Post if CCSVI treatment did NOT work for you

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

Re: Post if CCSVI treatment did NOT work for you

Postby jimmylegs » Sun Aug 12, 2012 2:45 pm

i used to feel sick trying to take 100mg at a time, had to break it up. how much have you taken in a single dose when it made you sick? have you tried breaking up the daily dose, taking it with small amounts of food, anything like that? one other idea is to buy some 'penaten' cream with 18% zinc oxide and rub it into your skin.
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Re: Post if CCSVI treatment did NOT work for you

Postby gibbledygook » Mon Aug 13, 2012 12:41 am

If I take it with food as if I take it on an empty stomach I will actually vomit! The cream may be option...
Last edited by gibbledygook on Mon Aug 13, 2012 6:17 am, edited 1 time in total.
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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Re: Post if CCSVI treatment did NOT work for you

Postby jimmylegs » Mon Aug 13, 2012 5:49 am

i hope so, esp if it can get you some improvement. how much zinc are you currently getting daily, and what form? do you have a list of zinc-rich foods? from this list
http://www.whfoods.com/genpage.php?tnam ... t&dbid=115
i'd go with the high amounts, bioavailable animal source zinc foods first....
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Re: Post if CCSVI treatment did NOT work for you

Postby gibbledygook » Mon Aug 13, 2012 6:16 am

I eat the occasional nut! Er, that's about it for zinc. Mmm. There's too many things to take and none of them work anyway.
The back of my head, lower down aches like billyo since seeing Professsor Sclafani. I think I may go back to New York for another ultrasound as nobody in the UK knows what they're doing AND I've just got another companion voucher from British Airways. I still believe that the venous pathology and the ventricles are a big problem in MS. I reckon I may have occlusion of the azygous or even the renal stent. Something bad happened immediately after the ballooning, I am sure of it.
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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Re: Post if CCSVI treatment did NOT work for you

Postby CureOrBust » Tue Aug 14, 2012 3:23 am

gibbledygook wrote:Just clutchIng at straws obviously! I think I improved a good deal after stopping enoxaparin after my recent pregnancies but that might just be the vasculature returning to normal after pregnancy. I can't quite believe that I have restenosed so soon after treatment (within 24hours). I have had such odd up and down symptoms in the last 3 weeks...
not everyone improves straight after the procedures. You read stories of people who start improving 3 months after a treatment. Cherish the "UPS"

gibbledygook wrote:... with a near constant ache where the skull meets the spine that I have no idea what is going on. I will need rescanning if the symptoms remain like this.
Could that ache simply be the damage from the ballooning? I know for a few weeks after my treatments I have found my neck has some tenderness. And you have stents, so I would guess that could add another factor of irritation.

If it is easy, cheap and feasible (and the guys were correctly trained), I would be scanned as often as I could.

Not wanting to rub it in, but no one told me Zinc supplements would make me sick, and I am sure I once took a dose 2-3 time yours and did not notice anything. Maybe its a "man" thing.
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Re: Post if CCSVI treatment did NOT work for you

Postby jimmylegs » Tue Aug 14, 2012 4:30 am

oh no! any way you can work in some regular dietary zinc?! also, might be a good idea get that 18% zinc oxide cream going, asap. my doc didn't warn me about nausea either, i think it may actually depend on your underlying zinc status??? but i'm just thinking out loud with that one, i have no idea. it doesn't make me sick at 50mg per dose, but i have not tried 100mg in a long time.
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Re: Post if CCSVI treatment did NOT work for you

Postby gibbledygook » Wed Aug 15, 2012 1:59 am

Despite the deterioration in my leg and foot since the surgery I would like to note that one striking thing which HAS definitely improved is my appetite! I used to feel totally apathetic about eating, especially after a coffee at breakfast but now I am eating proper manly adult portions! I may even return to a more normal weight as I look pretty underweight and have done for the last 7 years or so despite 2 pregnancies. After each pregnancy my appetite dramatically dropped as would my weight but now I think I stand a chance of gaining weight. Weird.
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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Re: Post if CCSVI treatment did NOT work for you

