Thursday, August 2, 2012

Recap and Update

I thought that it was about time I did a recap of the blog, and an update on what has been going on with me and my activities.

Overcoming Life’s Pitfalls

Everyone has a certain amount of stress in their life. How it affects them and how they deal with it, is different for every person. When it affects your health it can mean total disability or a change in life style.

 This is a little about what stress did to me and how I decided to fight back against two diagnoses that could have made me give up and apply for disability.

 The First, back in 1997 being told that I had Fibromyalgia, and there was not much they could do for it except exercise and learn to deal with the pain. Get lots of rest etc.

The depression set in, at the realization of what this would mean in my life. I couldn’t watch movies that dealt with all the sports and social activities that I loved to do.

 BUT, I’m a fighter and would not lie down and accept this. LIFE CHANGE….  Start hunting for a doctor who knew about fibro and could do something.  In comes Dr. James Craine, Chiropractor.  Massage therapy, trigger point injections, and I’m back in the game, with knowledge and understanding of what I can do or NOT do, to stay active.  

Life continues along with limitations, but not too many.   Stressors are again an issue and more health issues are arising, but everything is dismissed to the Fibro.

BAMMMMM. July 2002. “You have abnormalities in your brain.”  Could be cancer, tumors, or MS.  November 2002 finally diagnosed with Multiple Sclerosis.  NOW WHAT…
I’m seeing the top neurologist at the University of Penn. He should know what he is talking about.  

Drug study. Lots of time in the MRI tube.  Trips down to Penn, and I’m getting worse. Could hardly walk. Could hardly see out of my right eye, Sleep was almost impossible. And the list goes on and on.  Kicked out of study after 3 months, since I was only getting worse.  Start new injection drug. Needles Monday, Wednesday, and Friday nights.  Steroids and just deal with it. 

Again the fighter wanted to fight, but not quite as able to get anything done to change the outcome. This is my BRAIN.

Adapting to the situation, - I Don’t go anywhere that I don’t have a walker/Shopping cart. Don’t accept any invitations for things that would require walking, or a great amount of energy.  KNOW YOUR LIMITATIONS AND ACT ACCORDINGLY.  Just like diving….

Life continues along sitting on the sidelines, watching everything go by.  Get up in the morning, go to work, come home and go to bed. Trying to control a headache that would not stop. At times the headache would put me to bed for days at a time. Conserving my energy for the small things I need to do for the family.  Traveling a small amount to see family in Canada.

Thanksgiving 2009 Canada, I hear about a Dr. from Italy who had done some research and found that MS patients have constricted veins in their necks and by opening them via angioplasty, it helped their symptoms.  This is a treatment not a cure.

OK, now I had something to investigate, get information and take action on.  As soon as I got back into the state, I started calling doctors, reading everything I could about the procedure and how to get it.  It was then that I logged onto Face Book and found hundreds of other MS patients that were all out there to share our information with and help each other. People were going to Poland and other areas in Europe. I did not want to go that far from home.

So to make a very long story short, I found a Dr. here in the Philadelphia area that was interested in seeing me and then in doing the procedure.    I had my first Angioplasty April 2, 2010.  I was one of the first 200 patients World Wide to get the procedure. We are now around 35,000 in just over two years.  The Dr. found that I had constriction in the interior and exterior Jugular veins on the right and the interior Jugular on the left. I also had an obstruction in the Azygus vein. All these areas were ballooned and opened up.  By the time I got back to recovery, my headache was gone and I felt wonderful. 

 Now it was time to start living again. That, and helping any other MS patients with information and support.  As well as the whole movement in getting CCSVI recognized in the United States.

Last January I found that things were creeping back. A few headaches, some fatigue and then in the middle of January, I woke up and my legs were no longer working. I couldn't walk like I did the morning before.  What has caused this. Was it the stress of the holidays? 

It was time to get hold of a doctor and have things looked at and corrected if I could.  I contacted Dr. Sal Sclafani in Brooklyn and was able to see him the next day.  A few days later I was right as rain yet again, after having 7 areas ballooned.   


