Gibbledygook's Stents

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

Postby CureOrBust » Wed Jan 13, 2010 1:09 am

Congratulations!
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Postby gibbledygook » Wed Jan 13, 2010 9:11 am

Thanks everyone! I'll keep updating every few months but I guess my post-stent experience isn't going to be a very good benchmark except, of course, if you're interested in pregnancy post-stents.
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 gibbledygook » Sat Feb 13, 2010 9:55 am

It's been nearly 6.5months since having 3 stents placed at Stanford towards the end of June 09. Approximately 3 months after the stents were placed I became pregnant, partly because I no longer needed baclofen/bottle of wine to calm my night spasms and to get to sleep.

Here is the latest update which I sent to Professor Dake:

During week 17 of my pregnancy, my obstetrician prescribed 0.4ml of enoxaparin or low molecular weight heparin to lower the risks of clots. I take this in tandem with the low dose aspirin. The day I started this injection I had considerably worse night spasms and so it continued for about 5 nights and then the spasms improved quite a bit. I am now 20 weeks pregnant. My blood pressure is now extremely low with a latest reading of 78:56. I wonder if this is reducing the shear stress of the endothelium with negative consequences for the integrity of the blood brain barrier. I wonder that I don't feel faint more often. I also wonder if my recently increased consumption of cacao is having an increased effect in this respect and also in some of the rather worse symptoms which have occured of late. I notice that in certain pubmed articles cacao is said to enhance vasodilation and lower blood pressure. Prior to the stent operation when I consumed large quantities of vasodilating salvia miltiorrhiza my walking deteriorated noticeably. I have decided once more to stop consuming cacao.
The shoulder spasms have made a noticeable come-back and have been particularly bad these last few days.
My bladder is definitely affected by the pregnancy. It seems I need the toilet whenever I stand up. Still I only need two toilet trips a night. I recall on a trip to the Caribbean some 4 years ago (where humidity was high) that I needed the toilet 4 to 5 times a night. I am still clearly much better than then even though I am now 20 weeks pregnant. When I started the enoxaparin I noticed a lot of movement induced phosphenes but they have now died down. The sensory deficit in my left leg has been rather variable with a renewed pain/tingling in the left foot and almost absent the typical sensations in the calf area. I have noticed a slight reoccurence of faint motor dysfunction in the left leg which I had more severely prior to the stent operation and when taking large quantities (10grams+) of salvia miltiorrhiza.
I haven't noticed the facial or torso sensory deficits in a while. My right hand remains pretty much the same but I have noticed a bit of tingling in the index finger. I have had a few moments of swallowing malcoordination in conjunction with ravenous hunger and possible overurgent swallowing. My walking and bowel remain the poorest of my symptoms and both are worse than before the stent operation.


During pregnancy the vasculature dilates significantly in order to take in 50% more blood, one's core temperature is also raised throughout pregnancy. In mid-pregnancy one's blood pressure usually decreases quite a bit. I expect these are all having a significant and worsening effect on my symptoms. I expect cacao/dark chocolate is to be avoided with MS during pregnancy. I'm only half way through but I can't wait for the pregnancy to be over with!
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 » Sat Feb 13, 2010 10:07 am

Hi A,
sorry to hear about all the negative symptoms that have returned. At present do you feel any benefits you gained from the procedure have gone (hopefully temporarily). Thank-you for your honest reporting x
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Postby gibbledygook » Sat Feb 13, 2010 10:17 am

Hi L,
The night spasms and bladder function are still better than before the stent operation but not as good as they were. Spasticity is also somewhat better but again not as good as before pregnancy. Frustratingly my walking and bowel function are worse than before the stent operation. This is a rather mixed picture but I'm afraid pregnancy has very significant effects on the vasculature which may not be desirable after stents are placed. Considering how good I felt after the stent operation it was perhaps inevitable that pregnancy was going to be a tough call. :?
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 » Sat Feb 13, 2010 10:25 am

Once your gorgeous little baby is born I am sure everything will be worth it. After he/she is born maybe you can start chelation therapy or get the drugs that remove iron from the brain (if these are not contradicted with having stents).
I hope the best for you xx
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Postby L » Sat Feb 13, 2010 10:30 am

Hello gibbledygook

Sorry to hear that you are feeling not-so-great but congratulations on your pregnancy! (I'm late but it's the first I'd heard of it, I haven't been paying enough attention..)
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Postby Cece » Sat Feb 13, 2010 1:49 pm

I hope once the baby's born you get back to feeling better. Your body is working so hard!!

