Friday, December 24, 2010
Well, things have definitely improved since last I wrote. I took the kids to the dr. and Jonah has RSV, but he's doing better. We've got him using an inhaler and on some other meds and the German docters took great care of him. The pinkeye is cleared up as well so we're thankful for that. Jake got here after major problems, but still does not have his bags. The weather in Paris and Frankfurt have been absolutely horrible and the airlines are experiencing serious problems. We've got lots of presents in Jake's bag, so that's pretty lame, but we're just glad that he's here!! Yesterday, we went to Rudesdheim and had a wonderful time. We had heisse schokolade (hot chocolate) pommes frites (french fries)in an adorable little restaurant. We took the bus there and the train back and the kids were pretty excited about taking the train. Anyway, today is Christmas Eve and we've got lots of fun things planned. I'm so thankful the kids are feeling better and hope it continues. Our little nephew Clark had the flu for the past few days but seems to be doing better too so we're really grateful about that.
As far as how I'm feeling, I'm feeling pretty good. My legs are extremely bruised, front and back, up and down, I think as a result of being on two different blood thinners. I'm feeling a little dizzy when I wake up, my necks bugging me just a little bit, and my mind feels a little spacey. But I realize that I have not been eating well, sleeping well, or drinking enough water. SO I expect to feel much better when I get home, sleep in my bed, get back to eating healthfully, etc.
I wish you all a Merry Christmas!!!
Monday, December 13, 2010
When we arrived to Paris I thought, "We did it! Woohoo! Now it's just an hour and a half flight to Paris and we're done! What could possibly go wrong now?!" And then, all hell broke loose.
We got off the plane and I took out our itineraries and they didn't have a gate listed on them. So I waited in line with the children and finally spoke to a French woman who looked at my itineraries and said, "You're flying with 4 people, correct?" I told her yes, 4 and a lap child, and she proceeded to tell me that Jonah was not listed on any of my information and that he did not have a ticket. I sat there and argued with her for 20 minutes with no progress at all. Because my airline switched from Delta to Air France in Paris, someone dropped the ball and didn't list Jonah. Anyway, she told me I needed to go through customs, out of the airport, take a bus to terminal 2D and get him a ticket, then go back through security and on the shuttle to my gate. My flight left in an hour. It was 3 AM Utah time. I had no sleep and my children were exhausted. I asked so many people for help and NOBODY would help me. Nobody, nobody, nobody. So I started heading for the terminal. I couldn't find it so I asked someone else and they said not to take the bus but to just walk. So we RAN, and I'm sure it was well over a mile, to the ticket counter, where they gave me a paper and told me it was what I needed to get Jonah on the flight. And then we RAN (poor kids) back across the airport, made it through security (of course, they had to pat down Chandler because he looks like a total terrorist), to the gate, where everyone had already boarded the airplane. I showed them what we had and they said, "This is not good enough. We can't let your baby on the plane." At that point, I lost it. The plane was about to take off and they told me I needed to go BACK to the ticket counter (a mile away) where I had come from and get something else. I could not believe it. I had no idea what to do. I cried and begged and pleaded for her to just call Delta and ask them to clear it up. "This is YOUR FAULT, NOT MINE!! FIX IT!!!" I told her. She told me there was no possible way over and over and finally she got so sick of hearing me that she made some calls. Long story a little shorter, after the doors had already closed to the airplane, she figured out a way to let me on, walked us down to the airplane where they opened the doors and let me and my four children on. What a nightmare. I was so shaken up and so sleep deprived and so ready to just GET THERE, and then they came on the intercom and said it would be an hour before we could take off. Nice. Then, the flight attendent came and informed me that none of my luggage was on the flight and that I'd have to track it down once I got to Frankfurt. UGH! We are still missing one suitcase so Anna and Jonah are without clothes, but we finally got our other suitcases yesterday after a few trips back to the airport.
Anyway, I'm just very thankful that we're here, safe and sound. My kids are really jet lagged. Nobody fell asleep until about 2:30 this morning but hopefully tonight will be better.
The kids are so happy to be at Grandma and Grandpa's house, and that makes it all worth it.
