Fraser's Adventures in Poland...

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

Postby tipsyturtle » Tue Mar 30, 2010 8:00 am

I feel the same way as do you Inge! (Am leaving in a couple of days.)
Thank you again for your informative and generous posts Fraser. I am so touched as are so many others.
Thank you, thank you, thank you!
jo

:D
Katowice, April 7/8
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life after procedure...

Postby fraser » Wed Mar 31, 2010 1:51 pm

My husband has had 3 good days at work. Just started back on Monday, so only a little time to rest since being home. Slept very well on Sunday and Monday nights, so felt great at work. Went to a meeting and felt clear headed. He was actually contributing ideas during the meeting. Very difficult to do before. Last night he didn't have a great sleep, but I called him at work today, and he felt good, a little tired but not MSy.

I don't want to report too often - I'm sure people don't want to read daily reports. Once a week? Once a month?? Any suggestions. Better not too often, since it might be difficult to gage progress. Maybe I'll just post from time to time, or when something significant happens.

We are definitely going to go back for the follow-up. I guess lots don't return, but I don't think I'd trust anyone else at this stage. I think just for the peace of mind it would bring is important, even if things are going well.

Maybe someone has some thoughts on this. The doctor told my husband that he can do anything he feels like doing. For some reason, instinctively, it makes more sense to me to go slowly and not overdo it. I know within a certain period of time the stent is more permanent, so wouldn't it make since to wait until then? Just wondering what others have done.

I think that's all for now - all is going well,
Fraser

ps. Thank you again for all your good wishes and support!
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Postby Robnl » Thu Apr 01, 2010 3:57 am

I try to do it slow, have done a week working now (4-6 hours a day), next week i'm a week off...Trry do do some physical exercise that week.


Regards,

Robert
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progress made..

Postby fraser » Tue Apr 06, 2010 9:51 am

9 good days in a row!! (plus the 2 amazing days in Poland!) Aside from the occasional normal fatigue, energy has been really good (not that crippling MS fatigue). Limp is almost non-existant, clear head, sleeping well, etc. My husband was travelling on business, and one night they went to a casino at midnight - before the procedure he could never have managed it.

Can't wait until I no longer count the good days - right now I'm just grateful for each new one. I know there are still risks about using stents, so there is a tempered optimism, but at least there is a real solid hope for the future - one that won't be dominated by MS.

Governments around the world need to seriously start funding CCSVI, especially here in Canada. According to the CBC website, Canada has the highest rate of MS in the world, at 240 cases per 100,000 people. Approximately 75,000 Canadians have the disease, and half of the population knows someone who has it!!! Why is our government waiting to act? Why aren't they talking to people who have been liberated? Why can we not lead the world as a compassionate country that puts the needs of those that are sick and suffering over profits?

God bless all the doctors that are pioneering this treatment around the world - especially the very brave, and exceptional Polish Drs. Simka and Ludyka. We will forever be grateful.
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Postby mangio » Tue Apr 06, 2010 11:03 am

Fraser,
So happy for your family. The prairie prevalence rate is 450/100K for women, 180 for men. That's why Saskatchewan and Alberta's numbers
blend to be 350 per 100,000. I bet Manitoba would be in the same range.

In my own research I found the Quebec rate to be much
lower, blended around 175ish and most scientists here think f.cdn's have
a protective gene at play. Hugh restless leg syndrome rate, I've
often wondered if that could be a factor?
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MacLean's

Postby fraser » Thu Apr 15, 2010 6:57 pm

If you live in Canada pick up MacLean's magazine (April 26th). Great article on CCSVI and MS. Loved it because it focuses on people that have been liberated or in support of it. A really great human element to the story (especially loved what the Italian doctor working out of Belfast had to say about his own experience being liberated).

