Saturday, December 4, 2010

N.Y. Trip.....the good ..the bad...and the ugly...

River feeding the lake. Man I miss the water.

Well I am back at the homestead. Tired, getting organized and catching up. Finally I have been able to sit down and put my thoughts down on my trip to N.Y.

As most of you know I left on Saturday the 27th. We left a few days early (appointments weren't until Tuesday). I really wasn't sure how I would do traveling in the car for 11 hours, no less driving parts of it. The drive up went really well. I was able to stay focused and get in about 5 hours of driving time. We switched over and I really felt pretty good so we decided to keep on going. With the excitement of seeing Dr. Siskin, my family and all our old friends I was pretty amped up. The weather was clear until we got to Oneonta. N.Y, where we were welcomed back with snow, white-outs and crazy ass truck drivers. Nothing like the Northeast in winter! Oh, and CPK, Jersey was no better…:P

We made it to Wells N.Y in pretty good time considering the snow we went through. 
Yeah, snow...ughh.

The lake.
Coffee shop at Dr. Siskins
It was great to meet up with Mark and Pat and cruise around the old home area. It's amazing the simple things you never think about once you are away. We really miss the lake and the water. I was a bit surprised at how flat things seemed in the Adirondacks. There is nothing like hanging out with old friends for a few days, catching up, laughing our asses off and having a blast. Special note: Jack, thanks for not chewing may arm off…lol (Mark and Pat's dog).

On Monday we headed down toward Albany and get ready for my appointments. We met with Barbara to go over the paperwork and get the details of the research trial. Dot the Is, so to speak. The facility was amazing and Barbara was very nice, funny and extremely helpful. Next was the ultrasound. The technician was from my mother and father's old stomping grounds, so conversation was easy. I appreciated her heating up the gel :). Of course she was not allowed to say anything about the test. This was the first of 3 areas I could have been excluded from the trial. If the test didn't show anything I was out, which makes sense. No problem, nothing to fix. This is where the nerves seriously started to creep in and my blood pressure went up. Once I finished, we met Dr. Siskin. 

Dr. Siskin was, well awesome. Very easy to talk to and very down to earth. We went over my positive test, yes, positive! I will be making another post(s) later about what we learned here. We went over everything he saw from the test and discussed ultrasounds in general. Personally, I am not a huge fan of this as a test for CCSVI as its not as conclusive as I would like to see. Venograms are the way to go. Dr. Siskin agreed to advance me to the next stage (the neurologist). Two down and one to go.

One last appointment, here come the nerves. I forgot about the traffic during rush hour on the Northway in NY. What a joy to have to deal with. Thank goodness it's not a daily event anymore. We arrived at Albany Med and to my surprise, valet parking at neurosciences is FREE! WHAT? Of course you have to tip them, it's only nice. Check in at the desk… I am sorry I don't see you on the list of appointments…do you have paperwork showing your appointment? Showed the paperwork, a phone call and all was fixed. A bit of a wait. After meeting the neuro I learned that she knew she would be late and tried to get a hold of us. I am not sure how they didn't as everyone had our cells and we rolled over our house nubbier to my wife's cell. The neuro was, well very neuro like (not is a good way). Not very personable, not wanting to answer questions and seemed to concentrate only on what she needed to do to get through what she had to, to satisfy the trial paperwork. She reminded me a lot of the head of neurology at Baptist here in NC, here is your number. After going through everything… I did not meet the necessary requirements to participate in the research trial… WTF…after all this.

To say I was disappointed, mad, and disgusted is an understatement. All this effort, time, travel, expense, and it was over just like that…

I realize the requirements are what they are and they are there for a reason. I didn't want any changes to be made or anything to be manipulated. But shiz what a back breaker at the eleventh hour.

So now what, where am I , what does this leave me? What do I do now? Well, it's a simple answer actually. We spoke with Barbara and she assured us I am still on the waiting list with Dr. Siskin for treatment. I now know I have a problem of some kind that can most likely be addressed by the surgery. So I regroup, gather myself up and hope everyone can put up with a little anger and disgust for the next couple weeks (Sorry Anne….love you). Back to waiting on the phone and raising a bit more money. Now I definitely will be going the original route, having to pay for everything.

I want to thank everyone for their support and all the helpful conversations. My road is by no means over. We just have to take another turn.

More soon…..

