2 Weeks, 2 Days

I hope you all aren't getting too tired of these little updates, but I just keep feeling a little bit more normal everyday and I want to share.
The past four days I have not been achy! My shoulders are still tight, but I am not hurting. This is such a relief! Yesterday I had the young women over at my house for the weekly activity, so I had to clean my house. I swept and mopped the floor, I did the dishes, cleaned up the family room and even crafted quite a bit. Normally after doing just one or two of those things, along with the busyness of having 8 twelve-year-olds over, I would have been completely useless and exhausted, but I wasn't! Sure I was tired, though not exhausted and my body didn't ache and I still made dinner, cleared the table and was able to put the kids to bed without being grouchy and then Curtis and I watched a movie.
My bad days are as good or better than my good days were and my good days are a little more what I would consider normal each day. Still no more headaches, but my ears have felt some pressure behind them (cold related I hope?).
One thing that does concern me a little is I feel a little tickling on my foot, my hand, or on my scalp (one area at a time, not all at once) a couple times the past couple of days. I don't normally have this sensation, so it leaves me scratching my head a little, no pun intended. (hee, hee)

11 Days Post Procedure

Since my Liberation Procedure I have been feeling pretty good. I am not a new person, but I do feel a difference. My optic neuritis pain, that has bothered me the last three months, is almost completely gone. My almost everyday headaches do not happen anymore, I had one on Thanksgiving, but so did Curtis, and I had one on Monday, but I'm pretty sure it was sinus related since a had a small cold with stuffiness and a slight sore throat. It is so much easier to be pleasant to my kids when my head is not throbbing. I feel I am also thinking clearer.

I am not bounding with energy, though I had hoped I would be. I did read that one of the main side-effects of Plavix is excessive tiredness, so I do have hope of feeling better when I am done with it in a couple weeks. Time will help and if I could get Claire to sleep through the night it would help too.

I had my yearly MRI on Wednesday. My neuro called and said I have no new lesions and all of my old ones are smaller. That was great news. It would be so exciting if this procedure help prevent anymore, ever! =) My sister Alaura is scheduled to get a venogram/possible angioplasty on December 22nd. I am so excited for her. Though she has CCSVI, she does not have MS and this will hopefully make it so she NEVER does.

More Observations

Yesterday I noticed how crisp, clear and bright things are. If you would have asked me before the procedure if the sight in my right eye was somehow dimmer, I would have said no. It is subtle, but there is a difference, like switching from a normal TV to a high def TV. I have also noticed a slight improvement in my left eye, nothing miraculous, but I think it's a good sign that my eye will improve over time. Also I have climbed the stairs today without really noticing. I used to feel like there were rubber bands attached to the bottom floor and every step got harder and harder and when I made it to the top I felt I needed a rest. I didn't even think about the climb when I got to the top today, I just went on with my business. These are small things, but encouraging. The big miraculous thing will be having the progression stop! That would be incredible and allow me to live an amazingly normal life.

I tried to take it easy yesterday, but with three kids it's hard to do. My incision got really sore by the end, but it feels fine now.

I will be scheduling my MRI and MRV today. I haven't had one since my diagnosis and the MRV will help the doctor see how well the repair went. I'm not really looking forward to another 48 hours of pumping and dumping. It is so much easier to just feed her, plus my pump doesn't work very well.

Improvements

I noticed two things last night that I feel point to proper blood flow. Several times a day my ears would ring, for seemingly no reason, they have not rung since the procedure! Also, every night as I layed there trying to sleep I would feel and hear a strong pulse in my head. I tried to hear that last night and I couldn't! Even laying very still and listening very quietly, all I could feel was the very slight beat of my heart, just as it should be.

Liberated and I'm Feeling Good!

I went into the hospital at 8:30 this morning to have angioplasty on my veins. Everything went really well. The doctor did a very thorough job of looking at all of my cerebral veins again and took lots of pressure measurements to make sure all was open and flowing as it should, which meant a lot of holding my breathe. He found that my jugular vein wasn't narrowed as they thought. He said the other doctor must have had the catheter up too high in the vein and caused the reflux that he had seen. The azygos vein was narrowed though and he did balloon that area.

