This Is MS Multiple Sclerosis Knowledge & Support Community

Bruce ... Interesting news, thanks for sharing. Hope your wife continues to rest peacefully and improve. Sending thoughts and prayers your way.
Bobbi

Bruce, thanks for sharing.
I hope your wife sees improvement gradually.
I'm 10 days past procedure and haven't seen any improvement.

only change is that I wouldn't sleep well last few years, after procedure I sleep better . I don't know is because of Aspirin that I'm taking or what?

I wish others to see better result from CCSVI procedure.

brave

Hi Bruce:

I'm so glad that everything went well (ie, no complications) with your wife. I agree, having to sign the consent for a stent is another thing to worry about. Thanks for the heads up about it! I also appreciate the discussion that you started about this in the other thread.

Do you mind sharing how your wife feeling now? Also, was the Quality Inn okay? I haven't booked a hotel yet as I've been studying...

We're getting a bit nervous/excited about everything, but reading posts like yours helps to calm myself down!

Theresa

Got a call from Siskin's nurse today. She gave a lower percent of succes than the 1/3,1/3,/13 idea. Shje said more like 15-20 percent have marked success. Yikes, I'm more scared now than ever!

javabean wrote:Got a call from Siskin's nurse today. She gave a lower percent of succes than the 1/3,1/3,/13 idea. Shje said more like 15-20 percent have marked success. Yikes, I'm more scared now than ever!

Hmmm, I wonder where they're getting these numbers. Is it a systematic analysis, or is it based on perception at any given time?

I wonder too. It makes me feel less hopeful, but how much moer can I worry? My procedure is a week from today.

javabean wrote:Got a call from Siskin's nurse today. She gave a lower percent of succes than the 1/3,1/3,/13 idea. Shje said more like 15-20 percent have marked success. Yikes, I'm more scared now than ever!

This is the information I was given too, about 20% for early improvements.

Of course, for all we know, progression may be positively affected, we know nothing of impact on long term progression except Zamboni's study.

If that first group is down to 15-20%, any word on the percentages of the other two groups? I'd rather not see the nonimprovements group get any bigger.

15% wow improvements
50% gradual improvements
35% no improvements, possible stopped progression, possible continued progression

Anyone have anything to support such a breakdown? Or maybe that last group could get smaller too and the moderate middle group even bigger.

15% wow improvements
70% gradual improvements
15% no improvements

worse case scenario, which doesn't fit with what we've been hearing anecdotally:
15% wow improvements
35% gradual improvements
50% no improvements

I look forward to the day when we've got real numbers!

Theresa / Javabean

I can't guarantee success or even that there won't be complication. What I can guarantee is the feeling that you have done everything in your power to fight this disease. For my wife, this was very important. She wanted to know that she had done everything she could for her family. By the grace of god it seems that we are one of the lucky ones.

My wife has lots of MS symptoms and I don't know about all of them but the two that mostly affect her quality of life is her recurring arm pain (3 - 5 times per day) and her balance (she uses a cane with difficulty).

Her pain improved immediately. It is still there but only about 1 -2 times per day and that may improve further. Her balance is getting better every day. It feels like a miracle! I've been reading about this and watching videos but when it was our turn it seemed to me to be too much to hope for. We feel very very lucky. My wife is slow to admit that she is improving because she doesn't want to jinx it, but those around her are amazed with the difference.

I know it may not last. I know that is a possibility, but so far it is going great.

Please try to relax. The people at the clinic are wonderful. The doctors are great and the procedure was simple and painless according to my wife.

The Quality Inn was 2 minutes down the road and was fine for us. We had a suite for $99. The steak restaurant in front of the hotel is fantastic. It's not cheap but it's worth the price. It's called "Fillet 7" for anyone going to Albany.

Good luck to you both and may God bless you.

Bruce.

Bruce,
Thank you again for sharing ... Your wife is fortunate to have you as a support. She needs to rest and let the free blood flow through her veins. There are many accounts of later improvements.
Be strong ... Thinking of you ...
Phyllis

Hi Folks
Sorry for being a bit late in giving this update.

I looked back and I actually called the clinis in early june.

I had a call from the clinic to book an appt, so I said give me what ever you have, and theysaid how about Nov 15, so I had like two weeks to find some US cash, my passport, and to call Visa and tell them to brace themselves.
Dr Mandato found both jugulars plugged one 80% and 20% and did my azogos too. He took an hour, same thing, lie down for an hour, sit up for an hour , if your cutt is OK you can go. Keep the free socks! Ultrasound the next day confirmed I have gone from 5 criteria to two.
There were four loyal Canuk taxpayers there on Nov 15th.

I feel 30% better after three weeks, energy is better, legs dont hurt too much any more. Brain fog is gone. Sleeping like a log and dreaming.

I will do a post in the tracking line when I am a month.
Dr Siskin reviewed my ultrasound, and said it takes time to heal, and to give it time and not to expect too much immediately as you have to heal,
and you are better off keeping your expectations in check, which I am trying to do. He said small gradual improvments are more likely.
The more I push exercising the better I feel.

It seems there is a bit of appointment flexability as all these other sites openup?
(You have to try the pizza at Milamos in Albany)

THIS IS AN EXCELLANT PLACE TO GO TO HAVE THIS DONE.

Questions?
Scotland

bruce123 wrote:I can't guarantee success or even that there won't be complication. What I can guarantee is the feeling that you have done everything in your power to fight this disease.

This is very well said! Much agreement.

I also liked CaptBoo's assessment the other day that you do all you can to prepare and stack the odds in your favor and then when it's time you sail and hope Neptune has no plans for you.

Thanks for the updates, Bruce and scotland! I think that our expectations are in check - we also have the attitude that it's a reasonable thing to do/try.

Scotland, you reminded me to ask - is there anyone else out there who will be at the clinic on Dec. 14th? I think that Guider will be there, but with another doctor. We're seeing Dr. Mandato. Do the patients from different doctors run into each other?

After 13 years of being in the MS world, we've never actually had an opportunity to meet someone else in that world, oddly enough.

Hi
I was treated at the clinic which is a beautiful new medical mall type building.

You can see other patients in the front waiting area, the coffee shop is right across the hall, so you see people there.

The proceedure rooms are across the hall, You are kind of lined up in these comfy little cubbies alond the hall in the surgery area, and then wheeled across to the operating room when its your turn, and back to your cubbie when you are done, to rest for the two hours I had mention while they monitor you.
There is lots of chance to see and talk to other patients who are there.
The support staff are fabulous.
Scotland

I called july 12th and got a call back in november 17th to schedule on dec 29th. due to work schedule (retail) I asked if I could be scheduled in jan.
Today I got my call and I am scheduled for Jan 11th.

I have insurance and I will be treated at the hospital

Sooooo Excited:)