NY here we come.....

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Re: NY here we come.....

Postby NHE » Sat Sep 15, 2012 12:53 am

Allynz,
Thanks for sharing your experience. I hope that Dr. Sclafani can provide some helpful guidance at this point.

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Re: NY here we come.....

Postby allynz » Mon Jan 07, 2013 1:10 am

Well call us crazy but in October my husband went back to New York, this time on his own, for another round of treatment. Things were mildly successful for a few days in July but regressed and the arrangement with Dr S is that if this happens he will treat you again within 90 days for free.

Work was super crazy and driving me to drink but that week was probably the most critical of the year so I couldn't leave, plus I need to look after our baby and my brother and his family were coming over from Melbourne to visit. Going alone was far from ideal but there is simply no alternative this time around - family is of course more important than work but things have a different slant when you are the sole income earner and there is a mortgage to pay.

So off he went, it was totally scary and the what if's were huge but at least he knew where he is going and how to get around etc. and because of this Dr S. gave his blessing to travel alone.

The surgery went quite smoothly but his veins are bad. On one side it is closed completely and nothing more can be done. On the other it is very narrow and likely to close up again. So our expectations for any improvements were very low but we had to give it a shot. The clinic and Dr S were amazing and have looked after my husband so well calling the hotel all the time to check on him (5 times the first day) and had him visit clinic 3 times over the week he was there just to be sure he was ok because he had some clotting issues at the entry point.

The trip home was exhausting but the pradaxa effects weren't so bad this time around and I do think he was better right from the time he got home, he is brighter and more positive and despite having a bad cold when he first got back which would usually wipe him right out he was able to be far more productive since he got back doing things like cleaning the car, painting one of our doors, doing far more stuff around the house - all things he usually doesn't do or procrastinates forever about. He has also said he seems clearer in his thinking and our conversations seem far more natural and coherant with him losing his train of thought less often. So only small things but big things for us.

However many of his symptoms have not improved the most debilitating being his heavy and unco-operative legs. He's had some really good days but also some really bad ones, like today. Now 3 months on from that second round of surgery the benefits seem to have held and just yesterday we were discussing if the trip was worth it and we think it was.

He should doing another ultrasound now but we can't afford it and can't really see the benefit, they don't really have the skills to do it properly here and his veins are so poor that even though he hasn't regressed in the same way as he did the first time(it was really obvious last time) there doesn't seem to be anything to be really gained from the scan because his veins really are too bad to treat. I fully believe in CCSVI and believe we were right to try and that if his veins had been capable of achieving better flow then there would definitely be significant benefits to be had but unfortunately it is not the solution for us and sadly it seems my husband will continue his decline.

We will be eternally grateful to Dr S. for being a pioneer in this field and for his perseverance in treating my husband.
Last edited by allynz on Sun Feb 10, 2013 12:39 am, edited 1 time in total.
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Re: NY here we come.....

Postby Cece » Mon Jan 07, 2013 10:29 am

Allynz! Thanks for posting an update! I think the invisible improvements like clearer thinking are valuable in their own right but for myself I also consider it a sign that the blood flow is still good (at least better than it was) and so if there is healing that can happen over time, that flow will help with the healing. I am very sorry to hear about the heavy uncooperative legs and the bad days.
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Re: NY here we come.....

Postby drsclafani » Mon Jan 07, 2013 12:44 pm

allynz wrote:Well call us crazy but in October my husband went back to New York, this time on his own, for another round of treatment. Things were mildly successful for a few days in June but regressed and the arrangement with Dr S is that if this happens he will treat you again within 90 days for free.

Work was super crazy and driving me to drink but that week was probably the most critical of the year so I couldn't leave, plus I need to look after our baby and my brother and his family were coming over from Melbourne to visit. Going alone was far from ideal but there is simply no alternative this time around - family is of course more important than work but things have a different slant when you are the sole income earner and there is a mortgage to pay.

So off he went, it was totally scary and the what if's were huge but at least he knew where he is going and how to get around etc. and because of this Dr S. gave his blessing to travel alone.

The surgery went quite smoothly but his veins are bad. On one side it is closed completely and nothing more can be done. On the other it is very narrow and likely to close up again. So our expectations for any improvements were very low but we had to give it a shot. The clinic and Dr S were amazing and have looked after my husband so well calling the hotel all the time to check on him (5 times the first day) and had him visit clinic 3 times over the week he was there just to be sure he was ok because he had some clotting issues at the entry point.

The trip home was exhausting but the pradaxa effects weren't so bad this time around and I do think he was better right from the time he got home, he is brighter and more positive and despite having a bad cold when he first got back which would usually wipe him right out he was able to be far more productive since he got back doing things like cleaning the car, painting one of our doors, doing far more stuff around the house - all things he usually doesn't do or procrastinates forever about. He has also said he seems clearer in his thinking and our conversations seem far more natural and coherant with him losing his train of thought less often. So only small things but big things for us.

However many of his symptoms have not improved the most debilitating being his heavy and unco-operative legs. He's had some really good days but also some really bad ones, like today. Now 3 months on from that second round of surgery the benefits seem to have held and just yesterday we were discussing if the trip was worth it and we think it was.

He should doing another ultrasound now but we can't afford it and can't really see the benefit, they don't really have the skills to do it properly here and his veins are so poor that even though he hasn't regressed in the same way as he did the first time(it was really obvious last time) there doesn't seem to be anything to be really gained from the scan because his veins really are too bad to treat. I fully believe in CCSVI and believe we were right to try and that if his veins had been capable of achieving better flow then there would definitely be significant benefits to be had but unfortunately it is not the solution for us and sadly it seems my husband will continue his decline.

We will be eternally grateful to Dr S. for being a pioneer in this field and for his perseverance in treating my husband.


I am very pleased that cognitive improvements occurred. It suggests that some of the symptoms are not related to permanent neuronal death.
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
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Re: NY here we come.....

Postby allynz » Tue Jan 08, 2013 12:00 am

I know you say you a not an MS Dr or expert in MS but gosh I wish you were, more Drs with your attitude, thirst for knowledge and appreciation of the challenges this disease brings is what we need. Like many of the participants on this board I believe it it a collection of ailments the conditions and symptoms that together are called MS and as such a collaborative open minded approach is needed. Hopefully in time we can find other experts as willing and able as you to help with the jigsaw.
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