Gibbledygook's Stents

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

Postby gibbledygook » Tue Apr 13, 2010 3:17 am

Thanks L, I'm sure the struggle will be worth it. Pregnancy is definitely a major vascular event! Lord knows what's happened but it's absolutely exhausting not getting any sleep due to spasms even before the baby arrives! It seems as though this week the nose bleed is finally calming down so maybe any bleeding from the brain veins might also be stopping...I'll be glad to see the results of the ultrasound scans. :?
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 whyRwehere » Tue Apr 13, 2010 3:47 am

Gibbs,
At least your BP is better, and I am relieved to hear that. I hope you have a good birth now and that everyone will be safe!
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Postby magoo » Tue Apr 13, 2010 6:32 am

GG,
I just wanted to tell you I'm pulling for you. It's a lot to carry a baby on top of the treatment.
I had the headache you describe for several weeks after my treatment on the left side. I found wearing a soft cervical collar for a few hours a day would relieve the tension on the muscles and resolve the headache. Maybe your posture during pregnancy is straining the neck muscles even more? It may be worth a try? Also try stretching those spastic legs before bed. It may help?
Best of luck and be well.
Rhonda
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby cheerleader » Tue Apr 13, 2010 7:42 am

Alex...good thoughts going across the pond to you. Jeff developed those cluster headaches last fall and still gets them now and again, and he's figured out (for him) they're most likely related to posture and hydration. On days when he gets good water and doesn't crunch up his neck working on the computer, he doesn't get them. He didn't like the cervical collar so much, so instead he is constantly reminding himself to keep a neutral neck, no hunching. But those headaches hurt, and he sends his sympathy. If he gets them, he finds lying down relieves them pretty quickly. He goes for his one year at Stanford soon, we'll post if we learn anymore. Last checkup in November, the veins/stents looked great- and he was getting the headaches then..so who knows?

One thought I've had is that maybe the headaches are because now that your jugular veins are working well, the bloodflow and CSF are increased during the night, and then when you're upright during the day, the vertebral veins are not up to this new bloodflow? Might be something to ask the ultrasound doc. I know Mitch (enjoyingtheride) showed vertebral insufficiency as well as jugular, but Dr. Sclafani did not feel comfortable ballooning these veins. Could be like getting a minor lumbar puncture headache every day--due to changing fluid levels in the brain. It's a thought...and one I think will need more investigation. But I could be completely off-course...

I am so sorry this pregnancy has been harder than expected, and that you are dealing with the spasms again. No advice there, just sympathy and prayers. You are a trooper, and deserve all good things. Hang in there, and keep us posted. It's good to "hear" from you-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby gibbledygook » Tue Apr 13, 2010 8:45 am

Thank you so much for your thoughts and suggestions. I really appreciate them at this time. I guess that pregnancy does so much vascular stuff with big increases in blood volume and vasodilation and changes in blood pressure that almost anything could be causing the deterioration. I just hope that the stents haven't moved. I'll post an update as soon as I hear from the radiologist.
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 eric593 » Tue Apr 13, 2010 9:29 am

Hi Alex,

I hope everything continues smoothly for you.

I'm also wondering if you have a post in the Tracking thread where you note that you had an MRI post-stenting that showed new lesions? You are the only person I've heard that has had an MRI after treatment and the fact that it showed a new lesion is important information for those who are following the progress of the early pioneers.
Last edited by eric593 on Tue Apr 13, 2010 11:12 pm, edited 1 time in total.
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Postby gibbledygook » Tue Apr 13, 2010 10:50 am

Hi Eric,

There was quite a debate about the alleged new lesion as the MRI scans performed in London were different to those performed at Stanford. Stanford's neuroradiologist team concluded that it was impossible to say if there were a new lesion or not. My London neurologist said it was impossible to say when the lesion formed! So not very useful information.

I'm 38 and in the last chance saloon for having a baby.
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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Pregnancy / CCSVI

Postby LSITC » Wed Apr 14, 2010 10:51 am

Hi GG

You are so not at the last chance saloon of pregnancy. A friend of mine is at least 3 years older than you and just produced twins at her first effort. OK she does not have MS but as a healthy person she had a tough pregnancy. Pregnancy is hard - I had two really poor pregnancies - but try and relax physically and mentally if you can - it does make a difference. Best wishes.
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Postby gibbledygook » Wed Apr 21, 2010 3:30 am

I have had the ultrasound. The left stents now show a clear kink where there was none from the last computer topography xray in late August 09. I think this will go a long way in explaining the deterioration in my symptoms since pregnancy.

I now need to know whether I should get rebalooned or stented post-partum.
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 » Wed Apr 21, 2010 3:51 am

I suppose its good news to see an obvious reason for the deteriotation in your symptoms. It gives us hope to know the reason and that hopefully it can be sorted once your bundle of joy has arrived!

You just got to hang in there until the procedure can be re performed x
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Pregnancy / CCSVI

Postby LSITC » Wed Apr 21, 2010 8:35 am

GG

So sorry to hear about the kinks. Are you sure that wherever you had this done they are totally in the know about what to look for? HAve you spoken to Stanford and asked for their opinion?

Regards
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Postby bluesky63 » Wed Apr 21, 2010 12:49 pm

Will you be able to go back to Stanford? I wonder if anything can be recommended to help while you are waiting/while you are pregnant, since now you know what the issue is. I wish this was easier for you!
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Postby magoo » Wed Apr 21, 2010 12:51 pm

Hi GG,
Is there an actual kink in the stent itself or a kink in the vein??? I'm sure you are following up with Dake. Take care and keep us posted. Thanks :)
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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New stenosis of stent during pregnancy

Postby gibbledygook » Thu Apr 22, 2010 12:10 am

Hi all,

There is a kink in the stent! Here is the radiologist's report:

History: Previous stent insertion into both internal jugular veins related to a background of multiple sclerosis.

Findings: On the left side there are overlapping stents in keeping with the given history. The lumen at the cranial and caudal limits of the stent is approximately 11 mm but there is a focal area of narrowing in the mid stent where the calibre reduces to 3 mm. This is not causing turbulence or demonstrable increase in velocity at the time of the study during quite respiration. The point of narrowing appears to correspond with an underlying transverse process from what is likely to be C1.

On the right side the appearances are entirely unremarkable with no narrowing, the stent being widely patent. More caudally the jugular veins are normal in appearance. Carotid appearances are normal.

Review of the outside CT from the London Bridge Hospital dated 2009 demonstrates that at that time the stents were widely patent and therefore this slight angulation and narrowing is a new phenomenon. The significance of this non obstructing relative stenosis is debatable and clinical correlation would be required.


Obviously I await Professor Dake's response to this with baited breath but I imagine that I should have the stent ballooned but only after the pregnancy. I think the "transverse process" is something to do with muscle tissue as the radiologist mentioned a jaw muscle as the likely cause of the kink. I doubt a 3mm gap is sufficient for good blood flow. And he calls it stenosis.
8O
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 Johnson » Thu Apr 22, 2010 12:20 am

Gibbledy,

If my limited recollection of anatomy serves, the transverse process is the "wing" on each side of the vertebrae, which would indicate that it is the bone of C1 that is offending the stent.
My name is not really Johnson. MSed up since 1993
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