Saturday, December 4, 2010
Well, yesterday was a crazy and wonderful day:) Do you want the long story or the short? I'll give you the long and you can skim it if you want:)
I woke up around 7 and showered and got all ready, just in case I was going to have surgery that day. Then, when they opened at exactly 8 AM I called my insurance & gave them the surgery codes to see if they required preauthorization. They said they did not so I headed to the hospital, just in case there was a chance they could get me in. On the way there, Aunt Callie (who was already at the hospital with my other Aunt Marcia who was getting her venogram yesterday as well) asked the nurses station at the hospital, and they said that they had 10 surgeries already scheduled for the day and that the way things were, they would already be there into the night. Meanwhile, I called the scheduling department at UVRMC and the (snob) lady on the phone told me that there was absolutely no way that they could get me in at all and that I probably wouldn't be able to get in next week either. I told her that I had already spoken to the docter's office, and that they said that they wanted me to get in today and that I was leaving for Germany, etc., etc., and she said, "Are you telling me that you got special permission from the dr. to let you into surgery today, on an already packed day?" I said, "Umm, ya, I guess that's what I'm telling you." haha She was totally skeptical and said, "Well, I'm going to go talk to the Dr. in surgery and see what he says about it." For the next 2 minutes, I prayed with all my heart and soul that the Dr. would tell them to let me in. She came back and in a very annoyed tone said, "Have you had anything to eat or drink since midnight?" I happily answered, "nope!" And she said, "Can you be here at 10:?0?" I said, "I'm on my way!" Amazing.
So, I didn't end up getting into surgery until about 2:00, but I was willing to wait all night if I had to. I was just grateful to get in at all.
They began the venogram and first looked at my jugular veins. Both jugular veins were 50% narrowed, which they didn't see (or hadn't occured) in Costa Rica. So they ballooned those. Then they checked my azygous, and it looked like it was still opened from the first surgery. Then they went into my iliac (where the May Thurners is) in my left leg and found that, not only was it closed, but it was a "complete mess," as the dr. put it. When he saw all of the scar tissue surrounding it and all of the mess of smaller veins that had formed out of it, he decided it would be better not to stent it. I layed there on the operating table and BEGGED him for what seemed like forever to put the stent in. He told me over and over that there was too much scar tissue and that he thought all of the other veins that had formed were compensating well, and that he would just balloon it, and that might give me a good 5 to 10 years of it being opened. I told him that when it closed back up (which would probably be sooner rather than later, considering the first only lasted 5 months), they'd have to balloon it again, and that would just create more scar tissue, and then it'd happen again, and so on and so forth, and that I felt it was worth the risk to just put the dang stent in. After telling him how strongly I felt about it and getting pretty emotional, he finally took a deep breath and said okay. He tried and tried to get in on the right side and couldn't so he eventually decided to make a new incision on the left side and go in that way. The stent, which is 6 centimeters long, glided in way better than he expected and he was really relieved and suprised and happy that it went so well. And so was I:). After the surgery he came out and explained to Jake, Corey and Bridgette (my bro and sis in law) what a mess the iliac was and that "Toby FORCED me to put that stent in, but it turned out great." Haha Oh well, I know I'm pushy when I feel strongly about something but ya gotta do what you gotta do right?!?! ;)
Anyway, I know it wasn't smart, but I decided to drive home since Jake and I had two cars at the hospital. I totally puked while driving in heavy traffic. That is an experience I will never, ever forget. Disgusting. By the time I got home, I was in terrible pain, had vomit on me, and one of my incisions had started bleeding and was dripping down my leg. I held some pressure on it and the bleeding stopped, but the pain did not. It was horrible. Intense pain that started in the right side of my abdomen and shot down my leg and into my back. I didn't really have any pain with the last surgery so it worried me a bit. I called the dr. and he said that they probably hit some nerves when they were trying over and over to reach the iliac through the right side and hopefully it would feel better in the morning. So I took some pain meds (and a generous dose of cough syrup haha) and was able to sleep through most of the night. I woke up in quite a bit of pain this morning but once I got up and moving it got better and better. It's still a little painful now, but it continues to get better and I'm confident that I'll be back to 100% in a couple of days.
As far as my MS symptoms go, the pain that I was experiencing before in my legs is completely gone, my dizziness is gone, my eyes aren't wigging out anymore, my neck no longer hurts, and my left leg is no longer weak. Incredible. Thanks to each of you for your love, support, kind comments, and most especially, your prayers.
All my love to each of you,
Thursday, December 2, 2010
It's been too long since I've put pictures in a post so here are a couple from our recent family photo shoot. :)
Well, after a whole lot of craziness, and prayers answered, and help from some amazing and compassionate people, it's looking like they might try to get me in for surgery tomorrow. I have to call first thing in the morning and make sure my insurance is okay with it, and then I'll probably head to the hospital and wait to see if they'll be able to get me in. Wish me luck!!!
