Gibbledygook's stents

Tell us what you are using to treat your MS-- and how you are doing.

Re: Gibbledygook's stents

Postby LR1234 » Sat Jul 28, 2012 8:28 am

Hey GG,
I always follow your charts and progress with great interest (the ups and the downs).
I look forward to reading your next evaluation.
I wish you the best, speak soon

L x
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Re: Gibbledygook's stents

Postby CureOrBust » Sat Jul 28, 2012 7:21 pm

gibbledygook wrote: But my treatment was pretty hardcore
Hardcore, Thorough. tomAtoe, toMatoe. 8)

gibbledygook wrote: I'm going to leave my chart updates for a month or so to see if the symptoms settle down as if all the ballooning and stenting remain patent then the blood flow will have altered dramatically.
I believe if its not too much trouble, you should keep your charts going, as they will serve YOU to remember how things really went in a measurable way. By starting them, you obviously wished to keep tract of your progress in a more scientific manner for yourself, so this seems like the exact example of when you would want some impartial reference. Unless of course Dr S advises for rest and recovery. I hope his treatment does you wonders! :wink:
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Re: Gibbledygook's stents

Postby gibbledygook » Mon Jul 30, 2012 5:24 am

Hey cureo, You are right, of course! I shall update my chart to show the immediate deterioration. Today, finally, my foot and walking are quite a bit better but I think it is right to show the immediate deterioration. Chart coming shortly.
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: Gibbledygook's stents

Postby gibbledygook » Mon Jul 30, 2012 9:49 am

right, below is my latest chart link after my fairly major surgery which involved left renal stenting, ballooning of the azygous and of both jugulars. Here are some of the notes from Professor Sclafani: "The azygous vein is only part of this patient's thoracoabdominal plethora. In addition to the azygous disease ... there is also a hypoplastic ascending lumbar vein draining the lumbar spine. This vein generally drains into the renal vein. The vein shows numerous areas where there are attenuated lumbar branches. The fifth panel shows evidence of a Nutcracker phenomenon with reflux into the ovarian vein and the ascending lumbar vein. Thus cerebrospinal drainage is made worse by the outflow obstruction of the renal vein's 550 ml/min flow seeking alternate pathways to the heart."

The days following the surgery were pretty tough as my bad leg became very stiff and walking was very awkward. I also came down with an unpleasant stomach infection which didn't help although my temperature remained low. The percocet (oxycodone/paracetamol mix) also had fairly major neurological effects.

My walking today has actually improved significantly, which is encouraging. I am encouraged by the considerably improved foot flexibility today so fingers crossed, I will continue to improve. I am also sweating a very great deal. This I take to be a very good sign. The left renal stenting and azygous ballooning have a pretty good probability of the vein remaining patent so the flow should remain considerably improved there, if not elsewhere. So fingers crossed the deteriorations, especically in night spasms (grrr) and walking will be short term.

http://www.scribd.com/doc/101548277
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: Gibbledygook's stents

Postby gibbledygook » Wed Sep 05, 2012 5:36 am

It's been approximately a month on dabigatran or enoxaparin which I stopped a week ago. Since then my bad right leg and foot motor function has improved although only relatively modestly. The night spasms have improved as has my ability to void the bladder.

I have just had the jugular veins and left renal veins scanned and there is no sign of thrombosis although the left jugular still has quite poor flow owing to the transverse process compression of the stent.

I have tried three NUCCA adjustments but they have had no noticeable effect.

Here is my latest chart.

http://www.scribd.com/doc/104990753
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: Gibbledygook's stents

Postby gibbledygook » Fri Sep 28, 2012 9:44 am

http://www.scribd.com/doc/107603493

It's been 2 months since the ballooning of the azygous and jugular veins and the stenting of the left renal vein. The left renal and jugular veins are patent although the left jugular is compressed in the stented area by bony tissue either the transverse or styloid process. This is reducing flow through the stent but there is flow.
My walking remains much poorer than before the operation and both feet feel a lot number and spongier and the right leg is a lot stiffer. My bowel function is much improved and I have had to reduce the number of magnesium aspartate pills from 6 per day to 2 per day. I am sweating a great deal more and I have a much better appetite. My movement induced phosphenes have calmed down a bit since last month. The night spasms have also calmed down a bit since last month. The bladder control has improved a bit since last month and I can void better (using manipulation naturally). I am still getting quite a lot of pain at the lower back of my head near to the spine. This started after the operation. However it is generally milder. I have also attended a NUCCA therapist for 5 adjustments, which have had a marginal effect and have not been worth the money. Still at least they haven't made me worse!
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: Gibbledygook's stents

