Tuesday, June 29, 2010

My sister in law Kim had these questions, so I thought I'd share my answers with all of you. Thanks for caring so much Kim. Love you.

Is it unusual to have the initial scan detect narrowing and then not find it in the venography? Yes, very common. Pretty much everyone who had the MRV's results did not match up, so they have done away with the MRV. It is a miserable experience and it is just not accurate enough. The most accurate way to see narrowing in the veins is to go inside the veins and look at them.

How can they be sure they got it all? I guess there's no way to be certain, but Dr. Fallas was extremely thorough. He showed us all the pictures of my veins, and they looked wide open, except for where they were narrowed:)

Will you have a follow-up MRI? Doppler? Well, the MRI and the doppler have not proven to be at all reliable, so I'm not sure. I'd imagine that if my symptoms return, that will be a clue that my veins have restenosed, in which case I would need another venogram. Hopefully, if that happens, by that time it will be a widely accepted procedure in the US. There is about a 30 percent restonisis rate, so there is definitely a possibility of that happening.

And for the vein that is affected (May Thurner Syndrome), can they refer you to a Dr. in the states that can fix it? Will your insurance pay for that? I can just find a vascular surgeon in the states. I already know of a good one. And yes, insurance should easily cover May Thurner Syndrome.

Do they want you to take any MS drug treatments post-Liberation? If so, which drugs? Why? Dr. Zamboni and any other dr. we've talked to does recommend that you stay on any treatments that you are already on. Many people have gone off their drugs and feel great, but many people are opting to stay on them. I will definitely stay on LDN because it's an inexpensive pill that doesn't have any side effects and it has helped me immensely. The drs do not know why LDN works, but it does, so I'm not going to mess with success. Maybe it prevents more stenosis? Who knows. Nobody.

What kinds of follow up will you need? Not sure. I'll ask Dr. Fallas at my appointment today.

Have other patients had any improvement as far as the presence or absence of lesions is concerned? Can you anticipate that any/all of your lesions will go away? Remain? There have been mixed reports about this. Some people have reported that some of their lesions are disappearing. Others say their functions are returning and their lesions remain..that their neurons have been able to find new pathways around the lesions, etc.

Do you feel Liberated? Do any of your MS symptoms remain? YES!!! YES!!! YES!!!!!!!! WEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE!!! I really, really, really do. I feel more clear headed, more balanced, more energized, and more strong. I feel more coordinated, and I have before and after tests that prove it. It's amazing. When I came out of surgery, I was laying on the operating table and tried to do the test with my feet that, just hours before, I could not do. And I was doing it!!!! I was still half out of it, but I was tapping my left foot back and forth on the edge of my bed and couldn't believe it. I literally could NOT do that a few hours before. The past few months, my balanced had gotten really bad. Even when I wasn't at all dizzy, I would tip one way and the other constantly, especially when trying to focus on looking at one thing. Anyway, it's so hard to type out in a few paragraphs but I think you'll see the differences when you see me again. Love you all!!!

Monday, June 28, 2010

Update from the Liberated:)

(Written last night.)

Well Ann and Jeff left yesterday and Corey and Bridgette left today so we're all alone in Costa Rica! Not really. We've made some wonderful friends here. We had such a wonderful time with everyone. We went to dinner and a movie with Esteban and Yalena this evening and had a very adventurous taxi ride back to the hotel.
I am feeling great. I am really tired, but I think that's pretty normal for being past 11 PM. I had physical therapy today and they are really working on strenthening my abductor muscle in my left leg. The physical therapist is wonderful. Wish I could bring her home with me!!! My balance is amazing, but inside my head I still feel a little unbalanced. It's kind of difficult to explain, but I think it might have something to do with the blood thinners (I have to give myself 2 shots a day in the stomach for 30 days). But i do feel like my head is clearer than it has been in SO long. I feel like there is no fog in my brain and I love it. I fell NORMAL!!!!
At this point, I feel liberated and I want to go home to my babies. I miss them terribly. Everyone else here is staying 2 weeks and they're shocked that I'm going home on Wednesday. I just can't stand to be away from them any longer. I am so thankful to all the wonderful people that have helped with them, especially my sister Brynn and my Aunt Callie.
It's overwhelming when I begin to think about all the people who have made it possible for me to be here. It is extremely humbling. I owe them so much more than I could ever give.
This country is so beautiful and it has been so fun to experience the culture of these wonderful people.
I have physical therapy at 1 PM today and then an appointment at the hospital with Dr. Fallas at 4:30 this afternoon. And then, 24 hours after that, I get to see my babies!!!!!!!!!!!!!!! And then I will feel whole again.
Love you all! Pura Vida!

