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Posted: Sat Feb 26, 2011 7:43 am
by Digreg
Digreg (husband) CAN; Sept 19th;
MS_HOPE Off Albany Waiting List
Posted: Sat Feb 26, 2011 10:16 am
by MS_HOPE
ALBANY-WAITERS - You have one less person "competing" for a spot. I'm delighted to say that I've been scheduled for CCSVI treatment for NEXT WEEK in my very own home state at Vascular Access Centers. Dr. James McGuckin, who's flying in from Phila. to perform a few procedures in Durham, has done about 100 now. He is eminently qualified, and is one of the speakers at the upcoming ISNVD conference in Italy next month. I'll post details when I can, under separate thread. Much still to do before procedure.
I wish you all the very best of luck on this exciting and hopeful journey to better health. So happy to hear of improvements - thanks for posting. We need to keep the CCSVI momentum going so that EVERY person with MS who wants it can have this low-risk, potentially life-changing procedure done.
Posted: Mon Feb 28, 2011 8:12 am
by bruce123
UPDATE.
Some of you who have been following this thread will know that my wife was treated in Albany on Dec. 1st. I provided a few positive updates while my wife improved. Her balance improved quite a bit. She walked with a cane and still does but the improvements were significant. Her fatigue was also greatly improved. The symptom that had the biggest effect on her quality of life was the recurring arm pain that was quite sever and came on 4 - 5 times every day. Over a couple of weeks post-procedure her arm pain almost disappeared. It was a MERACLE !
I am very disappointed to report that the arm pain is back. She had 2 months of improvements but then, within a couple of days, she was back to frequent bouts of sever arm pain. Is it restenosis? I assume so.
What is a bit odd is that her balance has gotten a bit worse but is still much better than pre-procedure. Her fatigue is still much improved also. Only the pain seems to have returned full force. We're holding our breath.
This has been very disappointing to say the least. Devastation is not too strong a word. Would we recommend this procedure to others...YES. It was 2 months of heaven. We were lucky to be in group that had significant improvements and we are confident that if done again she could rid herself of the terrible arm pain. We just need to see some consensus among the doctors as to best practices.
We have no plans to have the procedure done again right now. We would like to see some advancements in understanding and technique before trying again. Unfortunately, I think this may take years. I think we are a long way off from research into improving the actual procedure. The formal research that is now underway is aimed at proving the validity of CCSVI treatment. I already know it’s valid. I've seen it with my own eyes. I have a feeling that 10 years from now the treatment for CCSVI will be much different then it is today. The problem is, my wife can't wait 10 years, but for now, we wait.
Bruce.
Posted: Mon Feb 28, 2011 8:59 am
by Cece
bruce, I am sorry to hear of the lost improvements. Are you anywhere near Barrie or any facility that can check for clotting? Restenosis is the assumption and most restenosis needs retreatment but isn't going to be doing harm in the meantime, it's only clotting that if that's the cause of restenosis it does harm to the veins and can result in the total loss of a jugular. Clotting can be silent too or unfelt. It's such a simple check with an ultrasound for such a potentially damaging complication, it really worries me that not everyone has access to follow-up checks.
Posted: Mon Feb 28, 2011 12:24 pm
by Blaze
Thanks for posting Bruce. It's a bummer to hear about your wife's slide backwards, but it's important information for us to know.
Does anyone know if Albany is tracking patients to determine how they are doing post-angioplasty? This information is as useful to us as knowing what initial outcomes are.
I agree with Cece. Your wife may want to have a Doppler US to determine if she has a restenosis or if she has a clot. You may want to see if Barrrie Vascular Imaging (
http://www.barrievascularimaging.com) or Toronto Centre for Medical Imaging (
www.tcfmi.com) can do that. TCFMI has a site in Port Perry which I think is a tiny bit closer to Ottawa.
Have you contacted Albany to ask for advice? Good Luck!
