Way back in November I sent all of my records and information to Dr. Dake, but I never heard back from him. I thought maybe they had decided to not have me as part of the trials or the procedures he was doing at that time.
Today I decided to email them again and his assistant quickly responded. She told me they didn't have my email address on file. Now they do and I have been on the list since November! Here is what the rest of the email said...
"Thank you for your inquiry regarding our work on blockages of the veins of the head and neck associated with multiple sclerosis. I wish I could talk with you personally to explain our ongoing work, but in order to provide a reply to all, I must respond by email. After careful review at Stanford, we have determined that the initiation of a clinical development program leading to a possible clinical trial will be the next step as we examine the possible risks and benefits of balloon angioplasty with or without venous stenting for patients with multiple sclerosis. This evaluation will start shortly but it is unlikely that, even given a highly positive outcome, we would be initiating any clinical trial before the second half of 2010 at the earliest. In light of these next steps, I am not currently performing the procedure at Stanford.
Please be assured that we will keep your contact information on file and provide appropriate updates of our work on this important issue.
I hope to have the opportunity to speak with you in the future.
Sincerely,
MICHAEL D. DAKE, M.D."
This gives me so much hope! If all goes as planned, I will hopefully be treated after September when the baby is born, late this year or early next year, maybe.
I know there are a lot of maybes and ifs in this, but I am still so excited. This might really happen.
I am a huge fan of breastfeeding, but I am willing to stop early if it means I can get my jugulars fixed! Woohoo! What an exciting year I have ahead of me! =)
1/14/10
Detour in my Quest...
Last week the imaging center, that sounded so excited about testing me at first, decided that they were not interested in testing me for CCSVI. They said they are not a research facility and that the research I gave them was old. It was Dr. Zamboni's original research, does research get outdated after 5 years? Anyway, that news was hard to take because I had waited for two months for them.
Still I had an inward battle between getting tested and having another baby. But little did I know the decision was already made. I found out on Tuesday that I am pregnant. I wouldn't have been able to be tested anyway. My husband and I are both very happy. We are hoping that more paths will be opened in the next year or so and it will hopefully be less of a battle to correct my vascular problems by then.
I "blame" (but not really) the pregnancy on Inclined Bed Therapy. It regulated my menstrual cycle and I have been feeling great. I have never gotten pregnant so easily. I hope my sister B will follow quickly. She just inclined her bed and she has been trying to get pregnant for almost two years. It will be so awesome if it works for her.
So now I get to see what being pregnant while having MS is all about. I honestly don't think it will be too much different than my other pregnancies. I feel I have had these vein inefficiencies all my life and the fatigue I felt with my 2 year old son will probably be about the same, maybe I have a little more "brain damage". Maybe I have no idea what I am talking about, only time will tell and it is so different from person to person.
Still I had an inward battle between getting tested and having another baby. But little did I know the decision was already made. I found out on Tuesday that I am pregnant. I wouldn't have been able to be tested anyway. My husband and I are both very happy. We are hoping that more paths will be opened in the next year or so and it will hopefully be less of a battle to correct my vascular problems by then.
I "blame" (but not really) the pregnancy on Inclined Bed Therapy. It regulated my menstrual cycle and I have been feeling great. I have never gotten pregnant so easily. I hope my sister B will follow quickly. She just inclined her bed and she has been trying to get pregnant for almost two years. It will be so awesome if it works for her.
So now I get to see what being pregnant while having MS is all about. I honestly don't think it will be too much different than my other pregnancies. I feel I have had these vein inefficiencies all my life and the fatigue I felt with my 2 year old son will probably be about the same, maybe I have a little more "brain damage". Maybe I have no idea what I am talking about, only time will tell and it is so different from person to person.
1/6/10
Inclined Bed Therapy
Just a note: Andrew K. Fletcher corrected my analogy in this post, see his comment for more from him. How cool is it that he took the time to comment? He is fast becoming one of my heroes.
