One Month since Michele’s CCSVI treatment… and how it all went…and the walker?
Today marks 4 weeks since I had my treatment, and I am starting to finally feel better; as I had quite a bit of post treatment soreness in my neck, as well as being quite exhausted from the whole experience. Some of our friends had been saying they had hoped it would be like a vacation for my fiance and I as things have been very hard for us with all that has been going on, but I won’t lie it was go go go when we were there. We met some amazing people and had an amazing time though so let me tell you all about it! Oh and there is a wonderful punch line that you have all been waiting for, so keep on reading: )
I would also like to take this opportunity to thank PHILIP for the donation of the Airmiles to getting us there! I am not sure if we have properly thanked you, or even if we have if we have thanked you enough! This was so kind and we are so grateful! I must also tell all of you out there that are wanting to travel for your CCSVI treatment, getting your flights donated is a great way others can help out – don’t be afraid to ask or suggest this : ) Airmiles can also help with the payment of hotels as well : ) Ok so back to my story…
As soon as I dropped my bags in our room at the Ayres Hotel our room phone rang, “MICHELE IS THAT YOU?!” I was confused as to who might be calling me, and who knew that I had just arrived minutes ago. It was Mary, a friend I had been chatting with on a Facebook group for people who come for treatment down here. She was calling to see if I was here yet and to let me know a group of people were meeting in the lobby for ‘cookie time’ (every day at 5 the hotel puts out cookies and often people with MS from our group online meet in the lobby on the nice comfy couches to gather and chat). I unpacked and made my way down with my Aunt and Fiance for cookie time and was greeted by a group of other people with MS. Some of which had already had the treatment either that day, a few days before, or were about to undergo treatment. It was a very powerful, emotional, and wonderful way to spend my first few hours in Newport Beach. All of people I was talking to were: A. from Canada, B. Women of various ages varied walks of life and C. full of amazing stories related to their experiences with MS. I shared mine along with them, as my Fiance and Aunt listened and took it all in; for them it was quite an emotional learning experience, and it was also quite moving for them to see me interacting with others that were going through the same motions as me. For the first time in some time I really felt like I was surrounded by a true peer group, and it felt great!
The next morning it was MRV time. I have had many an MRI since having MS, and they don’t bother me at all. But once I was all wrapped up and pushed into the sardine can that is the MRV machine and it was turned on I was not loving it one bit! I think it was because this was the first time I had it with music on. I don’t know about you but with music and the already loud noises these machines make it was way to much noise! I was trying to do all my yogic breathing techniques and trying to push the button to let the guy know “HEY GUY, HELLO GUY… THE MUSIC… IT HAS GOT TO GO!” But I don’t think he was picking up what I was putting down… so I kept breathing through it and finally the 90mins passed and I was free to go!
I was impressed by how fast everything moves over there as I had my MRV at 10am and by 4pm I was over to see Dr. Hewitt for my Pre-Op visit, to see if I indeed did qualify for having the treatment for CCSVI.
So did I qualify for CCSVI… we were dying to know. YES indeed I did! I had blockages in both my Left and Right Juglars but luckily my Azygos vein, which can often be a big problem for many, was looking pretty good from what Dr. Hewitt could see on the MRV. He even said I could be modelling Azygos Veins! Which we found quite funny. But all jokes aside, he said it looked great, but often they cannot tell 100% from the MRV and that they would make the judgement on what they would do once they were in there. He thoroughly explained what they were going to do, and by thoroughly I mean point by point, and were we ever impressed by how diligent he was. And so we booked a time for the morning and were off on our way, excited to know that indeed I was a candidate for the procedure, and yet nervous all at the same time.
The next morning came, but not soon enough. As my anticipation for the treatment grew so did my nerves, as I am petrified of needles! Beyond the needles though, having this major relapse, coming to California, meeting all these amazing people with MS (both now here in person and networking online) it seems for the first time in the last 2.5 years of having MS, my life has been fully consumed by my illness; and it has hit me like a brick truck! Only 3 months ago I was in a wheel chair, I could not walk due to pain that was so intolerable, I was barely sleeping, I have had to deal with so many doctors and workers of various types coming into our home, cooking that I so love to do has become nothing more but an anxiety causing act,my hands feel like cramped up crab claws, my job that I love is something that I have had to to put to one side, I cannot think straight, reading has become such a challenge that I have come to feel like I have dyslexia, I cannot enjoy my friendships the way I used to and feel many of them are slipping away at rates I cannot even manage to grab ahold of. I can’t even walk my dog that I love so much. I have made progress and have moved onto walking with a walker, but my strength and my endurance is limited, and I am not letting you know this to complain, but more so to paint a picture of where I am coming from, and why the nerves were so high. So much at risk, so much emotion, so much fear of what has been happening and what MS has been all about for me in such a compact amount of time, and meeting more and more people with it and learning about it has been empowering, but also paints a picture of the reality of what this illness really is and how it can manifest. I am a very positive person, and I work hard at keeping positive. At trying to remember what I do have rather than focusing on what I don’t have and cherishing the wonderful things that have come my way. Like meeting the wonderful women here at the WAMS Foundation. So don’t get me wrong when I point out my woes, just bear with me when I try and draw out why I was full of anxiety and nervousness going into this surgery.