Wednesday, December 1, 2010
On Thanksgiving Day, my back felt like it had spiders crawling all over it. This lasted two days. And the other day, my eyes started making things look like they were moving when they weren't. And on Monday when I ran my usual distance on the treadmill, I felt super dizzy, drained, and lightheaded afterwards, just like I used to. My neck has been hurting for the past few days and yesterday my left leg was just as weak as it used to be. This morning my left leg is weak, and my right leg is in a lot of pain.
I cried myself to sleep last night with my sweet husband rubbing my back and running his fingers through my hair. It's terrifying. All of a sudden, I'm back to being afraid for my future. I feel like I'm starting all over on how to get through the day. And I feel like I've forgotten how to fake it and push through like I used to.
I called the doctor yesterday who has been performing procedures here in Utah and the receptionist told me I can't be seen until January 7th. This means I'm going to have to deal with this stupid disease for the 19 days we're in Germany. I was so hoping he could just get me in and fix it before I left. I'm flying to Germany with four kids by myself, and I felt fine about it until now. I've been so short with my children the past few days. It's so much more difficult to be a patient, fun, loving mommy when I don't feel well. But it's not fair to them.
I hope and pray that this is just my veins closing again, and that the problem is still fixable. When I was in Costa Rica, they told me that I had May Thurner's Syndrome, where the left iliac vein is compressed by the right iliac artery, and after they ballooned it, they told me that it was just a matter of time before it would close again. So I'm pretty confident that this is what's happening. I just need to get in and get it fixed!!!!!!!!!!!
Anyway, I'm so sorry this is so jumbled and unorganized. Thanks for bearing with me. It's been therapeutic for me to just write. Thanks to so many of you for your love and support. I'm done with my pity party and I'm ready to keep fighting.
Just wanted to update everyone on what’s happening. I’m feeling great! Here are a few of the things I’ve noticed
1- I put my pants on without sitting down or leaning against something. I know this seems stupid, but I haven’t been able to do that for years so my balance is getting better
2- I shaved my legs without having to hold up my leg and lean against the wall of the shower as much as I used to. Again, haven’t been able to do that in years either. I was still a bit wobbly but a lot better
3- Scott and I went on our 1 ½ mile walk this morning and wore my tennis shoes and my feet didn’t hurt…again haven’t been able to do that in years. I usually wear my little $3.00 Hawaii flip flops because they are the ONLY shoes I can wear that my feet don’t feel like I have tons of rocks in my shoes. Occasionally I will wear my tennis shoes but about half way on our walk my feet are KILLING ME and they didn’t hurt at all today. I was still a bit dizzy after the walk but not as bad as it usually is so I’m hoping that it will improve too.
4-One of the best things that I forgot to say was that I went to bed at 8:30pm last night and then woke up at 6:30am this morning and didn’t even feel tired when I woke up. Usually I can sleep 10 hours and when I wake up I feel like I haven’t even been to sleep so hoping the fatigue will get better because that’s one of the worst thing about MS.
Anyway, so blessed to have this behind and hopefully things will keep improving. My hands are still numb but they said it might be a few weeks so I’ll keep hoping! Thanks to everyone for your thoughts and prayers!! Can’t wait for Marcia to have it done!!!!!!!!!
Love you all!
Friday, November 12, 2010
For those of you who don't know, Callie has played a huge role in my life. I didn't have a present mom growing up, and in so many ways, Callie was there to be that mother figure for me. She allowed us 4 kids to stay with her in the summers, she let me live with her when I came out to college, she planned my entire wedding, she treats my children as if they are her own grandchildren (not that she's old enough for that!!!), and helps me in every way that she can. I remember one day when I got out of bed in the morning and slammed right into the wall because I was so dizzy. I had 3 little kids and Jake couldn't be reached at work, and my sweet Aunt Callie came to my rescue. She not only watched my kids, but she cleaned my house too. When I went to have my liberation in Costa Rica, Callie watched my littlest Jonah the entire time. She is truly a saint. I could go on and on and on about how much I look up to and admire this woman. But I won't. I'll just say that I pray this surgery helps her immensely.
Thursday, November 4, 2010
It's a glorious day for a liberation!!! Wooohhooo!!!!!!!!! My sister Andrea (and my sister Brynn, her husband, our dad, and I) went into Utah Valley Regional Medical Center this morning for Andrea's venogram. Ready for the incredible news?! BOTH her left and right jugular veins were 75% closed!!! The dr. opened them up beautifully with a balloon angioplasty. Amazing that she was only diagnosed a month and a half ago and both of her jugular veins were stenosed! The dr. said he thinks they've been closed for years because the narrowed areas had a lot of built up scar tissue around them. Anways, she's doing well, still groggy from the meds they gave her, but resting comfortably at home. I can't wait to see what a difference it will make for her. We were so elated when they came in and told us the wonderful news.
