This Is MS Multiple Sclerosis Knowledge & Support Community

I'm new at this. But, If you are diaognosed with CCSVI, why can't you be treated for CCSVI? It should'nt matter if you have MS. If the treatment improves your MS conditions, then that is a plus.

Vivianne766 wrote:

ccsviadvocate wrote:Hi Everyone, I called Albany three days ago and received a call for information today. I was really happy as my husband went to the Doctor and I was going with him but decided to stay home in case they called. My son took him instead, so needless to say I was really relieved that I heard back. I would call again if it has been two weeks and you have not had a call back just in case there was a glitch in the system.

The lady I spoke to said that it would be about three weeks before I would receive a confirmation email but that at the moment anyone booking now will be seen about December time......

...well that's great. That tells me that those of us who called earlier as in late May earl June, should have a app. before December.
... hopefully.
It's been a long painful wait for me and everything seems to be dead still.

WE GOT A DATE!!!!

Just thought I'd sneak that in there. lol! My darling man got the call today. His appointment is September 14.

I guess I don't need to say how happy I am. But it's still a little unreal. I found out while I was at work. He emailed me to tell me and it was the longest day of my life because I couldn't jump up and down screaming. lol!

Now I just need to figure out how to keep my hopes and expectations at a minimum. I know he feels like this is his last chance. He was diagnosed with PPMS in 2007. So, if anyone has some advice as to how to keep our hopes and expectations at a minimum, please let me know.

muggsy - welcome - herein lies the problem

As CCSVI gathers steam .... many new people come to TIMS to get updated and educated.

I'll be the first to say .... reading all the sticky's would be discouraging for a new comer . I would prefer an abridged version of the Big Idea be inserted regularly within current posts ..... to help the new people get up to speed. And avoid asking questions that will probably play into the hands of a few ........ complicated ......... individuals that float in and out of TIMS.

I would suggest you visit the new CCSVI Alliance web page .

Hang on to your hat ...... the CCSVI ride is picking up speed ............




Mr. Success

Congratulations Trish317 your dear man is going to be liberated on our Wedding Anniversary.

I know how you feel about trying to keep expectations low, I am the same. I want to shout from the roof tops but again I realise that with my husband the results might not be dramatic. He was dianosed in 2002 and has progressed steadily to a 7.5 on the M.S scale. He has a very agressive form of the disease that has not responded to any medication and in fact the meds made him worse. So I am so happy that he has a chance a even a tiny bit of recovery.

We are at the stage that if he was able to just hold and play the guitar then that would be our miracle. It will be nearly two years since he had to give it up and it was a huge blow to him. So fingers crossed that this little miracle happens.

ccsviadvocate wrote:Congratulations Trish317 your dear man is going to be liberated on our Wedding Anniversary.

I know how you feel about trying to keep expectations low, I am the same. I want to shout from the roof tops but again I realise that with my husband the results might not be dramatic. He was dianosed in 2002 and has progressed steadily to a 7.5 on the M.S scale. He has a very agressive form of the disease that has not responded to any medication and in fact the meds made him worse. So I am so happy that he has a chance a even a tiny bit of recovery.

We are at the stage that if he was able to just hold and play the guitar then that would be our miracle. It will be nearly two years since he had to give it up and it was a huge blow to him. So fingers crossed that this little miracle happens.

Thank you, ccsviadvocate. I'll be praying for little miracles for both our darling men. They deserve it.

HappyPoet wrote:

Trine wrote:

HappyPoet wrote: The TOTAL cost, regardless of number of stents, is mandated to be $16,500. Maryland state law sets this price according to a formula; therefore, the hospital and doctor have nothing to do with fee setting.

Wow, that's expensive! Too bad they don't offer a reduced rate if it's only ballooning and no stent.

How times change... a year ago, only one place in the USA was offering testing and treatment.

Trine, back then, people/insurance companies were paying Stanford $80,000, so compared to that amount, I think $16,500 is reasonable enough, especially if one is not against stents -- BUT I don't know what other doctors are charging now, so your comment brings up a good question...

Does anyone know what other doctors are charging?

~HP

I just got back from the Hubbard foundation clinic Applied fMRI in San Diego. Their diagnostic fees were $2500. Surgery with an IR in a private facility will be $7500

Hi Trish

Very glad to hear your report. It gives me hope that we will soon get a call. Our initial call was on June 2nd. with a return call on the 3rd. May I ask again when your first call was? I didn't really want to read through all those posts again. Again blessings to you and your man.


