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.