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

Hello

Postby guitarguy » Tue Jun 23, 2009 10:43 am

I been following this topic off and on for the past year. Since I been getting sick again I returned to the forum. This screenname was made by my husband when he was looking into revimmune for me.

The chemo scares me quite a bit, I am not saying I wont do it. But I just dont think I am ready for something like that at the moment. When I saw this, at first I was skeptical and still am a little but I think I might look in to it.

I am not sure of I fit but when I was younger I suffered from cluster headaches for years. Treated with every med you can think of and nothing helped. Finally I was put on an inhaler called ergotamine which got rid of the pain. Not sure if the headaches were vascular related or not, but I suspect so.

After the headaches left me, I went blind in one eye and dx with MS. it's been about 15 years now and I have done ok, but since I gave birth a year ago I am not the same, stiffness, fatigue, burning pain etc...

I been always told MS is an autoimmune disease this is difficult to wrap my head around but I have been going through all the posts the past 2 days learning as much as I can.

maybe I missed it, but there is no data to show how well people have done since the surgery?

Would I call Dr. Dake or do I need to see a local vascualr surgeon first? That can be difficult since I would probably need a referral.

Thanks to everyone here who have taken to the time to post so much information, I think I have been able to soak in about 40% of it. There is so much to read here.
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Postby cheerleader » Tue Jun 23, 2009 11:45 am

welcome, guitar woman-

Ergotamine constricts the arteries in the brain. If your head can't drain because of venous blockage, and the intracranial pressure is causing pain, than restricting the arteries and bloodflow into the head would certainly help. Might explain the mechanism behind your relief from Ergotamine in the CCSVI paradigm. Giving birth is the ultimate valsalva (reflux inducing) maneuver, and lots of women have relapses after giving birth.

I believe in this paradigm, and my husband is doing really well 7 weeks out from his stent procedure. We went on a 5 mile hike on fathers' day. He's awake, without fatigue, with much less spasms/leg pain. His head feels clear and he's chipper and social again. This has been a God-send for him. He'll get a new MRI in July, and we'll see how the lesion load looks.

This is all brand new. My hubby was the first patient treated w/stents in the US, to relieve jugular insufficiency and vascular headaches...not a treatment for MS (yet) Maybe see if there's someone in your area who will scan you for jugular stenosis, or call Dr. Dake. I'd wait on chemo until you get the vascular angle checked out...but that's just my opinion. It's your body, and I wish you only health and healing.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby chrishasms » Tue Jun 23, 2009 2:44 pm

123
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Postby guitarguy » Tue Jun 23, 2009 2:57 pm

I see your point chris and I agree. I am not so afraid of the chemo itself as much as when I have no immune system. that's when the problems come in. All kinds of bad things can happen like catching a bug or not being able to get rid of a fever. I am not sure of the other complications but there is still a risk.

There is a risk with this procedure as well. I read you have to be awake for this and yes having a piece of plastic in my jugular sounds really scary too.

Seems nothing is easy with this disease.
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Postby chrishasms » Tue Jun 23, 2009 3:10 pm

123.
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Postby cheerleader » Tue Jun 23, 2009 3:47 pm

A stent is made out of metal...oh, never mind....everyone do whatever....it's all good...I'm ready for my vacation....
Jeff's great. 7 weeks out. New MRI in July-
later,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Sharon » Tue Jun 23, 2009 3:58 pm

Chris -
I for one think having an untested piece of plastic stuck into my vein


Untested? I beg to differ with you Chris. The stents have been approved for use in vascular surgery and have been used for years.

Sharon
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Postby chrishasms » Tue Jun 23, 2009 5:26 pm

123
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Postby Sharon » Tue Jun 23, 2009 8:14 pm

Chris -

You are experiencing healing from the HyC which is great news - geez, you have suffered enough from this disease. In my case, I would not have been a candidate for HyC because I had no inflammation, no active lesions. JH docs must know that the HYC only works for certain types of MS -----and it seems to be working well with not only you, but others.

All types of MS are being found with Zamboni's diagnostics, and he is treating all types of MS by opening the blocked veins with a similar procedure to angioplasty. Dake is looking at all types of MS, and he is treating with the stents when necessary. When Dake told me that I had a major blockage of over 3" long and that he could treat it because it was only 99% blocked, I said yes without hesitation. I had done my research, and I was confident in Dake. My hope is that the disability progression will stop - if I get any recovery than that is a bonus. I doubt if we see any change in lesions in our two month follow-up. How long has it taken you? I find it interesting that Jeff, Marie and Holly each had immediate symptom relief - this had nothing to do with them losing a lesion or two. It had to do with the blockage being removed. Heat sensitivity, brain fog, fatigue, depression -----gone.

Maybe we will end up with a multi-discipline approach to treating MS -

Sharon
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Postby guitarguy » Wed Jun 24, 2009 5:55 am

Same with me, my last couple MRI's have not shown any new lesions or enhancement. My MRI's have been stable for years now, so I would not qualify for the revimmune either. But now my symptoms seem to continue anyway.

My last MRI actually had a spinal lesion disapear, it was my only one on the spine so I was happy about that. But I don't feel any better, just worse.
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Postby mrhodes40 » Wed Jun 24, 2009 9:22 am

Guitar guy, you are right, Lesions appear and disappear all the time.

HERE IS A SERIAL MRI PICTURE Note how in August a lesion appears and it disappears the next month. Note how in April one appeared that was also gone the next month. There is nothing miraculous or unusual about that.

I have seen several of these serial MRI's on MS patients on the net and they all show exactly the same thing: lesions appearing and disappearing. My neuro even told me black holes can disappear.

My own MRI's are like Sharon's. NO inflammation. Rejected by JH a year ago. And I expect no changes in my 18 year old lesions. Believe it or not, I have the same 4 lesions I did at the beginning. THEY ARE SCARS. Not inflammation or simple demyelination that can heal and look different on MRI. They are not going to. I actually have a 5 year old back hole too. If they do look different next month I'll be so shocked they'll have to pick me up off the floor from a dead faint.

Inflammation comes and goes. It has little clinical significance other than to the extent that the inflammation itself is causing the damage of MS...and that is a question that is open for debate. If you are a AI theorist you have been claiming it s all about the inflammation being the scause of MS lesions.

If you are not AI but rather think MS is another physical process, possibly CCSVI, inflammation is just a normal physical response to the damage and it is nothing more than evidence that the damage is still on going.
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 Sharon » Wed Jun 24, 2009 10:07 am

Marie -
If they do look different next month I'll be so shocked they'll have to pick me up off the floor from a dead faint.


I'm with you 8O 8O
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Postby MaggieMae » Wed Jun 24, 2009 10:44 am

Sharon and Marie,

Give us an update. Any new changes? Feeling stronger each day?
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Postby chrishasms » Wed Jun 24, 2009 11:20 am

123
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Postby LR1234 » Wed Jun 24, 2009 11:39 am

I get really confused on the AI theory with the inflammation aspect.
I had an MRI bang smack in the middle of a relapse (I mean literally 2 MRI scans 14 days apart the first one on the second day of relapse the other one 14 days later) and had no enhancement at all, yet I have remitted the symptoms from that attack so I fit the RR pattern rather than the progressive... Can anyone make sense of this?


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