Post if CCSVI treatment did NOT work for you

pklittle · Post by **pklittle** » Sun Jun 20, 2010 8:24 am

I am wondering how much of an oddity I am. I had 3 blockages treated with angioplasty this past week, and I did not benefit at all. Not even the slightest improvement.
We hear of so many successes, but just how many are like me that had blockages treated and are the same as before?
No, I have not re-stenosed.. ultrasound the next day confirmed that.

mila77 · Post by **mila77** » Sun Jun 20, 2010 9:09 am

Hi pklittle,

No you are not the only case.
I had liberation treatment 2 months ago and I did not improve. Truth to tell I was not expecting to improve as my MS is very mild and going for the procedure I was free of any symptoms. But after it I got numb hand and it stayed like this till today. 2 weeks ago I had a mild relapse: my hand got more numb, but also numb toes, stiffness in the knee and numb torso, all the symptoms on the right side (I have stent in right jugular).
And I have no restenosis, the boold flow is correct on both sides - I had checkup appointment and ultrasound done by Simka last Tuesday.
I am hoping that it all just needs time to settle down and that the symptoms/relapse was caused by my old lesions. Time will show.

esta · Post by **esta** » Sun Jun 20, 2010 9:10 am

hi pklittle
maybe just maybe, not having improvements right away could mean everything will slowly get better as time goes on...remember give it 3 to 6 months...where as i had great improvements within 3 weeks but by the 4th, things went downhill...this is only conjecture, but i'd be waiting if i were you, with an optomistic outlook for every tiny tidbit...but, thats only me, and i won't hesitate to get it done again, this time, hopefully with a stent.

esta · Post by **esta** » Sun Jun 20, 2010 9:17 am

BTW I had the procedure done may 6th in katawice poland, and got checked by dr. simka 2 weeks later. even then it wasn't good, but i was still improving.
read dr. simka's reply to me titled 'Dr. Simka restenosis' on this forum. it was just a couple of weeks ago.

scorpion · Post by **scorpion** » Sun Jun 20, 2010 10:27 am

esta wrote:hi pklittle
maybe just maybe, not having improvements right away could mean everything will slowly get better as time goes on...remember give it 3 to 6 months...where as i had great improvements within 3 weeks but by the 4th, things went downhill...this is only conjecture, but i'd be waiting if i were you, with an optomistic outlook for every tiny tidbit...but, thats only me, and i won't hesitate to get it done again, this time, hopefully with a stent.

Esta this is a post where people who have not experienced improvements after their procedure can give us feedback. I hope it does not regress into posts trying to convince them they are wrong.

Billmeik · Post by **Billmeik** » Sun Jun 20, 2010 11:25 am

really I am a bit better but while in poland I met a woman call her p

who had come back for a recheck after 3 months and had great flow like 800 on one side and was still having new ms stuff.

The good news is ccsvi exists, and is an important factor. the bad news is its not the whole story.

pklittle · Post by **pklittle** » Sun Jun 20, 2010 11:32 am

Thanks Esta for pointing me to Dr. Simka's thoughts. I had read that a few weeks ago, but it was good to reread it.
It seems to be so true, what he says. MS = CCSVI + something else (perhaps more than one).

Crap.

mangio · Post by **mangio** » Sun Jun 20, 2010 11:54 am

I think one of the most important points written by Dr Simka was point number six in his response.

Also Dr Simka's remark at the Hamilton Workshop last fall that possibly
this is altering the angiotension system for the immediate benefit was
interesting.

Why the procedure doesn't help all is really disheartening.

Cece · Post by **Cece** » Sun Jun 20, 2010 12:13 pm

I wonder if we shouldn't have a sticky of a tracking thread with negative results. Because I can see where they get lost in the general flow of positive results and high hopes and it does seem like important information...particularly those who've had new symtoms. Numb fingers or hands, even starting on the operating table, is the new symptom that seems to crop up for a few people.

We have a lot of stickies already, so maybe it's not practical.

LR1234 · Post by **LR1234** » Sun Jun 20, 2010 2:19 pm

.....

shye · Post by **shye** » Sun Jun 20, 2010 2:34 pm

Cece-
I think your suggestion is super important. For those trying to decide, I think that knowing the negative is almost more important than the positive at this point. Most of us are fairly up on what the procedure CAN do potentially, but it is important to know in what ways it is not helping some, and also in what ways making some worse.
This thread might very well soon be off the front page, so no one will see it--a sticky they will see.

silverbirch · Post by **silverbirch** » Sun Jun 20, 2010 2:49 pm

Ditto that a sticky for this thread
Silver

joanp · Post by **joanp** » Sun Jun 20, 2010 3:42 pm

i agree, we need a sticky for this one.

i do believe in ccsvi in ms patients and i have seen enough evidence in the press and on videos to see people go from wheelchairs to walking.

for those with severe ms - most if not all will jump at the chance to have the ccsvi procedure. but for those with less disability, that choice may not be so clear.

it is good to know negative outcomes as well. then all people can make a choice as to whether the procedure is worth the risk of actually becoming worse when one was not too bad off to begin with.

it is a choice all of must make for ourselves and i hope that everyone will respect another's choice.

Vhoenecke · Post by **Vhoenecke** » Sun Jun 20, 2010 3:54 pm

I agree Joan P, it is very good to hear both good and bad outcomes in order to make an informed decision. Going into the procedure thinking it is a miracle cure is not good. We all hope for the stopping of disease progression but that may not always happen. Please keep posting if you did not have positive results we need to hear all sides.

Thanks,

Val

lilsis · Post by **lilsis** » Sun Jun 20, 2010 4:05 pm

The numbness could be contributed to pressure on the nerves of the Brachial Plexus that exits between the vertebre in the neck and innervate the arm and hand. Can you tell me which fingers are affected, and which parts of the fingers? This info would help establish the particular nerves or nerve roots affected.

Clotting (thrombosis) is a real possibility, and may be present in the dural sinuses, the veins in the brain. These appear to resolve over time with the new and improved flow, but until they go, a person may not see many changes.

Thanks,
Gwen