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Posted: Mon Sep 27, 2010 6:23 pm
by nicknewf
So how was your neuro appointment? Can't wait to read the story.

My wife had her treatment today, and is doing well. Sore azygous, sore neck. All three ballooned, no stents, no miracles, mild symptoms anyway. See how it goes in a few weeks.

Posted: Mon Sep 27, 2010 7:14 pm
by cheerleader
FlashHack wrote: But, my main problem was in the azygos and that chart was directly to the right. Holy cow! Of the 56 patients where Zamboni found problems in the azygos only one restenosed at 6 months (one other had to be stented right out of the gate, the only stent Zamboni used)!! That means 96% of the treated azygos veins stayed open. So if your problems are limited to the azygos, as mine were, you don't have to worry much about restenosis. Whew!

I'm sure that most of you already saw that, but I hadn't and so I thought I would mention it in case someone shared my ignorance.
Yup. You mainly azygos folks have won the lottery :)
I remember thinking, when I heard Zamboni present the 96% figure in Bologna...well, your MS course is tougher with azygos involvement, but the repair is easier! And it holds.
breath easy and keep healing, Flash--

Posted: Mon Sep 27, 2010 8:25 pm
by FlashHack
Thanks, Cheer!

Well, I saw the head of Neurology at OHSU today. I related to him all of my improvements and he recorded them in my chart. I described my procedure and where the doctor had found stenosis. I asked him if he had altered his position on Zamboni's theories. He said he had not and then asked me if I had heard of the two studies that used Zamboni's scanning protocols but couldn't reproduce his results. Disappointing, but not surprising.

He was glad to hear that I was participating in one of the gait studies they are doing. He also told me that he wouldn't charge me for my next appointment if I still didn't have insurance. He also asked if I wanted to get back on Rebif (I stopped in June). No thanks, doc!

I will see him again next May. While I hope that he changes his thinking by then, will it really matter? Will the Interventional Radiologists at OHSU continue to cow-tow to Neurology while their colleagues at other hospitals are doing procedures and validating Zamboni's findings?

One upside was that before I saw the doctor I did my thing with the gait study. On each 6 month visit they have you fill out a survey about your MS. The last question asked you to describe your disability progression by selecting one of several charts. Each chart had time moving from left to right on the X axis and disability on the Y axis. Of course on each chart disability increased over time in different patterns. I cheerfully told the researcher that I couldn't choose any of the charts because my disability line was now going the other direction.

Re: FlashHack is Liberated

Posted: Tue Jun 03, 2014 10:14 am
by FlashHack
I'm way overdue in posting an update on my condition.

I walked into my July 2010 CCSVI treatment using a cane for balance and left not needing one. My symptoms continued to improve for about 12 months. Then half of them started getting worse, mostly dealing with my lower extremities (numbness, stiffness, tingling, and fatigue). My balance, headache, urinary, and visual disturbances kept improving. Eighteen months post procedure I was back to using a cane anytime I left the house. The distance I could walk slowly shrunk until, by the end of 2013, 100 yards was as far as I could manage without sitting and resting. I purchased a manual wheelchair in November 2013.

In August 2013 I was introduced to a local physician with MS who had undergone a treatment called Hematopoietic Stem Cell Transplantation (HSCT) performed by a Dr. Richard Burt in Chicago at Northwestern Memorial. It involves harvesting your stem cells, killing your immune system with chemotherapy, and then rebooting your immune system with the harvested stem cells. A radical treatment indeed, but this physician was 2 years post tx and had seen tremendous improvements in his symptoms. I wasn't sure how I felt about the whole thing since HSCT fully embraces the "autoimmune theory" of MS and I had wanted so badly for CCSVI to be the solution to this terrible disease.

Despite my reservations, my accelerating deterioration made me cast them aside any reservations and embrace the opportunity to receive HSCT for my MS. Over the course of January 2014 through March 2014 I had my stem cells harvested and underwent chemo therapy to destroy my immune system. On February 24th I received an infusion of my own stem cells to reboot my immune system. I spent the next two weeks in isolation as my hair fell out and my immune system rebooted.

Within 2 days of having my immune system destroyed by the chemo drugs, I started getting feeling back in my toes. I had not felt them for a good 12 months. Because I could feel the bottoms of my feet again, my balance has improved dramatically. It has now been three months post treatment and my legs continue to strengthen gradually. I can now feel muscles in my legs, buttocks and lower back that were all but gone. My wheelchair is beginning to gather dust.

