I began writing this blog in March, 2010. It is amazing to me that it has been two years since CCSVI came into my life in November, 2009. I started writing in this forum at the suggestion of my brother. I had been sending out occasional updates to my family and friends via email. Once CCSVI began filling my every waking moment, I found that I had new, exciting information to share on a more regular basis. I didn't want to overwhelm people with another email from Nicole; hence this blog was born. With it friends, family, and eventually anyone interested in my experiences could sign up to receive updates via email, or just check in at their convenience. I've said it before but it is worth repeating: Thanks, bro.
I have spent these past two years living on a roller coaster of emotional and physical highs and lows. It has been quite a ride. As of today, November 11th, I am officially six months out from my last treatment. For those of you keeping track, that is two months longer than my previous run after venoplasty. I had joked that I seem to be lasting exponentially longer with each treatment: 1 month, 2 months, 4 months, and now I am still going strong at 6 months. I don't wish to have to go back at 8 months, but I cannot complain if that ends up happening. Hopefully it won't!
During these past six months I have been able to more fully live my life. My legs still get tired, heavy, and/or sore on many days, but I have at least as many days when the legs feel good! Regardless of how they feel, they can still do what I need them to do for me. What an awesome gift.
I find myself taking for granted the clear thinking, healthy swallowing, and lack of mental and body fatigue.
Wow!
I am living the life of a full time mom. When the girls are in school, I do laundry, pay bills, run errands, exercise with and without the trainer, and occasionally meet a friend for lunch. After school life kicks into high gear with carpools, making dinner, spending quality time with my family, and cleaning it all up at the end. One day I will get smart and do more meal preparation during the day when I have more quite time. Hey, it's only been six months, at least I'm thinking about it!
All of this living does not leave me the same amount of time I used to have to sit at this computer and write. As my fellow bloggers can attest, it takes thought and time to write something that I would deem worthy of asking others to read. I am having some trouble finding the time and motivation to do that these days.
As I write that I feel a little bit selfish. You have all graciously stuck by me while I rode the wild coaster, and now that I am back on solid ground, I don't want to leave you hanging. Family and friends have become the (VERY important) minority of my readers. I believe that more of you are fellow CCSVIers. It is for you that I feel compelled to continue writing.
If I was not living this wonderful life, I would sure want to know all about it, especially if I was contemplating treatment myself. I would want to see that treatment can potentially take someone like me from being virtually housebound to walking and shopping at Costco by myself yesterday! I'd want to hear that swallowing, fatigue, and brain fog can improve almost 100%.
So while I may not have exciting new things to report on a weekly basis, I will continue sharing my experiences in the hopes that it may inspire or inform as many people as possible.
For example, I DO have some interesting news to report today! Last Friday I received three shots of botulinum in the form of Dysport (same as Botox) in my left hamstring. It wasn't too bad! I am still waiting to see if I have any reduction in pain, and improvment in my gait. We started with the lowest dose to be safe. The doctor told me that it will take about a week to feel any changes, and that benefits peak about week 3 or 4, then slowly wear off. With each subsequent treatment, benefits last longer. I can have my next dose 3 months after the previous one. Eventually he believes that I will only need them every 4 months, or 3 times a year. We will reevaluate the dose based on my experience this time. We can use more if necessary.
So far I am not feeling any different. My hamstring still hurts, but I am optimistic that this will bear fruit- eventually. I will let you know! Until then I will keep working to rebuild my leg strength, and continuing to appreciate all that CCSVI treatment has given back to my family and me.
If you want to know about all of the exciting developments in the real CCSVI world outside of my little life (and there are more and more each day!), please check out the CCSVI in Multiple Sclerosis page on Facebook, and the best blog out there: www.wheelchairkamikazi.com written by Marc Stecker.
Friday, November 11, 2011
Friday, October 7, 2011
Oh snap!
Please accept my apologies for a couple of errors in my post from Wednesday. First, no big deal, but I wrote that I spoke with Dr. Tornatore in November 2010 about being tested for CCSVI. It was actually 2009! I can't believe that this all began for me almost two full years ago. Time flies when you have hope and feel better than you have in years!
The bigger fumble was in my understand, or misunderstanding of Dr. T's explanation of Dr. Fox's study. He did not do any autopsies, but Doppler ultrasound tests. The wonderful Joan Beal explains Dr. Fox's abstract very well here. Turns out I got it ALL wrong. I was thinking about a different item that was written by doctors in Rome. They DID do autopsies on two MS patients who died of other causes and found IJV problems. Please read for yourself here. Again, thanks to Joan for the link.