Postby gibbledygook » Mon Oct 29, 2012 2:59 am

http://www.scribd.com/doc/111432539

I had 2 brief days of improved spasticity after my reballooning of the azygous in mid September but alas the improvements disappeared after my avonex injection and I am now struggling to walk, I have bad night spasms and the bladder control seems worse. I am going for a course of 3,000mg of methylprednisone over the course of 3 days next week. I have the same increased movement induced phosphenes affecting the eyesight as last month.

I'm back on minocycline and off the beta interferon since the renewed deterioration occurred immediately after administration of avonex and I am now wary of it. However I may go back on it after discussing with the neurologists tomorrow. It seems like both the CCSVI operation and the Avonex triggered relapses or deteriorations in walking.
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: Gibbledygook's stents

Postby Shayk » Tue Oct 30, 2012 7:48 am

I'm sorry you're having such a rough go of it. Hopefully your discussions with the neuros included info that interferons may worsen spasticity. Here's a link to dated (2006) info about MS from the Cleveland Clinic which notes:

All interferon preparations can worsen spasticity, depression, and headaches.

Wishing you the best.

Sharon
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Re: Gibbledygook's stents

Postby gibbledygook » Tue Oct 30, 2012 9:27 am

ho hum, typically, Sharon, no mention was made of the research showing interferons can make one's spasticity worse. I'm taking 2,500 mg of methylprednsilone orally over 5 days and will see how I am after this. The neurologist thought that I had developed a thoracic spinal lesion with the post-CCSVI operation deterioration.
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: Gibbledygook's stents

Postby gibbledygook » Wed Nov 07, 2012 4:16 am

I have had MASSIVE changes after 5 days of 500mg of methylprednisolone in the legs. The steroids have had the most AMAZING effects on my bad legs this time around. I have never experienced so much change from steroids. The effects have not been all positive but extraordinary with outstanding tingling and spasms alternating with vast volumes or urine and sweating and then appalling constipation and hugely reduced spasticity and enhanced flexibility of the feet and knee...I have no idea what is going on but the steroids have certainly changed things MASSIVELY!!!! I am going to try to pulse high dose steroids every 6 months or so for the next year to 2 years to get that inflammation down.
Very impressed. 8O

J Neurol Sci. 2005 Jun 15;233(1-2):73-81.
Steroids and brain atrophy in multiple sclerosis.
Zivadinov R.
Source
Department of Neurology, SUNY-University at Buffalo School of Medicine and Biomedical, Sciences, Buffalo, NY, USA. rzivadinov@thejni.org
Abstract
In this review, we focus on different pathogenetic mechanisms of corticosteroids that induce short- and long-term brain volume fluctuations in a variety of systemic conditions and disorders, as well as on corticosteroid-induced immunomodulatory, immunosuppressive and anti-inflammatory mechanisms that contribute to the slowdown of brain atrophy progression in patients with multiple sclerosis (MS). It appears that chronic low-dose treatment with corticosteroids may contribute to irreversible loss of brain tissue in a variety of autoimmune diseases. This side effect of steroid therapy is probably mediated by steroid-induced protein catabolism mechanism. Evidence is mounting that high-dose corticosteroids may induce reversible short-term brain volume changes due to loss of intracellular water and reduction of abnormal vascular permeability, without there having been axonal loss. Other apoptotic and selective inhibiting mechanisms have been proposed to explain the nature of corticosteroid-induced brain volume fluctuations. It has been shown that chronic use of high dose intravenous methylprednisolone (IVMP) in patients with MS may limit brain atrophy progression over the long-term via different immunological mechanisms, including downregulation of adhesion molecule expression on endothelial cells, decreased cytokine and matrix metalloproteinase secretion, decreased autoreactive T-cell-mediated inflammation and T-cell apoptosis induction, blood-brain barrier closure, demyelination inhibition and, possibly, remyelination promotion. Studies in nonhuman primates have confirmed that short-term brain volume fluctuations may be induced by corticosteroid treatment, but that they are inconsistent, potentially reversible and probably dependent upon individual susceptibility to the effects of corticosteroids. Further longitudinal studies are needed to elucidate pathogenetic mechanisms contributing to brain volume fluctuations in autoimmune diseases and multiple sclerosis.
PMID: 15882880 [PubMed - indexed for MEDLINE]
http://www.ncbi.nlm.nih.gov/pubmed/15882880
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: Gibbledygook's stents