Monday, November 22, 2010

T-Minus 5 days

Well 5 days until I am off to N.Y. Getting things ready as I write this. We are driving up this time. Being that I am not sure how I will be on such a long trip we are leaving plenty of time. Have to be up there Monday, get a good nights sleep and it all starts on Tuesday.

Tuesday     11/30
8:15 am  Research Consent 
8:50 am   Ultrasound
9:30 am   Appointment Dr. Siskin

Wednesday     12/1
 8:45 am  Appointment (neurology)

From there I would guess we schedule the date for the venogram and the treatment (real or not).

Starting sometime on Saturday I will keep a running report and will touch base as often as I can keeping you all up to date with news, pictures, and what ever else may come up.

Thanks again for all the support and well wishes along the way. It means a lot. we go!

Thursday, November 11, 2010


As most of you know I have been researching as much information on CCSVI and the liberation treatment as I can and how it relates to MS. I was so blown way by everything I saw, the videos, talking with people and what I read about that on the second week of June I decided to move ahead and get the treatment. I called and got on Dr. Siskin's waiting list  and I put up I have been waiting for news and my date ever since.

During my months of waiting and with my resolve intact a few new things came up involving CCSVI and MS. First was the HUGE snowball of what this treatment was doing for a lot of people with MS. Then all the great videos people have continued to put up. Some of the before and afters involving treatment are truly unbelievable. People are getting help even while the neurologists, pharmaceutical and others fight against CCSVI, its correlation to MS and the people getting treated. Please keep in mind not everyone with MS has CCSVI and not everyone is helped with the angio treatment. The percentages though speak for themselves…..

I was really disheartened by what I saw the US doing because of what I will call the "medical business influences"  Very little, to no press coverage to speak of and then out of no where things have started to take off. Press coverage, newspapers, TV news, and of course the internet. While not huge public push via the news a great start. Then the US entered into double blind studies seeking out people with MS to participate to help determine if venous angioplasty is an effective treatment for chronic cerebrospinal venous insufficiency.

After a serious look at everything about the trials, bouncing all the pros and cons off my wife, I have decided to take part in the trials that Dr. Siskin is undertaking in Albany N.Y. While it does have the possibility of putting off the actual treatment for me for a year or so,  I personally think this is bigger than just me and it's the right thing to do. These trials have to happen, they have to have the volunteers and they have to be done yesterday so everyone suffering can be helped and can get what they need. So with the help of my Facebook family and the information supplied here (Click Here) I got involved and signed up.

On Thursday November 4th I got a call from Dr. Siskin and we went over all the preliminaries, information on the trials and my history with MS. After we talked I was even more eager to get involved and take part. Tuesday the 9th was when I first talked with Barbara and started to schedule dates and times of what will happen and when.

I will be starting everything on the week of November 29th. There will be several appointments, evaluations and the test(s) over that week. Barbara wanted to talk with Dr.Siskin about the specifics and to see if we can fit the procedure in with all the other stuff with one trip. I should know more about that by the end of this week. Once I have all the specific times and dates I will get you all my plans. I also plan to have updates and pics of everything as it happens for everyone so keep an eye out as things get closer.

Very exciting! 

A couple notes:
Congrats go out to Bill for winning the Sedona Auction. 

If you have an extra $5.00 please take the time to donate to the trials. Denise is doing a great job at keeping this organized and we are getting closer to our goal. Click Here

Monday, October 4, 2010

Update October 4th 2010

(Montana & Daisy in the pasture)

Hey all its been some time since I have let you know how things are and what's happening with my treatment, CCSVI in things in general, so here we go.

As far as I go I am doing OK. Rough month or so overall. My apologies if I haven't been myself and been in touch as much as normal. For the most part I have been having the "Normal Dave" issues which seem to be for varying degrees and longevity. The list for the last month or so is the dreaded extreme fatigue, heat issues (MUCH better with the weather change), optic neuritis (creeps in/out), cognitive issues and of course the sore/cramp like symptoms I sometimes get. I also seem to have these rare flare-ups what I can only describe as bone aches and pains. It feels like all my bones hurt and everything is rubbing on each other. The symptoms seem to last 2-3 days, give or take. This has happened to me 2 or 3 times over my time with MS. Pretty uncomfortable as you can imagine. Just have to weather the storm and try not to get PO'd about it. Other than that I think the weather change in general will do me a lot of good. Time to get out of the house!

