This Is MS Multiple Sclerosis Community: Knowledge & Support

Welcome to the world's leading forum on Multiple Sclerosis research, support, and knowledge. For over 10 years, This is MS has provided an unbiased community dedicated to Multiple Sclerosis patients, caregivers, and affected loved ones.
It is currently Wed Jun 19, 2013 6:59 am


All times are UTC - 8 hours [ DST ]




Post new topic Reply to topic  [ 13 posts ] 
Author Message
PostPosted: Wed Apr 04, 2012 12:10 pm 
Offline
Family Elder

Joined: Mon Aug 23, 2010 3:00 pm
Posts: 600
Dr. Arslan was previously practicing in Florida, but has now moved to the Rush Medical Center In Chicago. Has anyone been treated by him at either location? If so, I would like to hear your opinions.


Top
 Profile  
 
PostPosted: Wed Apr 04, 2012 7:07 pm 
Offline
Family Elder

Joined: Mon Aug 23, 2010 3:00 pm
Posts: 600
Well to answer my own question it seems the question was previously asked at TIMS:
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic13938.html


Top
 Profile  
 
PostPosted: Wed Apr 04, 2012 7:50 pm 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8554
That was from 2010, it would be good to hear from someone who has been treated more recently or at the new location.

I am getting anxious, David, to find out how the procedure works for you. From what you said in the other thread, you don't have some of the traditional CCSVI symptoms. (And that's a good thing! Cogfog is awful, fatigue is awful, memory impairment is awful, etc.) I've posted many quotes from people in the improvement reports talking about improvements in walking so that is what I've got my fingers crossed for you. Even staying the same would be an improvement, if getting worse is the trajectory? I was a member here at TiMS for over a year before I ended up getting treated, and that's unusual these days, so we are similar in that. Keep asking the questions, I wish there were more answers coming. Does Dr. Arslan have a facebook page?


Top
 Profile  
 
PostPosted: Thu Apr 05, 2012 12:59 pm 
Offline
Family Elder

Joined: Mon Aug 23, 2010 3:00 pm
Posts: 600
I'm getting a little anxious too.

There are many Dr. Arslans on facebook but as far as I can tell none of them is this Dr. Arslan. I've seen videos pre and post ccsvi for two of his patients. Both seemed to do well, but the videos are both old. It's hard to find recent videos on CCSVI at all now.

Dr. Arslan has done over 250 CCSVI procedures. He said only two have gotten worse. (that's good news)
He said restenosis rate is about 50% in 18 months.
His estimate of the likelyhood that the procedure would help me was higher than what I had mentioned. ( also good news)

I've decided that it's time to stop fooling around and just do it!
I'm about 1/2 notch from the wheelchair on the EDSS scale so if I want to walk into the clinic now is the time.

Thank you for your kind thoughts.

Dave


Top
 Profile  
 
PostPosted: Fri Apr 06, 2012 8:46 am 
Offline
Newbie

Joined: Fri Apr 06, 2012 8:35 am
Posts: 1
David- I just met with dr arslan on tues. - its about a year and a half after your post and il wondering what your outcome was/is?


Top
 Profile  
 
PostPosted: Fri Apr 06, 2012 9:51 am 
Offline
Family Elder

Joined: Mon Aug 23, 2010 3:00 pm
Posts: 600
Heather I have not met with Dr. Arslan yet. I'm going to see him on the week of April 23. I'll let everyone know how it goes when I return home on Friday the 27th.

Dave


Top
 Profile  
 
PostPosted: Fri Apr 06, 2012 11:57 am 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8554
if the clinic has wifi you can let us know even sooner :wink:


Top
 Profile  
 
PostPosted: Sat Apr 14, 2012 5:27 am 
Offline
Family Elder
User avatar

Joined: Sun Aug 22, 2010 3:00 pm
Posts: 200
Location: Central FL ( near Ocala)
I have not been treated by Dr Arslen but I have met him a few times. And I know a few patients of his.
You would find them on CCSVI FLORIDA Facebbok. Go to youtube and put in "ccsvi Barbara"

I think he is a very good choice with good experience. I am an RN and the mom of someone with MS (35) who had CCSVI treated. So I think I am a fairly good judge. Dr Arslen seems to be very knowledgable and keeps abreast of the research. He cares about his patients and he keeps in touch with other pioneers of CCSVI and its treatment. I was sad to hear that he left Tampa FL .