Friday, June 25, 2010

We're back at the hotel! When we got out of the shuttle, everyone was there to greet us. They cheered and clapped and welcomed me with open arms. Such wonderful people. They are so genuinely excited for my success. Dr. Fallas came in around 5:00 PM and showed us step by step the procedure and all of the images. He showed me the blockage in the azygos vein and then when it came to my left leg, he told me that I have a syndrome called May Thurner Syndrome. You can google it to learn more, but basically, in everybody's body, the iliac artery crosses over the iliac vein, but with May Thurner Syndrome, the artery causes the vein to collapse. So, no blood was getting through. He said that he opened it up with the angioplasty, but that there was a very high probability of it closing back up. He said that I need to see a vascular surgeoun and have additional surgery in the States to either put a stent in, or re-route the artery to go under the vein rather than over it. Apparently Dr. Zamboni is seeing a large correlation of May Thurner Syndrome in MS patients along with CCSVI. So, I have CCSVI and May Thurner Syndrome. Jeez. I'm just really glad that they found it because, if left untreated, it can cause a blood clot to form and travel and it can be fatal.
I had a really hard time understanding why I felt so strongly that I needed to come to Costa Rica rather than waiting for Albany. Perhaps the reason is that the dr. in Albany does not look at the veins in the legs. He simply looks at the jugular and azygos veins, as far as I know. He didn't mention anything about imgaging anything else when I spoke to him. Anyway, the results have been better than I could have imagined. We'll post some before and after videos but it has truly been remarkable. 2 days ago, I could not stand on one foot without falling. I could not close my eyes without tipping. I had a lot less strength in my left leg. I couldn't flip my left hand back and forth on my right palm, and now it is effortless! Same with my left foot. It's amazing. I'm so thankful that these are the changes that I'm having, rather than feeling my legs for the first time in years or being able to walk without a cane. I am so thankful that I was able to have this done before it got that bad. It's wonderful, and I thank my Father in Heaven for this tremendous blessing.

PS Yesterday, Sean could not feel the physical therapist touching his leg when he had his eyes closed. And now he can feel if someone just barely touches them. Incredible.

Thursday, June 24, 2010

Update from the hospital.

I'm sitting in my hospital room right now hooked up to an IV and just waiting. Just got some blood drawn. They did the MRI (A million times worse than in the US, but very thorough) about 2 hours ago and then the doppler ultrasound, also very thorough. The hospital staff are wonderful and Corey, Bridgette, Corey's friend Steven, Ann, Jeff, and Jake are all here with me. They actually all just went to the cafeteria to get some lunch:). I don't think I'll be allowed to eat or drink until tomorrow. No biggie, maybe I'll lose a pound while I'm here:) haha
They are very sanitary and careful and helpful here. In the ultrasound, the right jugular looked normal and they found one spot of narrowing on the left. Now we're just waiting, probably for a few hours, until I can get into surgery. In my friend Kathy's ultrasound they didn't see anything, and then they found quite a few narrowed spots when they actually went inside the veins. So there could be more spots, we're not sure. We're all in good spirits and doing fine. Thanks to each of you for all of your comments, your prayers, your emails, your wall postings, etc. I wish I could respond to each of them, but please know that each time I read one, it gives me just a little more strength to keep going and to keep fighting. I can't tell you how much it means to have such an incredible outpouring of love and support. Once I have surgery, we won't know the results until tomorrow morning, and we will post them as soon as we can. Thanks again for all of your support and encouragement. All my love to each of you...