A lot going on in the world of CCSVI. Two US (yes that says US!) double blind studies have started on the correlation between CCSVI and MS. Hundreds of people will be taking part between the two studies. This is VERY important for MS suffers and can't move along fast enough. If you are looking for details or want to get involved get in touch with me. Personally I am doing all I can do to get involved and help. I haven't gotten complete confirmation but it appears I may be taking part in one them. Again as with the procedure appointment this appears to be another waiting game for the "phone call". When will the waiting be over ....ugh... frustrating?

The basics purpose of these studies:
The study is being done to determine if venous angioplasty is an effective treatment for chronic cerebrospinal venous insufficiency (CCSVI). In this condition, areas of narrowing or blockages are present in the internal jugular or azygos veins (veins which drain blood from the central nervous system) and these blockages may be associated with symptoms classically attributed to MS. Therefore, angioplasty may help to improve the symptoms associated with CCSVI and multiple sclerosis (MS). In this study, the investigators will evaluate the effectiveness of angioplasty in the treatment of CCSVI by comparing two the outcomes of two groups of patients: one group with CCSVI diagnosed on a venogram and treated with angioplasty and one group with CCSVI diagnosed on a venogram but not treated. The patients enrolled in this study, and the neurologist evaluating patients after the procedure, will not know whether or not they were treated with angioplasty.

Thanks to everyone who has chosen to help. The words don't seem to be enough. I haven't reached my goal and I am still working hard to raise money. If you missed it the NYC auction ended and we have a new one for a 4 day stay in Sedona. This hotel and area are unbelievable. If you know anyone who may be interested you should let them know. This auction will be up on November 5th. Check it out at Any help is greatly appreciated.
I know a lot of you donated to my treatment and is GREATLY appreciated.  A few of us involved on the trials are also trying to help raise some funds for help there as well. If you can spare $5 please help with this drive. Got to and make a $5 donation.

I will cut things here as to not make this to long. There is more I will post in a week or two. Great things going on out there! Keep spreading the word on CCSVI.

Monday, September 13, 2010


First, I would like to congratulate Mike on winning the Hotel Rivington auction for NYC, it's an awesome hotel! Thanks to everyone who bid and took part in the event. Mike is sure to have a lot of fun in NYC.

New auction I was lucky enough to receive last Friday. It's for 4 night suite at the Sedona Rouge Hotel and Spa. This auction will be up on Friday the 5th of November. Please don't wait until the last day, last night etc., as I had several people send in some bids after the Rivington auction was over and they missed out. If you know of anyone who may be interested please pass this auction along. This is another spectacular hotel. All the specifics are here: Good luck to all!

Thursday, September 2, 2010

CCSVI Lecture by Dr. Andrews (part 1 of 2)

This is a 29 minute lecture that reviews MS, CCSVI, and the literature that supports the CCSVI concept.
Excellent reference for doctors or patients who have no background with CCSVI at all.
Well done!
Click the title above for the link.

Tuesday, August 24, 2010


I have come across a bit of information on some venous stents that I wanted to forward to everyone. While not a solid solution yet for CCSVI it's obvious things are moving tin the right direction.

WALLSTENT® Venous Endoprosthesis with Unistep™ Plus Delivery System
What is it? The WALLSTENT Venous Endoprosthesis (WALLSTENT) is an implantable stent, an expandable, tube-like scaffold that is mounted on a flexible wire called the Unistep™ Plus Delivery Catheter. It is used in hemodialysis patients who have a blockage in a major vein near the heart called a central vein. This blockage could lead to failure of the graft that allows the patient to be connected to the dialysis equipment. The WALLSTENT is threaded into the narrowed portion of the vein, where it expands and holds open the vein's inner walls. The larger opening allows an increased flow.
From Boston Scientific on this stent: 
Wallstent® Venous Endoprosthesis with Unistep™ Plus Delivery System 
The Wallstent Venous Endoprosthesis is indicated for improving central venous luminal diameter following unsuccessful angioplasty in patients on chronic hemodialysis with stenosis of the venous outflow tract. Unsuccessful angioplasty is defined as residual stenosis ≥ 30& for a vein ≤ 10mm in diameter or ≥ 50& for a vein > 10 mm in diameter, a tear which interrupts the integrity of the intima or lumen, abrupt lesion site occlusion, or refractory spasm. The vessels that can be treated with the Wallstent Venous Endoprosthesis are the innominate and subclavian veins, ranging from 8.0 mm to 15 mm in diameter. 