Now all about my Botox inquiry...
I saw a wonderful neurologist at Georgetown who was recommended by Dr. Tornatore. Dr. B. specializes in botulinum toxin injection for distonia and spasticity, among other things. He was very knowledgeable about MS spasticity. He got bonus points from me for knowing about CCSVI, too!
After an exam he told me that I am very good candidate for botulinum treatment for my left hamstring. I still can't get my head around the fact that I may be close to getting relief from the constant ache in my leg. I am a die hard optimist, who after careful research, believes that the best will happen. I cannot imagine what it will feel like to have anything but a rock-hard hamstring, but I am excited to find out!
Dr. B. is going to be very conservative with me because I have a "small frame", but mostly because I am ambulatory. I will have a BIG problem if he over treats my muscle. I am confident that that won't happen because Dr. Tornatore thinks he is excellent, and he is prepared to disappoint me by using too little for my first treatments. Sounds like a good plan to me! As I said, I am an optimist and don't spend too much time dwelling on the "what if"s. I say optimist, you may say naive or stupid. Semantics.
I am going to have two injections of Dysport in my hamstring, which is the same drug as Botox. It comes in smaller doses, so it will be less expensive. My first treatment will give me benefits for approximately 6 to 8 weeks. The doses must be spaced 12 weeks apart. Dr. B. told me that the effects are cumulative, so the second treatment should last for 10 to 12 weeks. By the fourth round he is hopeful that I will be able to go 16 weeks between treatments, therefore only requiring three a year.
I'm a little nervous for the actual shots. He will use EMG: electromyography to guide the injections to the exactly right spots. Lying on my stomach while a doctor sticks multiple needles in my leg sounds very unappealing, but if the results are what I expect, it will be worth it. I will be taking my wonderful husband with me for moral support, and his very big, strong hands to squeeze. I channeled my pain through two labors by squeezing those hands and they didn't break then, so this will probably be no big deal. Gulp.
It will take about a month to get insurance approvals, and for the doctor to get the drug. I am probably going to have this done in early to mid November. I've lived with this tight muscle for almost 10 years, so another few weeks is certainly doable.
I saw my trainer after my appointment and she is almost as excited about this as I am! She said that we will document my strength and abilities before the shots so we can objectively keep track of any improvements that I have. A less spastic hamstring will allow my quadricept to work better, which will hopefully improve my gait. Dr. B. pointed out that I need to really work on my right hip flexor so that my right leg will be as equal to the left as possible after treatment. My trainer and I honed in on it today, and it will be a primary focus for the foreseeable future.
It is so fun and exciting to have real physical goals, and an actual shot of achieving them. Before CCSVI treatment that was simply not possible. I was absolutely unable to do enough exercise to make any improvements to my strength. If botulinum interrupts the signal from the nerve to the muscle, then my legs must have been filled with the stuff before Liberation. Signals just weren't getting through. No amount of ambition or determination could will my legs to push pedals for more than an excruciating few minutes. All of the optimism in the world couldn't convince my legs to cooperate if they cried, "Uncle."
Now I can push myself to do one more minute if I want to do it. My muscles burn, but in the "hurts so good" kind of way. I have a long way to go to beef up my stamina, though. I would like to be able to do more than a 10 minute ride and a 10 minute walk in the same session. Just two years ago that sentence would have been unimaginable. I would have killed to be able to do that much! I am grateful that I can, but now I want more. Can you blame me?
I have not forgotten that the other shoe could drop at any moment, however sitting around waiting for it to happen is NOT an option. I am living my life in the present, and appreciating every wonderful day that I have. I even appreciate the "just o.k." days! In fact, any day that I feel better than I did, and can do more than I could do, on March 2, 2010 (the day before my first Liberation), is a great day. Perspective is everything, isn't it?
The bigger fumble was in my understand, or misunderstanding of Dr. T's explanation of Dr. Fox's study. He did not do any autopsies, but Doppler ultrasound tests. The wonderful Joan Beal explains Dr. Fox's abstract very well here. Turns out I got it ALL wrong. I was thinking about a different item that was written by doctors in Rome. They DID do autopsies on two MS patients who died of other causes and found IJV problems. Please read for yourself here. Again, thanks to Joan for the link.
Now all about my Botox inquiry...
