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.

Monday, June 21, 2010

First Day of Summer

This is just a short piece, wishing everyone a very happy and relaxing first day of summer. My summer will be starting with a wonderful trip to the west coast to visit new friends. I will also be attending THE PINK DOOR fundraiser for CCSVI research at BNAC.

I feel wonderful, although I had a sinus headache yesterday that had me a little uncomfortable. It is at times like that, that you question everything. I woke this morning feeling well rested and ready for my 10 hour work day. Life has been very busy since the Philadelphia Inquirer ran an article about CCSVI, Dr. Bonn and the three of us that were treated by him. It is interesting that one article has started people talking. My daughter and I were having our nails done on Saturday, and as we were waiting for them to dry, we were talking about my upcoming trip and some of the responses from the article. The lady sitting next to us asked it we were talking about the article that had been in the paper about MS and the angioplasty. I said that yes we were. She asked if we knew that one of the women was from Chalfont. I chuckled, and said "yes, that would be me." Even though this lady was ready to leave, she remained there for a few extra minutes just to chat with us and ask some questions. She asked Jennifer if she had seen much difference in her mother. Jen beamed up and said that her Mom was happy again.

It was nice to hear what my daughter has noticed is different with her Mom....

More to come when I am out on the west coast.

Sunday, June 13, 2010

CCSVI causing Stress????????????

To start with the update on my status, I am still doing very well and feel great, for the most part. Yesterday I woke up with a headache and was very scared that I was falling backwards in my progress. As the day progressed, I realized that it was a sinus headache and not my MS headache. I have to come to grips with the fact that I will have the occasional headache, just as everyone does from time to time, and not to stress myself out over it.

Now onto the subject of the day. STRESS. We all know that Stress is not good for anyone let alone people with MS. As I was laying in bed the other morning, it struck me that since the announcement of CCSVI last year, some MS patients seem to be getting worse. Has anyone taken note that the added stress of knowing that there is a treatment to alleviate some of our symptoms, but yet is not allowed, may be causing undue stress on MS patients? This is not an up front, conscious, Stress, but a constant underlining condition. We all have stress that causes us some problems. I know that when there is a stressful time in my life, I can usually recognize it and change what is going on in order to lessen the affect. How will this be possible for so many people that are on waiting lists, not knowing if they will be able to have the procedure or how will they pay for it. In talking with so many people in the last few months, almost everyone as commented that they are have more problems recently. It struck me as interesting that all of a sudden people were getting worse. I thought back to before I was Liberated, and how my walk was, compared to the year before, and how my headaches had been more intense. Was this a reverse placebo affect or was it the amount of stress I was under, trying to find a doctor that would listen to me, that was causing more problems. I would have to say that it was the underlining stress.

Now that the MS Societies have announced the recipients of the funding for research, we know that the Society who's dogma is to be supportive of MS patients is really only self indulging. None of the funded researchers are doing treatments, and studying the true affects of the procedure. If this were a drug, they would be giving it to the patients and studying the positive and negative results, just as they do with all the other treatments that Pharmaceutical Companies come up with. Instead, they are studying how to test, and what to use for the testing. This would be the same as testing a new pill and first testing to see how people might swallow a pill without actually giving them a pill to swallow.
So I think it is safe to say that the Stress levels in the MS Community have just increased.

I feel compelled to only support any function or cause that has the funds going directly for the research of "CCSVI the TREATMENT".... By doing this I am looking into going to Seattle to attend the FIESTA to HELP SOLVE THE MYSTERY OF MULTIPLE SCLEROSIS on June 27th. I am also going to be traveling up to the Vancouver area to meeting with some of my new friends to talk about life after being Liberated.........

Wednesday, June 9, 2010

CCSVI and the changes in Life

I am now 9 1/2 weeks from Procedure. Life is good and things are coming along bit by bit. As I stated in my last posting, New things seem to be found, that were missing. I noticed last night while writing a card for a friend who is retiring, that my handwriting has changed. It is all of a sudden more consistent and clearer. This is something that you don't think about until it happens right out of the blue. I have more control of my hands. If I had been asked if I was having problems with my hands before I was Liberated, I would have answered, No, I don't have any real problems with them. But now I know that I must have been having problems because they are working better now. It sound strange, but this falls into the area of the things you don't know you are missing until you find them again. It almost make you eager for tomorrow to see what new surprises are in store for you. I think I will have to be more in tune with what is going on so I don't miss noticing things.

