Right Here in Utah!

Not long after my daughter was born (Sept. 13th, 2010), I started getting really antsy about finding somewhere to get liberated. I found a doctor here in Utah and wasted no time getting an appointment with him. I've been quite busy with a newborn so here are the posts I put on my personal blog:

November 1, 2010: The Liberation Procedure
I have very exciting news, life changing news! I found a doctor here in Utah that is doing the Liberation Procedure and I am scheduled for the venogram/angioplasty on Tuesday, November 2nd. Tomorrow!

This procedure is still experimental, but so many people with MS have had amazing results by having angioplasty to open their jugular veins. The theory of CCSVI is that MS, which we have always called an autoimmune disease, is actually caused by improper blood drainage from the brain.

I am so excited to feel better!

I want to write down the symptoms I am having right now, not to complain, just so that I can compare them with how I feel tomorrow, a couple months from now and years down the road.

A big one for me is fatigue. (Exaggerated by feeding a newborn throughout the night.) I tire pretty easily, I am lucky when I have the energy to make dinner when evening comes around.

Brain fog: I feel like a lot of my thoughts/words/names have to get through a maze before they come out of my mouth. Audrey often finishes a sentence for me and at times I have to use several sentences to explain the one word that I can't come up with.

Light numbness: Usually only in my pinky or pinky toes, it is just a weird/not quite right feeling, not really numb. I have a feeling that this could eventually spread to my ring finger, then my middle until my whole hand feels that way. This feeling is only at times, not always.

I have ringing in my ears quite frequently. If I am lying in bed and everything is quiet, there is always a constant light buzzing sound. I think this points to reflux or impaired blood drainage from my brain.

Optic Neuritis: My eye was mostly better until the last couple weeks of pregnancy, but now it is as bad as ever, with mild aching behind it.

Headaches: They are mild, but last for hours when I have them.

Achy, tingly shoulders and upper back. My whole body yearns for my shoulders to be massaged. They are always so tight.

For having MS, these symptoms are nothing. I can't image what my aunt has dealt with all these years. The procedure is giving me hope of not having to find out for myself.

I will let you all know how I feel tomorrow after I am liberated. Wahoo!!!

November 3, 2010: The Results
The venogram went smoothly. They were able to see that my left jugular vein was blocked. All of the blood flows back over to the right and goes down. This makes sense because my vision problems and the slught numbness I feel is on the left side. The problem is that the doctor did not see an specific narrowing which he could easily do angioplasty on. He is not sure what is causing the blockage, so he didn't do anything. He will be consulting other doctors and his partner Dr. Black is going to a convention this week for the National Association of Phlebotomy where Dr. Zamboni will be the keynote speaker, so there will be lots of people to ask. When he knows what to do I will have the procedure done all over again.

It was a pretty easy procedure, not much pain or recovery. To insert the catheter into my veins, they used a large needle right at the bend of my leg, more towards the front. When they said groin I thought it would be down between my legs, but it wasn't. They gave me a general anesthetic and sedation. I was half asleep for most of it, but could still answer questions and hold my breath when they asked. I could feel the catheter in certain places as it moved through my veins, there was a bubbly sensation that went with it. They kept me for an hour after to make sure I was ok and then I walked out, like nothing had happened, just a little sleepy from the drugs. They said I couldn't lift anything that day and to take it easy the next.

I have to "pump and dump" for 48 hours so that Claire doesn't get any contrast through my breast milk. She is taking a bottle just fine and thanks to a friend who had plenty of milk stored in the freeze, she is drinking mostly breast milk. Curtis fed her all night and let me sleep in another room so I could get a full night's sleep. It was so nice.

So I have CCSVI! That is good news and more proof the Dr. Zamboni is right. It is just a little disappointing I am not "liberated" yet.

I was asked how I heard about Dr. Hatch. There were actually two sources. First I found this (http://www.hubbardfoundation.org/CCSVI_multi-centered_registry_locations.html) website that lists doctors who are doing the procedure. I emailed them and they sent me these names:
Ogden, UT- Sandra J. Althaus

Provo, UT- Carl Black

Salt Lake City, UT- Peter B. Hathaway

And then my "blogging friend" Toby posted about Dr. Hatch here: http://mamawithms.blogspot.com/

She went to Costa Rica to be treated, but her sister is have the procedure tomorrow with Dr. Hatch.