This particular stent has been in use for years. This recent FDA approval was only for two very specific veins at the subclavian level. 

Wallstents are made of stainless steel, meaning that any patient getting them would not be able to undergo MRI studies after implantation, not a good thing for people with CNS problems. Article:

Additional information: Summary of Safety and Effectiveness and labeling are available at:
Stentys self-expanding stent Video:
Interventional Radiologists have recently reported to patients that there are even newer stents with even greater radial pressure. Reminding patients that stent placement is rare anyways.

Tuesday, August 17, 2010

CCSVI Touching Base

Well its August 17th, two months since my initial phone call to the "clinic". I still haven't heard anything from them. I have been keeping up on others making first contact, getting scheduled and having the treatment. It appears the line has gotten very LONG. On a bothersome note it also appears I may be waiting longer than I anticipated but no one really knows (UGHHHH). Waiting and not knowing is a real killer.

As far as my MS goes the summer has taken its toll on me. My heat and fatigue issues are what I will rate a 8 out of 10. Definitely the worst they have ever been. I have very limited energy these days and NO heat tolerance at all. 15-20 minutes in the heat and I am done. Everyday seems like a test these days.......can be a bit frustrating.

On the medical side of my life I am off to see my Atlas Orthogonist tomorrow (awesome) and I am going for my 6 month to my neuro next week. In addition blood will be taken this week so they can test all my levels.

The fund raising is moving ahead and I can't thank everyone enough that has gotten involved. Keep an eye out for information on the Sedona, AZ hotel auction. It will be going up very soon! It will be very similar to the NYC one but 4 days!

More soon keep the emails coming everyone its great to hear from everyone.

Monday, August 2, 2010

FARMVILLE FREAK has joined in to help me raise money for my treatment and well as raise awareness on CCSVI and Multiple Sclerosis. I can't thank them enough for the generosity and support!

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.

Monday, June 28, 2010


I have to say I am in total shock that the NY TIMES has picked this up and is reporting on CCSVI!

Is this a turning point here in the US press?


Clinical trial in Buffalo start 'Liberation Treatment'

I applaud the BNAC and their continuing efforts to get this done. It's great to see people stepping up and getting this work done in some kind of timely fashion!

Now on the other hand there is the US press. ZERO coverage of this. Other countries are reporting away on it. Unfortunately for us the pharmaceuticals run the US.

Researchers at the University at Buffalo are about to launch North America's first clinical trial to test the said...
iberation treatment," an experimental therapy designed to halt the symptoms of multiple sclerosis."

CMAJ Editor-in-Chief Dr. Paul Hebert and Deputy Editor Dr. Matthew Stanbrook note that several MPs in Ottawa have recently lobbied the federal government to invest in research into the controversial treatment. They note, as well, that patients have held well-publicized demonstrations, demanding access to the liberation procedure -- which they applaud.

Patients should insist on evidence. They should also insist on having their views represented when decisions about where to spend research dollars are made, said...

Entire Article

Wednesday, June 23, 2010

CCSVI Treatment update.

Just a quick note for those looking into the procedure and having it done. The "doctor/facility" I am involved with has just changed there process for bringing people in and scheduling them. Prior to this you called, got on a waiting list, the facility called (within 72 hours) did the preliminaries and then the doctor would call you 3 -4 weeks later to go over all the specifics and any questions. Since there had been a HUGE influx of calls up to 60-70 a day now. They have changed the procedures a bit. At the doctor call stage you will now get an email and the doctor will only contact you once you have a date for treatment.

There are several reasons for the change. The obvious is the huge amount of calls. The second is people taking up large amounts of time only to cancel out because they have found an alternate option for treatment. I am not sure why people would want to waste the doctors time like that but I can fully understand the doctor needing to prioritize things. I would expect him to adjust things to deal with the people he will actually be seeing.

Friday, June 18, 2010

CCSVI and MY Liberation treatment (YES MY!)

BIG news for me I have started the process to get the Liberation Treatment. I have gotten on the "list", I have discussed the preliminaries with the facility, and am awaiting my phone call from the doctor. Now with every step there is a waiting period but I have lots to do and lots to fill you in on. This is a VERY exciting time for me.