One of the greatest joys these days, is speaking with other MS patients and answering questions about CCSVI and giving support and encouragement to all the people waiting to be Liberated/fixed. Those of us who have had the procedure need to be the baseline for the research. We are the proof of what can happen when the veins are opened and the blood in your brain is allowed to drain properly. I can't stress enough the importance of what we say and do to support the rest that are looking for the strength to get the CCSVI scanning and then procedure.

I am looking forward to a summer of new/renewed experiences. This is going to be fun to see how a game of Tennis affects me. I have a new, good friend that is waiting to be liberated. She was an avid tennis player and the day that she and I can play a game together will be a huge milestone, for both of us. Of course I still have to watch what I do not to injure my still recovering shoulder. Looking forward to be a GOOD SUMMER........

Monday, May 31, 2010

Beginning of a Liberated Summer

It is now the unofficial beginning of summer. Mind you the weather feels like it is already July. Since my CCSVI Liberation Treatment, summer will hold a whole new meaning. I spent quite a bit of time out in the sun and heat yesterday and realized that the heat was not having an ill affect on me. I could do yard work and enjoy the outside without feeling drained, with a headache, and having to go inside, out of the heat. A Word to the Wise..... With all this new energy and stamina, be careful not to over do it. Friday, we decided to clean our small pond and get rid of the algae that had taken over. Feeling like super woman, I was standing in the bottom of the pond lifting heavy rocks, using muscles that I have not used to this degree in along time, and standing in an unnatural posture. So Saturday my body decided to remind me that I am not in the best of shape. CCSVI had given me back a wonderful quality of life, now I have to work on getting my body back in shape to go with the new blood flow.
I have found over the past 3 weeks that my memory is better and my thinking as I speak is clearer. I still see improvement in my daily activities. You don't realize what you have been missing until you find it again. It's like pulling an old coat out of the closet and finding money in the pocket. Some days it is a couple of coins, and other days it may be a 20 dollar bill.
I hope this feeling never ends.............

Sunday, May 16, 2010

CCSVI and Spreading the Word

It has been awhile since I posted anything, and this is one of those times when "No News is Good News". Last Monday I saw Dr. Bonn and had my one month post CCSVI Liberation Treatment appointment. I also had an ultrasound to see how my veins were behaving. I am happy to report that everything is doing well. I have seen improvement in my daily activities, and my energy level is high. My husband informs me that I do not snore at all anymore, and that he checks to see if I am still breathing since it is so quiet. My liberation is allowing him to sleep better.
Being liberated gives us back so much of our quality of life, but it does not stop with just the patient. It also gives the people around us back their quality of life. Michael being able to sleep better is just a small example of that. I am also able to resume some of the responsibilities that I found to be too exhausting to do before. Simple things around the house like vacuuming, washing floors, and carrying the laundry upstairs. This gives back some time to those that have had to do it for the past few years.

On to Spreading the Word.. I still find that there are so many people that I come in contact with that have never heard about CCSVI. But Everyone knows someone with MS. Last night we were at dinner with friends from my husband's high school and the subject of my Liberation became topic of conversation. It is so important to emphasize that looking local for an Interventional Radiologist is the way to go. I feel that there are many IR's that would be interested in doing this work and that we just have to contact them. It is not just through the internet, that the word is spreading, but also by just word of mouth. I talked to a couple in Delaware last week and they knew someone who know someone that was an IR. My response was to make the calls. Go to the site and look up who is in your area.

Monday, May 3, 2010

Weekend Update MS 5K Walk

It was an incredible weekend. I had lots of energy and was up early Saturday to get things planted in the yard, before the heat rose to it's predicted 90 degrees. By 9am the planting was done and it was off to the grocery store to get things for dinner. We had the pleasure of having another MS patient, still waiting to be Liberated and her husband for the evening. It was wonderful to share my experience with the CCSVI procedure and how I am feeling since the procedure. The heat of the day kept us inside, until it was dinner time and the heat was not as extreme. Then we were able to be outside in the cooler evening air. I would say that the heat still effects me, but it is difficult to be sure, since everyone was having problems with the extreme heat too hot, too soon. No one is ready for it the first of May...

It was very easy to have a full day of activity, and still have energy at the end of the day. That's right, we also uncovered the pool and opened that up for the season. Of course we did have the assistance of our almost 6 year old grandson.....