Edited to say: your body deliberately slows down digestion during pregnancy to get every last nutrient out for the baby, this results in constipation even in people who don't normally suffer it.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Chocolate/cacao

Postby gibbledygook » Mon Feb 15, 2010 7:00 am

I might add that since my last luteinizing hormone surge/conception point I stopped drinking a daily 3 cafe lattes and switched to pure organic, non-sweetened hot skimmed milk cacao. I found this little snippet on pubmed

Br J Nutr. 2009 Apr;101(7):931-40. Epub 2009 Jan 6.

Cocoa: antioxidant and immunomodulator.
Ramiro-Puig E, Castell M.

Department of Physiology, Faculty of Pharmacy, University of Barcelona, Av. Joan XXIII s/n 08028, Barcelona, Spain.

Cocoa, a product consumed since 600 BC, is now a subject of increasing interest because of its antioxidant properties, which are mainly attributed to the content of flavonoids such as ( - )-epicatechin, catechin and procyanidins. Moreover, recent findings suggest a regulatory effect of cocoa on the immune cells implicated in innate and acquired immunity. Cocoa exerts regulatory activity on the secretion of inflammatory mediators from macrophages and other leucocytes in vitro. In addition, emerging data from in vivo studies support an immunomodulating effect. Long-term cocoa intake in rats affects both intestinal and systemic immune function. Studies in this line suggest that high-dose cocoa intake in young rats favours the T helper 1 (Th1) response and increases intestinal gammadelta T lymphocyte count, whereas the antibody-secreting response decreases. The mechanisms involved in this activity are uncertain; nonetheless, because redox-sensitive pathways control immune cell function, the action of cocoa flavonoids on modulating cell signalling and gene expression deserves investigation.

PMID: 19126261 [PubMed - indexed for MEDLINE]
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And furthermore it looks like cacao is heavy in iron:

Br J Nutr. 2009 Jul;102(2):215-20. Epub 2008 Dec 23.

Iron bioavailability of cocoa powder as determined by the Hb regeneration efficiency method.
Yokoi K, Konomi A, Otagi M.

Department of Human Nutrition, Seitoku University Graduate School, 550 Iwase, Matsudo, Chiba 271-8555, Japan. KatsuhikoY@aol.com

Fe deficiency is a public-health problem worldwide, and effective measures for preventing Fe deficiency are needed. The aim of the present study was to determine the bioavailability of Fe in cocoa using the Hb regeneration efficiency (HRE) method. Thirty-five F344/N male weanling rats were fed a low-Fe diet for 4 weeks to deplete body Fe stores. Then, four groups of seven animals each were repleted for 20 d using a modified AIN-93G diet fortified with ferrous sulphate, ferric citrate or two brands of cocoa powder to provide a total dietary Fe concentration of 20 mg/kg. As a negative control, seven rats were maintained on the low-Fe diet. The HRE were 0.733, 0.350, 0.357 and 0.336 for ferrous sulphate, ferric citrate and the two brands of cocoa powder, respectively. The relative biological values (RBV), defined as the ratio of the sample HRE to that of ferrous sulphate, were 0.478, 0.488 and 0.459 for ferric citrate and the two brands of cocoa powder, respectively. The Fe bioavailability of cocoa was significantly less than that of ferrous sulphate and was similar to that of ferric citrate. The difference in Fe bioavailability between the two brands of cocoa powder was negligible. When the negative control was used to correct the data, estimates of the RBV derived from Hb gain were similar to those derived from the HRE. These results suggest that cocoa is a significant source of moderately bioavailable Fe.
PMID: 19102811 [PubMed - indexed for MEDLINE
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Two days ago I switched back to cafe latte and my shoulder spasms have significantly diminished as has the motor dysfunction in the left leg...This is the second time that I have started and stopped cacao and both times I have noticed feeling worse on cacao. Cacao is well known as a vasodilator, it also reduces blood pressure and has anti-platelet activity. I'm already massively vasodilated and low blood pressured and anti-plateleted from pregnancy and low dose aspirin. I think maybe cacao should be avoided especially in pregnancy! Sniff!
:(
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 » Mon Feb 15, 2010 7:16 am

Hey Alex,
I just wanted to add that Cocoa affects me really badly.
It not only flares up my MS but also my endometriosis.

