Dr. Haacke and his study...I need more info please

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

Dr. Haacke and his study...I need more info please

Postby beechwood297 » Sun Nov 01, 2009 5:08 pm

I volunteered for Dr Haacke's study of narrowed jugular, and after seeing a few of my scans, he wants me to come for detailed imaging.

Honestly, someone e-mailed me out of the blue, because I had posted somewhere on the internet a year ago about pinched jugulars, and told me about this site. In a weeks time not only have I found out Dr.'s are researching this problem, but they want to study me. Kinda overwhelming.

So any background info or anything I may find useful, please feel free to comment. I don't know anything about this doctor or these studies, but want desperately to get rid of these awful symptoms!!

Thank you,
Joel
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Postby cheerleader » Sun Nov 01, 2009 5:47 pm

Joel-
I'm Joan/cheerleader...I referred you to Dr. Haacke after the jugular pics you mentioned on the Facebook CCSVI page- and posted here:
http://www.thisisms.com/ftopict-8515.html
I had asked you if you had received an MS diagnosis, and you did not reply. I assume you have not. If so, your information will be very valuable to this study. Doctors have found a link between what you have- missing or malformed jugular veins- and multiple sclerosis. There just isn't enough good drainage for the brain, and it suffers from lack of oxygen and iron deposited into brain tissue. I know you've been suffering from fatigue and cog fog and other issues. Maybe you can share with us how you're doing.

My husband had an MS diagnosis first, before we found out about his jugulars. He's since had them opened up at Stanford and is doing GREAT! No more fatigue, brain fog or problems with heat. He's older than you (46) and had your symptoms for a long time. You're so lucky to be young :)

Dr. Haacke is one of the finest diagnosticians in the world. You are in good hands....don't be freaking out! It may turn out you've caught this before getting full blown MS...like I said, your young age is in your favor. Dr. Dake is treating folks like you at Stanford University, covered by insurance. But one step at a time.

Ask any specific questions you like. Read up on the "Just the Facts" thread and learn about CCSVI. We're here for you-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby beechwood297 » Mon Nov 02, 2009 8:28 am

Sorry, Joan. I have not received a diagnosis yet. Every Dr. I see says something different. I just want these symptoms gone!!!

I hope my condition can shed some light on this problem. Some Dr's say there is nothing they can do about the pinched jugular, and others say if I were in a college town, someone would publish a paper on me.

I am going to accept Dr. Haacke's invitation for imaging. At this point, I have nothing to lose.

Joel
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Postby cheerleader » Mon Nov 02, 2009 9:33 am

beechwood297 wrote:Sorry, Joan. I have not received a diagnosis yet. Every Dr. I see says something different. I just want these symptoms gone!!!

I hope my condition can shed some light on this problem. Some Dr's say there is nothing they can do about the pinched jugular, and others say if I were in a college town, someone would publish a paper on me.

I am going to accept Dr. Haacke's invitation for imaging. At this point, I have nothing to lose.

Joel


No apologies needed, Joel :)
I'm sorry for you....I'm sure this has been a stressful time not knowing what's going on. Dr. Haacke invented a bunch of MRI techology, he's a really brilliant and caring doctor. He'll probably be able to recommend some folks to help you out, and will most likely publish a paper on you, as well.

The test will involve some MRIs (magnetic resonance imagery)- to view your brain, and MRVs (magnetic resonance venography)- an MRI with a bit of contrast dye added to your veins, to see what's going on with blood flow to your brain.

There have been a couple of folks like you who presented first with blocked jugulars without a prior MS diagnosis....one at SUNY Buffalo and one at Stanford, so you are not alone.

Keep us posted as to your visit to Dr. Haacke, and hang in there. In the meantime, I might suggest sleeping with some books or a board under the head of your bed, to raise just the head of the bed a few inches. Don't do it with pillows, you'll just crimp your neck...use something under the bed itself. The docs at Stanford recommended this to my husband before he was treated. This allows the other veins to help out your jugulars....when we lie down flat, the jugs are responsible for all the blood flow back to the heart. Yours need some help.
best,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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New MS Possible cure CCSVI

Postby AlanH » Mon Nov 23, 2009 2:27 pm

Most of the previous information appears to be based on RRMS Relapsing Remitting MS. I would like to know if it also was tested on SP MS Secondary Progressive Or Second Stage MS ? That is what I have and have had for 19 years. I use a cane around the house, a walker very short distances outside and use a scooter if I have to go more than 10 m.due to quick fatigue and a zero balance.

