Friday, October 24, 2014

All The Things I Wish I Could Say...

"How are you? You look great!" Pause & think, "Moron! God! The only thing that I want to do at this very minute is crawl into bed & hibernate there indefinitely." Instead the answer that leaves my mouth is, "thanks! Things are great!" Why do I respond this way? Because no one really cares if a person is tired, or depressed, or if a progressive disease has robbed them of their dreams. They often don't even know what MS is! How do you explain fatigue that has become so crippling that death would be an easier alternative than constantly pretending?

Ok! Enough with the dark & gloomy! Let's try again, "How are you?" Well a lot has happened since my last blog in 2010. CCSVI was a miracle for me until August of 2013. I had no fatigue, no vertigo, & I no longer needed disease modifying drugs! I felt great! Not only did I have two young children, I worked as a nurse for a private company, volunteered at various organizations, & worked out 3-5 times per week. Unfortunately due to federal budget cuts, our family was transferred from Manitoba to Alberta in May of 2013. I started a full-time job in a very busy emergency department working with children with mental health & addiction concerns. I loved it! But as you can imagine the emotional & physical stress of such a job, a relocation, & caring for 2 young girls took my health downwards. By October of 2013, I was taken off of work & placed on Tecfidera. I no longer have feeling in my left leg, I experience severe facial & leg pain, & the fatigue...!!!

At this point, I'm on long term disability & will likely never return to work. I'm angry that a disease of all things has taken away my dreams & aspirations! I worked hard to become a specialized nurse! I had a nearly perfect GPA & scholarships that paid my way through university all while just having been newly diagnosed with MS!! I was excellent at my job & I know I made significant differences in other people's lives. It hurts the hell out of me when people comment, "well at least you can stay home with the girls. I would love to be able to not have to work." How does one with MS respond to such a statement?" "Ya, I love that I can't fulfill my passion anymore, duh!" It's one thing to personally choose a new normal vs being forced into a new normal.

Don't get me wrong, in all of the above-mentioned misery, I do count my blessings. I am beyond blessed to have an amazing neurologist, psychologist, & family physician who genuinely care about the best interests of me & my family. I am thankful that my husband is so helpful & understands when "I just can't..." I am thankful that because I'm not working, I do have a bit more energy that I can give to my kids.

Well those are the things I wish I could say & I've said them! What do you wish that you could tell someone when they just don't get it?

Wednesday, June 30, 2010

One Month Post Liberation Update

Hello to all of my faithful followers!
I'm so sorry for not writing an update sooner, but as you all know, life is crazy busy!

It has now been five weeks post liberation and I am happy to report that things are going well. I have only had a half of a day with mild vertigo. I used to experience vertigo at least twice a week and it was severe enough that I would need to crawl on the ground. I would also constantly vomit from the vertigo. As such, since coming back from Egypt I have gained seven pounds! The vertigo diet is no longer in effect! I have had no headaches and no neuropathic pain. I do continue to struggle with finding words, and experience some mild numbness on the left side of my face. I feel that my energy levels have improved, however I find that my body and my MS are affected by hormonal levels which ultimately caused about a week of short-lived crushing fatigue.

Many people ask me if I am afraid that my veins will re-close and ask me what I will do if they do re-close. There is a lot of variation on the re-stenosis rate ranging from 20-50%, however I have absolutely no control over if my veins will re-close. I have made the decision that instead of worrying about if my veins will become narrowed again, I will put my energy instead into believing that they won't re-stenose. At this point in time in my life, I feel that I need to take comfort and be surrounded by people who are optimistic and hopeful otherwise it is far too easy to go down the "slippery slope" of despair and doom and gloom. If I continue to feel good, then I will not even think of the chance of re-stenosis.

I was completely amazed this past week after learning that a friend of mine with primary progressive MS and who was liberated in Costa Rica is doing amazingly well. I can say with no word of a lie or embellishment, that this young man struggled to walk and had severe ataxia. His MS course was quickly progressing and I watched him and his family struggle through every single day dreading what the next morning would bring in terms of loss of function. Until people walk in these shoes they truly will never understand the true meaning of despair and loss of control. I am happy to report though, that my friend is doing fantastic. He is able to walk longer periods without his cane on a daily basis, his ataxia has improved to the point that he can do a deep knee bend. I truthfully have made CCSVI skeptics into believers when I have shared the video of my friend before the procedure and post-procedure. If this is a placebo effect, then my friend is the best actor I have EVER seen.