Also, as if that wasn't enough excitement, when we arrived at the hospital and they took us back to our room, there was Lynda who had just come out of her second surgery! 2 veins near her legs were closed, one on the left and one on the right, and the dr. was able to open them successfully. She said she could already feel more warmth in her legs and could stand on her tippy toes like a champion! Pretty amazing.
I can't wait to see how both of these amazing women continue to progress. It has been such an exciting and emotional day. I'll keep you all posted!
Humbled and Grateful,
PS, Andrea's gonna kill me for posting that picture:) You know I love you sis.
Thursday, October 28, 2010
It's amazing to look at the chain of events leading up to this point. Me, not understanding why in the world I needed to go to Costa Rica to be liberated, but knowing very strongly that I did, running into my sweet friend Lynda in Alpine, her asking her vein surgeon friend about the procedure, him researching it and deciding to do it on her, and now they are taking patient after patient and even joining with my neurologist to be part of a national trial! I feel so incredibly blessed and know of a surety that God loves me and He loves you and He is so aware of our needs. Miracles happen!!! Also, my two aunts who have MS are going to see the same Dr. on November 9th and they will hopefully be liberated within the month too!!!!!!!!!! Oh my goodness, just thinking of it overwhelms me with joy and gratitude. I'll keep you posted on how they all do. Thanks so much to each of you for all of your love and support, and please contact me if you need more info(email@example.com) or send my info on to anyone who I can help.
Life is good!!!!!
Sunday, October 10, 2010
Stress was my worst enemy before. Things got stressful and my body would shut down. My neck would hurt, my head would pound, my left leg got weaker, my energy was sucked out of me. My vision would distort things and make them look like they were moving when they weren't, my balance went out the window, and the dizziness would worsen. And I still had to push through and complete my daily tasks, and try not to let anyone know how I was feeling because I didn't want anybody worrying. Now, I have all of these stresses, and I get stressed out like any normal human being would, but I don't have this terrible disease dragging me down, and for that, I am so incredibly grateful.
It's been almost 4 months since my liberation and I am literally symptom free. I am stronger and healthier than I have ever been and I am trying really hard to take great care of this body I've been given, because I truly feel like I've been given a second chance.
A lot has happened in the past little while. I ran into a friend recently in Alpine who also has MS and I told her about my liberation. She was very excited and contacted her good friend who just happens to be a vein surgeon. Long story short, her vein surgeon friend took her into a local hospital a few weeks ago and looked at her veins. One of her jugular veins was refluxing blood and another vein near her left ovary (her left leg is her trouble leg) was closed. They weren't able to get the lower vein open because it was spasming so they'll have to do that in the near future, but he did open up her jugular and she has seen amazing results!!! Right here in UTAH!!!!!!!!! Very exciting.
In some not so exciting news, my dear, sweet, amazing sister Andrea was diagnosed with MS. Andrea is the sister who played a HUGE part in making it possible for me to go to Costa Rica and be liberated. She has been such an incredible support to me and is one of the closest friends that I have. Anyway, I am determined to figure out how to get her veins looked at and fixed. My hope is that we can possibly get her into my friends' vein surgeon friend, but we don't know if that is going to work out. But I just don't want her to suffer with this stupid disease like I have. It breaks my heart. It's more difficult to find out that someone you love so dearly has MS than it is to find out the same for yourself. I want her to be able to get liberated and look back on it as a difficult few months, not years. We WILL get her in. It's just a matter of figuring out when and how.
Anyway, so that's where I'm at. Feeling great, sad that my sister is not, and wanting desperately to help her. I've been feeling very overwhelmed the past few weeks though, like I'm stretching myself a little to thin. Gotta figure out how to lighten my load a little bit, but in the meantime, I'm just thankful to not have symptoms on top of it all.
Tuesday, August 10, 2010
Before I went to Costa Rica, I wanted so badly to run a 5K race. I trained and trained, and as hard as I tried and as badly as I wanted it, my body just couldn't do it. The highest distance I ever reached was 2.8 miles, but that was only once, and it was because my friend would not let me quit. I was weak, dizzy, and felt like I was literally going to vomit. I just figured I was a wimp, and that if I was tougher mentally, I'd be able to push through. I told Jake to run the race for me, and he did great. I'll admit, as happy as I was for my friends and hubby, I wanted so badly to be able to run that race with them.