My mind is trying to reconcile my own experience and what I know of MS and CCSVI. Venoplasty of my stenosed azygos vein helped me but did not cure me. Is this because by the time it was fixed my immune system had already become programmed to attack my myelin? I'm now pretty convinced that this is the case. MS is a vascular condition that converts to an autoimmune disease. Once this conversion happens, fixing the veins can only do so much. The vascular part explains some of the symptoms and also provides the missing genesis for the well documented autoimmune condition. It lines up with the animal models for MS which, as I understand, involve injecting ground up myelin combined with an "agimen"(sp?) into the CSF. This agimen is basically a foreign agent or pathogen that triggers the autoimmune response. I am guessing that is why so many MS studies find links to things like Epstein Bar and other blood born viruses/toxins that essentially serve as the agimen. It would also explain why some people can have stenosed veins but never develop full blown MS.

Anyway, I wanted to throw this information out there in case it inspires others.

Incidentally, the HSCT treatment cost almost $200,000. Remarkably, my Blue Cross insurance picked up the tab without complaint.

Re: FlashHack is Liberated

Posted: Tue Jun 03, 2014 3:45 pm
by NHE
Thanks for the update. Do you know the current status of your veins? Are they still patent?

Re: FlashHack is Liberated

Posted: Tue Jun 03, 2014 9:30 pm
by FlashHack
I'm actually pretty sure that they are. I had several symptoms that resolved after ccsvi surgery and have not returned. My only stenosis was in my azygos which has a high patency rate.

Re: FlashHack is Liberated

Posted: Wed Jun 04, 2014 4:50 am
by Cece
FlashHack wrote:Incidentally, the HSCT treatment cost almost $200,000. Remarkably, my Blue Cross insurance picked up the tab without complaint.
8O That's amazing.
Great to hear that you're on the upswing.
A one-two punch to MS might be what you've done: take care of the veins, wait to see if the aberrant immune system settles, and if it doesn't, then hit it with something like HSCT.
The reason the azygous vein responded so well to treatment in Zamboni's research might be that it is a smaller vein, and Zamboni was using smaller balloons, and so the fit happened to be better. This compares to the jugular veins, where Zamboni was using a 10 mm balloon despite the jugular veins being in some cases significantly larger.
If you haven't had a venogram since 2010, then I am going to go with missed jugular stenosis as a possibility that has not been eliminated.
I do agree that if abnormal immune function has been triggered by CCSVI, then treating the CCSVI does not undo that in everyone. In the future, this could be prevented by treating CCSVI before MS even gets a chance to start. To the future.

Re: FlashHack is Liberated

Posted: Wed Jun 04, 2014 6:11 am
by FlashHack
Dr. Siskin was quite thorough. My jugs were fine, but he ballooned them anyway. Also went all the way up near my eyes. I'm quite confident that I didn't have jugular stenosis.

Re: FlashHack is Liberated

Posted: Thu Jun 05, 2014 1:30 pm
by dlynn
Here is a very interesting article on chemo. ... rophy.html

Re: FlashHack is Liberated

Posted: Fri Jun 06, 2014 12:11 pm
by RCC
Hi FlashHack,

I wish you well on your recovery! Try to avoid people that have negative things to say about your course of action, it does not help.

Re: FlashHack is Liberated

Posted: Fri Jun 06, 2014 2:22 pm
by dlynn
If you are referring to the chemo article, what interested me was towards the end, is very helpful information
regarding healing the body and staying healthy after chemo. If not, please accept my apology. And FlashHack,
I wish you all the best.

Re: FlashHack is Liberated

Posted: Tue Oct 07, 2014 1:54 pm
by FlashHack
Wow. Okay, I just now bothered to click on the link posted by RCC. What a bunch of hooey. This kind of thinking is precisely the problem I was highlighting. People can't wrap their heads around MS being both a vascular and an autoimmune disease and so you get this kind of hogwash.

Had my 6 month checkup in Chicago. No new lesions on the MRI. No relapses. EDSS is noticeably decreased. More importantly, my legs and hands are getting stronger every day. My balance is quite improved and my wheelchair continues to gather dust. I can't understand why HSCT is flying so low beneath the radar. I was circling the drain and now I am starting climb back out.