I saw a wonderful neurologist at Georgetown who was recommended by Dr. Tornatore. Dr. B. specializes in botulinum toxin injection for distonia and spasticity, among other things. He was very knowledgeable about MS spasticity. He got bonus points from me for knowing about CCSVI, too!
After an exam he told me that I am very good candidate for botulinum treatment for my left hamstring. I still can't get my head around the fact that I may be close to getting relief from the constant ache in my leg. I am a die hard optimist, who after careful research, believes that the best will happen. I cannot imagine what it will feel like to have anything but a rock-hard hamstring, but I am excited to find out!
Dr. B. is going to be very conservative with me because I have a "small frame", but mostly because I am ambulatory. I will have a BIG problem if he over treats my muscle. I am confident that that won't happen because Dr. Tornatore thinks he is excellent, and he is prepared to disappoint me by using too little for my first treatments. Sounds like a good plan to me! As I said, I am an optimist and don't spend too much time dwelling on the "what if"s. I say optimist, you may say naive or stupid. Semantics.
I am going to have two injections of Dysport in my hamstring, which is the same drug as Botox. It comes in smaller doses, so it will be less expensive. My first treatment will give me benefits for approximately 6 to 8 weeks. The doses must be spaced 12 weeks apart. Dr. B. told me that the effects are cumulative, so the second treatment should last for 10 to 12 weeks. By the fourth round he is hopeful that I will be able to go 16 weeks between treatments, therefore only requiring three a year.
I'm a little nervous for the actual shots. He will use EMG: electromyography to guide the injections to the exactly right spots. Lying on my stomach while a doctor sticks multiple needles in my leg sounds very unappealing, but if the results are what I expect, it will be worth it. I will be taking my wonderful husband with me for moral support, and his very big, strong hands to squeeze. I channeled my pain through two labors by squeezing those hands and they didn't break then, so this will probably be no big deal. Gulp.
It will take about a month to get insurance approvals, and for the doctor to get the drug. I am probably going to have this done in early to mid November. I've lived with this tight muscle for almost 10 years, so another few weeks is certainly doable.
I saw my trainer after my appointment and she is almost as excited about this as I am! She said that we will document my strength and abilities before the shots so we can objectively keep track of any improvements that I have. A less spastic hamstring will allow my quadricept to work better, which will hopefully improve my gait. Dr. B. pointed out that I need to really work on my right hip flexor so that my right leg will be as equal to the left as possible after treatment. My trainer and I honed in on it today, and it will be a primary focus for the foreseeable future.
It is so fun and exciting to have real physical goals, and an actual shot of achieving them. Before CCSVI treatment that was simply not possible. I was absolutely unable to do enough exercise to make any improvements to my strength. If botulinum interrupts the signal from the nerve to the muscle, then my legs must have been filled with the stuff before Liberation. Signals just weren't getting through. No amount of ambition or determination could will my legs to push pedals for more than an excruciating few minutes. All of the optimism in the world couldn't convince my legs to cooperate if they cried, "Uncle."
Now I can push myself to do one more minute if I want to do it. My muscles burn, but in the "hurts so good" kind of way. I have a long way to go to beef up my stamina, though. I would like to be able to do more than a 10 minute ride and a 10 minute walk in the same session. Just two years ago that sentence would have been unimaginable. I would have killed to be able to do that much! I am grateful that I can, but now I want more. Can you blame me?
I have not forgotten that the other shoe could drop at any moment, however sitting around waiting for it to happen is NOT an option. I am living my life in the present, and appreciating every wonderful day that I have. I even appreciate the "just o.k." days! In fact, any day that I feel better than I did, and can do more than I could do, on March 2, 2010 (the day before my first Liberation), is a great day. Perspective is everything, isn't it?
Wednesday, October 5, 2011
Five month anniversary!
It has officially been 5 months since my last venoplasty. That is exactly one month more than my longest run of good health after treatment. I hope it continues!
I am so proud of my 14 year old guest blogger. She wrote from the heart, and I hope that hearing about my CCSVI experience from another's perspective was as interesting for you as it was for me!
I finally got to see my neurologist last week. I had been rescheduled two times before I finally got some face time with the busy man. I last saw him in the end of March when I was feeling fantastic. I couldn't have known then that I would be back on Dr. Haskal's table for my fourth venoplasty only one month later on May 5th! How quickly things can change. Sigh... I had a lot to tell him.