I started exercising again 2 weeks ago, and I can't believe how much stronger I feel. This morning, I got up before the kids and Jake and turned on a Biggest Loser episode, and started jogging on the treadmill. I covered up the distance screen so that I didn't psyche myself out and ran until they finished their "weigh in" on the episode. I finally looked down and I had run 3.6 miles!!!! My jaw literally dropped. I was shocked! I didn't feel dizzy at all! I didn't feel like I was going to pass out at all! I didn't feel the least bit nauseated! Sure, my legs were tired and I was drenched in sweat, but I felt GREAT! "This is what everyone was talking about!" I thought. Before, I just couldn't understand the "high" that people got from running. I literally felt horrible after running. And now I feel fantastic. I'm so very thankful for this procedure. I feel like it's literally given me a second chance at life, and I want to take full advantage at this chance I've been given. I want to take good care of this body, because I realize now how fragile it is.
Saturday, July 24, 2010
Here are a few pictures of the past month. I am horrible at this blogging thing so bear with me. The text isn't quite lined up with the pictures but hopefully you can figure it out:
Anna's surgery to have her adenoids out. She's doing great.
Rock climbing on a HOT DAY at the family reunion in Altamont. I don't think I would have even attempted this before my Liberation, and I was really excited about how strong I felt doing it. Boating at the family reunion in Altamont, Utah.
Bushmans with Grandma and Grandpa Blake
Mommy giving Jonah a haircut. Look at that farmer's tan! haha
After a long day at Lagoon. We had such a blast. I was absolutely FLOORED that I had NO neck pain after going on rides. I kept getting off of roller coasters expecting my neck to be shooting pain down my spine and up the left side of my head, and it didn't happen, at all. This is very new, and very exciting!!
As you can see it's been a very busy and exciting month, a month full of ENJOYING the heat of the Summer, rather than hiding in the shade, and a month full of gratitude for this gift, given to me by so many. Jonah was up in the middle of the night a couple of weeks ago, so I got up to go and check on him. I stood up out of bed and immediately braced myself, with my feet spread apart and my arms spread out for balance. And then I realized that I wasn't dizzy! Unbelievable. The room is always, always, always spinning when I get up in the middle of the night. Getting up with my newborns was always interesting because I would have to follow the wall very carefully to the baby's room and was always so afraid of falling with the baby. But I've had to get up in the middle of the night several times in the past month, and I haven't been dizzy once! I get all choked up even writing about this. To not deal with dizziness alone has made such an incredible difference for me.
In addition to the dizziness being gone, I can think so much more clearly, my neck pain is literally gone, my balance is, for the most part, restored, the fatigue is gone, my left leg is much stronger and more coordinated, and it has been so nice to be able to enjoy the heat of Summer again. My legs are shaky when I go in the heat, but my energy is not completely sucked out of me. I feel so very blessed!!!
I don't know if this is the one and only answer. I sure hope it is. But no matter what happens in the future, I will never give up. And no matter what happens, I know that God has a plan, and that He is very aware of the needs of me and my family, and as long as we rely on Him, we'll be okay.
Thursday, July 1, 2010
(A picture of Kathy and I. I love this woman. Miss her already.)
First of all, I feel really dumb because so many of you have left such kind, thoughtful, encouraging comments, and I have no idea how to respond to them. Is there a way to respond and ensure that the person who wrote the comment receives the reply? If anyone knows, please help because I am totally clueless to the whole blogging thing.
I cannot even begin to tell you how HAPPY I am to be home!!!!!! As beautiful as paradise is, and as wonderful as our friends are there, being with my babies is better, hands down. I missed them so much and am so happy to be back to my job. Brynn had her hands full with 3 of my children and her two, I'm sure. And it turns out that Jonah had the flu when he was at my Aunt Callie's house. And he gave it to almost everyone in the house! I was so mortified when Callie told me. I felt horrible. Poor little man, and poor everyone else! I am thankful that she didn't tell me when I was there though because I would have been freaking out and unable to do anything about it. She knows me so well. Jake's Aunt Bonnie also came and helped with the kids for a couple of nights, which was so incredibly sweet of her, and my Dad and Jodi took them for the last night. I don't know what I would do without all of the love and support and help from so many of you. I am so truly blessed to have such a loving, and genuinely caring and supportive family. What a gift from my Heavenly Father. No matter what trial we face, we have unconditional love and support from an incredible family. And that makes all the difference.
