Barb Farrell update

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Post by Thekla » Sun Jul 03, 2011 4:28 am

I don't think this is 'public curiosity' in any of our enquiries about Barb's health. We are all potentially facing similar situations and good results for one who was in such dire straits is encouraging to all.

I actually haven't seen Barb post much anywhere----it is usually her husband. I respect their privacy but she became quite a catalyst for many in her fight for treatment. Periodic updates to those of us who despite not personally knowing her, care about her and her progress do belong on this forum. We are all fighting the same battle, just on different fronts.

If she was indeed just 2 weeks from death before her procedure last year, I have to see a 1 year post as very positive. We know that those of us in the worst shape are not likely to bounce off the table and start jogging, there has been too much damage for too long but there are many different definitions of positive results.

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Post by blossom » Sun Jul 03, 2011 11:09 am

thanks for updating about barb. my heart felt feelings are there for her and her family. i've learned in life to never say never and where there is life there is still hope. there also is a sobering reality and that is harder to change but with other doctors from all walks slowly getting in on all this i'm holding onto hope for barb and all of us.

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Post by Cece » Sun Jul 03, 2011 11:27 am

It is upsetting that she had a positive response to CCSVI treatment but she cannot get local treatment in Canada. Dr. Sandy MacDonald is excellent and is right there.

People care about Barb Farrell. It was awful last year, when we learned she had just missed getting treated by Dr. MacDonald and had then gotten much worse. The Canadian politics are having an effect on personal lives. There was a gentleman I posted about over the winter who was petitioning to get the treatment in Canada on a compassionate exemption basis, who was denied, and who unfortunately passed away that month. These are real lives being affected by the decisions being made. The recent decision to fund Canadian trials was made because of real evidence in the meta-analysis of CCSVI studies and the preliminary returns of the 7 observational studies. Maybe this will make a difference and the next time someone petitions for compassionate exemption, they will not be denied.

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Post by KateCW » Tue Jul 05, 2011 7:23 pm

I feel terrible for Barb. I also have a child and fear that due to my aggressive decline I may be in her position someday. However, it seems strange to say that her decline after the procedure was due to immunomodulators. Maybe CCSVI just doesn't work.She felt better due to the power of the placebo effect, If we could make it last it would be wonderful.

I pop in here for updates looking for news to support this theory and make me believe it could help me, but I just don't see it. I kept an open mind for a long time, but thre benefits , if any, don't seem to last.People make excuses -"it was the immunomodulators/re-stenosis, they didn't use Dr. XY or Zs protocol,etc". I don't think this is helpful to any of us.

I welcome the trials here in Canada to put this issue to rest once and for all. I wantt to know the truth, not continue to make excuses for why it does not seem to have lasting measurable benefits. Or maybe it does? It just doesn't seem like it fro, what I read here.
Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy

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Post by cheerleader » Wed Jul 06, 2011 9:19 am

Dr. Zamboni has been very clear...angioplasty for CCSVI cannot undue years of MS damage. There is no cure for stroke, there is only stroke rehabilitation and recovery. Angioplasty is not a miracle cure. It is a treatment.

Barb was not able to have continued physical therapy after she went home from the hospital. She did not have any follow-up. Without movement, blood flow can be curtailed, and hypovolemia and restenosis can occur. Without follow-up scans, who knows what's going on with her vascular system?

It is heart-breaking, and I don't think anyone can say what really happened. Barb was in bed, unable to talk or move before her angioplasty. She had a wonderful respite, had physical therapy, was talking moving, swallowing at the rehab center and then went home with no more follow-up. I have a friend who had a stroke, and his insurance pays for his rehab. It's now two years after his stroke. He goes to a rehab center where he works on walking, talking, hand movement and speaking with a physical therapist. He has his arteries scanned and is on a blood thinning protocol. We should expect no less for those with MS. Follow-up and a realtionship with a physician is essential.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09

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Post by Cece » Wed Jul 06, 2011 9:35 am

I'd forgotten about the six month update, back in February:
Cece wrote:
via Patrick Farrell
Barb had her 6 month with Dr. McDonald yesterday and guess what?
Everything is open and flowing the way is is supposed to be and the stent has no issues. Needless to say we're all happy as can be.
great news for this family!
So at least at that time, she had flow.

I agree about the stroke similarities and the need for rehab!

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