I am very lucky to have such a supportive and open-minded doctor. I wasn't worried that sharing my latest adventure in venoplasty would have any negative impact on our relationship. This is the man who, when I saw him in November 2010 and told him that I was going to go to NY to have my veins tested, told me that he would get it done for me HERE! Not at all the response I had expected after hearing all of the horror stories in the early days of CCSVI from my TIMS buddies!
So I filled him in on how these pesky IJV valves recoiled on me- again. He told me that Dr. Fox from the Cleveland Clinic had just visited Georgetown. Dr. Fox has done an autopsy study on veins of MS patients who died of other causes. I believe that he found some screwy veins and valves! I think that he said that the study will be presented at ECTRIMS (European Committee for Treatment and Research in MS) this fall. Sorry, details are not my strong suit! Dr. Tornatore will be attending, and is looking forward to hearing a lot about CCSVI.
He is thrilled that I am working so diligently with my trainer. He praised my leg strength and walking, although after sitting in his waiting room for 45 minutes, my walking was not as great as when I arrived. Sitting for too long is not good for me. But standing for too long is ALSO not good for me. Sigh... Maybe I should try leaning?
I told him that I had stopped taking LDN,and hadn't noticed a difference. He said that if CCSVI does turn out to be the primary cause of my symptoms, then he would not be surprised that LDN has no impact on me.
I also discussed my always achy, often painfully spastic left hamstring. Without this large spastic muscle, I may not have to take baclofen (medicine to treat spasticity) at all! I asked him about Botox for it, and he thought it was a great idea to investigate! He immediately shot off an email to his colleague who specializes
in Botox for spasticity. I have a consultation this Friday!
I am not looking forward to presumably ouchy shots, but the thought of being discomfort-free for 3 to 4 months at a time is exciting! I am grateful that pain is not one of my biggest MS symptoms. It can be an excruciating part of many people's MS profiles. My hamstring always hurts, sometimes worse than others, but I can live with it. But what if i didn't have to just live with it? It calms down with baclofen, and a heating pad when necessary, but never relaxes completely. I feel that I could do so much more if it would just chill out for me! My trainer and doctor explained that when one muscle is working overtime (my hamstring), the opposing muscle (my quadricept) is limited in what it can do. I need that quad to be working to its best ability! Maybe Botox will be my answer. I'll let you know what the doctor thinks!
I am so proud of my 14 year old guest blogger. She wrote from the heart, and I hope that hearing about my CCSVI experience from another's perspective was as interesting for you as it was for me!
I finally got to see my neurologist last week. I had been rescheduled two times before I finally got some face time with the busy man. I last saw him in the end of March when I was feeling fantastic. I couldn't have known then that I would be back on Dr. Haskal's table for my fourth venoplasty only one month later on May 5th! How quickly things can change. Sigh... I had a lot to tell him.
I am very lucky to have such a supportive and open-minded doctor. I wasn't worried that sharing my latest adventure in venoplasty would have any negative impact on our relationship. This is the man who, when I saw him in November 2010 and told him that I was going to go to NY to have my veins tested, told me that he would get it done for me HERE! Not at all the response I had expected after hearing all of the horror stories in the early days of CCSVI from my TIMS buddies!
So I filled him in on how these pesky IJV valves recoiled on me- again. He told me that Dr. Fox from the Cleveland Clinic had just visited Georgetown. Dr. Fox has done an autopsy study on veins of MS patients who died of other causes. I believe that he found some screwy veins and valves! I think that he said that the study will be presented at ECTRIMS (European Committee for Treatment and Research in MS) this fall. Sorry, details are not my strong suit! Dr. Tornatore will be attending, and is looking forward to hearing a lot about CCSVI.
He is thrilled that I am working so diligently with my trainer. He praised my leg strength and walking, although after sitting in his waiting room for 45 minutes, my walking was not as great as when I arrived. Sitting for too long is not good for me. But standing for too long is ALSO not good for me. Sigh... Maybe I should try leaning?
I told him that I had stopped taking LDN,and hadn't noticed a difference. He said that if CCSVI does turn out to be the primary cause of my symptoms, then he would not be surprised that LDN has no impact on me.
I also discussed my always achy, often painfully spastic left hamstring. Without this large spastic muscle, I may not have to take baclofen (medicine to treat spasticity) at all! I asked him about Botox for it, and he thought it was a great idea to investigate! He immediately shot off an email to his colleague who specializes
in Botox for spasticity. I have a consultation this Friday!