My daughter was treated at Shand's in Gainesville. She was newly diagnosed with MS at the time.
That was in Oct 2010 ....she remains virtually MS symptom free with 20/15 vision. And no evidence of MS on physical exam. Her MRIs are the only thing that gives it away.

I hope you have a similar experience!

_________________
Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-


Last edited by MegansMom on Sun Apr 15, 2012 5:52 am, edited 2 times in total.

Top
 Profile  
 
PostPosted: Sat Apr 14, 2012 5:42 pm 
Offline
Family Elder

Joined: Mon Aug 23, 2010 3:00 pm
Posts: 600
MegansMom
Thank you for the info and the words of encouragement. Yes I'm seeing Dr. Arslan the week of 4/23. I've seen the Barbara video and also Wendy's. I think things turned out very well for both of them.

I hope your daughter remains free from this monster forever.

I'll let everyone know how it turns out.

Dave

My prayer is that one day this site will be called "This Was MS."


Top
 Profile  
 
PostPosted: Sat Apr 14, 2012 7:05 pm 
Offline
Family Elder
User avatar

Joined: Tue Jul 14, 2009 3:00 pm
Posts: 1157
Location: Riverside, CA
Good luck on your procedure/eval etc.
Mark

_________________
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap


Top
 Profile  
 
PostPosted: Sun Apr 15, 2012 9:56 am 
Offline
Family Elder

Joined: Mon Aug 23, 2010 3:00 pm
Posts: 600
CureIous wrote:
Good luck on your procedure/eval etc.
Mark


Thank you for the good wishes.

Dave


Top
 Profile  
 
PostPosted: Wed Apr 18, 2012 8:36 pm 
Offline
Family Elder
User avatar

Joined: Mon May 18, 2009 3:00 pm
Posts: 722
Location: CT
Good luck but you won't need it.

I've met Dr. Arslan and he's great. He worked under Dake in VA and as been plugged into CCSVI since the beginning. He's warm and friendly and genuine.

I personally know Barbara Garcia, Nicki Beagle Watts and several others treated by him (most more than once), and they've had impovements. None are "cured" but I think they'd all agree they did the right thing. They're all on facebook, and love to share.


Top
 Profile  
 
PostPosted: Tue Jul 17, 2012 1:10 pm 
Offline
Newbie
User avatar

Joined: Sun Jun 05, 2011 3:00 pm
Posts: 3
i have been treated by Dr Arslan. i cant believe that there are just two patients with negative outcomes.
i am disapointed with Dr Arslan as there was no support , follow up when my MS did get worse i could live with the negative result, but being afterwards ignored is just unprofessional, as the saying goes 'success has many fathers, failure is an orphan;


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 13 posts ] 

All times are UTC - 8 hours [ DST ]


Related topics
 Topics   Author   Replies   Views   Last post 
There are no new unread posts for this topic. Dr. Arslan in Tampa.

Farmz

6

2582

Sun Oct 17, 2010 4:02 pm

FastBenz View the latest post

There are no new unread posts for this topic. Dr. Arslan at ISNVD

Cece

1

458

Wed Feb 22, 2012 10:11 am

Cece View the latest post

There are no new unread posts for this topic. Dr. Arslan interviewed about CCSVI

Cece

3

1345

Sun Jul 17, 2011 10:19 am

erinc14 View the latest post

There are no new unread posts for this topic. case 3 from dr arslan - major improvements

Cece

0

371

Tue Jul 03, 2012 12:50 pm

Cece View the latest post

There are no new unread posts for this topic. Are some of us being under-treated?

[ Go to pageGo to page: 1, 2, 3 ]

Interrupted

36

3669

Fri Nov 26, 2010 6:25 am

burg View the latest post

 


Who is online

Users browsing this forum: No registered users


You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum

Search for:
Jump to:  


News News Site map Site map SitemapIndex SitemapIndex RSS Feed RSS Feed Channel list Channel list
Read hundreds of personal Multiple Sclerosis stories on Experience Project. Experience Project is an anonymous community where people connect through their life experiences, made by the same people who built This is MS. With over 30 million personal stories about every possible life experience, you can quickly find people like you!


Interesting: Secret Confessions | Dream Meanings | Ask Questions, Get Answers

Advertise on the premier multiple sclerosis forum