This Is MS Multiple Sclerosis Knowledge & Support Community

Misspoke myself. I meant to say restenosis rates are lower with the azygous. I think I am still OK, and don't need to be re-plastied just yet .

Question 13 in the FAQ from the Community Care website
How will I know if my veins are staying open after this procedure?
Answer 13: It is important that all patients are followed to ensure that symptom improvement is maintained and the veins remain open after treatment. Doppler ultrasound tends to be the best way to follow these patients, and we recommend that patients are followed every 3 months after treatment for a period up to 1 year, then every 6-12 months after that.
Following symptoms is an important part of follow-up after this procedure. Since most patients see improvement in at least one of their presenting symptoms, worsening of these symptoms may indicate that the veins are narrowing again, a condition called re-stenosis. Zamboni found a 50% restenosis rate in the blockages treated in the internal jugular vein, so this needs to be actively followed. Patients can be retreated should it occur.
Follow-up examinations can be performed by our practice in Albany, but if traveling is difficult, we can work with your local physicians to help you with this testing.
I personally have talked about Q 13 with my neurologist, a vacular surgeon and my GP. All have said that they will help me with my followup. I have also had a blood test to check my kidneys because the dye can be hard on poor functioning kidneys.
One more thing to do is send in a signed "Out-of-country" OHIP coverage. It may be rejected but it will be recorded that I applied before the procedure in case the coverage is approved after the fact.
Hope this helps.

1eye wrote:Misspoke myself. I meant to say restenosis rates are lower with the azygous. I think I am still OK, and don't need to be re-plastied just yet .

Whew! You had me worried for a minute. My darling man had both jugulars and azygous angioplastied. I'm a little concerned because his feet have gone back to being numb. If he doesn't see any improvement in the next three months, I'm not sure if he'd be willing to go through the procedure again. I'm not even sure if he knows that other people have done it more than once.

Guess we'll cross that bridge if we come to it.

For my Canadian friends ...
I'm just working on my OHIP out of country application tonight. I would like to share this information that a lawyer friend pointed out to me. OHIP will most likely send you a decline letter but the application will have been registered and if it does get coverage you are ahead of the game.
Here is the OHIP site with a link to the PDF application which you need to fill out using terms that are CCSVI language and then it needs to be signed by a physician. Include letters and documents to make your case.
http://www.health.gov.on.ca/en/public/p ... val.aspxan.

Here is another link for income tax purposes regardng travelling expenses.
http://www.cra-arc.gc.ca/tx/ndvdls/tpcs ... html?=slnk
Good luck.
Bobbi

Posted: Tue Sep 21, 2010 11:57 am Post subject:

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Today I was called and offered a date for treatment in Albany, NY: Oct. 27th. There was a cancellation... original call: May 24th... since I am from Canada, treatment will be in clinic... was quoted $3000 for venography, $2000 for angioplasty, $2000 per stent (if required) - but was told that starting in November prices are going up! When they contact me again I will try to find out the new prices...

This was posted in another thread so I added it here.

I don't like the idea of increased costs in November. I was hoping to see prices drop as things became more routine. Let's just hope they don't go up too much for us poor Canadians without insurance.

Bruce.

Hi
I was scanned in Barrie Aug 30th and Ang mentioned they were following up on over 100 people treated elsewhere now. I think they were considering training more people to do the scan, she mentioned she is doing up to 12 a day now.
My scan took about 10 minutes. Ang was great.

5/5 ccsvi criteria
Waiting for a call from Albany, called on June 28th

Scotland

Scotland: You and I called around the same time, so we may get The Call around the same time. I agree Angie in Barrie is the best. My Doppler with her her was really informative (4/5).

Due to some issues which were revealed in my MRV, I am hesitant to travel outside of Canada for treatment due to increased risk for complication, but if I do travel, it would likely be to Albany--if I ever get in.

Thanks to Bobbi for posting the info about application to OHIP. Even though they will likely deny, it is best to apply and possibly appeal or have the documentation completed in case it is ever approved.

Update: I was first offered Oct 27th (they had a cancellation), but they called back the next day to say the doctor had something come up and they would have to reschedule me in November... unless I could come Oct. 6th (somebody cancelled just before they called me). I accepted of course. I just found out today that the cost for the venogram + angioplasty will go up to $6000 in November from its current $5000. Cost is $400 for the scheduled follow-ups (doctor office visit and doppler scan at 3, 6, 12, 18, 24 months). If restonosis occurs, the doctor will determine when and at what price he would retreat. My original call to Albany was May 24th.

I hope that I didn't get anyone hopes up re: the waiting list moving. I just wanted to bump this up. Has anyone heard anything recently?

If anyone in southern Ontario needs to rent an accessible van then check out their web site. I am planning to rent one to drive to New York State for my treatment. www.wheelchairinmotion.com

I'm up to bat tommorw! First spoke to Dr. S in May, was offered an aprox date in late October, then an earlier date with Dr. M (tomorrow). I will update before the weekend.

Wish me luck, PN

PointsNorth wrote:I'm up to bat tommorw! First spoke to Dr. S in May, was offered an aprox date in late October, then an earlier date with Dr. M (tomorrow). I will update before the weekend.

Wish me luck, PN

Sending you good thoughts for wonderful results.

And it's my turn tomorrow, Oct. 8th! I am so excited. My husband and I fly out today.

naychergirl wrote:And it's my turn tomorrow, Oct. 8th! I am so excited. My husband and I fly out today.

Prayers and good thoughts coming your way....

THANKS Trish,

First impressions: less cogfog - able to find words, vision crisper (not that it was poor to begin with), balance improved, hands less numb. Slept 4 hour this afternoon

This evening - hands numb again but all other improvements from the morning still pretty much intact.

Dr. M told me to keep expectations in check. He and his crew were EXCELLENT.

I'm looking forward to tomorrow . . . .

PN