So there is no guarantee that this procedure will work miracles for every person with MS, but a large portion of the recipients are reporting at least a mild degree of improvement in some aspect in their lives. I continue to fight, hope, and pray that CCSVI diagnosis and treatment WILL be offered in our province.

Take care, stay hopeful, and give your loved ones an extra hug today.

Saturday, June 12, 2010

Two Weeks Post-Op Update

It has now been two weeks since my liberation procedure in Egypt. I must admit, I thought things were not progressing very well for me over this last week when I suddenly felt very tired and my neck really started to hurt. After a few more days my throat got really sore and I thought to myself, "aha, you're getting sick!" I ended up with strep-throat and let me tell you, I actually felt okay. A little more tired than the week previous but that was it! When I would get sick prior to being liberated, I would literally collapse from the couch to the bed, from the bed to the floor and just pray that the day would end. Today I feel great again. Lots of energy, no pain, no numbness, no headaches.

Because of the strep-throat, I visited my family doctor this past week and provided him with my angioplasty reports and pictures of the procedure. We didn't have a conversation around CCSVI, but he was willing to accept the reports and he is referring me for an ultrasound of my thyroid. I didn't feel defeated this time which was a great feeling. I hope that physicians continue to keep an open mind about this procedure and to explore both sides as objectively as possible.

Family life has been great. My daughter continues to keep me hopping and continues to give me a lot of strength. We have also been greatly enjoying time with our neighbors/friends this week. I honestly don't know what I would do without our very kind and supportive neighborhood. It seems like whenever I am feeling lonely or down, someone will show up at the door with a great big smile and a tomato plant!

Take care everyone.

Friday, June 4, 2010

Important Info From Dr. Simka

I received this info from the doctor in Egypt. Dr. Simka in Poland wrote this. I think the last paragraph speaks for itself:

Our main goal of diagnostic procedures is to find all significant (i.e. impairing the outflow) venous lesions. Consequently, we perform Doppler sonography and MR venography as screening tests. Theoretically, both these examinations are not necessary, but in some patients (~10%) they are very important (anatomical variants, borderline pathology, unoperable lesions). Doppler sonography and MRV are only screening tests, i.e. they reveal that there is a pathology and in most of the cases they predict were the pathology is situated. But they are not 100% accurate. Intraoperative venography is far more reliable, but even this test is not perfect. So a combination of Doppler + MRV + intraoperative venography is better. Now, we think about applying also IVUS (intravenous ultrasonography), but it will substantially increase the cost, so most likely we will use it only in selected cases.

Regarding the treatment, we opt for the most safe and the most efficient treatment, which of course is not possible, since those two parameters don't meet it every case. Balloon angioplasty has already been demonstrated to be very safe in a short time, and most likely safety in long time is also nearly perfect. But balloon angioplasty is not very efficacious. In some cases it doesn't work at all, in the others there are late restenoses. The short-term efficacy of an alternative treatment - stenting is much higher. But long-term efficacy (risk of late occlusion) is not known. Although occluded stent can be opened, but probably not in every case. And of course there are known early complications related to stents, namely the migration, that exclude some anatomic variants from stenting (at least using currently available stents). There is also possible the open repair of the vein, but risk and efficacy of such procedures are not known. Thus, all treatment modalities should be regarded as experimental, with still unknown efficacy and safety. The doctors always try to balance the risk and the efficacy factors, but the best solution is not always possible and is not always chosen (importantly, we don't have data on long term consequences of ballooning or stenting).

