Itzehoe

I feel now that it is necessary to write about what I had "gained" from the CCSVI seminar two Friday's ago... or at least what I had wrote to Mom and Haley, then later to Aunt Kim.

I had ignored Mom's phone calls all weekend after Friday's seminar - I came out of there with mixed emotions, totally on the fence and flat out angry. For the life of me, I could not gather thoughts to tell her what had been said and most importantly, what had not been said or encouraged. Over the phone on Monday morning, I had apologized to her for the lack of communication though explained that I wanted to be as positive as possible while trying to give her the details of the seminar. I spoke gently, lacking negative emotion, aiming for positives:

There were about 300 people there!

... truely a good thing, shocking to my eyes and I'm sure her ears.

I was stuttering on words, to say the least. I gave up on the telephone explaination after 2 minuties and told her I would e-mail her so I can better explain myself. Really, I just didn't want to fucking sound negative and with the boiling point of frustration and anger reaching it's mark - I said goodbye. After all she had been through, I knew the only thing she wanted (more so needed) was positive feedback... and with me being that deliverance, I promised myself to end this / start this well.

May 3rd 12:35 pm

(Looking at the notes taken on my phone, my mind was blank as fuck; anger, frustration.

...This email took two hours to write)

So here are some of the notes I took:

-Getting an MRV done is not sufficient enough to show CCSVI... When a person is laying down - their veins are narrowed. Being able to see the veins internally is what researches really want - this way they can get the full picture on what is exactly happening to, around and inside the veins. The type of scan ideally for showing all the different shapes, marks, sizes and over all (most importantly) quality of the picture during a venograph is called the SWI 7T. SWI - a 3D gradient echo sequence developed to enhance the basic MRV machine used commonly.

Here is the link to the 7T scan - some pics of results... summary is complicated to understand.

But all-in-all and why this sucks that the 7T is the best scan out there for CCSVI - this scanner is RARE, large and expensive. - Deemed useless to everyday hospitals... Reason why studies will take so long.

-Do not use a stent! Mom, as I was telling you on the phone, what they have stents in use for now are not vascular vein friendly... therefore there are risks. It would be like using a hammer when you need to screw something into a wall; it just doesn't fit.

-Ok, so this is one thing that I found very interesting. Through clinical studies they found that there are different patterns for CCSVI in MS; 4 to be specific… or what they have found so far. Basically they show 4 different ways the blood is cut off / flowing in the wrong direction. Some veins are half closed, blood flowing half right and wrong… one vein closed, the other open, so the blood isn’t balance… etc.

This got me thinking – Could this be why we see different types of MS and so many types, varieties, and severities of symptoms from one person to another?? - makes sense doesn’t it? And also makes it extremely hard for someone to PIN POINT what happens during MS because it varies so much from patient to patient. No ones veins are alike and no ones MS is alike… Almost safe to say that pin pointing one cure could be impossible in our life time. Which makes more sense for people to act NOW!

-Another thing that was interesting in their results of the studies:

• Patients with PPMS had a higher rate for CCSVI; they were more frequent than patients with RRMS. ... Why this could be? I’ll tell you my thoughts soon.

In reference back to the 7T scan – in Buffalo, for the clinical studies, this is what they used – which is really good! ...minus the fact that they had 1700 people and only 50 people “Pediatric MS” – silly.

Here are some of their results:

• With a 7T scan – it shows 20% more lesions in the brain than the normal type of scan used. The doctor said it would take years for researchers to be approved this kind of scan… not to mention having to go to school for using it properly.
• They found, so far, that there are 3 different types of lesions found.
• The 7T has the ability to show exactly where the iron deposits are and where the blood is no longer flowing – this helps in pin pointing what section of the brain is most damaged due to the veins… meaning they can get a better result in knowing what veins are critical for being opened.
• About the iron deposits (lesions) that’s sad… even though all the theories brought up with this CCSVI, it’s still medically “unknown” why the lesions happen… and this – will take many years to figure out as MS is not the only disease that gives a person lesions in the brain. Which comes to my next point...
• The Dr. highly suggested that iron related research needs to be done that has nothing to do with CCSVI… Much reason to support this. Compare an old person to someone who has MS – what are the common factors: Both walk slowly… well, is this because elderly people may be forming lesions/iron deposits in their brain??? Maybe when a person gets old there veins aren’t as strong and begin to collapse?? Like I said Mom, so many questions… so much research to do.

They did CONCLUDE that the more iron found in the brain – the more disability, which brings me to what I said before about the PPMS and RRMS. Because the rate of CCSVI is higher in PPMS patients than RRMS patients – this SHOULD, theoretically, mean that people with PPMS have MORE iron in their brain… which, again – got me thinking… I always found it odd that people with RRMS receiving stem cells had such drastic change that, well, lasted longer than you, Mom. If you sit and think about it’s because they have LESS damage to REPAIR. There are facts that I think are correct; just from what I’ve seen dealing with this for the past years.

Well – that’s all I really got out of it… feelings of frustration were most prominent

All - in - All

I am pro-poland!

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I received positive feedback from Haley, which helped.

That email was
so interesting! You are such a good writer. It sucks that this is going to take
so long. And I think your theory is right about the PPMS and the stem cells… it
makes a lot of sense!!! I just pray and pray and pray that Poland treatment does SOMETHING.

Thank you.