In the past year I have taken up Scuba Diving, and thus a part time job in a dive shop. I have met some incredable people with a passion for life and diving. This enables me to travel to dive and meet with MS patients when I can. The best of both worlds.

Scuba Diving was just one more way for me to enjoy my love for the water.  So Why NOT.   To move forward in life you have to be willing to get out there and take the Giant Step.  “Behold the Turtle. He makes progress only when he sticks his neck out.” James Bryant Conant

My daughters think that I only took up Diving so I would have another excuse to travel….

Good health and Big Hugs to all...

Tuesday, June 14, 2011

Still persistant, this time for my Daughter

Well it has been a very long time since I posted on my blog.

Today was a very important day in the discovery of CCSVI and not only in MS patients.
My daughter, Liane, has had many symptoms of MS but was never diagnosed. She had a MRI several months ago and it showed no lesions. That did not stop her persistent mother. I have been very convinced that she had some kind of stenosis of the veins that should be looked at. Though most treatment centers are not seeing patients that do not have MS, I was able to get in contact with the Vascular Access Center (VAC) in Philadelphia and explained my suspicions about Liane. They set up an appointment for today and off we went.

The good news of the day is YES, she did have moderate stenosis in the the left and right jugular veins that were ballooned, and the Illiac vein was pancaked between the artery and the back bone. This was ballooned to 18mm and the flow was much better. Dr. Kirsch performed the procedure. We are now in the wait and see mood, as to what improvement Liane will have.

So the question of the day is, do we have to have MS to have constricted veins? I don't think so. There will be huge development is the science of veins in the next few years, and following patients that have problems with headaches, bad backs, swollen legs, blurred vision and major fatigue may also be found to have CCSVI.

I will keep you posted on her improvement that we hope will be substantial.

I on the other hand have been doing quite well and continue to benefit from my procedures. Still pushing to educate as many people as I can and to spead the word about the pros and cons of simple angioplasty and and CCSVI.

Good health to all.

Friday, November 19, 2010

MS Society Annual Meeting

Last night was the annual meeting of the regional MS Society for the greater Delaware Valley. When I received notification of the meeting last month, and saw what the topics of conversation were going to be and who the panel of experts were, it was a no brainer. I had to go and see what they would say and if need be, put in my 2cents worth. The topics were: New oral drugs and the unknown side affects, Tysabri, on the market, off the market and now back on the market, (yah, there are side affects and there is that pesky virus PML, but lets not get into that too much).
Oh yes and then they just touched on the subject of CCSVI. There was a very short explanation of Dr. Zamboni's discovery and researched. Then, only the negatives..... Why would you want a wire inserted in the groin and fed up through the body to the neck, with all the dangers that could occur. People have died and stents migrate. They had to crack open a woman's chest. That doctors were going behind the backs of their hospitals and against the rules. These were their words....
During the question and answer session of the evening, most of the questions were about drugs and the answers were vague as far as what the side affect would be if you changed therapies.
I had the opportunity to ask the last question. Since one of the doctors on the panel, was also one of my neurologists, he asked, how are you? I replied to him "Fabulous". I asked if with the considerable number of studies that are underway around the country, would the neurological community be willing to advise their patients to be tested for CCSVI. Once again the responce was vague, and that there was not enough data from the studies to encourage such an action.
Before I yeilded the microphone, I asked if they would at least stand corrected and acknowledge that there have not been multiple deaths only the one that was not related to the procedure and that there is only one reported occurance of stent migration.

I will continue to fight the good fight and spead the word about CCSVI to anyone that will listen and wants the information.

There were a few people that came up to me as they were leaving to ask for more information and to thank me for bringing up the topic.

Next week will be the one year mark since the W5 report. I think it should be a National Holiday. Well, it will be Thanksgiving down here so we can all be thankful for Dr. Zamboni......