I am not looking forward to presumably ouchy shots, but the thought of being discomfort-free for 3 to 4 months at a time is exciting! I am grateful that pain is not one of my biggest MS symptoms. It can be an excruciating part of many people's MS profiles. My hamstring always hurts, sometimes worse than others, but I can live with it. But what if i didn't have to just live with it? It calms down with baclofen, and a heating pad when necessary, but never relaxes completely. I feel that I could do so much more if it would just chill out for me! My trainer and doctor explained that when one muscle is working overtime (my hamstring), the opposing muscle (my quadricept) is limited in what it can do. I need that quad to be working to its best ability! Maybe Botox will be my answer. I'll let you know what the doctor thinks!
Sunday, September 25, 2011
Guest blogger: My amazing daughter, age 14
I have always been very protective of my mom. When she only had MS, I always walked right beside her, sometimes even holding her hand, because she needed me. Now that she has had her CCSVI treated, she still needs help, but not nearly as much as she did before. A couple of years ago, we knew the limitations of what we could and couldn't do as a family because of that stupid thing called Multiple Sclerosis. The CCSVI treatments have changed all of that. Every day there's something new. Last week my mom worked with her trainer on strengthening her core, and she went on the bike for eight minutes. Just a few minutes ago I learned that she walked on the treadmill for 10 minutes! For most people that wouldn't mean anything, but for me every improvement brings more possibilities of what I can do with my mom.
The other day, I had to go get pants hemmed (bleh). We got to the person's house that was helping us and her driveway was at an incline. A year and a half ago I would have had to come back with my dad because my mom couldn't make it up the hill. But now, she can do it. Slow and steady, side by side, we walked up the driveway, with my arm out just in case. We got up the hill with no trouble at all, and I couldn't have been more proud. That is the type of thing that finding and treating CCSVI has done to not only change the life of my mom, but of our whole family.
I think that having a mom with MS and CCSVI has caused me to mature faster than most kids my age. I have learned to be very understanding when there's something that I want to do that I can't because of my mom's limitations. I have learned to be very cautious and aware of where there are any obstacles that might get in her way. But most of all, I have learned to be very appreciative of everything in my life. I am so lucky that it is a physical, and not mental problem that my mom has, because even though she might have trouble walking, or get tired very easily, she's still always there when I need her. I can still tell her anything, and we can have real mother-daughter conversations that are not at all affected by MS, or CCSVI, or however else you might think of it. I am so lucky, because it could have been much worse, and every day I am so grateful for the life that I have.
My mom is still just like any other mom. She makes dinner, she does laundry, she yells at me when I don't deserve it... and she loves my sister and me the same way any other mom would, CCSVI or not.
The other day, I had to go get pants hemmed (bleh). We got to the person's house that was helping us and her driveway was at an incline. A year and a half ago I would have had to come back with my dad because my mom couldn't make it up the hill. But now, she can do it. Slow and steady, side by side, we walked up the driveway, with my arm out just in case. We got up the hill with no trouble at all, and I couldn't have been more proud. That is the type of thing that finding and treating CCSVI has done to not only change the life of my mom, but of our whole family.
I think that having a mom with MS and CCSVI has caused me to mature faster than most kids my age. I have learned to be very understanding when there's something that I want to do that I can't because of my mom's limitations. I have learned to be very cautious and aware of where there are any obstacles that might get in her way. But most of all, I have learned to be very appreciative of everything in my life. I am so lucky that it is a physical, and not mental problem that my mom has, because even though she might have trouble walking, or get tired very easily, she's still always there when I need her. I can still tell her anything, and we can have real mother-daughter conversations that are not at all affected by MS, or CCSVI, or however else you might think of it. I am so lucky, because it could have been much worse, and every day I am so grateful for the life that I have.
My mom is still just like any other mom. She makes dinner, she does laundry, she yells at me when I don't deserve it... and she loves my sister and me the same way any other mom would, CCSVI or not.
Wednesday, September 14, 2011
Rested and refreshed.
It has been two months since I began my sabbatical from blogging. I have had a wonderful summer, and feel ready to dive back into the world of CCSVI with renewed enthusiasm.
I just passed my four month anniversary of my latest treatment, and I'm still feeling good. I have now officially surpassed my longest run between restenoses. My benefits lasted about one month after my first treatment in March 2010. I felt fantastic for two months after my second venoplasty, and had a great 4 months after my third treatment. Are you still with me? I have now been treated exactly FOUR times for CCSVI.