Postby gibbledygook » Wed Aug 15, 2012 2:03 am

Wow, just read the cerebrospinal fluid entry in Wikepedia! The veins and cerebrospinal fluid are intimately linked.
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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Re: Post if CCSVI treatment did NOT work for you

Postby gibbledygook » Wed Aug 15, 2012 2:11 am

Int J Clin Pract. 2009 Mar;63(3):457-61.
Hyponatraemia in patients with normal pressure hydrocephalus.
Chou CY, Liu JH, Wang SM, Yang YF, Lin HH, Liu YL, Huang CC.
Source
Division of Nephrology, Department of Internal Medicine, China Medical University Hospital, North District, Taichung, Taiwan.
Abstract
BACKGROUND:
In clinical practice, hyponatraemia was frequently found in patients with hydrocephalus. We conducted this study to determine the prevalence and risk factors for hyponatraemia in patients with normal pressure hydrocephalus (NPH).
METHODS:
We retrospectively reviewed all patients with NPH who were admitted to China Medical University Hospital between 1998 and 2006. Hyponatraemia was defined as a plasma sodium concentration < 135 mEq/l on admission. Possible risk factors between patients with and without hyponatraemia were analysed using Student's t-test or chi2 test. The association between hyponatraemia and possible factors was analysed using multivariate logistic regression. The odds ratio was calculated to determine the effect of possible risk factors.
RESULTS:
A total of 146 patients (84 men and 62 women) who had NPH with a mean age of 66.1 +/- 15.9 years old were reviewed and 33 (22.6%) patients were found having hyponatraemia. Patients who developed hyponatraemia had a significantly higher prevalence of hypertension, use of nasogastric tube (NG), bed-ridden status and fever. In multivariate logistic regression, the presence of hypertension and the use of NG were two important risk factors for hyponatraemia. The odds ratio (95% CI) for hypertension and NG were 2.604 (95% CI: 1.136-5.967, p = 0.024) and 7.179 (95% CI: 2.3-22.409, p = 0.001) respectively.
CONCLUSION:
Hyponatraemia is not uncommon in patients with NPH. Physicians should be aware of this complication and obtain necessary laboratory examination for early detection of hyponatraemia.

http://www.ncbi.nlm.nih.gov/pubmed/19222630

In normal pressure hydrocephalus patients have too little sodium. Patients with MS have sodium in their brains...Sodium seems to be quite important for cerebrospinal disease.

South Med J. 1991 Feb;84(2):279-80.
Cerebrospinal fluid losses through ventricular catheters leading to hyponatremia in two children.
Tobias JD.
Source
Department of Anesthesiology/Critical Care Medicine, Johns Hopkins Hospital, Baltimore, MD.
Abstract
I have presented two cases of patients with hyponatremia due to excessive cerebrospinal fluid losses from ventricular drains. The possibility of such losses exists whether the drain is used to treat hydrocephalus or to monitor intracranial pressure. I find normal saline (sodium concentration = 154 mEq/L) to be an appropriate fluid to replace ongoing losses of cerebrospinal fluid from a ventricular drain and currently start such replacement therapy (mL for mL) when the drain is placed.
PMID: 1990472 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/1990472

When the brain's ventricles are drained mechanically for hydrocephalus, patients lose a lot of sodium which the above author replaces with salty water into the CSF.

Is the CSF being displaced into the MS brain and leaving salt in there because it isn't draining properly into the dural sinuses?

