Edinburgh did nothing - what now?

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

Edinburgh did nothing - what now?

Postby Trent » Fri Sep 09, 2011 7:29 am

It's a month since CCSVI proceedure at Edinburgh. With advanced PPMS I had high hopes. It seems it was not to be. My purple feet have become more (but not completely) normal in colour. My legs/feet are still as cold. Pain from spasms in my right arm has gone mostly. I can wiggle my left foot a bit. That's about it. I think my left hand has more numbness.
So, is it on to Stem Cell Therapy? And will that stop the rot? Or even reverse the damage? And when might that be? Too late at 69?
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Re: Edinburgh did nothing - what now?

Postby Rosegirl » Fri Sep 09, 2011 8:11 am

Give it about six months. I had no changes for about 4 months. The improvement is small but steady. Give yourself time to heal.
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Re: Edinburgh did nothing - what now?

Postby dania » Fri Sep 09, 2011 9:06 am

At least you have had some improvements and have kept them so far. That is good news. Wait a little longer. I tried stem cells before CCSVI procedure. It did absolutely nothing for me and all the others that were there at the same time. The problem with stem cells,(this is what the doctor at the stem cell clinic told me) is that you never now where the cells will go. Do not put your money into that until the technique is perfected.
Maybe you were under treated. You can consult another doctor by sending your reports. Try Dr Arata, Dr Moguel there are many others.
If it is the iron that is now in the brain, it took time to build up and maybe it will take time to leave your brain.
I got great improvements after the first time but they only lasted 1 week. I had a second treatment, with very little change and I have tried 3 more times but all 3 veins are blocked with scarring or clots and nothing can be done. I am worse than I have ever been. My story is not that uncommon. Others now have 1 or 2 veins that are totally blocked and their symptoms are worse than ever.
I know you were probably expecting the big change (that is what we all want) but you have at least some small changes and they are on the positive side.
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Re: Edinburgh did nothing - what now?

Postby Cece » Fri Sep 09, 2011 10:39 am

I would keep up with follow-ups to make sure your veins remain open. I agree too that having even a few initial improvements bodes well for future gradual improvements, as long as the veins stay open. Do you know if you have any hypoplasia of the ascending lumbars? This might be more common in PPMS but can't be treated. Are you satisfied that your treatment was thorough? Sometimes issues are found with IVUS that wouldn't be found otherwise.

For stem cells, there was a recent discussion with Wheelchair Kamikaze, Bestadmom and Dr. Sclafani, related to a doctor's presentation at the July AAC symposium, who was combining CCSVI treatment with stem cells delivered into the carotid artery. This is a different area for stem cells to be delivered. If they're delivered venously, they might be filtered out by the lungs. Intrathecally meant injecting them directly into the spinal cord which might also not be as good as injecting them via catheter in the carotid, since from there they go directly to the target organ (brain).

Bestadmom also had some thoughts on how long it should be between harvesting stem cells and injecting them, so that there is time to sort (?) and grow the right kind (?).

This is getting past my area of knowledge but I think there is much potential in stem cells.
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Re: Edinburgh did nothing - what now?

Postby MrSuccess » Fri Sep 09, 2011 11:45 am

Hello Trent- I also think you may want to wait a bit longer before deciding if the CCSVI
treatment was effective for you . You say you are 69 ? Did I read that right ?

Your input on CCSVI will be of great value here at TIMS. The meer fact that you took the bold step forward ... and sought this out ....... at your age ..... is great .

Please keep us abreast of your story.

It's just great to read so many " I 've actually had the procedure " reports .



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Re: Edinburgh did nothing - what now?

Postby Trent » Fri Sep 09, 2011 12:28 pm

Thank you all for your positive responses! They make me feel better. Other centres for further treatment is not an option here in the UK. Yes, Mr Success, I am 69 - at least until November when I will be 70! So, with your encouragement, I'll stick with this forum which I know has a very supportive cast list. Thanks again for so rapid a set of responses. Hopefully, Edinburgh, UK, made more effect than I have recognized?
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Re: Edinburgh did nothing - what now?

Postby MrSuccess » Fri Sep 09, 2011 3:12 pm

I look at it this way , Trent .... it's like going to the sea shore .... looking straight down ...

is the tide coming IN or going OUT ?

If it took a while for your symptoms to develop ..... I would expect healing or restoration to act much the same ...... and I hate to say it ..... but it's true ...... as we age ...... the process is slower .

That's how I see it.


Stay Calm ..... and Carry on ......



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