Sunday Morning started with a very early drive to Ocean City, New Jersey to meet up with two other liberated women and one almost liberated woman. This was a chance for FB friends to become face to face friends, and do some walking..... Actually we walked the 5K MS walk together. We all made it to the end of the boardwalk and back.. It was also a good chance for us to talk about the different results that each of us is experiencing since being liberated. Talking with Denise and Nasha, we could express our feelings and we knew exactly what the other person was going through. It was our own little support group. Each morning I wake up afraid that the veins have closed again and that I will be back to where I was. I found that I was not alone with these fears but we all agreed that time would tell. I look forward to my next Ultrasound to verify that things are still as good as I think they are.

After the walk I still had energy. The drive home was relaxing, even in all the Sunday afternoon traffic. I was tired at the end of the weekend, but not Fatigued, just tired from having a very full, busy weekend, and being out in the sun........

Wednesday, April 28, 2010

News of the Day

Here is an update from the last 24 hours. Yesterday at this time it might have felt like the sky was falling down on us. That the golden ticket had been torn out of our hands. Once all the dust settles, we will see that things will continue, if not exactly the same, at least in the same direction.

I spent the afternoon with two wonderful people that are determined to find a solution to their problem. Such determination is what is needed to change the world. I was there to lend a hand on their journey, but they are the ones forging forward to a destination that has had to change locations. Getting the CCSVI procedure done so that their life can improve a little or a lot. Time will tell on that....
I can only hope that more people will feel as well as I do. Having the energy to help my fellow MSers find some of the answers to their questions, is very gratifying.

My energy level seems to be increasing as the days go by. I am finding that I want to do things that I have put off for years. Things seem to be more important to me. For example, I now look at things like cleaning the baseboards in a room as something that I can do and want to do, instead of thinking a nap would be much better. Carrying up the laundry and putting it away is enjoyable instead of a major chore. In the past activities like that would definitely require some down time afterwards. In the evening going shopping seems to be something I want to do instead of just plopping on the couch to watch TV.
My walk is strong and my gait is good. My head is clearer by the day and I have noticed at work that my concentration is better. It used to take several days to complete a task that now I can have accomplished is just one sitting. This I am sure will make some of the people that I work for happy. I still have some trouble remembering what it is that I am trying to say sometimes, but, I still have MS. Being liberated is one huge step in the right direction, but there is still the underlining condition of MS. We are not out of the woods yet, but the trees are thinning out......

The Not so wonderful News

Yes it is true that Dr. Bonn has been put on hold for the time being. This does not mean that you should give up. It just means that we need to focus on finding other Dr.'s that will throw their hats into the ring. The more Dr's that are involved, the better the NIH will understand the need for this procedure.
I will continue this train of thought this afternoon. We need to support each other and those of us that have been treated need to show what can be done with just a simple procedure.

Monday, April 26, 2010

Walking issues

I would like to go back and clarify the changes in my walk and gait. I don't think that I ever stated how my walk was before being liberated.
I would not go shopping anywhere that there wasn't a shopping cart. That became my walker and crutch. No one stares at a person walking slowly with a shopping cart, because you are shopping. If you can't walk and are moving slowly, it is apparent the you have a problem. Being a very independent and proud person, I would not use a cane, or other assistants, other than the shopping cart. With my job, I used to go out to the different buildings and visit with staff. We have a new building that is 6 years old now, and I have yet to go in it. The parking lot is a long distance from the building, and every time that I have started to go there, I look at the distance and decide that I will not chance having problems getting back to my car. This condition would come and go. At times it would last for a couple of days, or maybe a week. At other times it was not apparent at all. That is where the saying "Good Days, Bad Days" would come into play.
Since Liberation, I have been shopping and not needed a cart. Unless I was doing a large grocery order. I have walked into stores, gone to exactly what I needed and walk around without a cart, or any other assistance. It was very liberating and exhilarating to know that I could do this without having people stare at me, and I was not tired. I am now going to that building and walk in and all around it. Just because I CAN.....

It has been wonderful talking to people from all over North America, and helping answer some of their questions.
I feel wonderful, and had a busy weekend getting things accomplished around the house that I have not thought of for so long. I was at Physical therapy last week (for my shoulder) and the Dr. said he noticed a difference in my walk. That made me smile, that someone noticed.... I have also been told that I look so much happier. It is amazing how being without a large portion of your pain will make you happy...

