Skydog

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

Skydog

Postby LR1234 » Tue Oct 06, 2009 2:19 am

Hi Mark,
Just wondering how you are doing and if there is any more news on what the plan is for the restenosis in the lower jugs?

L x
Last edited by LR1234 on Wed Oct 07, 2009 10:34 am, edited 1 time in total.
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Postby skydog » Wed Oct 07, 2009 9:24 am

Hey guys I am still here and breathing. Laying low for a bit and just waiting it out. Dr. D hasn't forgot about me, but wants to give it some more time. Mostly so he can learn more from some others that may hold key insights to my particular condition. For those that may not know me and my story. I had two stents placed in the upper right jugular 3 months ago with very favorable results. My heat intolerance and fatigue were substantially improved for the first two weeks. Just as I felt that the road to more recovery lay ahead something happened to change all that. For reasons yet to be known both the right and left jugulars collapsed low down in the neck area and the former issues that I had been enjoying a relief from came roaring back. In addition my neck is extremely sore and headaches are now the daily norm. My guess the forming of collateral pathways around the blocked jugulars are causing this. I am staying positive for myself and all involved here. Its rough going at the moment but knowing I belong to such a caring community here gives me hope. Great to read all the exciting new posts from so many newcomers. Welcome aboard! This is where it’s at. Peace and Health to All, Mark
Plant a BIG Garden Live in the Moment
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Postby Loobie » Wed Oct 07, 2009 9:30 am

skydog wrote:Hey guys I am still here and breathing. Laying low for a bit and just waiting it out. Dr. D hasn't forgot about me, but wants to give it some more time. Mostly so he can learn more from some others that may hold key insights to my particular condition. For those that may not know me and my story. I had two stents placed in the upper right jugular 3 months ago with very favorable results. My heat intolerance and fatigue were substantially improved for the first two weeks. Just as I felt that the road to more recovery lay ahead something happened to change all that. For reasons yet to be known both the right and left jugulars collapsed low down in the neck area and the former issues that I had been enjoying a relief from came roaring back. In addition my neck is extremely sore and headaches are now the daily norm. My guess the forming of collateral pathways around the blocked jugulars are causing this. I am staying positive for myself and all involved here. Its rough going at the moment but knowing I belong to such a caring community here gives me hope. Great to read all the exciting new posts from so many newcomers. Welcome aboard! This is where it’s at. Peace and Health to All, Mark


Brother, we love you, and your attitude, as usual, is to be admired. To have that big a dissapointment after having a glimpse of recovery, could not have been easy. You're my hero man, I'd be batty. I'm not seeing lots of relief, but I didn't have anything come roaring back either and I feel pretty stable. Great to see you're still on the radar and in communication with Dake. Hopefully he wants you back out soon. He'll get it. You are a walking, breathing correlation for CCSVI. Had some relief, things restenosed, the relief went away. It's like you and I talked about earlier, a tweek here, a tweek there........

Be good man, I think about you all the time and I know others do too.
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Postby CureIous » Wed Oct 07, 2009 9:36 am

skydog wrote:Hey guys I am still here and breathing. Laying low for a bit and just waiting it out. Dr. D hasn't forgot about me, but wants to give it some more time. Mostly so he can learn more from some others that may hold key insights to my particular condition. For those that may not know me and my story. I had two stents placed in the upper right jugular 3 months ago with very favorable results. My heat intolerance and fatigue were substantially improved for the first two weeks. Just as I felt that the road to more recovery lay ahead something happened to change all that. For reasons yet to be known both the right and left jugulars collapsed low down in the neck area and the former issues that I had been enjoying a relief from came roaring back. In addition my neck is extremely sore and headaches are now the daily norm. My guess the forming of collateral pathways around the blocked jugulars are causing this. I am staying positive for myself and all involved here. Its rough going at the moment but knowing I belong to such a caring community here gives me hope. Great to read all the exciting new posts from so many newcomers. Welcome aboard! This is where it’s at. Peace and Health to All, Mark


Ugh! So sorry for all the troubles. It is revealing that your symptoms went hand in hand with the state of stenosis. Have you had any further follow ups i.e. scans to see what it's doing? Or is that going off the obligatory 2 month scan? How far down did you get the restenosis? My left was at collarbone level and my right collarbone opened up when the upper went in. I have a very subtle sneaky suspicion that the right (lower) has stenosed again. Not any one thing to point on just gut, which can of course be happily wrong sometimes.
Keep us posted bro.

Mark.
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 Arcee » Wed Oct 07, 2009 10:21 am

Mark, I totally agree with Lew. Your attitude is great, and I do think of you and hope that you and Dr. Dake figure this out soon. Keep hanging in and may the relief (and learning) arrive soon.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby mrhodes40 » Wed Oct 07, 2009 12:37 pm

Hey Mark thanks for the hello, learning is happening all the time. I am glad you are already on the radar and can get back in when things are understood. It is really an odd thing how that new stenosis developed....
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 » Wed Oct 07, 2009 1:28 pm

thinking of you, Mark. Weather's getting cooler....what's growing in the garden? Got some squash and pumpkins coming in? Miss you...
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby skydog » Wed Oct 07, 2009 5:23 pm

Yes it was quite evident that the new stenosis went right along with the reoccurrence of the former symptoms. I knew something was amiss but tried to stave off any ills with the good old positive attitude. Well attitude is still good, but this old body hurts! No further follow ups or scans since the two month checkup. I have been keeping close tabs on my overall health with my NP friend. All vital signs are good to excellent. Also all my friends say, You look great… The good thing is the prior stents are looking fine so that area is done for now. I didn't bring home the pictures this time but as Dr. Dake scrolled down the neck my jaw dropped open when the left jugular disappeared at mid neck. I know the gut feeling is quite often right, but hope your wrong cure. Cheer, Garden is doing great with enough pumpkins for all the kids and some to eat as well. I am enjoying the beautiful fall weather. It is nice just watching and listening to the season change. I guess the good that comes from the bad is I just have to chill out and enjoy the company and help of my loyal friends. I am a lucky guy! Cheers, Mark
Plant a BIG Garden Live in the Moment
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