Coach -To Stanford and Back

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

Coach -To Stanford and Back

Postby coach » Mon Sep 21, 2009 1:05 pm

Thought I hadd posted about my Stanford experience, but I guess it got lost in cyberspace. Left for Stanford last Sunday and arrived in San Jose in a small drizzle of rain. My husband and I did the scouting of Stanford to find out locations of the different tests. Had the tests on Tuesday. Which went fine. I think I even momentarily dozed off during the MRI. Someone had mentioned in a previous post that there was no music during the MRI- I think there was heavy metal by the magnets. Met with Dr. Dake later that afternoon. He was supernice as well as personable and approachable. Also met Angela and Alex who were also very nice. It's always nice to put a name and face together. Also met Lew and his stepdad Tony. Delightful talking with them.
Results that we loked at in Dr. Dake's office were somewhat inconclusive. I did not have the stenosis or tortuous ollateral veins Dr. Dake has seen in others he has tested so far. He did say I seemed to have a slight narrowing in one area on the right and another on the left. If I understood him correctly, he does want to get a better look at my azygous. But that will have to wait because there was a 1.5 cm spot that showed up on the MRI that was not on my 2006 MRI. It was later determined by CT scann that I had Wednesday to be a venous cavernova. Dr. Dake decided it would be best if we addressed that first because of the need for the blood thiners and although he did not think the risk might be great he thought it prudent to proceed with caution. He did have Dr. Steinberg neurosurgeon at Stanford look at it. He ( Dr. Steinberg had removed two from patients that week in which they were affecting patient's quality of life.) Since mine is located in the right temporal lobe, I don't think it is affecting my quality of life, but the MS is. Anyways Dr. Dake is going to refer me to a doctor he knows in the neuroradiology department at Emory in Atlanta, which would be closer for us. He said he trusted her explicitly and that she would in turn refer me to the right neurosurgeon. My husband and I are speculating that they will want another MRI in 3 months and then in 6 months to watch for any changes. There does seem to be some calcification arround it, which is a good thing I suppose.
While I am disappointed that test results did not give a better idea or picture of what is going on or why I continue to progress. I did take my 1985 csf test results which had some pretty strong indicators for MS. We asked him did I have MS for sure and I think he was pretty confident I did based on pfevious test results and MRI. Lesions were present, but since I am SPMS according to my neuro, I don't think any enhanced.

Can't say enough good about the fine folk at Stanford. They were all willing to go the extra mile. Don't know if this will just be a delay of game penalty or a strike 3 and your out. Hate to be the one that might lower the batting average.
User avatar
coach
Family Elder
 
Posts: 201
Joined: Wed Jun 02, 2004 2:00 pm
Location: georgia

Advertisement

Postby Arcee » Mon Sep 21, 2009 2:24 pm

I wish the process were smoother for you, but don't worry about lowering the batting average - - you are actually increasing everyone's learning which will only help all of us. Perhaps not the role you wanted to have, but it is so generous of you to share the news.
It sounds like you have a great team helping you, maybe bringing in utility players, and it sounds like you will have great talent with you.
Best of luck as you continue to figure things out.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
User avatar
Arcee
Family Elder
 
Posts: 338
Joined: Wed Jan 05, 2005 3:00 pm
Location: Massachusetts, USA

Postby cheerleader » Mon Sep 21, 2009 2:29 pm

Coach-
Wow...what a journey for you. I'm so sorry to learn about your venous cavernoma, but glad that Dr. Dake picked it up, and was able to refer you to some good folks close to home. It's all part of venous drainage and microbleeding into brain tissue, so it may be all related to your MS too, coach...but you need good neurovascular folks taking care of you. Don't even worry about batting averages! Your health is what is most important!

Not what you expected at all...but I'm thankful this was caught, and you'll be in good hands.
prayers and good thoughts,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5075
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Postby radeck » Mon Sep 21, 2009 2:42 pm

Coach, just a quick thought that it would also seem to be important to have your iron levels checked, due to it's implications in the damage that originates from the vein abnormalities. You have only slight narrowing and have MS for a long time. So maybe particularly efficient iron absorption is an issue in your case? Others here can point you to the tests that need to be done.
Best wishes!
radeck
Family Elder
 
Posts: 398
Joined: Mon Feb 16, 2009 3:00 pm

Postby LR1234 » Mon Sep 21, 2009 2:59 pm

Also worth doing the antiphospholipid checks to make sure your blood isn't too sticky and thick.
LR1234
Family Elder
 
Posts: 1505
Joined: Wed Feb 11, 2009 3:00 pm
Location: California

Postby mrhodes40 » Mon Sep 21, 2009 6:00 pm

Oh my! Cavernova surprise, it sounds like an awful change in direction for you regarding where you thought you were going, I am so sorry, but knowledge is everything. You have a way to go now and some new things to consider.

Coach thank you for making the trip and sharing your information with all of us. Tell us what happens after the neurosurgeon!
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
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 2:00 pm
Location: USA

Postby radeck » Tue Sep 22, 2009 7:23 am

Coach, I thought about you since yesterday and had a crazy idea. I hope you don't mind my digressing a bit...

When reading Zamboni's papers and seeing how his CCSVI diagnosis was uniformly present in more than 60 patients with MS, and how the correlation was absent in over an even larger number of healthy controls as well as other neurological diseases, I actually was a bit surprised given that MS is not a straightforward diagnosis. I've read several accounts of people who after years of living with an MS diagnosis, found out that they had something else, the most prominent example being Lyme's (which apparently often goes undetected with the standard tests). I believe many had lesions on MRI, and positive spinal tabs. I'm guessing one typical MS symptom of stenosis would be fatigue, since there's chronic lack of blood supply to the brain. Many of the other symptoms that stem from more discrete areas can be caused, in principle, by parasites and the immune system's response to them.