For those not in Canada should be on-line in a few days (I think!).
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Postby colapesce » Thu Apr 22, 2010 3:15 pm

How is Mr Fraser doing?
Hope all is still going well :)
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Postby fraser » Thu Apr 22, 2010 3:26 pm

Hi Colapesce,

Fraser is doing really well - he feels like a new man. Only one bad day in three weeks last Friday, because he didn't sleep well, but other than that things have been great.

It's still hard for me to believe these changes are going to stick. I think because our life has changed so dramatically since the procedure - it's been miraculous really. I believe in my heart of hearts that MS is a vascular condition - his was fixed, and now he's virtually symptom free. I know he was lucky to have this procedure so early on since his diagnosis (although it doesn't matter how long someone has had MS - it's crucial that the veins are opened regardless!!).

Thanks so much for asking!
Fraser's wife
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Postby colapesce » Thu Apr 22, 2010 3:47 pm

Brilliant news! Am so happy for you both :)

And to think that less than 5 months ago (before I heard of CCSVI) the future wasn't looking too bright... It's amazing! Can't wait for my turn :)
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question

Postby fraser » Mon May 17, 2010 6:23 am

We'll it's been just about 2 months since the procedure - two wonderful months...just one little question that hopefully someone might have an answer to.

Everything has been great - no regrets at all. Virtually no headaches except for last week. For close to a week my husband was experiencing kind of a week long headache. Not in the normal sense - different somehow. It was sort of like a wave that would wash over him. It would come and go, but was a very different sensation compared to what he use to have (migraine headaches usually, that would often take a few days to go - and constant also). This one felt more like acid on his brain, like a metal sensation. I got to wondering if it would have anything to do with the iron in his brain, possibly detoxing. I've been suspicious of this because of how different it felt from his regular headaches, that really he doesn't experience anymore.

Does anyone know if it can take a few months of restored blood flow before the iron gets excreted from the brain? If, of course it can be excreted. I spoke with someone on TIM's whose husband started to get headaches after the procedure and he's had a checkup and everything is still going perfectly stent-wise. His doctor wondered if it could just be improved blood flow, metal detox, but isn't exactly sure.

Has anyone experienced this after the procedure?? He's drinking green tea, eating cilantro - but not sure these are the best for an "iron detox", so any other suggestions would be greatly appreciated.

It's been a wonderful 2 months - just a little snag with these "acid" headaches.

Thanks a million!
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Postby openmind » Mon Jul 19, 2010 1:37 pm

Hi there to you both, how are things going for you? I still remain postive about my body having small improvements al beit slow and mylegs have got somewhat worse, but everything else seems to be better than before, sensory nerves are changing as pain has gone down, legs are more flexible but still cant lift right leg..yet! feeling good though and life is good right now.
How about you guys? love to hear from you. jo xx
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Followup after Poland

Postby fraser » Wed Nov 24, 2010 9:23 am

Hi All!

My husband had his first followup after Poland at the end of October. Probably waited longer than we should have but not easy getting back to Poland. We found a clinic in Canada (Barrie, Ontario), close to home that does followups for MS/CCSVI patients. We've been a little nervous about the stent and it's condition - always something you think about.

The followup went really well, and the technician said the stent and blood flow were perfect. Such a relief! Especially after all the bad press lately. We were also concerned because some of my husband's symptoms seemed to return. The technician (who has trained some of Dr. Zamboni's patients in Italy!), said that the return of symptoms is somewhat typical with people who have had the treatment. She said they are wondering if it is previous damage to the brain, and it could be an indication that the body is healing. She also said the euphoria you feel after the procedure is almost like the body being in shock - finally the vein is opened, things are amazing, but then the body settles down and things can resurface - after all there are still iron deposits on the brain.

The appt. went well and so relieved to have a supportive place to go to for checkups. No real need to return to Poland right now.

Did anyone out there have a problem with headaches that subsided after the procedure only to return later? Sleep was also something that improved but now my husband is back to waking nightly (no bladder problems though)...that is also why symptoms seem amplified - everything is worse when you don't sleep.

All for now!
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