I will be launching a new website very soon that will help people learn about CCSVi, the site will also have information on my treatment and chronicle every step of what is going on with me and how things have effected me. My blog will be the day to day source for me and have the most in-depth information. It will become a main extension of my new site.

More on CCSVI, my new site and of course how everything is effecting me very soon.

I wish everyone the best and appreciate all the well wishes and help.

Sunday, June 13, 2010


This isn't my story but it hits home and is so true....

My best friend and I were in the diner talking. As usual, it was very late and we were eating French Fries with gravy. Like normal girls our age, we spend a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spend most of our time laughing.

As I went to take some of my vitamins with a snack as I usually did, she watched me this time with a kind of start, instead of continuing the conversation.She then asked me out of the blue what it felt like to have MS and be sick. I was shocked, not only because she asked the random question but also, I assumed she knew all there was to know about MS. She had come to the doctors with me, seen me getting MRI's, she saw me stumble on sidewalks and have to sit down at a concert. She carried me out when I couldn't walk another step, what else was there to know?

I started to ramble on about the vitamins and the changes but she didn't seem satisfied with my answers. I was a little surprised as being my roommate and friend for years; I thought she already knew the medical definition of MS. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no healthy person can truly understand. She asked what it felt like, not physically, but what it felt like to mehaving MS.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least a stall. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a person with MS goes through every day with clarity? I could have given up and cracked a joke like I usually do, and changed the subject, but I remember thinking if I don't try to explain this, how could I ever expect her to understand? If I can't explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the "spoon theory" was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked her in the eyes and said, " Here you go, you have MS." She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked together as I shoved them into her hands. I explained that the difference between having MS and being healthy is having to make choices, or to think consciously about things when the rest of the world doesn't have to. The healthy have the luxury of choice, a gift most people take for granted.

Most people start the day with an unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to take away, since most people who get MS feel the "loss" of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case MS, in control.

She grabbed the spoons with excitement. She didn't understand what I was doing, but she is always up for a good time. Little did she know how serious the game would become?

I asked her to count the spoons. She asked why, and I explained that the spoons represented units of energy and when you are healthy you expect to have a never-ending supply of "spoons." But when you have MS and you have to plan your day, you need to know exactly how many "spoons" you are starting with. It doesn't guarantee you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started the game yet. I've wanted more "spoons" for years and haven't found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has MS.

I asked her to list off her day, including the most simple tasks. As she rattled off daily chores, or just fun things to do I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said, "no, you don't just get up. You have to crack your eyes open and then realize you are late. You didn't sleep well the night before. You have to crawl out of bed, and you have to make yourself something to eat before you do anything else because you have to take your vitamins and have energy for the day and if not you might as well give up on spoons for the whole day!" I quickly took away a spoon and she realized she hasn't even gotten dressed yet. Showering cost her another spoon, just washing her hair and shaving her legs. Reaching too high or low, or having the shower water too hot and choosing to blow dry her hair would have cost more than one spoon but I didn't want to scare her too much in the beginning. Getting dressed is worth another spoon. I stopped her and broke down every task to show her how every detail needs to be thought about. You have to see what clothes you can physically put on, what shoes are going to be appropriate for the days walking requirements, if pain or spacticity is a problem, buttons are out. If I have bruising from my medication, long sleeves might be in order. You cannot simply throw clothes on when you have MSits just not that easy.

I think she started to understand when she theoretically didn't even get to work yet and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your "spoons" are gone, they are gone. Sometimes you can borrow against tomorrow's "spoons" but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who has MS lives with the looming thought that tomorrow may be the day that a fever comes, or an infection, or any number of things that could prove disabling. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn't want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of the real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing on her computer for too long. She was forced to make choices and to think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had two spoons left. If she cooked, she wouldn't have enough energy to clean the pots. If she went out to dinner, she might be too tired to drive home safely without having blurred vision or forgetting to turn her lights on. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores but you can't do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn't want my friend to be upset, but at the same time I was happy to think maybe finally someone understood me a little bit. She had tears in her eyes and asked quietly, "Christine, how do you do it? Do you really do this everyday?" I answered that some days were worse than others , some days I have more spoons than most. But I can never make it go away and I can't ever for a minute forget about it, I always have to think about it. I handed her a spoon I had been holding on reserve. I said simply, "I have learned to live life with an extra spoon in my pocket, in reserve, you need to always be prepared."
It's hard, the hardest thing I ever had to learn is to slow down, and not to do everything. I fight this very day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel the frustration. I wanted her to understand that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather and my own body before I can attack any one thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between having a chronic illness and being healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count my "spoons."