Early on the morning of the June 10th my Fiance Don went to go pick up Carmen and Jennie of the WAMS Foundation, as they had arrived and were staying near to Disneyland; coming in to celebrate Jennie’s birthday and see me off to my treatment. It was so wonderful of them to come and see me, and that was a real treat and nice distraction for the morning. Once they all arrived back at our hotel and we were all having breakfast we got a phone call from Synergy’s clinic letting us know that they were running early and we could come in an our earlier! Can you believe it! Medical clinics are generally running late! This was a pleasant surprise so we all packed in our rental car and drove off, excited.
My support team waited in the 5 star lobby while Don and I went in the pre-op to get ready. We had our hugs and a few tears were shed but I knew in my heart I would come out above it all. I must say that I was trying to keep my expectations of the procedure realistic; I did not expect to have it done and run a marathon, or even throw my walker away the next day. I did not expect to regain full use of my mind or my hands, or have full energy allowing me to party like it was 1999 again! lol
I just had hope. Hope that this procedure would allow me to regain some of what I was losing, and hopefully slow down some of the progression this disease is causing in my body.
The surgery was around 45 mins and they treated me amazingly well. Although I was made to feel very comfortable, I still felt pain when they did the ballooning and the cutting of my valves, but it was over quickly and soon I was in the resting area.
While I was sleep off all the ‘comfortable making magic’ they gave me, Dr. Arata came out and spoke with Carmen, Jennie, Don and my Aunty and explained what he had done. We captured this on video, and in fact I have a bunch of video I plan to put together for my next blog post.
As Dr. Hewitt already explained my right jugular had a blockage, and was treated. My Azygos Vein, although said I could model them by Dr. Hewitt, did seem to have a tiny little imperfection and so just to be on the safe side and since they were in there, they decided to open that up as well. The left side is where it got a little more tricky. My left valve, well both valves in fact; are small. With my left one being quite tiny that they needed to tear it open using a cutting balloon in order to open it up more to allow the blood to have better flow (Learn about cutting balloons on their website: http://www.synergyhealthconcepts.com/cutting-balloon/). When using a cutting balloon they have to be careful as not to tear to much, but to tear enough to get the effect they are hoping for. It’s quite an art, as the whole practice is, and I know now that is why I had so much post-op soreness. My valve was torn, as well as my veins were ballooned opened so needless to say my neck region has been very sore. With both the left and right sides of my jugulars and my valves to those veins they got the desired results and I now have optimal blood flow there! Can I get a hip hip hooray!
In the post op-consultation we had with Dr. Hewitt on the following Monday, he was very honest with us. Letting us know that the left valve will have to be watched, and that it will be very important for me to take it extra slow and easy (if you know me that is a big challenge!); and that the chances of that side re-stenosing is higher than someone with a larger sized valve.
The challenges I now face are: A. getting follow up care in Canada; I have gone to my GP who I LOVE and am so lucky that he has been so supportive and helpful. Unfortunately there is no hard and fast way for us here to get an MRV under our health care system or a doppler without going private, so that bridge is yet to be crossed. Dr. Hewitt has asked that I have a doppler every 3 months, if possible, so that we watch what is going on closely. As with a torn valve another thing we need to watch for is scar tissue building up or the blood flow becoming constricted again and we must be diligent in responding to what may occur. If I re-stenosis, and in being honest to myself I know will more than likely happen eventually (and I am not trying to be a Debbie Downer here, just a realist). We still have a ways to go before we can be treated here in Canada. I love the Synergy team and know they are amazing, but I dream of the day we Canadians can be treated here in our home.