At one point during the procedure I felt a lot of pressure and some pain in my chest, I mentioned it and they said they were ballooning it right then. They put a lot more catheters in and out this time, different lengths and sizes and I could feel them being more rough. That is pretty much the only place I am sore right now, just above my leg where they were inserting it.

I'm not sure if I feel any different yet. The sedation and anesthetic made me pretty tired and I have been trying to take it easy today. I think only time will tell. My mom made the analogy of unwatered, brown grass. Even after you have watered it, it still takes a week or two to green up again. I do feel a little clearer, not in eyesight but in awareness, if that makes sense, but I haven't tried to do much and it has only been 7 hours.

I am on blood thinners for a month. I have to inject myself with Lovenox twice a day for a week and then take Plavix for a month. The doctor checked and said both are ok for breastfeeding.
They are expensive meds, over $1,000 just for Lovenox, but my insurance paid for all but $250. I've never injected myself before, I hope I can do it tonight.

My Next Venogram

I talked to Dr. Hatch yesterday. He said he has been studying my images and found my jugular vein is significantly narrowed right at the valve at the top of the vein. He didn't notice it at first because it is common for valves to be narrower than the rest of the vein, but not this much. He also found a couple places in my azygos vein (the one that drains the spine) that are narrowed and can be opened also.
It is good news that he found something to fix. My next venogram is scheduled for November 22, the Monday before Thanksgiving. I plan on taking it easier this time during recovery. The last venogram through me for a loop. I should feel better within a week or two and hopefully I will have more energy and stop the progression of MS. Wahoo!

3 is the azygos vein.
I guess mine isn't nice and smooth like that if it has a couple of narrow spots.

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!

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!!!

Year in Review

What a year! How did I jam so many changes into just 365 days?

Nathan turned one, he learned how to walk, talk, jump, and "ride" a bike. The age from 1 to 2 is so fun!

We moved in March, we love our new home and are getting to know our neighbors. I am still not as comfortable as I was with my old ward, but it will come. It just takes me a long time to make friends.

The stress of the move caused me to get optic neuritis, which lead to an MRI and an MS diagnosis. Not long after, my sister was also diagnosed with MS and my Aunt Wendy ended up in the hospital with her worst MS exacerbation. She is still in a nursing home. What a crazy time for my mom. I think she took it harder than I did.

I completely changed how I eat. I started on the Best Bet Diet, which a lot of people have success with slowing their MS symptoms with. Then I tried out totally raw and then started adding in some cooking, but high nutrition foods. I would now call how I eat Whole Foods, no processed, 60-80% raw and I avoid all "bad" foods. I am really enjoying it and learning more each day.

Because of my diet changes I have lost 60 lbs! In March, when I was depressed and had no energy I desperately wanted to lose weight, but I felt it was impossible, but worth a try. It is hard to believe I lost that much just this year! I have a 20 lb goal for this coming year.

My sister Alaura stayed with us for the summer. It was so nice to have her around. She helped out with the kids for all my doctor appointments and was great company.

Audrey turned 4 and started preschool. She loves it and I feel she is very ready for kindergarten next year.

I got pregnant, quicker than expected, but still exciting. It only last nine weeks. I am still a little sad about it, especially since I am still not pregnant again. Maybe this year...

Curtis got a pay decrease, which led to a new job. He is basically doing the same web programing, but for a company that we feel has a better future.

We went on a dream vacation to Hawaii! I thought it would be years before we got the opportunity, but we found a deal we couldn't pass up and I reached my 60 lb weight loss goal. What a wonderful vacation!

This year should be a good one. We need to rebuild our savings, so we won't be doing anything fancy, except maybe some medical expenses. I will hopefully be tested in a couple weeks for what is called CCSVI, a lack of drainage from the veins that drain the brain. I will than pursue a fix for the problem. We also hope to have another child at some point. Either way it will be exciting and wonderful.