We had good news and bad news

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

Postby kevin4apenny » Sun Mar 28, 2010 2:13 pm

dear Whyarewehere

I am not adept at using thisims yet, please excuse me.
I was replying to a post by 'mrsjitters' who mentioned the sad fact of a fatality. I am so sorry if it has brought sad memories. It is a credit to this group of supportive, loving people that Molly is remembered fondly by you all.
To 'cah'; when I mentioned sticky's, I only meant as a means of notifying people about risks of the procedure, but I may not have the workings of the site down right yet, sorry. There is so much to read and to sort out about the whole CCSVI thing my head is spinning.
Some 'support groups' are not at all supportive and it is very frustrating, especially when, as an ex Nurse, I have to sit and listen to so called professionals saying 'people don't want to sit and talk about their MS' - that hsa not vbeen my experience at all. Especially in light of the new developments. I am sorry if I am ranting (head still spinning).
I am very pleased to have discovered Thisisms, you are all quite invaluable.
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Postby whyRwehere » Sun Mar 28, 2010 2:36 pm

No problem, but it was Holly, not Molly. Yes, TiMS is a good place.
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Postby youbetcha » Mon Mar 29, 2010 8:06 am

Whyrwehere, was your husband put on blood thinners (coumadin)?
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Postby whyRwehere » Mon Mar 29, 2010 10:46 am

No he was not given any blood thinners....funny you should ask me that, because I just asked Thegreekfromthed why he was put on warfarin if he only had angioplasty done. Waiting for his reply.
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Postby youbetcha » Mon Mar 29, 2010 11:04 am

Well, there are a few people who had angio done by Dr. Sclafani, and they too are on blood thinners. Hmmmm I wonder what the determining factor is?? Interesting.

Thanks!
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whyRwehere

Postby LauraV » Fri Aug 13, 2010 1:54 pm

I came across your thread today, several months after your husband's treatment in Paris. How is he doing? Are you happy with the results? How does he feel?

Do you have any advice for those of us who haven't yet had the liberation procedure?
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Postby whyRwehere » Fri Aug 13, 2010 11:27 pm

My husband is the same. He seems less tired in the evening and more cognizant, but his walking is like a 90yr old shuffle. He still has bladder issues, leg spasms at night, and other issues that are less important.
We went to see a doctor about the possibility of CTOS and there does seem to be a problem, but we can not afford surgery for that, so have started seeing a chiropractor, to improve posture, etc. That is relaxing, but it comes out of our pocket so it is also expensive.
I am glad to say, that nothing is worse.
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Postby LauraV » Sat Aug 14, 2010 11:57 am

why,
I'm sorry to hear that your husband's condition hasn't improved, but as you said, the good news is that he hasn't seemed to progress. That's a big plus.

What is CTOS? I know what you mean about the chiropractor. It helps me some, but what really helps with my muscles tightening and my posture is rolfing, but that comes out of my pocket, too.

It seems that we really are in the steep learning curve of CCSVI and MS. There's an obvious connection but we have to learn how to treat the different ways that it affects us. I think some of us need more than one procedure and possibly different kinds.

I'm still waiting for mine, but I'm really not sure what to expect from it when I do finally get it. I'm being "cautiously optomistic".

I wish you and your husband good luck. This &^%%$# disease is so frustrating!
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ctos

Postby blossom » Sun Aug 15, 2010 11:51 am

whyrwehere, what type of dr. checked your hubby for ctos? was it a vasc. dr? the way i understand tos is accepted and treated and if you have it you likely have ctos. any info. appreciated.
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Postby whyRwehere » Sun Aug 15, 2010 12:13 pm

He was seen by Dr Castillo Recarte in Madrid. He said that he thought my husband did have a problem that could be operated on, but that he should try other things first ie diet, supplements and exercise.
We don't have the money for that surgery, so I am looking at ways of relaxing the scalene...ie chiropractor visits, but this rolfing which laura mentioned seems like it would be helpful...I'm busy studying the youtube vids of it. Looks like it could be painful though....and it also is not cheap!! (well, affordable, I mean).
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Re: We had good news and bad news

Postby johnysyxxx » Wed Sep 12, 2012 8:40 am

Hi,

I just read the 3 pages of replies and was wondering if you ever spoke to your doctor to ask the permission to name her to us. I am looking into finding more informations about Doctors that might be able to help in the Paris Region.

Thank you so much,
Jonathan
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Re: We had good news and bad news

Postby whyRwehere » Wed Sep 12, 2012 11:21 am

Hello Jonathan,
The doctor informed me that even she is not allowed to perform the procedure in France. She had been able to do a study at the hopital pitie salpetriere, but I do not know what came of it. I do know, that she felt my husbands problem was to do with a missing vein and a general lack of circulation...no pressure to keep the veins open. Last spring, we had a ultrasound done of my husband's arteries to check on his feet and the circulation there (very bad, his feet are always cold and the left one is often blue/red/purple). The conclusion was that his arteries on his left side are all smaller than the right, but that there were no actual blockages and there was nothing they could do about this, so it was left there.
My husband has now progressed to a wheelchair for any distance.

WhyR
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