CCSVI patients' log

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

Postby gibbledygook » Sat Aug 08, 2009 7:34 am

Here's my latest email to the Prof:

I have finally made it to level 2.0 on the INR front. I am to continue taking 10mg warfarin.

I have rather forgotten to update you on the pain in my shoulders which is still quite persistent especially if I play the piano. I guess the pain is only about 1.5 or so intermittently but it’s still there. I also very occasionally have pain around the head but this is short and sharp.

My MS symptoms have been relatively stable. I have suffered a few night spasms but these have been mild, needed no medication and have occurred after consumption of alcohol which is often how they have appeared in the past. My bladder has been generally the same as previously reported as is the right leg motor function and bowel and left leg sensory deficit. Something which I haven’t previously noted is that I think that the spasticity which wracked the right hand side of my body at the lightest touch when lying down is much improved; the torso and right arm no longer seem to go rigid or at least not nearly as rigid as before. I seem to be able to control the rigidity or spasticity in my right leg as well. Additionally a tremor that would shoot through my left shoulder is much milder. The weather recently has been very humid and I dare say that this is still affecting my symptoms although I don’t really notice the humidity so much. I have been walking much more quickly almost at a normal pace whenever out. I expect that this doesn’t help in my quest to walk a greater length than my previous MS record of 1.1km but it certainly makes me feel less disabled.


A couple of weeks ago I visited my NHS neurologist who remarked that the last 4 relapses haven't left much of a permanent mark. I think he was a bit surprised about that.
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 Sharon » Sat Aug 08, 2009 7:54 am

Gibbs - so glad you posted with an update --I have been thinking about you.

The shoulder thing - kind of irritating isn't it? Dake is thinking the smaller
stents that he is now using might help to alleviate the pain and spasm. This past week my shoulder has been much better and that is including the time flying to and from San Jose. I still have some range of motion to recover and some weakness --- I think it is just going to take a little more time.

Very good news about your muscle spasticity disappearing. Maybe the tone in your muscles is starting to normalize.

Are you taking any of your herbs and supplements? I stopped everything; now that I am off the blood thinners, I am starting to add some things back into my regimen. I decided to go back on LDN at a reduced dose also.

Good to hear from you
Sharon
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Postby gibbledygook » Sat Aug 08, 2009 8:52 am

Hi Sharon,

Yes, I'm off the herbs for the time being but I'm still takig vit d, zinc, calcium/magnesium and silicon with the occasional vit b lobbed in! When I'm off the warfarin I'll gradually reintroduce salvia in small amounts just to keep the blood thin.
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 » Tue Aug 11, 2009 6:16 am

I have a bit of a disappointing experience from last night to report: a return of bad spasms which required medication to get to sleep much later than wanted. I also noticed much milder spasms on Sunday night. I hope this isn't a trend reversal. I guess my stented veins could have got quite blocked by coagulation so I maybe need a balloon treatment or something else is going on...however I only just last week got the INR up to right rate so I could easily have got a blocked vein. 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 MaggieMae » Tue Aug 11, 2009 8:01 am

Gibbledygook,
I hope this is only a temporary set back. My husband also suffers from these spasms and he would have the surgery just to gain relief from the spasms. Thank you for your honest posts because we need to hear it all- good and bad. Keep us informed.
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Postby gibbledygook » Thu Aug 13, 2009 2:41 am

Professor Dake, rather than the UK doctor, has reviewed my follow-up scans of 7.5 weeks and concluded that there was no narrowing of the stents or clots. So I'm not sure what has reinvigorated the night spasms but they are back and with a vengeance. Last night I barely slept from night spasms racking both legs and had to take 3 tizanidine pills. I also had spasms on Tuesday night which required medication. In all I've had three bad spasm nights which has coincided with a weaker bladder function and worse walking and a flare-up of an old sensory deficit in my hand. Not much joy.
:(
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 Ernst » Thu Aug 13, 2009 3:03 am

Very sad to hear.. be strong there. I quess there is reason for everything, so you are interesting case. Why spasms came, even your stents are ok? There must be more in picture.. but what? You should be studied/monitored more get the answers. Hopefully this is just temporarily, really hope so.
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby gibbledygook » Thu Aug 13, 2009 4:59 am