I am not thrilled to have needed so many treatments. If I could have waited longer to have my first procedure, I would have. So much has been learned in the year and a half since I was originally treated, and over two years since Joan Beal brought Dr. Zamboni's research to the US's Stanford University. Doctors are now meeting, collaborating, sharing information, and planning and conducting studies.
What I have learned about myself in this time is pretty interesting. I am living evidence that this procedure can be repeated at least four times. However, I have come to the conclusion that I had my most dramatic improvements after my second treatment. My first procedure at Georgetown was understandably very conservative. While I had many positive results after the treatment, my veins restenosed very quickly. I was their first guinea pig. I knew what I was getting into.
I found Dr. Haskal for my second treatment and while he is also a conservative doctor, he was much more aggressive than the doctor who treated me first. The results were truly miraculous- for two whole months. Hmmm...
I have bounced back to greatly improved cognitive, fatigue, swallowing, balance, strength, and walking after each venoplasty. But as I have told Dr. Haskal, I don't seem to bounce back as high with each subsequent treatment. It is one of the mysteries that will hopefully be solved as these fine IRs begin studying CCSVI in IRB approved trials. Or maybe it is just me! We MSers may all have the same basic diagnosis, but I have never met one person whose symptoms match mine exactly. It would be so much easier if we all "looked" alike!
In my experience I think that the first, or if necessary, second treatment provide the very best shot at nailing these stenoses, screwy valves, webs, and septums for the greatest symptomatic benefits. I believe that the doctors are getting better at this, but there is still a long way to go, and so much still to learn.
So how am I doing, over two months since I last posted? In a nutshell I can say that I am really well, and not as great as I had hoped I'd be. How's that for confusing?
As I said earlier everything has improved again. My biggest frustrations are my weaker-than-I'd-like legs, and less than stellar balance. I am still waaaay better off than I was before ever hearing about CCSVI. I can take my daughters shopping to a couple of stores in the mall, but not the whole thing. I can stock up at COSTCO without a riding cart! I can visit the Kennedy Center on two feet. But I really depend on the cane outside of the house more than I did after my first treatment with Dr. Haskal. I had genuinely believed that I might be able to eventually get rid of it way back then. Now I am not too confident that that will ever happen. I made peace with my walking companion over the past year, though. It is a friend now, not a foe.
I have been working with the personal trainer twice a week since June, and am seeing steady improvement in my core, hip, and leg strength. It is empowering to see how much more I can do now compared to three months ago. But I wish it was more! As long as I continue to see steady progress in my body, I will keep working with this gifted trainer. She understands MS and CCSVI, and is not afraid to push me, which I really like. Right now I am working on walking on inclines and declines. I hyperextend my knees when I walk due to weakness in my quads and other important walking muscles which I can't name. It is very hard to walk up or down a ramp with stiff legs! I am using a treadmill that can incline at the gym and at home to practice walking with soft knees that can accommodate the ups and downs. Think about me the next time you encounter a ramp, and try it my way. Frustrating, huh?
My report about my still-improving walking is not a complaint. I am eternally grateful to still be on my feet. I believe that without CCSVI treatment, I might not be. My Segway and scooter are still my "long" haul transport devices. Long for me may be a couple of blocks, depending on the day.
I am seeing my neuro, Dr. Tornatore tomorrow for a six month check in. The last time I was in his office in the beginning of April I was on top of the world. I was feeling great and got to show off for him and his first year med student (see here). One month later I was back on Dr. Haskal's table being retreated. What a surprising and frustrating difference a few weeks can make!
Dr. T. is a good man. I am able to be totally honest with him about all of this, and not risk judgement, or poisoning his opinion of CCSVI and its treatment. He has remained open minded and curious about all that I share with him about this exciting new discovery. While he may not be jumping back into the waters anytime soon, as far as I know, I am confident that he is reading and keeping tabs on all of the developments. And if he should ever get behind, he has me to catch him up at our twice yearly meetings! I'll let you know if he has anything interesting to share.
On a completely different topic, my high school freshman daughter has asked if she can be a guest blogger here one day. Of course! I was supremely flattered that she asked, and happy to accommodate her. So the next post you read may be written by a fresh voice. I look forward to reading what she has to say, and hope you do, too!
I just passed my four month anniversary of my latest treatment, and I'm still feeling good. I have now officially surpassed my longest run between restenoses. My benefits lasted about one month after my first treatment in March 2010. I felt fantastic for two months after my second venoplasty, and had a great 4 months after my third treatment. Are you still with me? I have now been treated exactly FOUR times for CCSVI.
