Gibbledygook's Stents

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

Postby LR1234 » Thu Apr 22, 2010 12:05 am

I am so sorry GG. I hope they can balloon the stent easily x
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Postby whyRwehere » Thu Apr 22, 2010 12:34 am

Good Luck, honey. Hope it all can be fixed and that the birth goes well!! What's the EDD?
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Postby gibbledygook » Thu Apr 22, 2010 1:35 am

You are right, Johnson! Here is wikipedia:

The transverse or costal[1][2] processes of a vertebra, two in number, project one at either side from the point where the lamina joins the pedicle, between the superior and inferior articular processes. They serve for the attachment of muscles and ligaments.


Mmm. Not sure I want bony tissue blocking my stent up.

EDD is 24th june when I have a caesarean. Another 2 months of no sleep is going to be tough. But hopefully I can be ballooned shortly after the EDD and have the clonus diminish enough to doze between feeds.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby CRHInv » Thu Apr 22, 2010 5:14 am

GG,
Bless your heart. I am so sorry this is so difficult. Know that I am thinking of you and your family and hoping for all the best outcomes.
Take good care,
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby gibbledygook » Thu Apr 22, 2010 5:28 am

Thank you for your best wishes! I will let you know the outcome of Prof Dake's views.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby cheerleader » Thu Apr 22, 2010 7:12 am

Alex...just saw this. Hang in there. Good thoughts with you and the baby-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby gibbledygook » Fri Apr 23, 2010 2:43 am

Well, to my surprise neither Professor Dake nor Dr Simka thought that ballooning the non-patent stent would improve the flow through the stent. Indeed Professor Dake seemed very happy with the radiologist's report. Dr Simka thought that I should go to Poland (which I will in October) to ensure that I don't have stenoses affecting other venous outflow pathways such as the vertebral veins which were not scanned at Stanford. He has mentioned previously that another of his patients who became pregnant was also feeling considerably worse. And he thought that pregnancy could be the cause of the deterioration. As far as I know relapse rates in the first 2 terms are about the same as rates in non-pregnant MS populations so that seems a bit strange.

What is clear is that the doctors do not think that the stent deformity is linked to my recent relapse. So it seems as though the disease process is alive and well despite treatment for CCSVI and a one year stint of inclined bed therapy. Still I did have 3 months post-stent treatment of blissfully low myoclonus and improved bladder control.

This is all hugely disappointing but points to the fact that blocked veins aren't likely the only issue. I think of my extremely low blood pressure during the 2nd term which is when my symptoms started to go haywire. Low blood pressure could lead to hypoperfusion, very slow blood mean transit time through the brain, hypoxia and other factors which are just as inflammatory as refluxing blood.
At least, at this time, I have no major new symptom but just worse pre-existing ones.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby LR1234 » Fri Apr 23, 2010 2:54 am

I am so sorry to hear this GG.

I think you are right that the immune system despite having the CCSVI situation corrected is still triggered in some way.
Maybe the low blood pressure is contributing to the problem.

What does RK say about it all? Is he treating you at the moment for your relapse?

Have you had your iron levels tested recently?maybe there are some issues there? (anemia etc)

I am currently doing an antibacterial/virus and candida protocol.
Do you think that during pregnancy fungals are able to thrive as the immune system is protecting the baby, maybe they cross the BBB?

Just thought I would throw some ideas out there

L
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Postby whyRwehere » Fri Apr 23, 2010 2:59 am

I think you have something there, with the low blood pressure. I really think you may feel better after the birth, I hope so anyhow.
Keep on being a brave one.
Why
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Postby gibbledygook » Fri Apr 23, 2010 3:56 am

Well, there's nothing much to be done during pregnancy as you can barely have an aspirin without the doctors freaking out!! So I haven't seen RK for a while but will do in August, post-partum.

I think maybe one's iron levels are routinely tested during pregnancy and the great obstetrician, Prof Johnson hasn't mentioned anything.

I am currently doing an antibacterial/virus and candida protocol.
Do you think that during pregnancy fungals are able to thrive as the immune system is protecting the baby, maybe they cross the BBB?


Frankly anything is possible. Certainly I felt a lot worse with a bladder infection post-stents but as soon as the infection went away I felt good again. I tried the antibiotic protocol for nearly 3 years but it didn't work for me. I still believe firmly, despite this relapse, that disturbed haemodynamics are key to MS and have not been sufficiently examined. This is why for most people who have not gone and got pregnant, they continue to feel well post-stent or balloon angioplasty. Two months of very low blood pressure could have caused a severe bout of cerebral hypoperfusion, an attendant weakening of the blood brain barrier, hypoxia and all sorts. :cry:
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby costumenastional » Fri Apr 23, 2010 4:12 am

Lets hope that after pregnancy, stabilazation and why not, improvements will come to you. Stay strong friend...

Thank you for letting us know of your condition. Your posts are extremely valuable.
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Pregnancy / CCSVI

Postby LSITC » Fri Apr 23, 2010 6:03 am

Hi Gibbledy

So sorry to hear your news about the kink.

Hopefully Dr Dake will be able to point you in the direction you should go. Is Dr Simka ok about seeing you as you were under Dr Dake previously?

You and a lot of other people on this site have an incredibly vast knowledge and understanding of CCSVI which I am ashamed to say I do not have but you seem to be saying that perhaps stenting was not the miracle cure as we all hoped. My main worry for you is how far you will have to travel post partum to get the attention you need. Can you cope with that and do you have the infrastructure set up home so that you can go? Or will you be able to get set here in the UK?

Best wishes LS
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Postby CureOrBust » Fri Apr 23, 2010 10:35 pm

gibbledygook wrote:This is all hugely disappointing but points to the fact that blocked veins aren't likely the only issue.
The venous issues (from my understanding) are suppose to cause iron deposits in the brain tissue, which then causes the damage and triggers the immune system. You have only stopped the first part of the process, and would need to chelate the existing iron out of your brain tissue. Just my understanding of the current theory.
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Postby ndwannabe » Fri Apr 23, 2010 10:51 pm

Add my best wishes for your recovery, even if slowed by the pregnancy. I firmly believe it IS slowed, not stopped.

Good luck on June 24th!
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Postby bluesky63 » Sat Apr 24, 2010 9:14 pm

I am so sorry you're having these issues. I don't know if you'd be interested in this route, but I thought I'd pass along the info just in case. I used IVIg for years and found it a great intervention. It is often specifically given to women who have MS right at the end of pregnancy and right after birth to prevent relapse and to deal with symptoms.

This link is for Americans, but it still has good info:

http://www.americanoutcomes.com/multipl ... tments.php

If you talked to your doctor about it you might be able to get it if you were interested in pursuing it for some alternative relief while you waited to find out more about your stents, etc. Best of everything to you. :-)
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