Thursday, April 22, 2010

20 Days, 3 Week Mark

It has been an amazing 3 weeks since my procedure. I have seen great improvement in my quality of life, and heard from others that have been liberated that they too are having positive results. Everyone is different, and so the changes that each of us will experience will be different. I think that the main similarity that everyone has reported on is the lack of fatigue. I know that I do not have to take a nap after work and can still function during the time that was set aside for napping.

Each day, as I have reported before, things seem to be changing. I can say that my legs are sore, but not weak. This could be due to the extra exercise that I have been getting. My husband seems to be benefiting from the procedure also. He reports that I am not snoring as much. As each day comes and goes, with new things happening I will report on how I am feeling. I have not had any down aspects of the procedure. Nothing has reversed, and I hope I never have to report that it has.

Monday, April 19, 2010

Weekend Update

The weekend has passed, Monday morning is here and I feel great.
I managed to accomplish quite a lot this weekend. We were puppy sitting for our daughter. That alone keeps you going, but I took "Major" (Sheltie Husky Mix) on a long walk. We walked around our block, which I then had to drive and measure the distance. 7/10's of a mile. There is another first for me since my procedure. I could not walk up to the corner without having my legs refuse to cooperate before. And I did not have to take a nap afterwards.
Each day my head seems to be a bit clearer and no headaches. I did get a slight sinus headache, but the pollen is quite heavy at the moment. I would like to say that my eyesight was better, but it's not. Maybe that is just an age thing.
Yesterday both my daughters were at the house. Jen picking up the dog and Liane was there with her son. We were all RUNNING around the back yard with the dog. Liane said that she thinks it has been 15 years since she saw her mother run. It was great fun, being able to run with my grandson.

This week starts with more people being Liberated in the Philadelphia area. Dr. Bonn will be doing the procedure on #2, & #3 this week. I am very excited that we will be starting to hear about more MS patients getting relief of some of their limitations.

Thursday, April 15, 2010

How things happened

Tomorrow will be 2 weeks since my Liberation of some of my MS difficulties. The journey to get to this point took several months. Here is the time line that got me to Dr. Bonn. I won't want anyone to think that I just called a doctor and had the procedure done. All good things take a little time.

My journey start back in November just a couple of days after the first W5 program aired. That is when I registered for the Buffalo Study, and started gathering information. I also sent personal emails to both the staff in Buffalo and to Stanford University. They both replied and informed me that they had my information and would be in touch.
My next call was to a local Vascular Surgeon. I made an appointment, only to have them call and cancel it. That doctor was not interested in doing such surgery. Knowing that I was going to need an ultrasound, I ventured to my GP loaded with printouts and reports from the Internet. He found the information interesting and would send me for an ultrasound, except on the order form there was no area to indicate a Jugular Vein ultrasound. He took my information over to the hospital and spoke with the radiologist. I was scheduled for a MRV Dx. Ataxia. The report stated "No Thrombosis". That is not what we were looking for, but at least I had the MRV. This is now the beginning of December and so far things have been moving right along. But I was coming to an abrupt stop. Contacted a second surgeon who had done other procedures on me, to see if he was interested. NO, He would not do untested procedures.(old School) The holiday Season came around I my energy was all focused on the season. Start again after the New Year....

