Thursday, July 29, 2010

International Society of Neurovascular Disease

International Society of Neurovascular Disease formed this past week at the CCSVI Symposium on July 26 in NYC if you missed it (a scientific organization to study neurovascular disease)!

Then i ran to the stores to get breakfast and lunch for a group of us who were going to work on setting up the ISNVD, the International Society of Neurovascular Disease, a scientific organization to study neurovascular disease. We agreed that all NV disease would be our focus, but that ccsvi would be a particularly detailed focus early one. We need to organization to focus research, to share that research and to create consensus. Also attending the meeting were robert zivadinov, mark haacke, david hubbard and mark Godley and fabrizio and his assistant Alarea. On the conference call were franz shelling, paolo, and someone whom i do not know. finally mike dake made a short communication but was on vacation at this time and left early.

So we now have an academic voice. Paolo will be the first president. This will be good.

Monday, July 26, 2010

CCSVI.ORG has launched!

This is one of if not the best CCSVi resource on the web. Dr. Haacke and others have done a tremendous job on getting this up and running. Congratulations.

Pass it along!

Friday, July 23, 2010

Liberation Treatment (personal report)

A friend of mine was liberated on Tuesday! I thougth some of you would be interested in her progress over the first 24-36 hours. Awesome stuff! I can't wait for my turn!

First 24 hours:

Last night right after procedure "can tell you that my right leg feels the same as my left leg for the first time in years" 

This am "I think my vision is clearer as well! Am not fully awake yet, but my head doesn't feel as foggy as it usually does...YEAH

WOW, that's all I can say. OK not really.... My leg still feels back to normal! And we had breakfast outdoors overlooking the beach...and though it was VERY hot, I am absolutely fine!!! Previously, it only took 5 mins in heat or sun to have the optic neuritis kick in and just plain wear me out and would take hrs to recover.

36+ hours:

The appt with the neurologist went well. She said in some areas I was completely back to normal…I did not fall over with my eyes closed, feet together and head back…which I did the previous day. They time how fast you can walk certain distances, move pegs to and from a magnetic board….and all those areas had improvement. My heat intolerance has improved 10 fold. We spent 2hrs sitting on the beach…during the hottest time of day! Luckily found some shade. But even so…I am not totally wiped out. And my optic neuritis didn’t kick in because of the heat. It may not sound like lot, but man…it really is a huge change! 

Wednesday, July 21, 2010

Thoughts CCSVI, Fund Raising and Friends

Quick update on things.

The fund raising is going well. I am very humbled by the people that surround me in my life. I can't find the words to express my gratitude or thank everyone enough. Thank you all for getting involved, fund raising and donating to help me get my treatment. With your continued help I am going to get the money needed to pay for this treatment!

I would also like to thank everyone that is helping me spread the word on CCSVI and MS. CCSVI is such a huge help for those with MS. The "people" spreading the word seems to be the only way to get the word out these days in the US. It's very unfortunate. I still hear of, or talk to people that have never heard of CCSVI and thats a sad sad situation. Please check out the new 3 days post CCSVI video I added to the left. Keep spreading the word!

One of my FB friends has the procedure last night and is doing well. She was very tired last night so her report was understandably short after the procedure. A quote from her initial report "can tell you that my right leg feels the same as my left leg for the first time in years!". I can't wait to hear how she is today and how things progress the next few days and weeks. Very Exciting.

As far as I go.....still awaiting my phone call from the doctor... Waiting is really hard. No definitive treatment date, no date for the phone call to come...its a killer. I will let everyone know what's going on as soon as I know.

Thanks  again for all the support and continued help. There is no way I could get through this without my wife, family and all of you.

Wednesday, July 14, 2010

HOTEL ON RIVINGTON in NYC! Fund Raising Auction

Hey everyone I wanted to pass this along I was lucky enough to have someone donate a 2 day stay at this hotel. I added it to the site.