Am I in the right place to ask this question ?

Thank you... Alan G. Holmes
Edmonton Alberta Canada
alanholmes@live.ca
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Postby mrhodes40 » Mon Nov 23, 2009 2:32 pm

Alan I was treated at Stanford and I am SPMS. see the regimens forum and Marie's stents thread.... :D

click thisisms forum index, top of this page then go down to regimens
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 Loobie » Mon Nov 23, 2009 5:08 pm

mrhodes40 wrote:Alan I was treated at Stanford and I am SPMS. see the regimens forum and Marie's stents thread.... :D

click thisisms forum index, top of this page then go down to regimens


Me too, SPMS I mean.
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After treatment ?

Postby AlanH » Mon Nov 23, 2009 6:12 pm

Loobie and Mr Hodes, have all yer MS symptoms dissapeared since the vascular opperation ? :?:
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Postby grant » Mon Nov 23, 2009 8:26 pm

Hi guys,

How did you go about beginning the process of finding out if this is something that is affecting you?

I was diagnosed with RRMS in 2001 (it started in 98). I have copies of my MRIs on CD, but I can't tell where my veins are... I am not a dr :)

I am intrigued by this, and like everyone here, really wouldn't mind a little relief from the h*ll that is MS.

Did you speak with your neurologist? Any pointers you can give me would be great, and if anyone is from Phoenix, and has a good Dr that believes in this, please let me know.

Thanks,

Grant
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Postby AlanH » Mon Nov 23, 2009 10:58 pm

I just heard about this vein stricture blood / iron issue on W5 the other night and contacted my neurologist office this morning and got a rush appointment for this coming monday. He's not one to step out of the box as this is so I'll probably have to go elsewhere to get this done- I'm 49 and diagnosed 19 years ago and will do anything to have it gone...Alan
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Re: New MS Possible cure CCSVI

Postby CureOrBust » Tue Nov 24, 2009 12:37 am

AlanH wrote:Most of the previous information appears to be based on RRMS Relapsing Remitting MS. I would like to know if it also was tested on SP MS Secondary Progressive Or Second Stage MS ?
Reads Zamboni's study published the end of last year. He found different patterns of stenosis between RR, SP & PP. He is clearly looking at and has treated all three variants of MS.
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any nonsuccessfull resul ?ts ?

Postby AlanH » Wed Nov 25, 2009 10:43 am

is there anyone who has had the Vascular operation and not experienced a reduction in their SPMS symptoms ?
I have little faith in my own doctor as he says our University Hospital does not perform MRV's and will probably have to travel somewhere to get it.
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Postby shye » Mon Dec 14, 2009 5:58 pm

Beechwood,
I think it is urgent that you view a video on the atlas and its misalignment--a good one is this http://www.youtube.com/watch?v=2Ae5CHyS ... re=related
The bone that your jugular is hitting is the atlas--
mine has been misaligned for many, many years--drs did not pick it up when I had accident that affected neck and head, and chiros did not pick it up. So for years, in pain, sometimes severe, affecting head, neck, back--and along the way, optic neutitis, then finally MS diagnosis--only recently, due to bad dental work, went to neuromuscular dentist, and he picked up it was the atlas and CI misalignment that was causing some of my severe symptoms. Was with a chiro, but not getting results once again, so switched (rather than give up as had before), and this chiro finally did an adjustment (not her first try, was seeing her for a number of times) than re-aligned my Atlas--am practically pain free for first time in over 26 years--and my left leg which has been out for all these years is very different immediately. Definitely re-aligned my spine in getting the Atlas corrected. I don't usually hold the adjustments--but this has been for 12 days so far--haven't told chiro yet, see her in 3 days. My theory--couldn't hold the adjustments before, because the Atlas is indeed the king--get that aligned, and rest of sping aligns.
Atlas can be treated by regular chiro manipulations, (might take a number of tries before gets it), or by the very expensive orthoganal atlas machines, which are precise apparently and right on.
I hope this helps you, you have all my best wishes.
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