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