Postby CureOrBust » Wed Nov 07, 2012 4:46 am

good to hear. :-D :-D :-D
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Re: Gibbledygook's stents

Postby gibbledygook » Thu Nov 22, 2012 10:06 am

This is my latest chart post steroids which have calmed down the spasticity and poor walking somewhat but it is still quite up and down. Today I have added anatabine into the mix which is now beta interferon 1a, anatabine, several CCSVI operations and a blend of the usual suspect vitamins!
http://www.scribd.com/doc/114139676/Post-steroids-and-pre-anatabine
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: Gibbledygook's stents

Postby gibbledygook » Fri Dec 14, 2012 5:10 am

http://www.scribd.com/doc/116812544

Wow, have I had a rollercoaster since July and my 3rd and likely final CCSVI treatment (though maybe in a another decade!). I had major deteriorations within 24 hours of my comprehensive ballooning of the jugulars, azygous and left renal stenting. Eventually at the end of October I went to have steroids orally over 5 days and these have been the most effective steroids that I have ever experienced. They were amazing! except they gave me a hideous gastrointestinal effects with terrible constipation. This was no doubt exacerbated by the minocycline which I had started about a week previously.

At any rate since stopping the steroids my legs have been a bit up and down especially down after taking anatabine for 4 or 5 days but now is much better than after the CCSVI operation. Interestingly I have resumed cacao for my morning drink and unlike on previous attempts at drinking high dose zero sugar cacao I have enjoyed increased flexibility afterwards. In the past drinking cacao made my leg worse especially noticeably when I was pregnant which made my walking much worse within days of conception. This is a real turnaround and change from before. I don't know how to account for this change. I know that this sort of chocolate has significant effects on the vasculature and dilates the blood vessels and has anti platelet activity...but cacao also has effects on inflammatory mediators. At any rate cacao is curiously beneficial at present.

I am currently on 2nd day of a pulse of minocycline which I have decided to pulse every month or so for 7 days. This is because of the fantastic data on pub med on minocycline and in spite of the poor recent trial results. The trial participants seemed to not adhere to their medication at all well so I think the data is unlikely to be reliable. And I have also taken minocycline/doxicycline for over 3 years before and suffered no ill effects except gastrointestinally. I also noticed immediate benefits from this tetracycline antibiotic before so I suspect that the broader research on pub med is a better picture of its efficacy. It looks very promising especially for reperfusion injury which is precisely what I think occurred during and after my most recent CCSVI operation. It also calms down the microglia which in turn reduces T cell activation in vivo.
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: Gibbledygook's stents

Postby LR1234 » Mon Dec 17, 2012 11:34 am

Thanks for keeping us updated Alex, good to hear from you xx
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Re: Gibbledygook's stents

Postby gibbledygook » Mon Mar 04, 2013 7:27 am

I have updated the charts to show that I have stabilized in a worse state since the last angioplasty. I have had to take tizanidine 2mg for the night spasms in order to get to sleep and I am now wearing an orthotic to help with the foot drop. I am now doing intensive physiotherapy.

Unfortunately I have a new computer and the switch to the new excel and word is making my chart rather worse for wear.

http://www.scribd.com/doc/128377233/March-2013

One interesting development is an improvement in bladder control. I now quite frequently am able to void quite a bit naturally without pressing into the bladder area with my hands. This is encouraging in what is an otherwise fairly depressing reaction to angioplasty.

The minocycline is hard to be on as it causes severe constipation but I really think that it helps.

I have so far not tried anatabine again as I'm too nervous of blocking tumour necrosis factor alpha. However it is interesting that there was a study on swedes who chewed baccy who showed a lower incidence of MS than those Swedes who smoked baccy or those who consumed no baccy products...Maybe when I get through Emily's christening, I'll give the anatabine another shot as I know it is a powerful anti inflammatory.
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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