This is all so new, Dr. Hatch has only done the procedure a handful of times for this specific reason but has done the procedure a thousand times for other reasons. There is still so much to learn, but I am excited to be part of it. My sister A has an appointment with Dr. Hatch next week. She has not been diagnosed with MS, but has fatigue issues and has a lesion on her brain, so we kind of suspect it. How amazing would it be for her to have her veins fixed before any real problems occur!

Some Good News

I got a phone call today from Dr. Dake's office. They are currently going through the list of patients to start testing them for CCSVI, but they have not started the clinical trial of angioplasty yet. I explained the I am currently 25.5 weeks pregnant, but expressed my great desire to remain on the list. She said that I am in a really good place on the list and it will be perfect timing to be part of the trial after the baby is born.

I am so excited and relieved to hear from them. Now I know that trials are still in their plans and that I am in their plans! I have been worried about whether or not I should sign up somewhere else just in case things do not work out with Dr. Dake's trials. Now I can relax and enjoy being pregnant and look forward to the baby and the trial.

I have so much hope in CCSVI, I cannot wait to be tested and for my veins to be corrected. Yippee!

CCSVI Information

I really liked this article and thought I would share it: http://www.essentialhealthclinic.com/website/index.php/clinic/ccsvi/ccsvi-information.html?gclid=CKyErMHN-p8CFQMsawodvVnwVg

These excerpts are the ones I found most interesting and helpful:
This is a truly remarkable breakthrough. It also makes sense of some of the previously unexplained findings in MS. The fact that lesions are centered round small veins fits this new theory. The beneficial impact of vitamin D, antioxidants and omega 3 also fits the CCSVI hypothesis. Vitamin D interacts with over 2,000 genes in the body and has a marked impact on vein pathology. Deep venous thrombosis is 50% more likely in the winter months and low levels are associated with increased inflammation in veins.

Vitamin D has a major role in the development of vein inflammation and is also a major factor in the development of venous hypertension. The inflammatory process in veins is similar to that in the development of plaques in arteries and may explain the efficacy of omega 3 fish oils in improving outcomes in MS. In addition to the surgical “liberation” procedure, it makes sense to ensure all nutritional factors are optimized to reduce vein inflammation. Future research should also consider these factors including checking vitamin D and omega 3 levels in addition to regular antioxidant use.

As soon as I read this I went to the fridge and took my spoonful of Cod Liver Oil, it has both vitamin D and the omega 3 oils.

BNAC CCSVI News

I just got this newsletter from the Buffalo Study. This letter is very optimistic. Looks like the study has been a success so far. Very exciting!

Letter from the Director

Dr. Robert Zivadinov, MD, PhD
Director, Buffalo Neuroimaging Analysis Center

February 4, 2010

My Friends,

I write to you today as our researchers are completing their analysis of the first of several studies on chronic cerebrospinal venous insufficiency (CCSVI) in multiple sclerosis (MS). The preliminary results are exciting scientifically and will generate a great deal of discussion among our colleagues and the wordwide press. The study itself continues into the second phase.

Good news! We will begin to offer CCSVI Diagnostic Venous Testing beginning this month. Patients may self-refer or be referred by their neurologist. We have also taken the first step towards treatment of CCSVI, a 6-month study titled, Controlled Randomized Endovascular Therapy (CRET). It will evaluate the safety and preliminary efficacy of therapeutic angioplasty. It is important to understand, however, that we cannot recommend endovascular treatment before we fully understand the safety of any approach we may propose. Thus, we intend to perform double-blind controlled trials using a treatment different from those used by either Prof. Zamboni or Prof. Michael Dake of Stanford. Many thanks to everyone who has been following our research, to those who participated in our first study and those interested in phase 2 of the CTEVD study.

Here is the link to the whole news letter with lots more information.
http://bnac.net/newsletter/BNAC_Newsletter_02-04-2010.pdf

How to Contact BNAC:

DISCLAIMER:

Receipt of this email means you are subscribed to the BNAC newsletter. It does not mean you are a part of any BNAC related study.

Please send only one inquiry to one of the email addresses listed below. Sending multiple emails hinders us in responding to those interested in these studies or testing.

