A CCSVI Patient Log: All About Steve

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

Postby Loobie » Sat Oct 03, 2009 3:05 am

catfreak wrote:we can just say we did a loobie!!!!!


That's my wife's line.
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Postby mormiles » Mon Oct 05, 2009 9:11 am

Yippeeee! We just got back to my office from seeing the urologist and getting Steve de-catheterized. This is a wonderful freedom for Steve and for me too (no more cleaning those bags inside and out with bleach water).

Steve hasn't needed any pain relievers since Friday night, and he has continued to stay awake almost all day instead of sleeping most of the day. For a couple of days his vision improved in that he reported that things were brighter instead of darkened---I hadn't realized before now that his entire field of vision was darkened. In the past few days, his walking and balance have slid back to where they were before the procedure, and so has the vision. However, on the way back to my office just now, Steve reported that things had brightened up again and his head felt very clear. I thought his walking was better as we came in, but he said it was just because he was concentrating on it really hard.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby mrhodes40 » Mon Oct 05, 2009 9:46 am

and he has continued to stay awake almost all day instead of sleeping most of the day


Joyce how great! Just to clarify, was this excessive sleeping only since surgery (like tired after surgery) or are you saying he slept all the time before stents and this has changed significantly now?

an woohoo on the cath bag freedom! Yeah! How did that happen so others can read about that, because he was dependent on the bag for a while and had to keep the cath, right? How did he get so he can go without the catheter? What did they do?
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby cheerleader » Mon Oct 05, 2009 10:24 am

So glad to hear from you and Steve, dear Joyce!
Glad the catheter is history. As we've learned with Jeff and others, things will come and go the first few weeks, and the brain adjusts to new fluid levels. Exciting to hear that Steve's eyesight and walking may eventually be helped by all of this!

The head clear/awake feeling should stay...but other stuff will wax and wane. Don't judge everyday, the improvements will be slow and steady, three steps ahead, two back.
best,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Opposite Progression of Day

Postby mormiles » Mon Oct 05, 2009 1:20 pm

Marie, Before the surgery, Steve was very fatigued and slept alot during the day, even away from home. He's been staying awake like this since the surgery.

Steve was catheterized during the surgery, decatheterized while he was in recovery, urinated well for about an hour to an hour-and-a-half, then his bladder just clammed-up. This is the same thing that happened 3-1/2 years ago when he had a minor surgery under general anesthesia. There was no test to see if everything was working okay, it was just assumed by virtue of time passed since the anesthesia. So far, he's passing urine just fine since the decatheterization this morning.

This afternoon, Steve verified that he truly is walking better, and he's covered more ground today (even uphill) than anytime since the surgery.

Joan, That waxing and waning thing is easy to accept, but not always fun. My thanks to you and all the others for the good advice and the caring.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby Sharon » Mon Oct 05, 2009 1:21 pm

Joyce - Nice to hear such good news. Getting rid of the cath bag has got to be a milestone. The energy level could down a bit depending on how Steve reacts to the Coumadin. Steve's eyesight improvement - how cool is that?
Keep us updated

BTW - when you get time, be sure to go over to the "Tracking" thread and fill out the template http://www.thisisms.com/modules.php?nam ... 0030#70030

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Back in the groove

Postby mormiles » Wed Oct 07, 2009 8:31 am

No more blood in the urine. His internist whined about giving aftercare and acted completely surprised and bumfuzzled despite the fact that I sent her a letter about all this a couple of months ago. Blood was drawn on Monday for INR checking, and now she wants a 2nd draw before calling any shots.

The big news is that Steve is back on his usual schedule, doing his normal activities. This morning he drove for the first time since the surgery (it was a little better than usual). He went to Mass and stayed to pray the Rosary. From there he went on to the gym for a very light workout. In the afternoon, he will go to the bank and to the lab for another blood draw. His walking quality is a little down yesterday and today from Monday, but his vision is unobscured, his head is clear, and he's getting a little energy. I'll admit that I've enlisted the help of St. Michael to watch over him.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby Jamie » Wed Oct 07, 2009 8:56 am

For you guys more than most I hope wonderful things.
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Postby mrhodes40 » Wed Oct 07, 2009 12:44 pm

Ditto Joyce, time for a good bounce. :D
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Dark Days (for me anyway)

Postby mormiles » Mon Oct 12, 2009 8:34 am

Since the last update, Steve had a pulse of Tindamax. It was supposed to be a 5-day pulse, but I pulled the plug at 3-1/2 days. He was increasingly coming unwound when walking, spiraling out of control after just several steps. Basically, for the past several days, all his improvements have evaporated except for two: mood and staying awake most of the day.

I keep asking myself "What does this tell us?" Does it mean that he's having a more significant bacterial die-off reaction because more oxygen is in the mix at the killing sites? Does it mean that the inflammation caused by the surgery amassed alot of Zombified infected white blood cells to the stent and ballooning sites, and the Tindamax is clobbering the hell out of them? Are his chronic pathogens losing their scrumptious feast of iron and are now weaker than they were? Is he simply in the midst of a dip that he would have gone through with or without the Tindamax pulse? Those of you who are not on or have not been on the Vanderbilt Protocol may discount the bacterial die-off effect going on here, but some of you understand this. I suppose these questions are unanswerable...too many factors at play, but it will be interesting to see how Steve responds to the next pulse in several weeks.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby radeck » Mon Oct 12, 2009 9:42 am

HI Joyce, I'm sorry to hear that there are some surprises lurking for Steve and you post procedure. What you describe, the possibility of increased die-off of pathogens in the brain is interesting. This is the picture I have at this point of what's going on: the blockages and associated lack of blood flow make it easier for bacteria, that are widespread in the general population (like Cpn) to make themselves a cosy home in the endothelium of vessels in the brain which contributes to making it vulnerable. Is Steve still on the ABx (i.e. did Dr. Dake think this was OK despite the Coumadin)? If so, which ones? I imagine the increased blood flow in his brain doesn't only allow the IS system better access to pathogens there, but would also allow the ABx better access...

Thanks for the update. I hope that the symptoms Steve is currently suffering from are a positive sign.
Last edited by radeck on Fri Dec 18, 2009 9:03 pm, edited 1 time in total.
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Postby LR1234 » Mon Oct 12, 2009 11:14 am

Gibbledygook had a similar reaction to abx recently (see her update)
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Postby radeck » Mon Oct 12, 2009 11:29 am

LR1234 wrote:Gibbledygook had a similar reaction to abx recently (see her update)


The way I understand it is that they used different kinds of antibiotics though. I believe that Gibbledygook was on Trimethoprim, whereas Steve was (I guess) on Cpn-directed antibiotics (Doxycycline and Azithromycin?), and had a pulse of Tindamax.
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Postby cheerleader » Mon Oct 12, 2009 11:29 am

Joyce...
Did you get the OK for antibiotics and coumadin from your doctor or Dr. Dake?? These are contraindicated because they can greatly affect the metabolism of the coumadin and raise the INR too high. Please call your doctor or Dr. Dake's staff.

It's essential to follow up on aftercare to avoid complications....
xo,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby LR1234 » Mon Oct 12, 2009 12:11 pm

Ok Radeck, I didn't realise Steve was on the abx protocol as well (plus I got my abx mixed up!!)

Then its probably all too much for the system to cope with at one time is my guess, Steve has just had proper surgery and that with the coudamin is going tax the body.
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