L x
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Postby gibbledygook » Mon Feb 15, 2010 7:39 am

Wow, I think the immune aspects to cocoa haven't been explored as much as it's purported benefits for the cardio system. Cocoa or cacao seems to have had a not dissimilar effect to the sulforaphane in broccoli sprouts which went hand in hand with a bit of a flare post-stents. Sulforaphane increases t-cell activity. I'm afraid that those of us with a fair bit of disabililty likely have heavy loads of iron and inflammatory markers even with the stent treatment. I'm keeping well away from cocoa and broccoli sprouts from now on!!! Damn!
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 » Mon Feb 15, 2010 11:30 am

do you mean brussel sprouts or sprouted broccoli? Would all brassicas affect you?
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Postby gibbledygook » Thu Mar 18, 2010 2:51 am

Oo, sorry Whyrwehere, I've only just seen your question. I took a broccoli sprout supplement containing large amounts of sulforaphane. I think they mean broccoli shoots not sprouts as in the recently germinated plant which has the most enzymes and health effects, allegedly.

Here is my latest report to Professor Dake. I am now nearly week 25 of my pregnancy and it's been 8.5 months since bilateral stents were placed at Stanford. Unfortunately I have suffered a severe renewal of night spasms and my walking and spasticity are very bad. The renewed onslaught in symptoms corresponds chronologically with plummeting blood pressure readings...

Shortly after my latest excel update I stopped drinking up to 60mg of cacao a day and within days several symptoms which had been flaring up virtually disappeared, most noticeably the shoulder spasms, right hand tingling and the left leg motor dysfunction. I can still detect modest shoulder spasms and left leg motor dysfunction and possibly something in the right hand but the symptoms are much improved. I note that one pubmed abstract concludes that cacao under certain circumstances upregulates interferon gamma and Type 1 T helper cells. It also according to various PubMed abstracts lowers blood pressure and dilates the blood vessels and has anti-platelet activity. I don't need any of that, thanks. I'm back on cafe latte. From week 20 I started having very bad night spasms and akin in severity to before the stent operation. At the same time the left leg sensory deficit has been flaring a bit especially in both feet. So has the facial and torso deficit. I'm beginning to wonder about the correlation between extremely low blood pressure and worse MS symptoms. Cacao lowers one's blood pressure. Here are all my BP readings by the obstetrician: My blood pressure at week 12 was 98 over 58, at week 14 was 96/60, at week 16 was 80/40, at week 18 was 70/33, at week 21 was 70/40 and my latest at week 24 was 84/44. This looks like a period of very, very low blood pressure to me! I suspect such low blood pressure would cause cerebral hypoperfusion or insufficient endothelial shear stress and exacerbate my MS symptoms. I often think of my Chinese herbal practitioner who said I had "blood stasis". With my blood pressure readings I imagine that the blood is not flowing very quickly. I can feel my heart pounding at night as though it were struggling to get any circulation going. Fortunately blood pressure troughs in pregnancy at week 26 and apparently normalizes thereafter. My walking is poor and worse than it was before the stent operation and the spasticity is also much more evident. I just managed circa 500meters and it was a real struggle. The bladder control is unusual in that I need the toilet every time I stand but I don't feel urgency when seated. I expect the growing foetus is really the cause of my problems there. The phosphenes have been around but not much. Since reverting to coffee my bowel is somewhat better. My swallowing malcoordination is worse although much of it is likely psychosomatic. I had a nerve-racking moment in week 22 whilst at a meal I felt a sharp pain in the left stented area. About 10 minutes later I felt a sharp pain in the inner left ear area. I had a cold at the time and it could have been a lymph node being pressed by awkward jaw use. Or something else! I have asked Dr Reidy to book me in for a follow up CT scan of the jugular veins for July in case the vascular changes of pregnancy have done anything to the stents. I have also had trouble with swallowing which has been made worse by a cold. Since Christmas I have had a continuous nose bleed especially affecting the left nostril. In recent days the blood flow from the nosebleed has been particularly liquid and frequent. All in all this is not a good update as I am by and large as bad as or worse than I was before the stent operation.
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 » Thu Mar 18, 2010 3:03 am

You poor woman, I am really very worried for you and your baby. Is your doctor concerned about the low blood pressure?? I wish I could suggest something to help, but I am at a loss...
Are you still on blood thinners? Perhaps that is causing the nose bleed?
I'm praying you get better.
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Postby gibbledygook » Thu Mar 18, 2010 3:34 am

Thank you Whyrwehere!
Apparently such low blood pressure in pregnancy is nothing to worry about and should normalize in a few weeks. The baby is big for its age so I'm not too worried. I am still on low dose aspirin and low molecular weight heparin (a daily injection) and this is to reduce thrombi risk with the stents. Again nose bleeding is normal in pregnancy, apparently!!! What worries me is the walking and night spasms but I'm hoping they will get better soon if my blood pressure goes back up.
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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