CCSVI patients' log

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

Postby catfreak » Wed Aug 26, 2009 12:06 pm

I agree with the others.

Jamie, this story brought tear to my eyes too.

I've had my children and they are grown, thank God! But I would like to enjoy grandchildren someday.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby mrhodes40 » Wed Aug 26, 2009 5:34 pm

Oh I want to endorse Joyce's recommend with tears in my eyes too :D

Jamie said
But we've done it. She's been through the chemo, followed the autoimmune theory to its logical maximum (short of radiation and bone marrow transplant) - she still suffered.


YES. How many of us will go through this whole gamut only to fall off the end of the train some years down the road before the pharmaceutical industry finally offers to pay for research that proves these things do not actually appreciably impact the disease course? (HAH!)

You see, then there'd be this objective evidence that people demand............till then, people doing for CRAP on these drugs are all just anecdote because the only acceptable "REAL" evidence based medicine is the studies that show how great CRABs work.

see the box they've built?

Jamie said
She's a clinical instructor in genetics. We know a lot of doctors, surgeons and pHD's they have mostly expressed extreme interest and a 'that makes total sense' response.
I am impressed by Mel's CV there. She probably knows a thing or two about research studies :wink:
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 MaggieMae » Fri Aug 28, 2009 12:38 pm

Sharon,

Your friend, Mary, was to have the surgery on the 26th. Did she have the surgery and how is she doing? Mary may have been at Stanford while Mel's co-worker's wife was having the surgery.
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Postby Sharon » Fri Aug 28, 2009 12:56 pm

Maggie -
Yes, my friend had her surgery yesterday. I spoke with her husband and she was doing okay, She had a blockage high up in her right jugular vein. I hope to speak with her later this afternoon after she gets back to her room at the Sheraton.

Thank you for asking about her.
Sharon
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Postby MaggieMae » Tue Sep 01, 2009 9:00 am

I continue to update the list that I created to track the names of those who have had the treatment at Stanford or who have scheduled their appointment for the procedure. Is there a way to take the list and put it in a sticky (or somewhere) where it won't get lost over time?

Note: Look back to page five under this topic.
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Postby CureIous » Tue Sep 01, 2009 3:14 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 4:01 pm, edited 1 time in total.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby ladystewart » Tue Sep 01, 2009 9:10 pm

Ok--I am 1 month out. I am in a wheelchair . Was using walker 2 months before procedure. Wait?? Too early?

Hand was closing and opened right after surgery!!
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Postby MaggieMae » Wed Sep 02, 2009 6:04 am

LadyStewart,

Could you be more specific. You were walking with a walker two months before procedure? Where you walking with a walker when you went in for procedure? You are now in a wheel chair.
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Postby LR1234 » Wed Sep 02, 2009 6:42 am

I think we just need clarification if you feel the procedure was a part of your walking ability deteriorating or were you worsening before the procedure and feel you are still getting worse? or have you had improvements?

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Postby ladystewart » Wed Sep 02, 2009 7:15 am

No, I do not think procedure was going to change my walking ability. I just think I was having/had a relapse before. Waiting for more changes--too early?
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Postby skydog » Thu Sep 03, 2009 8:29 am