I was reading everything I could about the procedure and where people were getting it done. As soon as I heard that Albany NY was starting a study I registered with them. Hoping to have all my bases covered. Learning as much information as possible. There is nothing better than a well informed patient. A secondary medical issue put me on a side rail for a few weeks, allowing me to read and learn more. Made and appointment with my local neurologist and my diagnosing neurologist in Philadelphia. First Neoro had only one other patient ask him about CCSVI, he had heard about it but had no information. I took him in some the next week.
March first, was my appointment with Second Neoro at University of Penn Hospital. I went loaded with MRI's,MRV, reports and literature. I knew that Dr. Markowitz knew about CCSVI, and wanted his input about it. "Very interesting, but the studies still have to be done." His final comment was "Let me know how you make out with that." So now I had hit yet another brick wall.
I had heard that Dr. Scalfani in Brooklyn was doing procedures. After contacting them and being put on the list, I sent my info, copies of my CD's and insurance information. Now it was going to be a waiting game. Making more contacts through Face book and reaching out to other people for information. That is when the true sharing of information started to take hold. I found out through a friend on face book that it was an Interventional Radiologist we should be seeking out. Also, I should not be asking about CCSVI in relation to MS, but Congenital Abnormalities of the Cerebral Venous System. With that information, I was able to start reading about a different type of doctor.
After searching through lists of doctors at all the University Hospitals in the Philadelphia area, and reading their bio's etc. I came across Dr. Joseph Bonn at Lankenau Hospital. I had a name and phone number, but it took me quite awhile to actually pick up the phone and call. I did not want to have yet another person deny me. I called and got voicemail. I left my message that I wanted evaluation for Congenital Abnormalities of the Cerebral Venous System. With in a couple of hours I had a reply. Dr. Bonn was interested and wanted to see me the following Monday. WOW, I had an appointment and the doctor was interested.
I went to the appointment still a little scared that once he realized that I had MS he would dismiss me. Quite the contrary. After giving his assistant all my medical history as well as my studies, reports and literature, Dr. Bonn came in to see me and he was smiling. I had found my savior.
After talking about all the information, he asked me to come back in a week, after he had had a chance to look over my studies and get additional information. My next appointment was the following Monday March 29th. At that appointment, an ultrasound had already been scheduled and we were scheduling a venograph at the same time, for a later date. Dr. Bonn went over all the side affects of the procedure and all the risk factors that went with it. During the Doppler ultrasound I could see the back flow of blood that was not leaving my brain. We could also see the stenosises on both sides of my neck. My next step would be to have the venograph done, and any areas that he found to be blocked would be opened at that time. I was scheduled for that Friday. April 2nd.
And that is how I got to where I am. Feeling good, NO Headache and being able to walk a lot better than I had been.

More to come on my daily or bi-daily updates.

Tuesday, April 13, 2010

Spreading the word

You don't have to tell too many people about something to have the word spread. Yesterday I called a doctor's office to make a physical therapy appointment for my shoulder. The phone was answered by one of the partners, and when I said who was calling, the response was I have been hearing about you. He had hear that I had had the CCSVI Treatment/Procedure. This started a lengthy conversation about where I had gone and how I was feeling since being treated. Dr. Kaye knew about CCSVI and had been speaking at MS Support groups. He is a Chiropractor/Pain Management Doctor, and very interested in helping his patients. Several of his MS patients had been asking him about CCSVI, and now he had a connection to having it done. I gave him the information about Dr. Bonn down at Lankenau Hospital, and he will be passing that information on to those interested patients.

Without the assistance of the National Media, it is hard to reach out to all the MSer's that would benefit from this. I have emailed a couple of Media people and hope to hear back from them. I'm not holding my breath. I'll have to see if some Letters to the Editors work. This is where Canada is so far ahead of us. The media in Canada is reporting, and following the progress of patients that have gone to far off places. We can't get coverage of things done right here at home.

I am still feeling great, and it seems that each day my head is a little clearer, my sleep is deeper with less snoring (according to my Husband) and my walk is sure footed and strong. The first day after treatment, I said that I felt 100% better than I did the day before. Then as the days go by, you realize that day one you were only 50% better, because each day gets a little better, and different sensations become stronger and more defined. If I stuck to my 100% first day out, I would be at about 300% and going higher. So I think I will just say, things are going great and the sky is the limit.

Sunday, April 11, 2010

Sunny Sunday

It is a beautiful day and all is well. I'm looking forward to having a productive day, since I feel so well and can walk with ease. Yesterday was a little scary for me, as I woke up with a headache. It was not the same as before, but none the less a headache. Each day brings new experiences and different feelings. It wasn't until I talked with my husband and my daughter that I felt better. They both had headaches also. The weather has been bizzare and the barmetric pressure has been changing drastically. With the HOT weather last week, everything is in full bloom. The pollen count is also through the roof. So a couple of asprin and some food and I was once again in the pink..

This weekend has brought me in touch with more people looking for infomation on the procedure and what the out come has been like for me. I am happy to help anyone that is hurting and wants help.

It is wonderful to see the news coverage in Canada and the actions that are taking place up there. If it weren't for the internet we would all be in the dark. It is now time to reach out again to the US media and see what can be done to put CCSVI in the headlines down here. If anyone reading this has any ideas or contacts, I would love to talk to them about my experience and how being liberated has changed me in just the past couple of weeks.

Friday, April 9, 2010

One week and all is well

It's hard to believe that last week at this time I was at the hospital with a headache and getting ready to have the CCSVI procedure.