I am feeling great. It's almost 11PM and I feel tired physically, but mentally, I have so much clarity and I could keep going and going and going! It's a weird feeling to feel the normal kind of tired. Tired for me is being drained completely by the end of the day...having my mind just fog out and be worthless, and my body just shut down. When I got tired before, it meant that my body would stop working, I'd get seriously dizzy (usually Jake had to help me get my meds and get to bed), and a lot of the time I wouldn't even be able to get out intelligible sentences. It's WEIRD to simply feel physically tired. I wonder how long it will be until this energy is normal. I hope I never, ever take my energy for granted again. It is precious.
Here is an interesting article from the NY Times. http://www.nytimes.com/2010/06/29/health/29vein.html?hpw
Tuesday, June 29, 2010
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
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
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
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.
Thursday, June 17, 2010
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.
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
Friday, May 28, 2010
Thursday, May 27, 2010
Our sister, Toby, was diagnosed with Multiple Sclerosis in 2004. She has 4 young children ages 6 and under, and is often debilitated by this terrible disease. She has been on the very long waiting lists in 3 different countries to receive treatment, and she just found out yesterday that one doctor is willing to squeeze her in to one opening he has next month. But that requires her to raise several thousand dollars before next Thursday (June 3, 2010)!
We need your help to make this treatment possible for our sister! Any donation amount would help! Even just $5. If you can donate, please click on the Paypal "Donate" button below. Or to avoid Paypal fees, you can also go into any Wells Fargo branch and say you want to donate to the "Toby Bushman" account and make your donation there.
We thank you from the bottom of our hearts!
(For more information about Toby and the "Liberation Treatment," visit www.mamawithms.blogspot.com .)
Last November, my Aunt Marcia, who also has MS, sent me an email about a new treatment for MS called the Liberation Treatment. Dr. Zamboni in Italy discovered that 100% of the people he tested with MS had constricted jugular veins and or azygos vein, which was not allowing the blood to flow from the brain to the heart, and causing lesions on the brain! This problem, when fixed with a simple angioplasty procedure, was allowing the blind to see again and the lame to walk! As I watched the story, I wept. I knew that this was big, and I knew that I had to find a way to be tested and treated. The excitement soon wore off when I found that all efforts in this country are being shut down because the liberation treatment hasn't gone through years of trials and studies. I didn't want to give up, though, and after hitting a lot of brick walls, one of my new friends in Canada opened up a door for me to be treated!!! Finally!!! I'm going to Costa Rica to be treated on June 24th, just 4 weeks from now. I can hardly believe it. After failing over and over, the fact that it's really happening just seems so surreal! Honestly, it's really kind of terrifying. I am absolutely dreading leaving my children for seven days, and I'm not sure yet how I'm going to pay for it, but I know it's right, and that's all I need to know I guess. The rest will work out.
Wednesday, May 19, 2010
Anyway, I woke up one morning last week and I wasn't dizzy anymore!!! But even more exciting, I had my energy back! I was so excited I felt like I was back from the dead! Finally, I had the energy to do my hair and makeup, get the kids bathed and dressed, get my house clean again, and take the kids for a walk and to the park. I took it slow for the first few days because I didn't want to go back to the way I was. But, by now, I'm back to jogging and feeling great. I am so thankful. Having this disease certainly helps me to appreciate the good days. And most days are good.
Tuesday, May 18, 2010
The day after Liberation: http://www.youtube.com/watch?v=KYNhYtVojSQ&feature=related
Sunday, May 16, 2010
KIM: Is the facility in Albany going to be part of a new clinical trial, or will it treat patients as part of a registry for the Liberation Treatment. I ask because I am sufficiently convinced from listening to the researchers (from the April 14th forum) that a registry should be used in future liberation treatments in order to keep track of prior MS status, treatment for CCSVI, and for post-treatment follow-up and information sharing.
ME: After watching the forum online (http://hosted.mediasite.com/mediasite/Viewer/?peid=5625f9f8badd40eab1b1a3ebb41a8ba6), I definitely agree that there needs to be, at the very least, a registry for those being tested and/or treated for CCSVI. I am still waiting for the Dr. to contact me so I will certainly be asking him that question and I'll let you know what he has to say.
KIM: But unlike Dr. Zivadinov, I don't think halting the CCSVI treatments is necessary or reasonable. On the other hand, to have one death out of 30 or so procedures is enough to give me pause concerning your treatment. As far as I can tell, though, that death resulted from the use of a stent, which Dr. Zamboni was adamantly against using compared to the more simple angioplasty.