If you have previously contacted ctevd@bnac.net or already filled out the CTEVD questionnaire, please be patient, we will contact you as soon as we can. You do not need to complete another questionnaire for this study. However, if you are interested in one of the other studies, you must email them directly and follow the application instructions. Please check the web site for updates regarding the CTEVD study.

CCSVI Diagnostic Testing

If you would like more information on self referral testing packages please contact ccsvi.venoustesting@bnac.net.

CRET Study

If you would like more information on the CRET study please contact cret-ccsvi@bnac.net.

CTEVD Study

If you would like more information on the CTEVD study please contact ctevd@bnac.net.

Please Email, don't call!

Unfortunately, we have limited resources to answer phone calls and are overwhelmed with the response to our recent newsletter. Please contact us via email to the appropriate address listed below rather than via phone, and we will answer your emails as soon as possible. Thank you for your cooperation.

To get the most accurate and up to date information please visit our web site (www.bnac.net)

Dr. Dake's Clinical Trials

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! =)

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.

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:

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! =)

Canada's MS Society Calls for Research!

So Canada's MS Society is now backing research for CCSVI, now it is time for the US to follow suite!
http://www.theglobeandmail.com/news/national/ms-group-calls-for-research-into-potentially-paradigm-shifting-theory/article1374954/

CTV story on CCSVI

This Canadian Documentary is really well done and explains CCSVI wonderfully.
http://watch.ctv.ca/news/w5/the-liberation-treatment/

I am so excited about this CCSVI prospect. I have an appointment set up with a vascular surgeon tomorrow. The protocol for the ultrasound and MRI are a little different than the standard, some technicians who have not been trained in it are not finding the stenosises (sp?). So bringing in these protocols is very important. We do not want everyo9ne to rush in and get tested by an untrained radiologist and find nothing when there is something there. This would make the theory seem wrong, even though Dr. Zamboni and Dr. Dake have found it in 100% of MS patients.
You can find the protocols here:
The ultrasound protocol is here: http://csvi-ms.net/en/content/how-perform-doppler-examination-multiple-sclerosis-patient-dr-simka
And the MRI protocol is here: http://www.ms-mri.com/protocol.php and more detailed here: http://www.ms-mri.com/docs.php

I dream about this and think about it all day. I feel like I can live a normal life if these veins are corrected. The only disease progression Dr. Zamboni's patients had was when the vein reclosed. That is why Dr. Dake uses stents, they keep the veins permanently open, whereas the ballooning can be temporary.

I can't wait until tomorrow. I am prepared to stage a sit down in the doctor's office if he says he can't help me. I will not give up. I am confident that I have a stenosis or two and that it can be corrected and that it will stop the progression of MS.

Potential MS "Cure"

This was on the local news (abc4) last night. This procedure uses intense chemotherapy to "reset" the immune system. 90% of those who had the procedure had no MS symptoms (or at least no progression) 1-3 years later.



This is a great prospect, but I still wonder if it is an actual cure. Relief of all symptoms for years with out additional medications is incredible though. I do worry about the effects of chemo, particularly on the reproductive system. I am not done having kids, so I feel this is not an option for me.

I still see CCSVI as a very likely cause and if that can be fixed then maybe chemo would not be necessary.

Inflammation

I just read that during times of inflammation, the blood brain barrier becomes more permeable, which makes avoiding inflammation all the more important in helping to keep MS symptoms at bay.

I enjoyed this article about things that cause inflammation:
http://www.womentowomen.com/inflammation/causes.aspx, a recommended read if you are serious about lessening your inflammation. Also more specific diet suggestions for reduce inflammation: http://www.womentowomen.com/inflammation/naturalantiinflammatories.aspx

Just a quick overview:
Diet is huge, too much insulin causes inflammation, so low carb diets are helpful.
A proper balance of omega-3 and omega-6 oils is crucial.
Avoiding food sensitivities helps.
Intestinal inflammation (which more of us have than we realize have) can be helped by probiotics.
Stress increases cortisol levels which affects insulin and increases inflammation.
Hormonal imbalances can also affect it. This article only mentioned menopause, but I am still interested in learn how hormonal changes in pregnancy and menstruation could affect inflammation.
Environmental toxins can contribute.
Panic attacks or being severely frightened (dream or other wise) causes the blood vessels to dilate. Could a vein malformation and fright cause more blood to be refluxed? Probably.