Why bother?

cheerleader · Post by **cheerleader** » Thu Mar 31, 2011 10:40 am

Two years ago, Jeff and I looked at this image in Dr. Dake's office. All of us had dropped jaws...look at the left side of Jeff's head (on your right) there are less cerebral veins, less bloodflow, no jugular flow and a trickle through the left side which was taken by curly fry collateral veins. We knew this wasn't normal, and as Dr. Dake said, it wasn't good for Jeff's brain.

Two years later, Jeff finally has equal and constant blood flow through both sides of his brain. It's taken three treatments, some stents, some lifestyle changes and lots of staying local and follow up. It has not been as easy as we might have hoped in the beginning. A lifetime of a venous malformation (a malformed left dural venous sinus and two stenotic jugular veins) created lots of damage. Jeff lost his peripheral vision as a child. Ironically, if he had presented with that vision loss today, he would have had an MRI/MRV and his venous malformation would have been caught and stented. But it wasn't caught...and 30 years later he had depression, fatigue, heat intolerence and over 20 cerebral lesions. It took Dr. Zamboni's research to make us question his venous system.

One might ask, why bother? Why keep writing about this or work to keep this information out there? Good question. I believe that every pwMS has the right to know if a venous malformation is part of their disease. I do not know if it causes MS, or whether MS makes a venous malformation worse. All I know for sure is that Jeff's brain was not receiving adequate blood flow, and now it is. And he is functioning much better, no new lesions, no brain atrophy and no disease progression. Only relief from fatigue, headaches, heat intolerence, muscle spasms, sleep apnea and cognitive fog.

If I had MS, I'd want to know if my brain looked like Jeff's. I'd want a local neurologist or vascular specialist to test me with MRV or doppler. I'd want a relationship with a local doctor who cared about me, would follow me for the rest of my days. That's what this is about. Not the cure for MS in a distant land, not a political debate or endless arguments. Just the facts....what do my veins look like? How is my cerebral blood flow?

If my blood flow looked like this, I'd want to know.
cheer

Blaze · Post by **Blaze** » Thu Mar 31, 2011 11:22 am

Cheer, thank you for "bothering!"

PCakes · Post by **PCakes** » Thu Mar 31, 2011 12:38 pm

Blaze wrote:Cheer, thank you for "bothering!"

Yes.. for the love of your husband, and for the love of his wife, and for the love of his son, and for the love of healing ..thousands have and will benefit.
I am humbled and so fortunate to witness and be part of something so powerful.

Thank you

bestadmom · Post by **bestadmom** » Thu Mar 31, 2011 12:44 pm

Love you Joan. Without you we'd have no hope.

blossom · Post by **blossom** » Thu Mar 31, 2011 1:11 pm

thank you cheerleader. i'm glad your husband is doing so well.

AMJ · Post by **AMJ** » Thu Mar 31, 2011 1:11 pm

Yes Cheer thank you for bothering, for sharing Jeff's journey, for caring about all those with ms, for being the wonderful person you are, you are greatly appreciated.

Anne

HappyPoet · Post by **HappyPoet** » Thu Mar 31, 2011 4:42 pm

Cheer, thanks to you and Jeff, I bothered... and learned some very important answers to questions I've had almost my entire life:

* I have dural sinus malformations.
* I had malformed L and R IJV valves that blocked 95% of blood flow.

Thank you both very much for bothering... for caring, for understanding, and for working so hard on behalf of millions of people around the world.

Trish317 · Post by **Trish317** » Thu Mar 31, 2011 5:36 pm

Saying thank you doesn't seem like enough but....thank you....

cheerleader · Post by **cheerleader** » Thu Mar 31, 2011 8:20 pm

wow...I really didn't write this to get so much love...but I appreciate the kind and heartfelt words. I've met many incredible pwMS throughout this journey, and feel honored to be a part of this important work.