It has been an incredible week, realizing that I can do things again that have been a out of my reach for so many years. The thought of walking around the block, or doing something when I was done work for the day, were just not in the cards for me. My regular routine for so long would be to come home from work and take a nap for a couple of hours and then get up and make dinner. My husband would clean up the dishes and I would be on the sofa.

Now that is not to say that I didn't have good days when I seemed to be quite normal. We all push ourselves and just "keep on truckin". Only to pay for is at some time down the road.

That is behind me, "I hope" since I have had a wonderful week of walking and a reduction in the number of headache medications that I have to take. I am down to maybe once a day, and that is not for my headache, but the discomfort that I have from the still recovering Rotator Cuff repair from the beginning of February.

On a different note, I have been receiving questions and inquiries from all over North America about where and how they can get Liberated. My first response is that you should be looking as local is you can, for an INTERVENTIONAL RADIOLOGIST. They are all over that world and are there to help people. They do not deal with Pharmaceuticals and they do not do INVASIVE procedures. There are several letters and reports out on the internet, cautioning MS sufferers to "avoid invasive procedures" and to "wait for the dust to settle before you go under the Knife." Well just so it is perfectly clear, there is NO KNIFE/SCALPUL involved and it is not an invasive procedure. I came home with a bandaid on.

Thursday, April 8, 2010

An explanation of my profile picture.

Most people have nice head shots as their profile picture. Well mine is just a more in depth picture. That is my right jugular vein in the 4 phases during the procedure. From the left to the right, first image is showing the narrowing with the catheter, the next is the first balloon that was inserted, opening up the narrow area. A second balloon was inserted to open the remainder narrowing and the image on the right is after the balloon was deflated. It is easy to see how the blood is now flowing freely through the vein. I had 3 areas like this done. It's no wonder that people (myself included) feel so much better after this is done.

We need to be hearing from more of the people that have been liberated. There are several people had have posted about their experience during the procedure and how they are feeling now. BUT it would make that much more of an impact on the media and maybe the Dr.'s that are on the fence to hear from more of the people that have been "Liberated". They keep yelling about studies, well there are quite a few of us that have had the surgery and I know that I am ready to be studied.

Wednesday, April 7, 2010

Another day

Every day is a new day with new discoveries and changes. Not all changes are for the best they are just changes. Yesterday the weather was unseasonably hot and today is going to be even hotter than yesterday. With temperatures soring into the high 80's at this time of year is difficult on everyone. For those of us with MS the heat is always an issue. So, even though I was just liberated, this blast of heat effected me yesterday. I was tired at the end of day, and my head was just a little fuzzy. Not with "MY" headache just fuzzy. A positive change yesterday was that I could run up the stairs at my office. Not that I needed to, but just because I could. Maybe I'll try the ones at the Art Museum, just like ROCKY..

Understanding what has just happened and the changes that are occurring in my head, is sometime a little "mind boggling". That could explain some of the fuzziness. The blood in my brain is no longer flowing in the same way that it has for so many years. So it is understandable that there will be some different feelings, twinges, and pressures. This will be another very involved subject that will have to be returned to at a later time.

This morning starts another adventure after a really good night's sleep. My legs feel strong and my gait is even.

Tuesday, April 6, 2010

4days out of surgery

It has been 4 days since I had the CCSVI procedure and I can hardly believe that it has truly happened. I went for a longer walk last night than I have done in years. My plan is to add a little more distance on my walks each night. Each morning I have realized that I don't have a headache and think of how luck I was to find Dr. Bonn. I actually ran up the stair at work today. Not that I needed to but just because I could. Each day will bring something new/old back into my life.

Thank You to all my wonderful friends and family, that have supported my decisions and cheered for me on this amazing journey. It's not over yet.!!!!!

Monday, April 5, 2010


This has been a month of FIRSTS. My first Ultrasound, my first CCSVI procedure and now my first Blog. So please bear with me.

After hours of investigation and research, I was able to find a Dr. in the Philadelphia area that is willing to do evaluations and treat new patients. He is a wonderful Dr. with years of experience and knowledge.

I was his first CCSVI patient, but I had no reservations about having it done, or who's hands I was placing myself in. Dr. Bonn angioplastied 3 viens, the interior and exterior jugulars on my right side and the exterior jugular on the left side. My procedure was followed by another ultrasound to compare with the ultrasound that was done last Monday. I am being followed up with an appointment in one month, with an ultrasound scheduled at the same time. I feel that I am in the hands of the best person I could find in this area. I am truly blessed to have Dr. Bonn handling my liberation.