Now, what about impact of the treatment for CCSVI on clinical course of MS. Our data indicate that the things are far more complicated than it might be suspected.
1. CCSVI is not an equivalent for MS; most likely, MS = CCSVI + some (probably more than one) other factors
2. Consequently, treating CCSVI does not mean that MS is gone. Most of the patients experience good and bad days following surgery, importantly, during infection, stress, etc. the symptoms usually go back. But the symptoms also go back in a case of restenosis.
3. Treatment of CCSVI does not guarantee improvement. There were some patients (not much, still, they were) who experienced worsening. Most of those patients presented with severly narrowed veins that could not be sufficiently managed with ballooning or stenting, but there were also cases with "perfectly" done surgery. So, a patient can improve after surgery (a majority, especially relapsing remitting patients), but no improvement or even worsening is also possible. A reoperation can improve the symptoms in the latter two groups, but again, not in all cases.
4. Probably, surgery for CCSVI + pharmaceutical treatment will improve outcomes. Try to continue your neurological medication if it were working before surgery.
5. Many patients who suffered from transient worsening of symptoms, improved after inclined bed therapy. You can try it, even if not efficient, at least it is 100% safe6. Postoperative Doppler examination is sometimes puzzling. In most of the patients the flow just after the suregery is still pathologic. Threfore we don't perform it after operation (we don't want to stress the patients). Even after some days there are still flow abnormalities, especially after ballooning. So, we think that patient should look at his/her symptoms first.

And, importantly, current situation when patients must travel thousands of miles to have the treatment is neither normal nor is it safe. At the moment healthcare systems seem to overregulated. It must be changed. Especially, cooperation with neurological community and big universities with access to big public money is pivotal. Surgery is not the only solution, it must be augmented by something else.
Marian Simka >>

Thursday, June 3, 2010

One Week Post-Op

It has now been one week since I underwent an angioplasty to improve the circulation of my internal jugular veins and azygos vein. I have noted some improvements. First of all, I feel less fatigued. Today, I woke up at 5:30 AM (before my alarm went off) and drove into work alert. If you recall in my very first blog prior to the procedure, I wrote about driving to work feeling as if I could fall asleep at the wheel. Secondly, I feel warm. My feet actually sweat now. Some of my co-workers who didn’t even know I had the procedure remarked that I looked “really good and rested.”

I also want to mention how truly thankful I am to everyone for their supportive comments and positive thoughts. It really means a lot. I also greatly appreciated when one of our neighbors came over the morning that we arrived back in MB and cut our grass. Our yard is not small, so this was so greatly appreciated! Additionally, a good friend of mine dropped off a full dinner for our family on our first day home. Acts of kindness such as these truly motivate me to be a better person and to appreciate the value of paying it forward. Thank-you, words will never express how truly appreciative I am.

Although I will continue to provide updates as my body heals, I find it hard not to focus on every little pain or muscle jerk. I keep asking myself, “is this the MS, or is it truly a headache etc.?” I have spoken to a few other individuals who were also “liberated” and they too notice that they are consumed with every little thing their body is doing or isn’t doing. I don’t think that this is necessarily helpful in recovery but it is a hard thing to try and ignore.

My “liberation sisters” as we have affectionately named ourselves are also doing remarkably well reporting an increase in energy and physical mobility.

Tuesday, June 1, 2010

Home Sweet Home!

After travelling for a total of almost 48 hours, we made it home late last night! My eyes were burning and red from not sleeping for almost 2 whole days! Regardless, we are HOME! I slept for about 8 hours and woke-up feeling refreshed. I woke-up even before my daughter got up!

It was beyond amazing to see my little angel again! While she looked confused expecting to see her grandma, when she saw me, her little face lit right up with a gorgeous smile and a sweet, "Momma!" All morning, she clung onto me like a little monkey and just rocked back and forth in my lap. This is true and pure love.

As for what I am going to do post-procedure...I am going to look after myself. I decided to quit drinking coffee as well as I will avoid consuming all caffeinated drinks/food as caffeine is a vasoconstricter. I plan to join a rehabilitative gym for not only my body but also my mind and I plan to take more time to be "present" with my family. For the last while, my mind has been so consumed by CCSVI that I was doing everything at a level that was not 100%. I will still focus a lot of my energy towards working with the CCSVI Manitoba Awareness group to ensure CCSVI treatment in MB but I will dedicate these hours when my daughter is asleep or when my husband is busy with work etc.

I feel that I have been reminded that life and love should not be taken for granted. I feel very blessed, very lucky, and so very thankful to everyone in my life.

Sunday, May 30, 2010

The Things I Learned In Egypt

We are now embarking on our journey home to Manitoba from Egypt.