Wednesday, June 23, 2010

Email from Chandler:)

deer mom and dad mi tooth thet wus loos wus bleedeeng on the day after you left i hop youor haeeng fun i hop yur serjree gos wel lovchandler

I am so blessed.

We spent the afternoon at a market looking at souvenirs, etc. Then we we took a taxi to an Italian restaurant and met Steven, Yalena, Bridgette, and Corey there to celebrate Yalena's 25th birthday. It was DELICIOUS!!!!! Steven was one of Corey's mission companions who lives here. Corey and Bridgette are staying at their house. They're a really nice couple and it was fun to hear all about their country and culture. After dinner, we took another taxi back to the hotel and visited with a few of the other patients who have been treated here. It's so neat to be surrounded by people who are refusing to give up; people who are fighting back against this stupid disease. They are doing really well and are so happy to be here and finally seeing some changes after years of doing nothing but declining. Then we went to the jacuzzi for a while and visited some more with Kathy, but it wasn't warm so we came back to the room and now we're headed to bed. I'm exhausted. We'll see what tomorrow brings!!!!!!!!!
Love you all.
We just arrived at the hotel. Gonna go to the market to get some groceries. Corey and Bridgette should be here around 11. We just met Kathy in the hallway. She is my friend from Canada who has MS and who got me into this slot for surgery. Her room is right next to ours. It was wonderful to finally meet her in person. She had her liberation treatment two nights ago. She says that she's feeling good. She is still in the wheelchair but she has a lot more sensation in her hands, she can taste much better, and the pain in her leg is GONE. She said that a while back, she requested that her leg be amputated because the pain was so excruciating and never, ever let up, and now it is gone. Amazing. She's looking forward to rehab today where they'll do some excersizes with her and some nerve tapping, etc. I go into the hospital at 10:30 AM tomorrow and won't be done until late at night. PRAY THAT I HAVE STENOSIS IN MY VEINS!!! We'll keep you all posted!

Thursday, June 17, 2010

Update on Chandler and Anna

While I'm sitting here and the three littlest are napping, I think I'll update everyone on Anna and Chandler's medical issues. Everyone keeps asking me for updates, so I figure this is a good place to put it. Anna goes in for a CT scan under anesthesia at the Riverton Hospital on Monday. She cannot breathe out of her nose and this is causing her particular trouble at night, as she clenches her mouth closed and doesn't get enough oxygen. It is getting worse and worse, and this past week she is acting very tired and grumpy most days, which tells me that she is working so hard to breathe at night that she isn't getting enough restful sleep. Her surgery is scheduled for July 12th, but at until we get the results of the CT scans, we won't know exactly what they will be doing. At the very least, she will be having her adnoids, and most likely tonsils, removed. But they are thinking that there is significant stenosis of her nasal passages, either due to a wall of bone or a wall of mucous. If it is mucous, they can clean it out pretty easily during surgery. If it is bone, the surgery becomes much more complex.
We took Chandler to see Dr. Yamashiro at Primary Childrens yesterday. He adjusted the prosthesis that Chandler has in his mouth and again examined the hole on the roof of his mouth that we have already tried to fix with 3 previous surgeries. The problem is that, after 16 surgeries, there is too much scar tissue in that area, and scar tissue does not stretch well. Each time they have tried to reapair the fistula (hole), it has failed, and as a result, Chandler still has food coming out of his nose when he eats. Dr. Sidiqi recommended just giving Chandler a 6 month break from surgery, but after seeing Dr. Yamashiro, and consulting again with Sidiqi, they're not thinking that's such a good idea anymore. They're really thinking that we need to get this repaired so that we can try to bone graft again before Chandler's permanant teeth begin to try and descend. Now they are saying that the best option looks like cutting the top front bone out and moving it back and reattaching it, and at the same time, taking more bone from his hip and grafting that into his clefts. Moving the bone back, they say, will give it a much better chance of healing, because it will eliminate the need for the tissue to stretch, thus giving it a much higher chance of healing. Then, 16 weeks later, once everything is finally in one piece, they will cut the bone again, and move it back to where it was to begin with. I hope that makes sense...it's difficult to explain. This will be a very difficult surgery and we are still trying to figure out what is best for our sweet little Chan Man. When Dr. Yamashiro was explaining this procedure, I felt the all too familiar feeling of being punched in the stomach. The thought of my little sweet boy laying on that operating table and having his mouth taken apart and put back together rips me apart. At the same time though, I know that our Father in Heaven has a plan for Chandler, and that, if we decide to go ahead with this surgery, he will be okay. Thank you for all your love and support. Chandler is an incredible kid, and he continues to teach us so much.