Wednesday, October 27, 2010

CCSVI the condition

My birthday next week will also be my 7 month re-birthday. I feel wonderful and the past 7 months have been both exciting and educational. Besides the slight hiccup, which really wasn't that big of a deal, nothing has gone wrong. My energy is good, my stamina is wonderful and everyone keeps telling me how great I look. LIFE IS GOOD. Today there was a woman in my office that had not seem me in several months. Her comment to me was "You look really good, what's different." not bad since it was 7am on a rainy day.
The educational part of the last 7 months has not only been about me learning about CCSVI and Angioplasty, but also about educating as many people as possible about MS and what can be done about alleviating some of the symptoms. I was just down in Florida for a week visiting some friends and talking with strangers that I came in contact with. Since the media is not willing to acknowledge that CCSVI is a condition and that it should be brought out into the headlines, I feel that I have to tell as many people as I can. The two women that I sat next to on my flight to Florida now know something that they did not know before. Both were very interested and wanted more information. Everyone knows someone with MS. I find that it is easy to strike up a conversation with people and since I am usually traveling alone, the question comes up " are you traveling on business or pleasure." my response is usually "a little of both" The business is spreading the word about a condition called CCSVI and the effects it has on MS and the pleasure is all mine.

I referred to my little hiccup of about 6 weeks ago. In reality there was only one out of three areas that had restenosed. The other two areas that the Dr. angioplastied were new, not visited on the first round. There has not been a lot of information about the senosis of the Iliac vein in conjunction with the pains and problems with the legs. All I can say is that in April after my first treatment, I kept saying that my legs felt great, but my knees were killing me. Now, with my Iliac vein stented, my knees don't hurt.. Neither the Dr. nor I can say why, but if you are missing some pain, don't go looking for it just enjoy it's absence......

In closing today, I would like to address the concerns that so many people have about follow-up.
While talking to a very wise Dr. this summer in Albany, a patient was concerned about where she would go for follow-up. The Dr. said, "go home, start living your life, and if you have a problem then contact us about a follow-up. Don't be so concerned about it unless things are not going well for you. " This was good advise and I will also say, remember the stress that put you where you are now or where you were. Don't stress over something until you really need to....

Friday, September 24, 2010

CCSVI Revisited

Hi Everyone,
It has been quite awhile since I last posted anything in this blog. For this I apologize.
I had a very busy and rewarding summer. Filled with activities. Back in July, I attended the symposium that Dr. Scalfoni hosted up in Brooklyn. It was well attended by Dr.'s and Patients from around the country and Dr.'s from around the world. The presentations were very informative, allowing us to see and hear how all Doctors doing the same procedure were each doing it just a little differently.
I hosted a dinner party for MS patients and their spouses. 12 people with different backgrounds that all had one thing in common. MS. It was a great evening of good conversation and friendship.
I traveled up to Albany to visit with a Friend, after she had angioplasty there. The next morning I drove up to Montreal for the afternoon.

On to the subject at hand. During the month of Aug. I noticed that there were a few things creeping back into my life that I hoped were gone forever. I was having an increased number of mild headaches, and by the beginning of this week they were getting quite bad. There was difficulty with sleeping, and my right ear seemed to be clogged. There was discomfort in the right side of my neck. I have been saying ever since my first angioplasty that my knees were bothering me. They just hurt.
I didn't want to post anything about this until I had all the facts and could give you the correct lay of the land, as to what was really happening. Had I just re-stenosed, was there a different problem, or was it all in my head. It was time to call and see Dr. Bonn again. We met a couple of weeks ago and it was decided that he would go back in and see what was going on with my veins.

Yesterday was round two angioplasty. Since learning all the different ways that the procedure was being done around the world at the symposium, Dr. Bonn was going to be doing things a little differently. He entered on the left side, and was going to look at the Iliac vein first and then move up to the right, left and azygous veins. I was also going to be sedated 99%, as this is what will done for the patients in the upcoming study.

Now the results of Yesterday. My Iliac vein was 40% constricted, and after ballooning, it constricted even more. Dr. Bonn inserted a stent in this area, a procedure that is commonly done for May-Turner Syndrome. The left Jugular had restenosed a bit, and was stretched back open with a 14mm balloon. the right side had a new area that was not addressed the first time. This area was also opened with a 14mm balloon. My Azygous vein was open and clear.
The whole procedure took about 2hours and I was back in recovery for 4 hours laying flat to allow the catheter area to heal.