After we were emotional and talked about this for a while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug and we walked out of the diner. I had one spoon in my hand and I said, "Don't worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste every day? I don't have room to waste spoons and I choose to spend this time with you."

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they look at their own life a little differently. I think it isn't just good for understanding MS, but anyone dealing with any disability or illness. Hopefully, they don't take so much for granted or their life in general. I give a piece of myself, in every sense of the words, every time I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons."

Saturday, June 12, 2010

National MS Societies are going after CCSVI to disprove it.

I can't tell you how mad this makes me and how poorly I now see the National MS societies. THey Will NEVER get another dime from me. 7

Today, the gray area has been eliminated. It's now just black and white. We have been patiently waiting to see if the National MS Societies in Canada and the US were actually going to go to the specialists who understand CCSVI in patients with MS. Drs. Dake, Haake and BNAC were all applicants for funding of their research. I know there were others who have studied CCSVI in patients and applied for funding. None of these very experienced doctors were given any money. No vascular doctors were awarded any research grants.

In the US, the money was awarded to 3 "insider" researchers--neurologists and doctors who are on panels, advisory committees for the NMMS, and have received NMMS monies before.

An MS patient of Dr. Aaron Miller's (head neurologist of the NMMS) made this post on tonight-regarding the study--

"I saw my neuro last night. He is the head NMSS neuro, the one who opened the panel discussion at the AAN meeting in Canada in April by saying we all know MS is an autoimmune disease.

He mentioned to me that today was the "big day", and that the studies being funded were diagnostic, not treatment based. I said, prove Zamboni's theory he said,, to disprove it."

So, now we know where we stand. Dr. Miller has made it clear. The research grants have made it clear. The line has been drawn in the sand. These studies are being funded to disprove Dr. Zamboni's research.

Where does this leave us? I believe we are now in the drivers' seat. We are not passengers in the MS Society mobile anymore. They have given us a very clear response. Now we take our money, our influence, and our power for ourselves. We use the connections we have made across national boundaries and languages--here on the internet--we organize and we mobilize money and research and treatment. We work with the vascular doctors, we work with the IRs, we support Dr. Zamboni and all of the brave, pioneering doctors who have taken up this challenge for us. We can do this.

I will not tell you how to donate your hard-earned money and volunteer hours. That's not for anyone to decide but you and your family. But I will tell you that the National MS Societies are not the end of this discussion. Neurologists can disprove Dr. Zamboni's research as much as they want. They cannot change the reality of an IR finding bilateral jugular stenosis. They cannot stop a vascular surgeon from encountering venous reflux. They cannot change a research paper written on discovery of CCSVI in 95% of pwMS. They cannot diminish my husband's return of energy, ability to hike, bike and ski after angioplasty. They cannot change the reality of the hundreds of patients finding symptom relief and remission from their MS. And they will not stop us from speaking out and looking for the truth and healing. Using science, and medicine and our God-given gifts. They may have some money (well, maybe less next year...) but they cannot buy the truth. The truth is free.

Friday, February 5, 2010

Buffalo Neuroimaging Analysis Center Newsletter:

For those of you that want to keep up on Buffalo's research.

Buffalo Neuroimaging Analysis Center Newsletter:
Volume 1 Issue 1, February 04, 2010

Sign up link:

Direct link: 0.pdf

Tuesday, January 26, 2010

OMG!! Its actually happening, CCSVI!


News from Dr. Zamboni- CCSVI lesions classified as congenital
Today at 10:47am
Received an e-mail from Dr. Zamboni this morning-

A Consensus Conference on Venous Malformations - headed by Prof. Byung B Lee from Georgetown - and experts from 47 countries- studied the evidence and unanimously voted in favour of officially including the stenosing lesions found in CCSVI in the new Consensus document and Guidelines. Now published-

This paper can be brought/linked to interventional radiologists and vascular surgeons. CCSVI lesions are classified as a truncular venous malformations - which means that vascular doctors have now classified this disease, CCSVI, as congenital- and preceding MS lesions.

Vascular doctors have agreed. CCSVI comes first.

