My feet are purple and my second toe tends to be limp and gets tucked under easily. All in all really sucks.I just want to run around and be productive
barbara
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Postby Cece » Mon Aug 23, 2010 8:36 am

:( Sorry to hear this, Barbara. Hopefully one of those waiting lists will come through for you asap.
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