ME: The dr. that I am planning on being seen by does balloon (angioplasty) as a first option, and a stent as a last resort if the vein is too collapsed. I really hope that he doesn't have to use a stent if I do have CCSVI because, as Dr. Zivadinov as well as Dr. Zamboni have said, we don't know the long term effects of a stent in the jugular vein wall. So this concerns me especially for younger patients such as myself, who will have that mettalic piece of equipment in my vein for a long time. As I understand it, artery walls are much different than vein walls. Artery walls are more muscular in nature, and vein walls are much thinner and fibrous in nature.
Thanks for your questions Kim, and more importantly, thank you for your love and support through this process.
Thursday, May 13, 2010
Varicose & Spider Veins SclerotherapyUterine Fibroid Embolization (UFE)Cancer Ablation Treatment
At the present time, we are offering both diagnostic and endovascular treatment for CCSVI (Liberation Treatment) in patients with an established diagnosis of symptomatic multiple sclerosis who reside both within and outside of the Albany, New York area. Doppler ultrasound testing and MR venography are available to diagnose disease in the dominant veins providing outflow from the central nervous system. Based on the findings from these examinations, we can consider patients on an individual basis for endovascular treatment.
Endovascular treatment for CCSVI consists of both angioplasty and stent placement. These procedures are most typically performed from common femoral vein access. First a venogram is performed. This involves placement of a small catheter (approximately the size of a piece of spaghetti) into the vein. This catheter is then advanced into the right and left internal jugular veins as well as the azygous vein. The catheter is advanced using fluoroscopy so that we can watch it as we move it through the venous system into the correct position. While the catheter is in each of those veins, contrast or dye is injected so that images can be obtained. These images will enable us to determine if the veins are patent (open) or if they have a stenosis, which means that a blockage exists within the vein that is potentially compromising the blood flow as it leaves the central nervous system.
If a stenosis is present, we can then move forward with angioplasty for treatment. This involves exchanging the catheter that was used for the venogram for a catheter that has a balloon built into it. Once that balloon is positioned across the narrowed area that was identified on the venogram, the balloon is inflated. This helps to treat the narrowing. The size of the balloon is selected based on the size of the normal vein above or below the narrowed area. Once the angioplasty is performed, another venogram is performed to confirm that the treatment was successful at addressing the stenosis. At this time, stents are being considered when angioplasty results in no change or a worsening of the stenosis that was targeted for treatment. In that case, a stent, which is a “tube” made of metal wires that goes into the vein and holds the vein open, is placed across the stenosis. It is placed in the vein in a manner that is similar to an angioplasty balloon and once the stent is positioned appropriately across the stenosis, it is released into the vein. Patients who receive a stent will typically need to be on anticoagulation medication for at least 3 months.
Like most invasive procedures, there are some risks associated with this procedure. These procedures do use fluoroscopy for guidance, which is a form of low-level diagnostic radiation. The average fluoroscopy time for a venogram is typically <10-15 minutes. Angioplasty may add 5-10 minutes to that total. Based on these fluoroscopy times and based on the fact that different areas of the body are being imaged within that time, the risk of radiation-induced injury as a result to this procedure is almost nonexistent. Any risk, however, will be minimized with careful use of fluoroscopy and with other procedural maneuvers designed to limit exposure. These procedures also require the use of intravenous contrast for visualization of the veins before and after treatment. The contrast used is an iodine-based dye and its use has been associated with both allergic reactions and impaired kidney function after administration. The risk of allergy can be minimized by pre-medicating patients with a history of allergic reactions to contrast, which is why it is important for us to know in advance if this is the case. Evaluating kidney function prior to the procedure, which will be done at our facility, can minimize the risk of impaired kidney function. In addition, only the minimum amount of contrast necessary for performance of the procedure will be used during the procedure.
Venography and venous angioplasty do carry some additional risk. In order to place a catheter into the internal jugular and azygous veins, it has to pass from the inferior vena cava, which is the main vein below the heart, into the superior vena cava, which is the main vein above the heart. As the catheter passes through the heart, it can cause changes in the heart rhythm. That is why patients are monitored during the procedure. This risk can be minimized by carefully observing the catheter as it passes through the heart. Once the catheter is within the internal jugular or azygous vein, it is possible that blood clots can form, which is unusual in this situation. During angioplasty, venous rupture is possible, but that risk should be minimized with careful sizing of the balloon that is used for angioplasty. In Zamboni’s study (59), some patients reported a headache after angioplasty, but this went away spontaneously in all patients. Finally, migration of a stent placed in a patient with CCSVI has been reported. This migrated into the heart and did require an additional procedure to remove the stent. This is felt to be an extremely rare risk of this procedure.