I would like to share a few important life lessons I have learned on this journey with everyone:

1) As a fair skinned, blonde, blue eyed, female I experienced what it is like to be stereotyped against. It wasn’t until the local females grew to know me as a person that they became more accepting of me. The males LOVED me albeit I encountered countless “cat calls” and some very obscene gestures. It was a very different perspective being the anomaly. Having had this experience I hope and believe that I will be a lot more sensitive to people who appear to be culturally displaced.

2) At this point in time I am truly bewildered as to why Canada will not perform the “liberation” procedure for people with Multiple Sclerosis (MS). Working in the medical field I UNDERSTAND the hesitation given that this procedure has not been studied enough to evaluate its safety on people living with MS. For example what if by opening up the veins the extra blood flow causes a reaction that could be very detrimental for those living with MS?

However, after critically examining this question and by living through the liberation procedure, I have realized that I felt a lot more informed about the procedure and its potential complications than I ever felt about the potential complications of the interferon Rebif that I take every other day. I was never informed by a health professional about the possible and very serious long-term side-effects of Rebif, but yet the doctor here in Egypt made sure to go over every single potential complication as well as what to expect symptom-wise before the angioplasty procedure.

As I have recently learned, taking Rebif may have caused a large tumor on my thyroid, and it has also almost wiped my entire immune system out. I think at this point in time, the risks associated with Rebif are far more severe than having had an angioplasty of my internal jugular veins and azygos vein to make them function as they normally should. The doctors all mention that they are uncertain as to the long-term benefits of having the liberation procedure, however Rebif is also a new medication and there is absolutely no way to predict the long term benefits OR complications of this medication.

When I get home I am confused as to whether or not I will resume taking my Rebif. Although my immune system is compromised, I feel forced by the MS Clinic to continue to take this medication. Is this really to my benefit? I really wish an informed healthcare professional could take the time to go over this question with me. However, in reality there are no informed healthcare professionals because they truly do not know the benefits.

In summary, I think that our government needs to let the MS community make an INFORMED consent about whether or not they would like to participate in the liberation procedure. By taking the 10 minutes of time to outline to the patients that at this point in time there are no known benefits or that there are no known long-term complications and having the patient sign a waiver the doctors are “liberated” from liability. People with MS live every day not knowing if they will be able to wake up walking and talking so I highly doubt they will care that if in 5 years there is no known benefit or they end up having a stroke. If they do care, then well, they don’t have to have the procedure performed.

3) I have seen MIRACLES performed on this trip. People with MS who could not walk without the assistance of a walking aid, people with MS who could not bend to pick-up a fallen object, people with MS who could not spin around, all who now CAN do these simple everyday tasks! I watched in amazement as one lady from the U.S. who dragged her feet in to visit me in the hospital on the day of my procedure who just yesterday after being “liberated” stood on one foot and raised her other leg directly up to her head! I’m not making this stuff up. There is no way in my mind that the miracles that I have witnessed are a placebo effect.

In my case most of my MS symptoms were invisible so it is hard for others to objectively gauge my improvements. I came here to be liberated for my family and me. I got liberated to hopefully stop the progression of my MS course before I got to the point of being unable to walk. This procedure does the exact same thing as the interferon medications that the MS Clinic pushes and forces, “HOPEFULLY stops the progression of MS symptoms.”

4) Big question, “Would I do this again if my veins become re-blocked?” My answer, not immediately. If my veins became re-blocked in a year and I noticed an improvement with my MS symptoms, then YES. However, if my veins became re-blocked within months of this procedure, likely I would wait until there is an APPROVED venous stent that would indefinitely keep my veins open they way they were intended to be. It is hard traveling great distances for procedures such as this and being away from my daughter.

The doctor in Egypt made recommendations that because my veins were so seriously blocked that I should be re-evaluated by ultrasound and MRV within three months. Unfortunately, I know that this can’t happen in Canada which is very sad. I’m not sure what happened to the important concepts of health promotion and prevention?

5) PLEASE Manitoban doctors, I hope you are able to read through this very long blog and consider some of it. It is important that people in Manitoba with MS have the RIGHT to make informed decisions concerning their health and well-being.