The Countdown to Costa...

Well, my dear friend Kathy left for Costa Rica yesterday. She's been counting down the days for a long, long time, and now the time has come. You can hear a little bit about her story by watching this news clip.
Kathy is who I have to thank for being able to go to Costa Rica so quickly. I met her online a few months ago and she put in a good word for me with Passport Mecical. Thank you Kathy!!! I am praying for you!! Can't wait to meet you in person.

There are so many emotions going on as I prepare to head to Costa Rica. My biggest fear is that I will get there and they will tell me that I don't have CCSVI and that there is nothing that they can do for me. I know that this is unlikely, and it wouldn't even worry me if I was going on my own dime, but because I am using the generous donations of so many people who sacrificed so much to get me here, it scares me that I will let everyone down. It's kind of an odd thing to hope for the drs to find something wrong (CCSVI or narrowing in my veins), but at least if they find something wrong, it can be fixed. When it comes to this disease, a problem that actually has a solution would be fantastic!!! Yes, they have already found narrowing in my veins, but I can't get formally diagnosed with CCSVI until I get there, so keep your fingers crossed and please say a little prayer for me.

Another thing that I am dreading is leaving my sweet children. My sister Brynn is watching my oldest three and my Aunt Callie is keeping Jonah. I know that this is a huge sacrifice for both of them and words cannot begin to express my gratitude. It means so much to me to know that, if I have to leave them, they will be in good hands. But even with this knowledge, I am not looking forward to being without them. I feel like I'm leaving my heart at home. I keep trying to stay positive and remind myself that I am doing this for them. I want to be around for them. I want to be a healthy mom and I want to be able to grow old and enjoy them and their families when they are grown. These are hopes that, just a few months ago, I had given up on.

But my main feeling is this. No matter what happens, no matter what the outcome is in Costa Rica, I know that I am supposed to go. I prayed about this decision and feel very strongly that this is what I am supposed to do. Whether or not that this is the answer for my MS, I do not know, but I know that I'm supposed to go. I sincerely hope and pray that the reason I need to go is because it will improve my life and lessen the effects of this disease.

But even if this is not the answer I'm looking for with the MS, I know that there is a plan for me. I know that God knows me and loves me. I know that He knows exactly what is in store for me and my family, and the peace that comes from this knowledge is enough to keep me going.

I always think blogs without pictures are boring:) So here is a recent picture of the kids and I with my sweet Great Aunt Barbara. Her sister passed away a couple of weeks ago, bless her heart.

Thursday, June 3, 2010

Thank You.

This has been such an incredible experience. I can't even begin to express the depth of gratitude that I feel to each of you for your love, your support, your encouragement, your prayers, your well wishes, and your generous donations. Thanks so much to each of you for helping our family out and giving me the possibility of growing old with my sweetheart and being there to raise my children and enjoy my grandchildren. To have hope for a healthy future is indescribable and I have each of you and so many others who I don't know personally to thank. I know that God lives and that He loves each of us. Each of you have helped me to feel the love of my Savior so intensely and I hope and pray that you will be blessed beyond measure for your kindness. All my love to each of you.