Neurol Neurochir Pol. 1980 Jul-Aug;14(4):411-7.
[Studies on the cerebrospinal fluid pressure changes in patients treated for hydrocephalus by the so-called ventricular filling test. Preliminary report].
[Article in Polish]
Muszyński A, Koźniewska H, Moszyński K, Stocka-Muszyńska Z.
Abstract
The curves of cerebrospinal fluid pressure (CFP) in the lateral cerebral ventricle during the so called ventricular filling-up test are presented in 6 patients with high-pressure and medium-pressure hydrocephalus as compared with CFP curves obtained in 2 patients with low-pressure hydrocephalus. The method of filling-up test (infusion test) is described. In this method portions of normal saline 2 ml each are administered rapidly into a lateral ventricle every 30 seconds. The obtained results demonstrated a difference in the shape of the CFP curves in patients with low-pressure open hydrocephalus as compared with patients with closed hydrocephalus. This could help in qualifying patients with hydrocephalus for treatment with ventriculo-atrial shunt.
PMID: 7412996 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/7412996

Saline administration affects (i think) the cerebrospinal pressure differently depending on whether you have open hydrocephalus or closed hydrocephalus.

Ann Neurol. 2012 Feb;71(2):186-94. doi: 10.1002/ana.22665.
A channelopathy contributes to cerebellar dysfunction in a model of multiple sclerosis.
Shields SD, Cheng X, Gasser A, Saab CY, Tyrrell L, Eastman EM, Iwata M, Zwinger PJ, Black JA, Dib-Hajj SD, Waxman SG.
Source
Department of Neurology, Yale University School of Medicine, New Haven, CT, USA.
Abstract
OBJECTIVE:
Cerebellar dysfunction in multiple sclerosis (MS) contributes significantly to disability, is relatively refractory to symptomatic therapy, and often progresses despite treatment with disease-modifying agents. We previously observed that sodium channel Nav1.8, whose expression is normally restricted to the peripheral nervous system, is present in cerebellar Purkinje neurons in a mouse model of MS (experimental autoimmune encephalomyelitis [EAE]) and in humans with MS. Here, we tested the hypothesis that upregulation of Nav1.8 in cerebellum in MS and EAE has functional consequences contributing to symptom burden.
METHODS:
Electrophysiology and behavioral assessment were performed in a new transgenic mouse model overexpressing Nav1.8 in Purkinje neurons. We also measured EAE symptom progression in mice lacking Nav1.8 compared to wild-type littermates. Finally, we administered the Nav1.8-selective blocker A803467 in the context of previously established EAE to determine reversibility of MS-like deficits.
RESULTS:
We report that, in the context of an otherwise healthy nervous system, ectopic expression of Nav1.8 in Purkinje neurons alters their electrophysiological properties, and disrupts coordinated motor behaviors. Additionally, we show that Nav1.8 expression contributes to symptom development in EAE. Finally, we demonstrate that abnormal patterns of Purkinje neuron firing and MS-like deficits in EAE can be partially reversed by pharmacotherapy using a Nav1.8-selective blocker.
INTERPRETATION:
Our results add to the evidence that a channelopathy contributes to cerebellar dysfunction in MS. Our data suggest that Nav1.8-specific blockers, when available for humans, merit study in MS.
Copyright © 2012 American Neurological Association.

http://www.ncbi.nlm.nih.gov/pubmed/22367990
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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Re: Post if CCSVI treatment did NOT work for you

Postby CureOrBust » Wed Aug 15, 2012 5:40 am

gibbledygook wrote:Despite the deterioration in my leg and foot since the surgery I would like to note that one striking thing which HAS definitely improved is my appetite! I used to feel totally apathetic about eating, especially after a coffee at breakfast but now I am eating proper manly adult portions! .... After each pregnancy my appetite dramatically dropped as would my weight but now I think I stand a chance of gaining weight. Weird.
I have noticed I do not "enjoy" food as much as I used to. I have a sneaking suspicion that I have lost a small amount of my taste sensation, due to my MS :?