Fundraising auction has been added at! 2 nights in NYC at the 21 story glass towered Hotel Rivington. Voted the Best Hotel in NYC by the London Times. King Room complimentary of room and tax charges. If you know anyone who is going to be taking a trip or wants to visit NYC pass it along. This Hotel is AWESOME!

Sunday, July 11, 2010

Professional CCSVI Symposium: Monday, July 26 in NYC!

Some highlights on the info.

Patients---please refer your IRs to this upcoming conference:
The Departments of Radiology and Neurology of SUNY Downstate Medical School in Brooklyn, NY, are pleased to sponsor a symposium on the treatment of Chronic Cerebrospinal Venous Insufficiency (CCSVI) on Monday July 26 at 9am in the Alumni Hall of Downstate's Educational Building.
We are pleased that Dr Fabrizio Salvi, Dr. Zamboni's neurologist partner, will attend this meeting. Also reporting their experience will be Tariq Sinan, the interventionalist who leads the Kuwaiti National Trial, Gary Siskin of the Albany Medical Center and Salvatore JA Sclafani of Downstate.
The goals of this conference will be to review the concept of CCSVI, ,to illustrate the various imaging modalities and to describe the techniques and challenges of the procedure.
The audience is encouraged to bring Powerpoint presentations of interesting or challenging cases to share with the audience during our final session
The seminar will occur on July 26 beginning at 9 am. There will be no charge for registration. Please email if you plan to attend so that space will be reserved.

Click the title above for the full info on Facebook.

Wednesday, July 7, 2010

My start with CCSVI and the Liberation Treatment

As some of you know I started on the path to getting the Liberation Treatment. The updates I post will help you learn more about CCSVI and the procedure, and might help those who are undecided whether or not to pursue treatment. However, because of the United States' stance (don't get me started) on CCSVI and the Liberation Treatment, information like the exact location(s), doctor(s) etc. will be kept VERY general.

My current MS related issues are: extreme fatigue, temperature intolerance (hot & cold), cognitive lapses, optic neuritis, leg cramps, numbness, shooting pain, diminished skin sensitivity. Everyday is a new day with varying issues from this list. Most of you with MS already know waking up everyday there is a period of self examination to sort out what type of day it is going to be.

It was a long process for me to sort out if I wanted to have the treatment or not. My wife and I have done extensive research on it and I have given it a ton of consideration (understatement). The sooner you are treated the better. Waiting to decline and experiencing more issues serves no purpose whatsoever. Angioplasty is done every day all over the world. I suspect some might be hesitant or scared to some degree. Personally, the *scared* part can't come in to it. I do have my have second thoughts, but all of it needs to be put aside so I can move forward. This "procedure" will help me, my everyday life and my wife (how she does it, is amazing). That's what matters.

Below are the landmarks so far.

6-14-10 marks the first steps taken towards CCSVI testing and treatment. Have to say I was a bit nervous about getting things going. I called the doctor and have been put officially on the waiting list. I should hear back from the office within 72 hours.

6-17-10 I received a call from the doctor's office (more nerves). They recorded all my information and will investigate whether the procedure might be covered in part by my insurance company. There are few insurance companies covering the necessary tests and treatment for Venous Malformation (NOT MS) at this time. I find it really disappointing that someone can walk in off the street with vein and artery issues and be treated, but if the words MS come up it's forbidden. The doctor will call personally in 3-4 weeks to discuss the process in depth

7-6-10 I received an email confirming my place on the waiting list. Next up will be a phone call from the doctor with the exact date for my treatment!

To help me afford this treatment I put together a new website, My purpose in developing this site was twofold: to help people understand CCSVI as well as to raise money for my own Liberation Treatment. Please check out the CCSVI section, there is a lot of good information, videos and links. I will be updating it constantly.

I want to thank everyone who has already shown extraordinary compassion and generosity.
I absolutely could not do this without you.

Please feel free to contact me any time with any questions you may have on CCSVI or what's going on with me on my journey.