About two months ago, I read about Inclined Bed Therapy and it made sense to me, especially in light of CCSVI. By raising the head of your bed by a 5% incline, or 4-6 inch difference from head to foot on a full length bed, you allow gravity to assist your blood circulation.
Andrew K. Fletcher is the "inventor" of this therapy, he uses his resources to spread the word about how beneficial IBT is for everyone, not just those with MS and he gets nothing in return.
If you can imagine a flat table with tubing in the shape of a U laying on top. If you were to pump water though the tubing, it would take lots of effort to get the water all the way to the top side of the U. Now incline the table by 5%, gravity will help the water roll effortlessly to the top of the tubing. Your veins work the same way.
I feel raising the head of my bed has had the most benefit on my health since I change my diet and I am tempted to say it has had more effect, though I believe nutrition is very important. I am no longer fatigued most of the day, I don't have to rest at 4:00pm just so I can make dinner and guess what? I stay up to bring in the New Year! Two months ago I was heading to bed at 9:30 every night.
So here is what I did:
I had bed risers in my garage, the ones stores sell so that you can make your bed higher to store stuff underneath. I had my husband help me lift the bed while I put two of them in place at the head of the bed. Then I measured to see how much of a lift they gave. Because of the placement of the legs of the metal frame, beds can vary in head height, even using the same bed risers. Mine was a perfect 6".
Andrew suggests you start with 4" to get used to it. To do that you can just put a 2 by4 under the legs at the foot of your bed until you are ready to go all the way.
Two weeks ago, my 19 year old sister A had an MRI and it showed a lesion. It is most likely the start of MS, a very scary thing for our whole family, that would make it 3 daughters with MS, crazy! I immediately raised the head of her bed with the two left over bed risers. She is sleeping deeper, feeling better and wakes up in the morning ready for the day.
I am trying to convince my sister Z (who also has MS) to incline the head of her bed, but she is worried that her husband's space with be disrupted. To this I would like to respond: Your husband loves you! He wants you to be healthy and happy. I am sure that this little sacrifice on his part will help you lift out of a lot of the fatigue you have been experiencing. I know it sounds too good to be true and you are a doubter, but I bet he will try it if you ask him to.
Here is a list of benefits I found here:
About two months ago, I read about Inclined Bed Therapy and it made sense to me, especially in light of CCSVI. By raising the head of your bed by a 5% incline, or 4-6 inch difference from head to foot on a full length bed, you allow gravity to assist your blood circulation.
Andrew K. Fletcher is the "inventor" of this therapy, he uses his resources to spread the word about how beneficial IBT is for everyone, not just those with MS and he gets nothing in return.
If you can imagine a flat table with tubing in the shape of a U laying on top. If you were to pump water though the tubing, it would take lots of effort to get the water all the way to the top side of the U. Now incline the table by 5%, gravity will help the water roll effortlessly to the top of the tubing. Your veins work the same way.
I feel raising the head of my bed has had the most benefit on my health since I change my diet and I am tempted to say it has had more effect, though I believe nutrition is very important. I am no longer fatigued most of the day, I don't have to rest at 4:00pm just so I can make dinner and guess what? I stay up to bring in the New Year! Two months ago I was heading to bed at 9:30 every night.
So here is what I did:
I had bed risers in my garage, the ones stores sell so that you can make your bed higher to store stuff underneath. I had my husband help me lift the bed while I put two of them in place at the head of the bed. Then I measured to see how much of a lift they gave. Because of the placement of the legs of the metal frame, beds can vary in head height, even using the same bed risers. Mine was a perfect 6".
Andrew suggests you start with 4" to get used to it. To do that you can just put a 2 by4 under the legs at the foot of your bed until you are ready to go all the way.
Two weeks ago, my 19 year old sister A had an MRI and it showed a lesion. It is most likely the start of MS, a very scary thing for our whole family, that would make it 3 daughters with MS, crazy! I immediately raised the head of her bed with the two left over bed risers. She is sleeping deeper, feeling better and wakes up in the morning ready for the day.
