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!

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! =)