Dr. Zamboni has been speaking to medical panels around the world. Yesterday was a "4 hour machine gunning of questions" by the Italian, Canadian and US MS Societies in Milan- Dr. Zamboni said he was able to answer all the questions with scientific evidence, and was quite pleased with the meeting's outcome. He'll be in North American soon.

Saturday, January 2, 2010

Some thoughts on CCSVI

The Liberation Treatment is based on new findings that CCSVI (Chronic Cerebrospinal Venous Insufficiency) blockages have been found in the jugular veins and/or the azygos vein of all MS patients tested. A simple 'balloon' or ‘stent’ procedure to open the veins can be used. This may be the cure!

I have been following all the new reports, news, Facebook groups and forums on CCSVI. It seems the more news we get the more questions we have. One of the big (simple) questions no one seems to be able to answer is: if there is a blockage anywhere why not treat it? Does it matter if you have MS or not? If you have a heart related blockage it's fixed. If you have blood clots or issues in your legs they are fixed, no questions asked. If anyone has a blockage in their jugular veins and/or the azygos vein why isn't it fixed asap? It's an obvious problem IF IT'S BLOCKED.

I am VERY encouraged by the reports people have been posting after having the procedure. It appears that at least 3-4 people a day are having the liberation treatment (NOT in the US). It would be of great benefit to everyone if these people were in a professional study and being tracked on their progress and what is happening with them. Sadly the wheels turn slowly and things are not in place yet. Hopefully some day soon.

A few things I have noticed
1. CCSVI has a REAL place involving MS.
2. People are moving ahead with the treatment on their own, regardless of the "unconvinced" and non-support from insurance companies.
3. People with MS having the procedure show marked improvement in their MS symptoms.
4. There is a great ground swell in the MS communities to get this research going.
5. The US is keeping this story very quiet in the news and in the public eye. Why? One can only speculate. Ahh...pharmaceuticals come to mind immediately.

I will have a lot more on this subject in the future I have added some links and information below I have gathered if you want some additional information on CCSVI.

News reports:
CTV NEWS (lots of videos and reports.
This is MS
Facebook group CCSVI-in-Multiple-Sclerosis
Facebook group MS Liberation Treatment (CCSVI)

There are many small things you can do to help your vascular health while waiting to be tested or treated for CCSVI. While these actions won't get rid of any venous obstruction, they can help your whole body and maybe slow down some of the reflux and damage from jugular stenosis. Again, I'm not a doctor- these are just some common sense steps you can take right away.

1.Eat a heart healthy diet! Lots of good leafy greens, fruits and veggies. Limit saturated fats (like red meat) and stick to lean, white meat protein. Fish is a terrific choice. Stay clear of man made fats and anything the has too many ingredients (like overly processed foods.) No fructose corn syrup or transfats. Eat a good, whole food diet- like the Best Bet Diet or Dr. Swank's MS Diet.

2.Move as much as you are able. Exercise- whether it is a stationary bike, seated exercise, water aerobics or yoga- is good for your circulatory system and will keep blood flowing.

3.Try to limit stress. Cortisol, the hormone released when we stress out, closes down blood vessels (called vasoconstriction) Prayer and meditation can really help. Laughter actually opens blood vessels up! Try to find joy everyday...with your children, pets, funny movies, good books.

4.Alcohol is OK...but only small amounts. A glass of wine opens up blood vessels a bit...but any more than one drink becomes constrictive.

5.Get some sun on your face. Vitamin D helps the body utilize oxygen and is a vasodilator. If you have no sun in your area, try a sun lamp and take a vitamin D supplement.

6.No more smoking. Sorry. Cigarettes are vasoconstrictors- they close up blood vessels and can make stenosis worse, That's why we've seen so much about smoking and MS in the news lately. Cigarettes actually slow down the immune you'd think they'd be good for MS, if MS was autoimmune! But cigarettes are linked to MS progression. In the CCSVI paradigm, that's because they inhibit good blood flow.

7.Look into inclined bed therapy. Raise the head of your bed about 4 inches. Use a 2x4 board underneath the head of the bed. The jugular veins are the only exit route for blood from the brain back to the heart when we lie down flat. If you sleep tilted up a bit, your vertebral veins can help out. Don't use pillows, this will crimp your neck. Use a board under the bed. It may take a few nights to get used to, but we've been doing it for awhile.