Follow up report, Since the procedure after the first week it seemed as though I slipped steadily back to most of the original condition. Not sure why I did so good in the beginning and am now suffering at the end of eight weeks. Right after surgery my heat intolerance was good then slipped to about 30% better at 6 weeks and now the same as before. Also no longer am I able to sweat even slightly before fatiguing severely. Was there something that I took that caused the sweat I experienced the second night after leaving Stanford? On the trip home I actually bruised little and since have had only one bruise on my leg that disappeared overnight. The usual cuts and scrapes bleed a little more than usual but seem to seal and heal up rather rapidly. Is this a good thing or not? The blood thinners have not been successful in increasing my INR. The results are as follows: one week 1.02 week three 1.4 week five 1.1 and all the time by increasing the warferin to a dose of three 7.5 mg tabs per night. At this point I have decided to drop back to the one daily and be rather strict about the intake of foods that are high in vitamin k and might be causing the levels to stay the same. Now I have increased the foods that should increase the blood thinning. No retest yet. The only supplements I have been taking are an occasional vitamin d on cloudy days. A multi once a week and vitamin c powder in fruit/berry smoothies maybe twice a week. I would like to add back a few that seem to help others that I was taking before. Now I say helping others because now eleven weeks without supplements I really cannot say that there is any change one way or another. I feel well nourished from the foods I eat which are mostly raw from our garden. The seafood is cooked in lime juice mixed with lots of onions, garlic, cilantro, cabbage, salt and vinegar. My daily water/ fluid intake is well over 1.5 gallons. Now it is my hope that I can get off the blood thinners and resume a better fitness program. The stationery bike not working out and feel that getting back on the mountain bike every morning would be a great benefit. I would also like to get back in the daily use of my inversion table. This has helped me a lot in the past and because of not wanting to put too much strain on the vascular system have only used it occasionally in the past couple of months. My bladder control is poor and spastic colon has returned. Spastic left leg and overall weakness seem to be the daily norm. I have not been able to walk unaided for the last couple of weeks. The numbness in my left hand has returned and I find it hard to control my movement in a coordinated fashion. My headache has returned but now in a different location that is more frontal. At the end of the day it is also down low in the base of my skull. Twinges of pain are felt in the stent area especially during the warmer temp period of the day. My vision is better than before the surgery but not nearly as good as it seemed the first week after. Now my Hearing is nearly the same as just after the surgery. No more pops clicks and buzzing just a steady ring. Any suggestions for the future will be greatly appreciated. I am trying to stay positive despite the trying times. Now after my eight week check up I can see why some of the earlier symptoms have returned. We are not sure why but I now have a rather severe occlusion in the left jugular and narrowing of the right lower down in the neck area just as most others have had. If this had shown up eight weeks prior I would have undergone stenting of one or both jugs in this area. For now we are in the wait and see mode. The stents in my upper right jug are looking great. I am off the warferin and plavix. Yahoo… We are heading home and I will report more upon our return. Cheers, Mark
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Postby MaggieMae » Thu Sep 03, 2009 8:43 am

Skydog,

Seems like there is still so much to learn. Why would this happen - new stenosis - and so soon after your initial surgery?
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Postby cheerleader » Thu Sep 03, 2009 9:04 am

skydog wrote: We are not sure why but I now have a rather severe occlusion in the left jugular and narrowing of the right lower down in the neck area just as most others have had. If this had shown up eight weeks prior I would have undergone stenting of one or both jugs in this area. For now we are in the wait and see mode. The stents in my upper right jug are looking great. I am off the warferin and plavix. Yahoo… We are heading home and I will report more upon our return. Cheers, Mark


Mark...
I'm so sorry. Obviously, there is more to the story. Keep your positive attitude, keep the healthy foods, I hope and pray there will be more answers coming out of the conference next week. Something maybe the Italian doppler specialists are on to regarding bloodflow. Being off the rat poison will be a sweet relief. I give Jeff nattokinase and serrapeptase (proteolytic -protein eating- enzymes) to keep his coagulation numbers down. Like you, his blood is very thick. Traveling mercies. Get home soon.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby LR1234 » Thu Sep 03, 2009 9:13 am

Hi Mark,
I am so sorry to hear that news. I wonder why the stenosis has basically shifted itself to another area.
Did Dr Dake recheck your venous pressure?
So is he going to leave the new stenosis?
Does he think that is why your symptoms have returned?

It must be so hard for you to have had symptoms relief for it to come back again.

I was thinking the other day about the positioning pf the verterbrae in the back and was wondering whether people with MS have misalignment which maybe causes extra venous pressure perhaps causing stenosis in certain areas. I know I had my worst and first relapse after my back was manipulated. I am planning on going to see a chiro who takes x-rays first so I can see exactly how my back bones look and to see if they can alter it (and my neck) for the better.
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Postby zap » Thu Sep 03, 2009 9:19 am

I am also very interested in the effects of the spine and muscles on the venous drainage. A long time ago I predicted that "computer slouch" may have something to do with this issue, and I wasn't joking as I think it was taken.

I suspect that we may want to look at physical therapy in conjunction with venous therapy ... to correct poor posture, etc and take pressure off of the veins. Yoga might be really good to look into, as it combines posture correction, gentle strength building, breathing, etc ....
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