I am not thrilled to have needed so many treatments. If I could have waited longer to have my first procedure, I would have. So much has been learned in the year and a half since I was originally treated, and over two years since Joan Beal brought Dr. Zamboni's research to the US's Stanford University. Doctors are now meeting, collaborating, sharing information, and planning and conducting studies.
What I have learned about myself in this time is pretty interesting. I am living evidence that this procedure can be repeated at least four times. However, I have come to the conclusion that I had my most dramatic improvements after my second treatment. My first procedure at Georgetown was understandably very conservative. While I had many positive results after the treatment, my veins restenosed very quickly. I was their first guinea pig. I knew what I was getting into.
I found Dr. Haskal for my second treatment and while he is also a conservative doctor, he was much more aggressive than the doctor who treated me first. The results were truly miraculous- for two whole months. Hmmm...
I have bounced back to greatly improved cognitive, fatigue, swallowing, balance, strength, and walking after each venoplasty. But as I have told Dr. Haskal, I don't seem to bounce back as high with each subsequent treatment. It is one of the mysteries that will hopefully be solved as these fine IRs begin studying CCSVI in IRB approved trials. Or maybe it is just me! We MSers may all have the same basic diagnosis, but I have never met one person whose symptoms match mine exactly. It would be so much easier if we all "looked" alike!
In my experience I think that the first, or if necessary, second treatment provide the very best shot at nailing these stenoses, screwy valves, webs, and septums for the greatest symptomatic benefits. I believe that the doctors are getting better at this, but there is still a long way to go, and so much still to learn.
So how am I doing, over two months since I last posted? In a nutshell I can say that I am really well, and not as great as I had hoped I'd be. How's that for confusing?
As I said earlier everything has improved again. My biggest frustrations are my weaker-than-I'd-like legs, and less than stellar balance. I am still waaaay better off than I was before ever hearing about CCSVI. I can take my daughters shopping to a couple of stores in the mall, but not the whole thing. I can stock up at COSTCO without a riding cart! I can visit the Kennedy Center on two feet. But I really depend on the cane outside of the house more than I did after my first treatment with Dr. Haskal. I had genuinely believed that I might be able to eventually get rid of it way back then. Now I am not too confident that that will ever happen. I made peace with my walking companion over the past year, though. It is a friend now, not a foe.
I have been working with the personal trainer twice a week since June, and am seeing steady improvement in my core, hip, and leg strength. It is empowering to see how much more I can do now compared to three months ago. But I wish it was more! As long as I continue to see steady progress in my body, I will keep working with this gifted trainer. She understands MS and CCSVI, and is not afraid to push me, which I really like. Right now I am working on walking on inclines and declines. I hyperextend my knees when I walk due to weakness in my quads and other important walking muscles which I can't name. It is very hard to walk up or down a ramp with stiff legs! I am using a treadmill that can incline at the gym and at home to practice walking with soft knees that can accommodate the ups and downs. Think about me the next time you encounter a ramp, and try it my way. Frustrating, huh?
My report about my still-improving walking is not a complaint. I am eternally grateful to still be on my feet. I believe that without CCSVI treatment, I might not be. My Segway and scooter are still my "long" haul transport devices. Long for me may be a couple of blocks, depending on the day.
I am seeing my neuro, Dr. Tornatore tomorrow for a six month check in. The last time I was in his office in the beginning of April I was on top of the world. I was feeling great and got to show off for him and his first year med student (see here). One month later I was back on Dr. Haskal's table being retreated. What a surprising and frustrating difference a few weeks can make!
Dr. T. is a good man. I am able to be totally honest with him about all of this, and not risk judgement, or poisoning his opinion of CCSVI and its treatment. He has remained open minded and curious about all that I share with him about this exciting new discovery. While he may not be jumping back into the waters anytime soon, as far as I know, I am confident that he is reading and keeping tabs on all of the developments. And if he should ever get behind, he has me to catch him up at our twice yearly meetings! I'll let you know if he has anything interesting to share.
On a completely different topic, my high school freshman daughter has asked if she can be a guest blogger here one day. Of course! I was supremely flattered that she asked, and happy to accommodate her. So the next post you read may be written by a fresh voice. I look forward to reading what she has to say, and hope you do, too!
Thursday, June 30, 2011
So much for routine!