I think many of us have come to think that measurable stenosis is more than a mere correlation with MS, but a necessary pre-condition. Your case either argues against this, or you have been living with a wrong diagnosis.

Another possibility is that the methods for diagnosing CCSVI are different enough in Zamboni and in Dake, and that you would have fulfilled two of the five Zamboni criteria for CCSVI. Perhaps somebody else will know if this is at all a possibility? Since Zamboni treated his patients in specific locations, presumably he had also seen stenoses in each.

Finally there's the option that CCSVI is not a necessary pre-condition for MS, but only a very strong predictor, and that you just happen to be somebody where "the other component" (whatever that may be, Lyme's? Chlamydia Pneumoniae?) plays a very strong role and the stenosis isn't necessary for starting MS. An interesting point is that antibiotics work in many patients at keeping MS at bay, despite their congenital stenosis. Even given an infection my thinking until yesterday had been that stenoses are necessary to lead to the cascade of events (iron deposition, hypoxia, inflammation) in MS, but now this is not clear anymore...unless…you have been misdiagnosed.

I'm sorry if I'm adding more confusion than clarity, but felt like letting you know what I've had on my mind. Btw, my MRI showed that I have a venous angioma, apparently not large enough to be worrisome.
Last edited by radeck on Tue Sep 22, 2009 7:45 am, edited 2 times in total.
radeck
Family Elder
 
Posts: 398
Joined: Mon Feb 16, 2009 3:00 pm

Postby mrhodes40 » Tue Sep 22, 2009 7:39 am

Another possibility is that the methods for diagnosing CCSVI are different enough in Zamboni and in Dake, and that you would have fulfilled two of the five Zamboni criteria for CCSVI. Perhaps somebody else will know if this is at all a possibility


The European doctors LIKE the doppler. They WANT to use the doppler to see if there are turbulent, or swirling or in some way chaotic blood flow that would alter shear stress. In this idea someone could have essentially open stents but a small area of turbulent flow that potentially could still cause issues. Dr Dake's point of view is strictly venous hypertension, theirs is turbulence and altered shear stress.

It appears that docs have to b trained by zamboni to be able to do dopplers his way, no one besides Zamboni-trained-Jacobs has luck with it in the US, though Simka was able to figure it out by working at it.
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
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 2:00 pm
Location: USA

Testing for OND

Postby coach » Tue Sep 22, 2009 11:53 am

Radeck I have had tests for Lymes and lupus. My neuro also recently ordered a cardiolip antibody and B12 level. All tests came back normal. I had been tested for lupus and Lymes when my symptoms reappeared about 11 years ago I do struggle with balance, bladder leg pain, fatigue, and heat intolerance. Don't know if one test is more accurate than others. Went looking for answers and guess I get to ask a few more questions. I was so encouraged to hear of those getting some relief of the things mentioned above. Son't if this means a future surgery or not. We shall see. Thanks for those that have offered encouragement. Just have to keep the right perspective. While life may be challenging at times and we are often faced with the unexpected, I have to remember that this life is temporary, just practice for the next.
User avatar
coach
Family Elder
 
Posts: 201
Joined: Wed Jun 02, 2004 2:00 pm
Location: georgia

Postby LR1234 » Tue Sep 22, 2009 12:01 pm

I keep telling myself the same thing coach, that this isn't all there is to life and there is a better place after... I just hope we are right x
LR1234
Family Elder
 
Posts: 1505
Joined: Wed Feb 11, 2009 3:00 pm
Location: California

Postby whyRwehere » Tue Sep 22, 2009 12:31 pm

So, what is a venous cavernova. I googled it and didn't get very far.
User avatar
whyRwehere
Family Elder
 
Posts: 908
Joined: Mon Oct 03, 2005 2:00 pm

Postby cheerleader » Tue Sep 22, 2009 12:34 pm

whyRwehere wrote:So, what is a venous cavernova. I googled it and didn't get very far.


venous cavernoma...
http://www.brain-aneurysm.com/cm.html

thinking of you, coach...you're so right about these earthsuits, and what we're really here for. I've learned alot from you, and your attitude-
blessings,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5075
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Postby whyRwehere » Tue Sep 22, 2009 12:41 pm

Got it, thanks...wrong spelling...
User avatar
whyRwehere
Family Elder
 
Posts: 908
Joined: Mon Oct 03, 2005 2:00 pm

Postby coach » Sat Oct 03, 2009 8:32 am

Appointment with neurosurgeon at Emory on 10/7. We will see what we find out. Will update when there is something to share. Dr. Dake wants me to find out if blood thinners will present a problem. Dependingon ns assessment will determine when I can return to Stanford for the angiogram to see what's going on in a few spots.
User avatar
coach
Family Elder
 
Posts: 201
Joined: Wed Jun 02, 2004 2:00 pm
Location: georgia

Postby CNClear » Sat Oct 03, 2009 5:00 pm

Good luck on the 7th, Coach...If I were in your place, I would want to go to Emory...of course, being in the Atlanta area, too...

I'll be anxious to hear how it went...

Lisa
User avatar
CNClear
Family Member
 
Posts: 96
Joined: Fri Aug 28, 2009 2:00 pm
Location: Near Atlanta, GA

Next

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service