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Good! Did he decided staying on MS drugs because of his walking? Even today, I wondered if it's really necessary.... Because of that, my neuro thinks my improvements are link to my drugs and not the procedure. Funny though, I was on my 3 months break of Tysabri when I had my procedure, and I improv...

SickButHappy2 wrote:Sorry to hear the CCSVI treatment didn't provide improvements to your husband ;(

Procedure did provide some improvements: reduced numbness in legs, no longer feels like he is walking on balls, reduced left side back pain which was constant. However, walking has not improved.

I've been hoping to read from someone who falls into this category. My husband has also been on Tysabri for over three years, had the CCSVI procedure with Dr. Scalfani and his neuro now wants him off Tysabri (JVS and cancer drugs) and on Gilenya. Only thing is my husband was diagnosed in the 70's an...

I talked to the Vacular Access Center in Pittsburgh about four weeks ago to see if they use the Zamboni protocol ultrasound. Talked to office manager and he said they do not do Zamboni ultrasounds, nor do they do ultrasound before procedure. I had called hoping their center could be a possibility fo...

We too live in Pittsburgh area. Hoping to hear more about this doc for those I know who can't afford to travel for treatment.

Hi Doc, Was just reading NotJohnson's Brooklyn Bound post, and NormB said his lower back pain improved after the procedure. I noticed my lower back pain dramatically decreased -- I hate to jinx it and say disappeared -- the day after my May 6 procedure. My back issues started with the onset of my d...

Thanks Johnnymac. I will ask his neurologist about IRIS.

If my husband was in the beginning phase of this disease, I would tell him to NOT take any meds, but unfortunately he was diagnosed in the mid 70's. There is much damage to his system.

It is hard to know what to do.

My husband had the procedure five weeks ago with Dr. Sclafani. He has been on Tysabri for over three years. His neurolgoist wants to take him off of the Tysabri because he tested positive for the JVS virus and had taken methatrexate (many years ago) for about four years. He said most of his patients...

That's scarey ---

What it also means: It's possible that even if insurance is accepted at the time of the procedure, any new policy might be able to be retroactively applied and the provider expected to return funds and either write that off or bill the patient for the amount.

IBT made no difference for my husband. However, our bed wasn't inclined to the degree suggested. It was inclined for at least two months and neither of us noticed a difference. However, with CCSVI procedure, he did notice differences in the numbness in his feet and legs. His problems were all in his...

Thanks Dr. Scalfani for taking the time to explain. Reading about the procedure, I can see how much I missed or misinterpreted during our conversation.

Holding you in our thoughts and prayers.

Center,

I wonder too. Since he had no flow in the LJV because of the flap that closed off the vein. Was he born with this vein closed off?

Thank you all. It sounds like the pain on the right might have gotten worse for him? It is unfortunate if this is the case. I have no answers. I don't know if it is worse or if now that the constant pain on the left is reduced, he is feeling the pain more on the right. I never realized that he was h...

Thanks to Dr. Sclafani and all his staff for their kindness during my husband’s treatment in Brooklyn on 4/1/2011. A little background – My husband was diagnosed in 1975 at the age of 26. The year before he had ON, but when diagnosed his leg was dragging and he was losing arm strength. He has receiv...