And lastly the challenge but fun part that I have control over; lifestyle changes. Less stress, change in diet, and increase in exercise – the typical things we all know we should be striving to do; but now I know I MUST commit to. I have changed over to a gluten free diet and in week 4 have not cheated once! I love cooking and now that it feels like my brain fog is lifting more and more everyday, I am excited to learn new ways of eating. So this is not to hard for me. The exercise part is a challenge as my body is weak and my motivation is a struggle because I still have alot of pain in my body. I am excited that I have been accepted into the GF Strong Rehab centre and will start there sometime soon. I know that the wait list is long, but at least I know I am on it so that makes me happy. Lastly stress… oh that word we all know so closely. It is always something we as humans are working on to get rid of, and I too am in that dance with stress. I think taking this time off work will really help, and evaluating what work and life needs to look like for me when I am ready to go back is what this time for me is about right now.
So I know you are all dying to know the results! Maybe you just even skipped to this bit! I felt it was important to write about the experience for those that may have MS and are thinking to go for treatment to learn from this post; and of course please leave any questions and I will answer them. So Drum Roll Please……
I AM NO LONGER USING MY WALKER!!!!!!!!!!!!!!!!!!! HIP HIP HOORAY!!!!!!!!!!!!!!!!!!!!!
I must paint a realistic picture for you as even though I am no longer using my walker, that does not mean I am no longer experiencing living with MS, so please read on. First few days after treatment I felt terrible and was super weak. Dr. Hewitt even noticed in my post-op that I was not doing so well. Surgery takes alot out of some people and I think pre-surgery we had the fundraiser, and the last 3 months had been so intense for me that this really wiped me out. So right after treatment I was not instantly feeling anything, like some have reported. I still have the pain in my feet and the numbness and tingling was there for a week at the same rate as before surgery, but a few days after surgery I was already walking, slooooowly without my walker (holding onto Don, or always near a wall for comfort sake) In fact the day after I took a stroll on the beach with my new friend Jeni who also had the procedure under the sun! Over the last 4 weeks small improvements have started to happen, and although they may not seem huge to you, to me they are spectacular!
- I read a full chapter in a book! and now I am on chapter 8!!! I could barely read a page for the last 6 months. Can I get a hip hip hooray for reading again!
- I cooked a meal off the cuff and it was super culinary! I love cooking and the kitchen has not been my friend beyond cheese on toast. Well I made polenta, with pesto marinated veggies. grilled them up and served over the polenta with some fresh parm and green salad with lettuce I grew from my balcony garden! (since being ‘sick’ I started a balcony garden as a way to keep relaxed and have some focus and get some fresh air. I recommend it!). Can I get high five for cooking good food again! Don is sure happy about that ; )
- I drove my car!!! I haven’t been driving because I could not feel my feet and my brain fog is so bad. Well both have gone! YAY for being safe to drive again which equals a sense of independence back!!!
- I went shopping all by myself at Oakridge for some bits and bobs for our wedding the other day; after having gone first to the Dr. and then to tea with a friend. So multi-tasking, driving and doing it all alone! It was maybe a bit to much in one day but I DID IT! No walker, no help and I am so excited to report it just keeps getting better!
- And the best part for me, I can walk my dog again, on my own with out the walker getting in the way!
I do still have low energy and by 4 I am usually ready to call it a day. So I am looking forward to the fatigue lifting. My pain is still looming quite a bit but I am pushing through it as I think it is part of my MS that I am going to have to accept and work with. The walking is by no means perfect or easy, but it’s better and I am celebrating that everyday I take steps!
So all in all CCSVI was WORTH EVERY PENNY and EVERY EFFORT it took us to get those pennies and get us there. If you or a loved one are thinking to do it, then I say what do you have to loose? We know it is costly, but there are ways to raise funds and find help, and honestly don’t be afraid to ask for help or to accept it with open arms when it comes to you. People take enjoyment out of helping their loved ones who are suffering, it allows them to feel like they are also making a difference, so by letting others helping you is also offering them a chance to be part of the change they wish to see in the world.
I have said it before and I will say it again; but I am very excited to be part of the WAMS Foundation Team now as their blogger. Of course not all posts will be this long, but I have already started to dig up great resources to share with everyone on how we can continue to learn and grow and nourish our bodies and minds. Because after having CCSVI comes the hard work. The work we commit to doing for ourselves and how we connect as a community of people living with MS, caring for people with MS; friends of, family members of and colleagues of those with MS. To learn more about and support each and everyone one of us touched by this illness.
Have a wonderful weekend everyone, and thank you for reading my blog post today!
ps: just realised I forgot to say a big thank you to my Aunt and Don for coming along with me to California and offering their support and nursing me through this time, and to Carmen and Jennie for visiting me the morning of my treatment! Thank you all! Don and Tia Salete I love you both so very much! xo
And thank you to all the lovely people I met on my trip, the friendships we started are ones I am sure are going to be long lasting.
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