I have been working hard with my trainer to strengthen my muscles that lift my toes and on those darn hip extensors! I am really enjoying my time in the gym. I was curious about the differences between a PT and a trainer. I have found that when the trainer is VERY well educated, and the exercises are so basic, there is really no difference! Of course, my insurance paid for my PT at 100%, and they pay 0% for the trainer. I am making the most of the time that I spend with her, and am working the exercises into my day.
My stamina is back to full speed, and my walking is back to where it was before my stressful weeks. I still have quite a long way to go to get to where I would LIKE to be, but for now I can do what needs doing. How can I complain?
I have been fortunate to have attended two shows at the Kennedy Center in the past week, and am going again on Saturday. There is a lot of walking required in that massive facility, especially if you park on the wrong side of the building and have to trek all the way across the joint to get to your intended theater! I have been able to do it pretty damned well if I do say so myself! Luckily my "fancy" black cane matched my outfits beautifully, and I had a handsome man's hand to hold to complete my look. Priorities, right ladies?
I am trying to steer clear of the heat, although high school gyms are like saunas on a bad day. Don't even get me started on the aroma! Aaahh... but to get to see my girl sink a great basketball shot is worth it all!
I took a break from blogging last June (here) because I was struggling with figuring out my next move. I had nothing good to share, and needed to give myself permission to take some time off to find a new doctor to retreat me. Luckily I was able to do that much more quickly than I had imagined. I found Dr. Haskal and was retreated just one month after I signed off for the summer (here read Part 3)!
I am going to allow myself to take a more relaxed approach to blogging this summer, too. Not because anything is wrong. In fact everything is good again, and seems to just be getting better. I am in awe of the stamina of Joan Beal and her tireless dedication to the CCSVI in Multiple Sclerosis Facebook page. I think that the world might actually stop turning if she took a vacation from her role!
Luckily for me I am not Joan. I appreciate being able to share my little role in this awesome new discovery. But as a small player, I have the luxury of taking breaks. I promise to share with you any newsworthy developments in my life, but I won't bore you with my everyday minutiae. I value your time as well as my own!
Have a great summer my friends. I intend to do the same!
Saturday, June 18, 2011
Crazy busy!
I have been feeling guilty shirking my blogging responsibilities! I try to post weekly but these past two weeks have been filled with awesome celebrations, end of school activities, and preparing my kids for their summer adventures.
The heat has definitely been impacting my ability to accomplish all that I have on my "to do" list. I spent a full hour in Target on Tuesday checking items off of the camp packing list. Did I mention that I spent an hour walking the aisles of Target? That is huge for me. The downside is that I was noticeably wobblier the next day. Aah... I hate rebound!
The good stress of all of these exciting events has impacted me in the same way bad stress does. My walking suffers, and my fatigue increases. I am anxious for this wonderful week to come to a close, and for my lovely boring life to resume. I thrive on routine!
So this post is necessarily short in order to check one more item off of my list. I feel the weight of my week getting lighter by the minute. I should have definitely done some meditation, or at least deep breathing exercises during all of this craziness. I didn't make the time. In hindsight that is pretty stupid. Tomorrow I cross the finish line, so I will stop and smell the roses again beginning Monday.
The top of my next "to do" list will be to practice all of my wonderful relaxation strategies so that I will be better prepared for the next inevitable stressful time in my life. I'm just too busy to start right now! ;o)
The heat has definitely been impacting my ability to accomplish all that I have on my "to do" list. I spent a full hour in Target on Tuesday checking items off of the camp packing list. Did I mention that I spent an hour walking the aisles of Target? That is huge for me. The downside is that I was noticeably wobblier the next day. Aah... I hate rebound!
The good stress of all of these exciting events has impacted me in the same way bad stress does. My walking suffers, and my fatigue increases. I am anxious for this wonderful week to come to a close, and for my lovely boring life to resume. I thrive on routine!
So this post is necessarily short in order to check one more item off of my list. I feel the weight of my week getting lighter by the minute. I should have definitely done some meditation, or at least deep breathing exercises during all of this craziness. I didn't make the time. In hindsight that is pretty stupid. Tomorrow I cross the finish line, so I will stop and smell the roses again beginning Monday.
The top of my next "to do" list will be to practice all of my wonderful relaxation strategies so that I will be better prepared for the next inevitable stressful time in my life. I'm just too busy to start right now! ;o)
Subscribe to:
Comments (Atom)