All of these procedures require an observation period of 3 hours before patients are discharged from our facility. If you are traveling to us for these services, we ask that you remain in the area for at least 24 hours if you have been treated with angioplasty or stent placement. Patients who undergo a venogram that reveals no evidence for CCSVI can leave once the 3-hour recovery has been completed.
I've already heard from 2 people from Canada and it's really neat to talk to people who actually know what it's like to live with this horrid disease. Oh, and the cost of testing and treatment is $5000.00. This beats the $10,000 plus travel expenses for Poland. $5000 is still $5000, and I don't have it, but by golly I'll figure that part out somehow!!! Me and my aunts need to start having some major yard sales to get our $15,000 plus travel expenses!!!
The dr. in Albany has only done around 20 CCSVI treatments so far (compared to over 300 that they've done in Poland) so of course that worries me a bit, but he's been working on veins for a long time, and has a ton of experience with veins, all of which, from my research, seems to be very impressive. We'll see what happens!! My aunt is on the phone as I type trying to get on the list. Oh this is so exciting I just want to laugh and cry all at once, but I can't because I have a diaper to change and dinner to get on the table:)
Wednesday, May 12, 2010
I guess I should start out by introducing myself. I have no idea if anybody will even read this, but I figure it will be a good outlet for me, and if something I post on this blog helps just one person, I will feel like it was worth the effort. My name is Toby Bushman. I am 26 years old and have been married for over 7 years. I have four children, ages 6, 4, 2, and 1 and stay at home with them. When people ask me, "Do you work?" I respond, "Yes, I work my butt off. I'm a stay at home mom." :) I recently graduated with my associate’s degree from Utah Valley University and am transferring to BYU next semester to pursue a Bachelors in Psychology and a Masters in Social Work, all through distance education while my kids are sleeping. It's a lot of work, but it's something I'm passionate about and determined to complete. My husband, Jake, is an air traffic controller for the SLC airport.
I was diagnosed with Multiple Sclerosis on November 4, 2004. Two of my aunts have MS, so when the left side of my body went numb, and I was having neck pain and dizzy spells, I knew I needed to have some MRIs. I have 4 lesions on my brain and 2 on my spine.
MS is a difficult disease to have for many reasons. It is difficult to explain to people how MS affects me. So when I am going through a relapse of symptoms, like I am now, it is very lonely. Seems like nobody understands what it's like to appear normal, and yet struggle silently with overwhelming fatigue, dizziness, weakness, and pain. It is very scary to not know what the future holds for me. My biggest fear is becoming a nuisance to my family...having my husband and children have to feed me or, worse, change my diapers. The thought terrifies me. If I can just make it on my own until my children graduate high school, I will be extremely thankful.
But, for the first time since my diagnosis, I feel hope. The knew research about CCSVI (Chronic cerebro-spinal venous insufficiency) makes so much sense to me, and now it's just a matter of figuring out how to get tested and treated! I first heard about CCSVI when my aunt (who has MS) emailed me this link: http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20091120/W5_liberation_091121/20091121?s_name=W5
I cried tears of joy that day at the thought of living a life free of this disease. I have tried to be tested here in Utah, and have had some progress, but not much. I tried to get into Stanford, but they are currently not taking patients and waiting for approval for a clinical trial. I've applied to be a part of the trial in Buffalo, NY but even if I do get a call for that, it does not include treatment, just imaging. So, I've decided to pursue going to Poland to have Dr. Simke and Dr. Ludyga treat me. Currently, the wait is until 2012, but I'm hoping they might be able to at least get me in for imaging while I'm in Germany visiting my in laws this December. If you're interested in the Poland route for CCSVI, the place that is doing the Liberation Treatment is called Euromedic, and their official website is http://www.euromedicpoland.com/. The information to register is on this site. If you call the main phone number, it's difficult to find someone who speaks English, but I got a hold of a woman named Marta who is the manager there and she spoke good English. You can reach her at 011 48 692 015 969. You're welcome to email me at firstname.lastname@example.org if you have any questions or advice for me.
I have never been on any of the traditional treatments for MS, mostly because I've been having babies since I was diagnosed:) But now that I am finished bearing children, I've begun taking LDN (Low Dose Naltrexone), and it has helped me tremendously. Before starting LDN, I was ALWAYS numb somewhere, and now, I am very rarely numb anywhere. Until the past 2 weeks, I have not relapsed in well over a year, and it has been wonderful. If you decide to try LDN, I highly recommend getting it from Skips Pharmacy in Boca Raton, FL. They send it to me every 3 months and Dr. Skip is a pioneer in compounding and researching the drug as it relates to MS. Ok, well I think that's enough for now. I'll be in touch.