Posted: Mon Feb 28, 2011 3:48 pm
by AMJ
Bobbi wrote: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
Thats a good tip Bobbi - did your family physcian have any problem completing it for you?
Posted: Tue Mar 01, 2011 5:00 am
by bruce123
Cece / Blaze, thank you for your concern.
We are considering getting checked but there are a few things we have to consider. One is that Barrie is about 5 hours away so it would be an overnight trip. Also, the original scan we had in Albany was inconclusive and was negative for CCSVI. That brings doubt as to whether another ultrasound would be conclusive in indicating if clotting was present.
After following CCSVI developments closely for the past year it seems to me that ultrasound is good, but not great, at indicating problems associated with CCSVI. I fear that many of the studies that are being conducted now will show inconclusive results due to this. I hope I'm wrong on this.
Thanks again,
Bruce.
Posted: Tue Mar 01, 2011 5:54 am
by bruce123
Blaze wrote:Does anyone know if Albany is tracking patients to determine how they are doing post-angioplasty? This information is as useful to us as knowing what initial outcomes are.
Have you contacted Albany to ask for advice? Good Luck!
When we were there we filled out a long questionnaire. They told us that they would send us the same questionnaire at 3 months, 6 months and 1 year. We are not yet at the 3 month mark.
We contacted Albany. Dr. Englander said my wife could come back to have the procedure done again and that they can use stents to keep the veins open if needed.
Bruce.
ultrasound
Posted: Tue Mar 08, 2011 9:34 am
by mser54
Bruce,
Sorry to hear about your wife. I am having an ultrasound in Toronto. Why is the Merivale clinic not doing them?
Posted: Tue Mar 08, 2011 12:36 pm
by thornyrose76
Does anyone know about Manitoba Health?
Posted: Sun Mar 13, 2011 6:39 am
by erinc14
i was liberated thursday . nothing dramatic yet . two homecare workers noticed i was warner particulrly my feet which were liike ice from the beginning ., and i didn't even ask. no spasms now. the pain in my neck is bad. when will this go away
stent in both jugulars.
Posted: Sun Mar 13, 2011 8:11 am
by Blaze
erinc14 wrote:i was liberated thursday . nothing dramatic yet . two homecare workers noticed i was warner particulrly my feet which were liike ice from the beginning ., and i didn't even ask. no spasms now. the pain in my neck is bad. when will this go away
stent in both jugulars.
Erin: Glad to hear you've had it done. So sorry you haven't seen more improvements, but it's still early. Hope you will see changes soon.
Yikes--Two stents! Did the docs in Albany say anything about neck pain?
Posted: Sun Mar 13, 2011 11:34 am
by erinc14
Blaze wrote:erinc14 wrote:i was liberated thursday . nothing dramatic yet . two homecare workers noticed i was warner particulrly my feet which were liike ice from the beginning ., and i didn't even ask. no spasms now. the pain in my neck is bad. when will this go away
stent in both jugulars.
Erin: Glad to hear you've had it done. So sorry you haven't seen more improvements, but it's still early. Hope you will see changes soon.
Yikes--Two stents! Did the docs in Albany say anything about neck pain?
dr. siskin said a few days but it's still very bad.
Posted: Sun Mar 13, 2011 4:28 pm
by Blaze
erinc14 wrote:
dr. siskin said a few days but it's still very bad.[/quote]
Very bad does not sound good! You may have trouble getting follow-up care in Canada. It may be best if you call Albany first thing in the morning and see what they say.
Has anyone else had pain like Erin describes? What did you do? What was the eventual outcome?
Hang in there Erin!
Posted: Sun Mar 13, 2011 4:43 pm
by Cece
I don't think my neck pain was as bad as Erin describes but mine lasted for a week. I took Tylenol and could always tell when it wore off and I needed to take it again. I did not have stents and I did not have particularly big balloons or high pressures. My left side still hurts occasionally and it has been a month.
Congrats, Erin, on your liberation!!
Scotland;CAN;June;Nov15: Mandato