I am trying to convince my sister Z (who also has MS) to incline the head of her bed, but she is worried that her husband's space with be disrupted. To this I would like to respond: Your husband loves you! He wants you to be healthy and happy. I am sure that this little sacrifice on his part will help you lift out of a lot of the fatigue you have been experiencing. I know it sounds too good to be true and you are a doubter, but I bet he will try it if you ask him to.
Here is a list of benefits I found here:
Benefits To You ...
--- Teenager reports all pimples went in two weeks (verified).--- MS, Parkinson's, Hashimoto's and Arthritis improvements.
--- Huge detox to the body, this has been verified via client response to lymphatic massage (clients on IBT no-longer display symptoms of toxin flush) when they are sleeping on an incline.
--- Sleep right through the night. Breathing problems eliminated, sleep apnea, snoring, cot deaths resolved. This is absolutely amazing and will save the lives of thousands of people.
--- Provides Fascia Trauma Unwinding - Check the Myofascial Release menu. Absolutely incredible how this function of Inclined Bed Therapy operates. If you want to feel young, pain free, energized and in top health, give this a go.
--- Bones actually grow longer, you will grow taller.
--- Balances the pelvic girdle and addresses Scoliosis/Kyphosis/Lordosis and Dowager's hump problems.
--- Never be cold again in Winter, IBT keeps the body metabolism ticking along. You will get hotter in Summer, so take off the extra covers.
--- Clients with high blood pressure have seen their blood pressure normalize after a few months. Give it a go !
--- Nightly dreams become lucid (may be a product of lower toxins in the body and elevated oxygen levels).
--- Your heart wont work as hard, now this is going to extend life 10, may be 20 years, may be more ? (Just do it)
--- Oedema problems resolved. Yep, medical science got it wrong telling you to raise your feet, raise from your head and be startled by the results.
--- The most common report is that sleeping on an incline feels more natural than sleeping flat. People after sleeping inclined for a few months are never happy going back to sleeping horizontal. This is very addictive, you'll actually enjoy going to bed.
--- I have monitored several clients who used to spend up to $40 per month on general headache and pain killing drugs. They now have extra savings as they no-longer suffer head-aches or pain. Ooops! Mr Pharmaceutical won't like this. This may very well affect Pharmaceutical profits. Spread the word, because no one else will.
--- A message to smokers! For the first few weeks, may be a month, you will start coughing when you get out of bed in the morning, and this may pass after half an hour or so. This is IBT repairing your lungs. The increased humidity in your lungs and respiration improvements will provide an opportunity for your body to help repair damage done from smoking. IBT will also make it easier to kick the habit and for you to enter the wellness zone.
--- The best part is, it is free. Just a few blocks of wood under your bed. Always start out at 3 or 4 inches, then work up to 6 to 8 inches incline.
Personally, I no longer have to sit at the edge of my bed before I rise. I used to "black out" upon standing. My menstrual cycle has regulated and I actually feel normal most days! I had forgotten how that felt. I haven't has this much energy last through out the day in 4 years!
Happy Healing Everyone!
My Upcoming MRV
I am working with an imaging center here in Utah to get tested for CCSVI. I gave them Dr. Haacke's protocol and they are working on getting it approved and set up. It should be ready by late next week. I am excited and impatient, but very happy that they are doing the correct protocol and obtaining the needed software. I want it done right or else it is just a waste of my money, which is in short supply right now.
It seems the type of doctor best suited for the job is an Interventional Radiologist. To find one to talk to near you, visit this website : http://www.sirweb.org/
I really hope that the process of bringing CCSVI to light and getting treatment accessible will happen rapidly. My big question is why haven't we seen anything on the new inthe States about this? I guess I need to use my connections and do it myself! =)
It seems the type of doctor best suited for the job is an Interventional Radiologist. To find one to talk to near you, visit this website : http://www.sirweb.org/
I really hope that the process of bringing CCSVI to light and getting treatment accessible will happen rapidly. My big question is why haven't we seen anything on the new inthe States about this? I guess I need to use my connections and do it myself! =)
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