Maybe your appetite returned because you have regained some taste sensation back.
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Re: Post if CCSVI treatment did NOT work for you

Postby Cece » Wed Aug 15, 2012 7:58 am

I used to get that back of the skull headache and I always took it as a warning sign because it seemed to go along with me doing more poorly in general. When I had the procedure done, I had that headache the next day, but then it went away. It's been suggested that the back of the skull headache could be due to reflux in the emissary veins, if you have enlargened emissary veins, but that's only a theory. While the vein is being ballooned, the balloon blocks the jugular, and there may be that short time of massive reflux until the balloon is deflated.

Really interesting posts about saline and cerebrospinal fluid.

Hope that either the symptoms go away and everything stabilizes or that you're able to get back for a scan.
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Re: Post if CCSVI treatment did NOT work for you

Postby jimmylegs » Wed Aug 15, 2012 3:21 pm

gibbs, the appetite issues you describe line up exactly with what you could expect to happen to your zinc status during and after pregnancy. cure, what's your zinc status? that has direct effect on smell and taste sense too.
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Re: Post if CCSVI treatment did NOT work for you

Postby gibbledygook » Thu Aug 16, 2012 2:20 am

Jimmy, I think it's the nutcracker syndrome correction. I'm sure I've read somewhere that nutcracker patients are generally underweight.
Vascular. 2012 Jun 25. [Epub ahead of print]
Nutcracker syndrome: symptoms of syncope and hypotension improved following endovascular stenting.
Daily R, Matteo J, Loper T, Northup M.
Source
University of Florida, Shands Jacksonville, Jacksonville, FL 32209, USA.
Abstract
'Nutcracker syndrome' encompasses classical symptoms of hematuria and flank pain resulting from the compression of the left renal vein between the aorta and the superior mesenteric artery. In patients with unexplained left-sided hematuria, flank pain or non-specific abdominal pain, careful interrogation of diagnostic abdominal imaging should be performed to exclude the possibility of external compression on the left renal vein. The patient discussed in this case report is a 19-year-old woman with unilateral hematuria. Her symptoms started 13 months prior with nausea, lower abdominal pain and weight loss. Six months after the nausea began, she started having syncope, sometimes multiple episodes in one day. Syncope is one of the more rarely reported symptoms associated with nutcracker syndrome. As more cases are reported, endovascular repair is becoming an alternative treatment for nutcracker syndrome. The patient was treated with stenting of her left renal vein. At the three-week follow-up, she reported near resolution of nausea and abdominal pain. She had gained four pounds, no longer had gross hematuria and had had no episodes of syncope and her blood pressure had normalized. Endovascular specialists should be aware of the variety of symptoms that can occur with nutcracker syndrome, including syncope. The severity of these symptoms should guide the recommendation for intervention.

http://www.ncbi.nlm.nih.gov/pubmed/22734085

from wiki:
Signs and symptoms

NCS is associated with hematuria (which can lead to anemia)[3] and abdominal pain (classically left flank pain).[4]
Since the left gonad drains via the left renal vein it can also result in left testicular pain[5] in men or left lower quadrant pain in women. Nausea and vomiting can result due to compression of the splanchnic veins.[5] An unusual manifestation of NCS includes varicocele formation and varicose veins in the lower limbs.[6] Another clinical study has shown that that nutcracker syndrome is a frequent finding in varicocele-affected patients and possibly, nutcracker syndrome should be routinely excluded as a possible cause of varicocele.[7]
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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Re: Post if CCSVI treatment did NOT work for you

Postby gibbledygook » Thu Oct 04, 2012 6:59 am

I just had the azygous and jugular veins re examined by Dr Sclafani and there was no restenosis observed although the flow in the azygous was very poor so he ballooned this vein. This has not had any effect on the worse legs. Still, it was good to know that all the veins were patent. I guess the deterioration after the renal stenting and azygous and jugular ballooning was due to the shock to the damaged nerves..
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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Re: Post if CCSVI treatment did NOT work for you

Postby gibbledygook » Sat Oct 06, 2012 3:57 am

It has been two days since my treatment of ballooning of the azygous vein and I am pleased to report that there has been a modest improvement in spasticity and strength in the right leg. However I am still worse than before the operation in July.
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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