I bothered to write this because I think pwMS have a right to know if they have a venous malformation which might be contributing to slowed perfusion and venous insufficiency in their brains and spines. It's as simple as that. If people don't care to investigate CCSVI, that is their right. But if people want to look into venous stenosis as a possible contributor to their disease process, they should have that right as well. That's all. That's why I bother---and will continue to bother. All of the craziness and bickering on this website confuses the issue... it's not a game. It's not who is right or wrong. It's about knowing if a venous malformation might be contributing to your disease. that's all-
cheer

Drury · Post by **Drury** » Thu Mar 31, 2011 8:36 pm

Cheer,

Thank you for all that you do for us and for showing us the way.

You ARE very loved and appreciated and I would want to know too!!

Drury

Johnson · Post by **Johnson** » Thu Mar 31, 2011 11:52 pm

I concur. Let the love flow! (and the blood).

Thanks for calling Avis. I had given up looking for hope any more, my only hope was not getting really bad. Friends kept telling me to watch the show, and I kept resisting. A week later I was on the list for Poland. Now I remember what feeling "normal" is again. One forgets after so many years.

Would that I could get local treatment. Maybe I ought to move to NYC.

cheerleader · Post by **cheerleader** » Fri Apr 01, 2011 6:15 am

Johnson wrote:I concur. Let the love flow! (and the blood).

Thanks for calling Avis. I had given up looking for hope any more, my only hope was not getting really bad. Friends kept telling me to watch the show, and I kept resisting. A week later I was on the list for Poland. Now I remember what feeling "normal" is again. One forgets after so many years.

Would that I could get local treatment. Maybe I ought to move to NYC.

Actually, Dr. Embry put the call in to her. He'd been sent Dr. Zamboni's research and the original CCSVI thread by someone from this forum who asked him, "have you heard about CCSVI?" It's been interesting to me that Canada has the press, yet the US has the treatment. If you haven't checked out Angioplasty for All/New Hope for MS, do so. They are a good group - http://www.newhopeforms.ca/

Don't move to NYC, Johnson...too much stress, pollution, not enough nature. We did our time there. Keep moving, keep flowing at home. We'll get there-
cheer

bestadmom · Post by **bestadmom** » Fri Apr 01, 2011 6:53 am

Joan,

Don't tell Johnson to not move to NYC!!!! I pm'd him and told him to. Besides the ccsvi "party" that is occurring in the AAC waiting room, living in a city with a great public support system for the disabled is amazing.

I've been living in the burbs my whole life with only a few years of living in the city when I was single. I thought I'd never want to move back. Every day I am more convinced that NYC is a great place to be if you're disabled. It's easy to get around and the services provided for the disabled enable us to get around. When my kids are out of the house, we're moving back.

Yesterday I had a doppler in Brooklyn at AAC, and got picked up at my office by an Access-a-Ride van, taken directly to Dr. Sclafani's place and brought back to my office when I was done. It cost $4.50, less than the toll to get there.

The stores are easy to navigate, the restaurants are acessible, every city bus is accessible, the museums, etc. There's so much to offer that is a physical impossiiblty to do in the burbs. I don't need to depend on my husband to drive me anywhere except the train station so I can go on my merry way. It's very liberating (no pun intended).

mb

Blaze · Post by **Blaze** » Fri Apr 01, 2011 7:31 am

cheerleader wrote:
Johnson wrote:
Would that I could get local treatment. Maybe I ought to move to NYC.
Don't move to NYC, Johnson...too much stress, pollution, not enough nature. We did our time there. Keep moving, keep flowing at home. We'll get there-
cheer

I agree. Uclulet to NYC would be a disaster. About 40 years ago, I was living in mid-town Manhattan and my fiance was living in Gold River, BC. We couldn't have been further apart geographically and culturally and still been on the same continent. We got married anyway, but those differences probably do a lot to explain why he has been my ex for 35 years.

Uclulet must be close to paradise on earth--except for the rain. Stay where you are Not Johnson! And, help keep up our good fight.

bluesky63 · Post by **bluesky63** » Fri Apr 01, 2011 9:15 am

I'm going to be on the Upper West Side imminently (appt with "the king") and bestadmom, you are making me really eager for it.

All the "bothering" has completely, wonderfully, unimaginably changed my life, and this has rippled out to countless other lives. Two years ago I couldn't have guessed where we'd be today. I am so grateful. Thank you.