Yes, I'm hoping that it's a question of a few steps forward and fewer steps backwards but it is odd that it has suddenly reappeared like this with no obvious jugular constriction. The heamodynamics are quite complex so it could just be the collateral veins have filled up for some reason separate to the jugular...
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 cheerleader » Thu Aug 13, 2009 8:22 am

We need to remember that the opening of the jugulars and azygos stenosis relieved symptoms in people who were in the midst of a relapse, with new demyelinating damage . This is what Zamboni reports in his Charing Cross paper, and it indicates that a lack of reflux stops new damage in RRMS patients. We still do not understand how relieving stenosis will help those who have longer standing damage. It's all new, and much too soon to make pronouncements one way of the other.

That said, I'm really bummed that Alex's improvements have taken a step back this week...and appreciate her honesty.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby MaggieMae » Fri Aug 14, 2009 7:43 am

MaggieMae wrote:Could we have a current update from all who went to Stanford? Jamie, Loobie, Cheer seem to keep us informed. But, I'm wondering about the rest that we haven't heard from in awhile. Are they seeing any differences? I can't keep track of everyone.

The names I can remember:
Mel (Jamie)
Lew (Loobie)
Jeff (Cheerleader or Jeff w MS)
Marie (MRhodes40)
Alex Gibbs (Gibbledygook)
Sharon (Sharon)
Holly (Peekaboo)
Mark (Skydog)
Randi (Arcee)
Daisyduck
Sharon (LadyStewart)
Mark (CureIous)
James (Skydog's friend)
Mary (Sharon's friend)
Cindi (Catfreak)
Steve (Mormiles)
Co-worker's wife (Mel/Jamie)
Coach
Kate (Katelayne)
Blake (Greenwave)
Tracy (Questor)
Zap
Prof8

Please correct me if I'm wrong on any of these and I will edit.


Just to let you all know I keep updating when I hear someone new is having procedure.
Last edited by MaggieMae on Wed Sep 16, 2009 9:41 am, edited 11 times in total.
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Postby gibbledygook » Fri Aug 14, 2009 10:20 am

Alexandra Gibbs = gibbledygook
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 Sharon » Fri Aug 14, 2009 10:26 am

Cheer said
We need to remember that the opening of the jugulars and azygos stenosis relieved symptoms in people who were in the midst of a relapse, with new demyelinating damage . This is what Zamboni reports in his Charing Cross paper, and it indicates that a lack of reflux stops new damage in RRMS patients


I have posted in my updates about a pain which I was having in my lower right back prior to the surgery (had it since late Winter, early Spring). I was concerned about the pain because I remember having a similar sensation on my left side years ago. The day after surgery I did not have pain but I was on a bunch of pain killers so that made sense to me. Well, the pain has never come back. I am now wondering if I was having a relapse and the procedure stopped it. There is absolutely no way that I can validate this. I asked Dr. Dake and he just kind of smiled and said he would not even try to venture a guess at it......I guess it will always be one of those "hmm--I wonder" thoughts.
:?
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Postby MaggieMae » Thu Aug 20, 2009 9:21 am

Anyone want to give us a quick update on how they are feeling since their treatment? I just read Lew's blog, so I know how he is today.
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Postby Arcee » Thu Aug 20, 2009 11:31 am

Happy to oblige. 5 weeks out for me and other than really ugly bruises, only good things to report. It has been very hot in Boston these days, and I have not been bothered by it like I used to be - - no tingling, no overall MS sluggishness. I still feel like my clarity, the whole HD thing, is happening. No MS symptoms either, typically tingling or pressure in my hands and forearms - - but I should note that going a month without those symptoms is not unheard of for me. I think only time will tell on that one.
I'll post again if anything changes, and for sure after I have my 2-month post-surgery tests and discussion with the doctor in Boston to whom Dr. Dake referred me.
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Postby Sharon » Thu Aug 20, 2009 1:30 pm

MaggieMae
To update your list: a friend of mine will be having tests on Aug. 26th.

Mary (Sharon's friend)
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