TODAY: Once again my headache is gone. The right ear is clear, and the discomfort behind the ear is gone. My knees don't hurt like they did last week. I still have to get out and move around a lot more to see how they are feeling.

So, once again, Angioplasty the treatment for the condition of CCSVI has been a success.
We all have to remember that CCSVI is a condition and the treatment is Angioplasty, it is not a cure. Just as chemotherapy is a treatment for cancer, it too is not a cure. You don't get rid of cancer with one treatment of chemo. So why would we think that one treatment of angioplasty would get rid of our MS.

I promise to be more attentive to posting my progress, good or bad.
I hope this finds everyone in good spirits and health.

Saturday, July 10, 2010

3 Months out

Summer is here, the heat is stifling, and normally, or at least last year, that would mean that being out doors would be out of the question. Since my CCSVI Angioplasti, I have been able to tolerate the heat as well as the next person. At least those without MS. It is incredable to be able to function normally, and let my husband push the shopping cart when we go to the grocery store. There is no need any more to have the assistance of the faux walker. We all know how important that is/was.

Thursday I had my 3 month follow up and ultrasound. All the veins are flowing correctly. NO restenosis......

I have been having a few sinus headaches, but they are totally different from the MS headache that pleged me for so many years. I may have to see an ENT doctor if they don't clear up with the anitbotics. This has NOTHING to do with MS..

I would like to pass on to all the people waiting for angioplasti, or screening, all my hopes and prayers. Please keep in mind that the Doctors that are waiting for their IRB's are as frustrated and concerned as we are. They are doing everything they can to get things moving to help the MS communtiy and the Science community.

A couple of Notes:

  1. Get copies of all the tests, both on CD and the writen reports
  2. Make copies of them and hold onto the originals
  3. When getting an MRV, make sure it is of the head, neck and thoracic spine
  4. Read everything you can, But remember that not everything on the web is correct.

  5. Ask Questions, Get Answers, from your Dr.'s, and people that have had the procedure.

  6. Be as patient as you can.

The Liberated/Fixed MS Community is growing larger everyday. This is such a wonderful thing and we need to stay strong and active to show that what has started will continue to grow. I feel very strongly about helping and giving support to everyone that is seeking relief from the MSonster .. Always remember..... UNITED WE STAND, DIVIDED WE FALL ..... and some of us have fallen enough.

Thursday, July 1, 2010

A different type of MS CCSVI Journey

So many of us with MS have taken journeys to get the Liberation Treatment,even if you haven’t traveled overseas, each one of us has had a journey of some sort into a new chapter of our lives.

My new life journey started on April 2nd with the Liberation Treatment.

My time on the West Coast last week was a different type of journey/adventure. I was out there visiting people and talking about CCSVI to both MS patients and strangers that I would meet along the way. I met with some of my Face Book Friends, to share a meal, and stories. It was incredible to listen to the difficulties that some people have had dealing with Dr.'s that are not willing to listen to their patients.

As I traveled around the Vancouver area, I met with so many wonderful, positive people. Some with MS looking for information and contact with a person that has had the procedure, and a great number of people that I would meet to on the ferry, the plane, or the beach. Everyone knows someone with MS. The reaction that I received, when I explained why I was on the west coast, was very interesting. I was there to connect with people and spread the information about CCSVI. Of course, going to the fundraiser at the PINK DOOR, was an extra special event. Money was raised for the research at BNAC. with Dr. Z. There was a great turnout, and it was really nice to meet other MS patients that have had the procedure.

I had no problems walking and there was no fatigue. I walked on the beach in Parksville BC and where ever I could find one. I walked the Inner Harbor in Victoria and watched the sun set. There were no Headaches, and since I was getting lots of exercise and fresh air, sleeping was all good. The Hills in Seattle were doable, I walked down to the market from my hotel which was about 12 blocks. Coming back I walked some of it but opted for a Taxi. There is no point pushing any envelope if you don't need to.

The whole trip was so energizing and fascinating. I was welcomed everywhere I went, and felt very much at home. The people on the west coast are very warm and friendly people. I look forward to returning to the area again.