Hi Muggsy

Welcome. You asked a very good question. One I wish someone (in authority) would answer. If you live in Canada (as I) you will not be able to receive any treatments for CCSVI . You may be able to get the testing done if you can find a doctor or neurologist willing to sign your requisition. But if you live in the U.S. you have a chance of receiving both, granted you are able to pay for it or have insurance coverage. For more information check out the very 1st. post on this thread.

And by the way good luck if you are an mser yourself.

Guider

Guider wrote:Hi Trish

Very glad to hear your report. It gives me hope that we will soon get a call. Our initial call was on June 2nd. with a return call on the 3rd. May I ask again when your first call was? I didn't really want to read through all those posts again. Again blessings to you and your man.


Hi Muggsy

Welcome. You asked a very good question. One I wish someone (in authority) would answer. If you live in Canada (as I) you will not be able to receive any treatments for CCSVI . You may be able to get the testing done if you can find a doctor or neurologist willing to sign your requisition. But if you live in the U.S. you have a chance of receiving both, granted you are able to pay for it or have insurance coverage. For more information check out the very 1st. post on this thread.

And by the way good luck if you are an mser yourself.

Guider

Hi Guider,

Thank you. His first call was May 18. He didn't hear anything back so he called again on May 24th. He got a return call for basic info on May 26th. So it took two months after the information call for him to get the appointment. I'm not really sure if that's how it's been for everyone. We've never known exactly where he was on the waiting list. We just waited....he, more patiently than I.

muggsy wrote:I'm new at this. But, If you are diaognosed with CCSVI, why can't you be treated for CCSVI? It should'nt matter if you have MS. If the treatment improves your MS conditions, then that is a plus.

CCSVI is a newly identified condition, that does not yet have full recognition as a diseased or abnormal state. It also may be as high as a one-to-one ratio, in which every person with MS has CCSVI and every person with CCSVI has MS. Previously it was thought that the collateral veins were sufficiently doing their job, the body had rerouted around an occlusion, and it was just one of the variations on normal...if neck and azygous venous drainage was thought about at all. So CCSVI is still being proven as real and worthy of treatment and one of the things that make it very worthy of treatment is all the symptoms that have been grouped in as MS symptoms but, since they vanish when CCSVI is treated, they are perhaps really CCSVI symptoms. (Fatigue, cogfog, weakness, etc.) But I am very happy at what's happened in the last few months. More and more doctors are treating. Btw welcome to the forum!

Thanks Trish,

And so we will continue to wait - patiently?? Not sure about that.

Congrats again to all of those who have received their appointment dates.

Guider

pklittle wrote:Does anyone know what software will play/display the venogram results from the DVD provided by Albany? The extension on the files is .dcm

I'm dying to see my procedure on my computer.

thanks!

The software is on the CD. When you put the CD in, it should autorun. If it doesn't run you can go to an explorer window and run (double click on it) a file called isitemediaviewer.exe on the CD and it will run the program to view the images.
Blaine

bmk1234 wrote:

pklittle wrote:Does anyone know what software will play/display the venogram results from the DVD provided by Albany? The extension on the files is .dcm

I'm dying to see my procedure on my computer.

thanks!

The software is on the CD. When you put the CD in, it should autorun. If it doesn't run you can go to an explorer window and run (double click on it) a file called isitemediaviewer.exe on the CD and it will run the program to view the images.
Blaine

I see 4 folders on the DVD.

DICOM
Preferences
Stack
Worklist

The DICOM folder had the .dcm files. the other folders are empty. I see no .exe files. :0(

Google "free dicom viewer" - There are truckloads of free viewers on line.

Good luck!

Algis wrote:Google "free dicom viewer" - There are truckloads of free viewers on line.

Good luck!

I googled that and went into a bunch, but they require licensing or registration. some have popups. I'm not keen on taking a chance of mucking up my pc. I'm am teed because the dvd is supposed to have an exe player on it, and it doesn't.

A picture (and also DICOM) viewer that comes for free and without any registration is Irfanview - its imo the best pictureviewer around.
You can download it here: Download at CNET

--Frank