CCSVI treatment available in the U.S.!

HappyPoet · Post by **HappyPoet** » Wed Jul 21, 2010 9:15 am

Kate, thanks for this update. He originally got my friend's name and telephone number, along with about 50 others, from a Facebook page asking for potential patients' name and contact phone numbers. I wonder if the page has been taken down now.

I'll remove my post; I wonder if you should, too.

CCSVIhusband and Cece, would you kindly remove the doctor's name from your post. Thank you!

~HP

thornyrose76 · Post by **thornyrose76** » Wed Jul 21, 2010 12:43 pm

??????????

ccsviadvocate · Post by **ccsviadvocate** » Wed Jul 21, 2010 7:42 pm

Hello, I am completely new to all of this but have been earnestly reading all about CCSVI for my husband who is about a 7.5 on the M.S scale. I have him on a waiting list for Bulgaria but he is desperate to get the treatment here in the U.S. If any of you could give me the name of a Doctor performing this procedure in the States I would be so grateful. I have called around numerous places here in Florida to no avail.

I see there is a facility in Maryland and info would be so grateful for the facility name and number, thanks for please feel free to contact me, I would be so grateful.

jcher · Post by **jcher** » Wed Jul 21, 2010 8:18 pm

ccsviadvocate - I sent you a pm.

ccsviadvocate · Post by **ccsviadvocate** » Fri Jul 23, 2010 9:31 am

Thank you jcher for getting back to me it is so appreciated.

I have for the last while sat down finally and read through all 34 pages of post and was able to get a lot of information that everyone was kind enough to leave.

I have called Siskin in Albany and also Haskel and left our number. So now all I can do is wait. I will try and be patient as I know everyone has said it can take a while for them to get back to you.

Though I don't know if anyone said that they had actually heard back from Haskel or not. Anyway I am keeping fingers and toes crossed.

Thanks for all of the great info.

ccsviadvocate · Post by **ccsviadvocate** » Fri Jul 23, 2010 9:52 am

Yay, just wanted to say that the Albany office called back and I was home and they took my husband's information down. They say at this point that it will be about December time for his appointment.

Still a long way away but I am happy and thrilled. Doing a happy dance!!!!!

MrSuccess · Post by **MrSuccess** » Fri Jul 23, 2010 10:17 am

ccsviadvocate - tough to read the situation you and your husband are faced with. Hang in there.

the situation can best be described as having one dentist in a town full of people with toothaches.

the procedure can be performed by those skilled enough to help.

skilled professionals of which are numerous. The backlog of pwMS seeking the Liberation procedure is needless.

Again ........ hang tight ...... get in touch with those offering help.

Mr. Success

rssugg · Post by **rssugg** » Fri Jul 23, 2010 12:44 pm

ccsvi - how long was the call after you recieved your cnfirmation email?

I called about three weeks ago, got a call back to get my email address about 7 days later, then got an email about 5 days after that.

thornyrose76 · Post by **thornyrose76** » Fri Jul 23, 2010 12:58 pm

ccsviadvocate wrote:Yay, just wanted to say that the Albany office called back and I was home and they took my husband's information down. They say at this point that it will be about December time for his appointment.

Still a long way away but I am happy and thrilled. Doing a happy dance!!!!!

Glad that things are on there way for your husband,,must be such a relief!

I called about 2 weeks ago and left my phone number. Out of curiousity when did you first initially call? This waiting is makin me just sick.

ccsviadvocate · Post by **ccsviadvocate** » Fri Jul 23, 2010 8:59 pm

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......

val57gal · Post by **val57gal** » Sat Jul 24, 2010 9:54 am

I just got an email from Dr Arata--he is attending the symposium in NY. So when I go for my 2nd venogram next month (probable May-Thurner & recheck the jugulars), he will know all the latest possibilities.

Vivianne766 · Post by **Vivianne766** » Sat Jul 24, 2010 11:24 am

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.

ccsviadvocate · Post by **ccsviadvocate** » Mon Jul 26, 2010 9:29 am

I just wanted to take a moment to thank all of the wonderful people that have taken a moment out of their day to contact me with information for my husband.

I am going to hit the phones and do some work and I could not have done it without all of the great information that everyone has shared.

What a truly great bunch of people use this chat room, a big thank you to you all from the bottom of my heart.

pklittle · Post by **pklittle** » Mon Jul 26, 2010 10:17 am

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!

Dave_NC · Post by **Dave_NC** » Mon Jul 26, 2010 10:22 am

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!

Hope this helps.

The DCM file extension identifies DICOM Image File. These files may contain data related to various scans which produce medical images. The file was created by the National Electrical Manufacturers Association (NEMA) as a standard for distributing and viewing medical images, such as MRIs, CT scans, and ultrasound images.

Open DCM files on Windows

Canvas 11
ezDICOM
MRIcro
XnView
IrfanView
The GIMP
ImageMagick
DicomWorks
Open DCM files on Mac

OsiriX Imaging Software
Madena
XnView
The Gimp
Open DCM files on Linux

MRIcro
GIMP
ImageMagick

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