Search found 173 matches

by lucky125
Fri Nov 04, 2011 7:23 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: SPASM AND STIFFNESS AS SPASTICITY
Replies: 76
Views: 11097

Re: SPASM AND STIFFNESS AS SPASTICITY

Interesting thread. I have been successfully treated for CCSVI 4 times now. So many symptoms improve it is amazing. The one problem I am left with that is very frustrating is spasticity in my left hamstring. It responds to baclofen, but it is so tight that it interferes with my gait. Today I just ha...
by lucky125
Thu Sep 01, 2011 7:17 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: DR ARATA
Replies: 5
Views: 2341

Re: DR ARATA

Mike Arata For most patients valves are the issue. When scarring occurs and the vein shuts down the issue is not getting thru the obstruction....its how do you keep the vein open once you get thru the blockage. In any other vein you would use a stent. NOT in a jugular vein. Jugular stents, especial...
by lucky125
Wed Aug 10, 2011 6:39 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Increase in Spasticity in Standing position
Replies: 17
Views: 4498

Re: Increase in Spasticity in Standing position

I experience great deal of increase in spasticity in my right arm and legs while standing. The situation gets better as I sit or lay down. Is it related to CCSVI :?: CCSVI may have contributed to our nerve damage that causes spasticity. My spasticity in my left hamstring gets worse when I stand for...
by lucky125
Tue Aug 02, 2011 4:09 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Has anyone had the Liberation Procedure done twice?
Replies: 11
Views: 2909

This last set of improvements had some significant ones, including foot drop and heat intolerance. I never knew you had problems with drop foot. Drop foot is my biggest problem and makes it very difficult to walk now, which causes my EDSS score to be about 6.5. Its like having my foot nailed to the...
by lucky125
Mon Aug 01, 2011 7:26 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Has anyone had the Liberation Procedure done twice?
Replies: 11
Views: 2909

lucky125, has Dr. Haskal used IVUS? And does he have IRB approval? We haven't heard much about what he's up to for awhile. I think the conservative approach beats out the aggressive approach. It is very good to hear that you are having improvements each time. I recently had procedure #2 and have be...
by lucky125
Mon Aug 01, 2011 1:35 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Has anyone had the Liberation Procedure done twice?
Replies: 11
Views: 2909

Welcome Hollyberry, I have been treated 4 times, and improved again after each one. I am able to see a local expert who is conservative in his treatment. He would rather have to go back again than be too aggressive. Until we know more he and I are in complete agreement about this course. The valves ...
by lucky125
Mon Aug 01, 2011 12:14 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Does anyone know how many times you could have CCSVI done?
Replies: 6
Views: 1722

I can say from personal experience that it can be done at least 4 times. I was treated by the same doctor (Ziv Haskal) the last three times. He is very conservative, and each time there was restenosis at the valve on both sides. My most recent treatment was almost 3 months ago, and I am going great....
by lucky125
Thu Jul 21, 2011 7:14 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Kathleen Lynch (klynch56)
Replies: 39
Views: 10078

Kathleen, I, too, am so appreciative of your willingness to stop by. I do not come here regularly anymore, but I spotted a post on FB which linked to this thread. It was one year ago that I enviously watched you strut up those stairs to speak in NY. I hope you are strutting again very soon! We Liber...
by lucky125
Tue Jun 14, 2011 9:37 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Keep the faith, my friends!
Replies: 19
Views: 4501

Yes, scientific scepticism is good all the way around, but even with some regression toward the mean in correlation between CCSVI and MS, it is pretty clear there is something there. Some of us were hopeful that this was in fact a rather difinitive cause, which a 1:1 correlation would have suggeste...
by lucky125
Tue Jun 14, 2011 9:16 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Keep the faith, my friends!
Replies: 19
Views: 4501

Re: Keep the faith, my friends!

So the euphoria is died down a little. I think that is to be totally expected. We are seeing the results of stents gone bad, insurance denials, and frustrations with government inaction. You forgot to metion the recent trial results that are showing nothing even near the 100% correlation between CC...
by lucky125
Tue Jun 14, 2011 7:49 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Keep the faith, my friends!
Replies: 19
Views: 4501

Keep the faith, my friends!

It was inevitable that the euphoria that surrounded CCSVI during late 2009 and 2010 could not last. This forum was moving so fast, it was almost impossible to keep up during that time. Many of the originally treated patients from Stanford were very active on TIMS. As others of us were treated, we ad...
by lucky125
Fri Apr 29, 2011 12:34 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: 2nd Annual CCSVI Symposium in NYC July 15-17
Replies: 158
Views: 33153

I'll be there! The meeting last year was so exciting. It was the first time that doctors had the opportunity to share information in a forum such as this. It was fascinating to hear them all describe their varying techniques. We all learned so much that day! I can't wait to see what a different even...
by lucky125
Sun Apr 24, 2011 4:52 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Who are the best CCSVI docs doing the procedure in the U.S.?
Replies: 34
Views: 8951

You may not need to travel. Check out Dr. Bulent Arslan in Tampa, Florida.
Good luck to you!
by lucky125
Sat Apr 23, 2011 7:05 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: DrSclafani answers some questions
Replies: 8342
Views: 2349004

To add to CeCe's spot-on explanation of why IVUS isn't widely used, currently it is not reimburseable thru insurance. When Dr. S uses it, AAC pays for it, not the patient. It's at least a $600 catheter expense. Then there's the time involved to examine the veins two ways, and the equipment to view ...
by lucky125
Thu Apr 07, 2011 6:48 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: RESULTS and techniques of different doctors (CCSVI)
Replies: 35
Views: 8202

That's the third report of Dr. McGuckin ballooning renal veins. Either the rest of the IRs are undertreating this vein or he is overtreating (and I don't know which it is right.) How big of a vein is it? Is there precedence in the literature for ballooning the renal vein as there is for the iliac a...

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