Sunday, September 5, 2010

Two month post CCSVI treatment injury -- the GOOD, the BAD, and the UGLY!

I made a terrible mistake in my post-treatment recovery and I want to let everyone know about it so they can avoid doing the same. Basically, I underestimated the consequences of trying to do too much. My CCSVI treatment definately increased my energy, but that turned out to be a bad thing, at least for 2 weeks or more. Here's the story...

Over the past few weeks, I've been moving well, swimming, and doing mild exercises (mostly hip and lower body) to build my balance and leg strength. Even though I had ANOTHER bladder infection three weeks ago, I had good optimism going forward. In addition, my doctor saw fit to put me on a daily half dose of an antibiotic to try to wipe these bladder infections from my system once and for all. I have had at least one bladder infection every month for the past four months, so it was time to take stronger action to make sure I had a healthy body to recondition after my CCSVI treatment.

Two weeks ago today, I began a training program using the athletic track at the local high school. My doctor and physiotherapist recommended I use a walker to reinforce and train muscles that would allow me to straighten my stride and strengthen my legs now that I have improved blood flow. A walker allows me to forget a little bit about balance and concentrate on a smooth gait, with no foot drop and even strides. I haven't used a walker to manage my mobility concerns in the past, so this is something new to me, but one that I quickly realized could help me with my training. Little did I realize that a walker would become a lifeline for me very soon!

The first day on a track, I walked slowly and steadily around for 400 metres. It took me 9 minutes and 40 seconds (I used to run 100 metres in 13.86 seconds in school!). As I said, this was my first time using a walker so I didn't want to push it, so I focused on getting the right muscles working and taking it slowly. I definitely felt the difference walking using a walker versus my typical stagger-step that I do to make sure I don't fall. My doctor said we expend an enormous amount of energy maintaining our balance and encouraged me to use the walker so that energy got redirected into walking itself.

This was first thing in the day, so we went home afterwards and relaxed. After about 1 1/2 hours, I decided I had great energy and could go back to the track for another round. Landon was picking blackberries, so I walked around the house and down to the blackberry patch to find him (something I never do -- this involved walking across uneven lawn for about one hundred metres), then stood for about 10 minutes while he picked the rest of the blackberries before heading back to the house. I even carried a basket of blackberries (for those of you not familiar with this west coast fruit, I will tell you that blackberries are like gold -- especially in a smoothie). I was confident of my balance, although I did remark that it was unusual for me to be carrying blackberries because I so often tripped. The last thing I wanted was for Landon's efforts to be scattered in the lawn!

Landon said he still had some work to do, so I headed to the garage and got some hand pruners. This, again, is unusual for me. Normally, my husband backs the car out of the garage and lines it up with the house so that I don't have to walk to the garage (it's about 30 metres each way). I got the pruners and headed down to our miniature lilac.
Here's a picture of the lilac in full bloom, which happens in May around our son David's birthday, so you know why this tree is so special to me (or at least it was). The pruning was going well until I saw a dead branch high up above my head. I couldn't stand fully upright under the tree because of low branches, so my knees were slightly bent and I was reaching high above my head with my right hand, twisting up and to the left. I felt a pain after a few seconds, somewhere in my legs or back, and sat down on the chair I had positioned behind me. I surveyed the branch I needed to prune and decided to try again. Again, I got a pain after just a few seconds before I had a chance to line up the pruners and cut out the dead branch. I sat down and remember saying to myself "come on, you can do this!" One last time, I stood up and held the stretch/semi-squatting position for a second or two longer than before -- just enough time to snip the dead branch before sitting down once more in the chair. At this point, I had no idea of what was to come.

A few hours later, my right hip started to ache a little, which I attributed to my striding on the track earlier in the day. I was even pleased that I could feel results in my muscles! My husband and I decided to relax in our double hammock , but I remember asking him to give me extra time when we were getting out because my hip was starting to stiffen. In an afternoon bath, I added Epsom salts to the water to ease my sore muscle. Again, I asked for extra assistance getting out of the bath because my hip was getting progressively more painful. By eight o'clock that night, I was starting to be in severe pain.

Four and a half years ago, I fractured a vertebra in my lower back in a fall (T12 for those who are interested!). The pain I was feeling that night after pruning the lilac was very similar. I assumed I had reinjured my back and initiated the same treatment protocol I had used for my previous back injury -- lie flat on my back, legs raised at 60°, and only get up to go to the bathroom. In addition, I started taking Advil for the pain. By nine o'clock the next morning, I had already taken more than a 24 hour dose of Advil and the back pain was no better. This is when I made another mistake...

Last January on a trip to the emergency room, a doctor gave me morphine for my high blood pressure (don't ask -- I only took one pill before another doctor told me it was a crazy idea). But, I had the rest of those little morphine tablets in a little brown envelope sitting by my nightstand. I decided to let a few more hours go by to let the Advil get out of my system, then I popped one of those morphine tablets to finally get some relief from the back pain. In about 30 minutes, I noticed I was itching the back of my tongue on my molars. The last time I had that feeling was when I was having an anaphylactic reaction to taking a sulfa drug. I checked and, sure enough, I was getting hives at the back of my mouth.

On the phone now to the pharmacist, she tells me to take Benadryl (Landon had already fished it out of the medicine cupboard) and talks to me for a few minutes while we monitored my reaction. It was clear the hives were subsiding even before the Benadryl took effect, so I took this as a warning never to take morphine again. But I still had the back pain!

For the next 10 days, I alternated taking Advil and Tylenol (eventually switching to Robaxacet instead of Tylenol) every 2-3 hours. The pain never seemed to respond to the painkillers, although I would start getting more cranky after 3 hours, so they must have been doing something. I used a walker, then had to be pushed in a wheelchair anytime I got out of bed, then the walker again every time I got out of bed to head to the bathroom. It hurt a great deal when I moved, when I attempted to sit up to eat, and especially when I went to sit down on a chair or the toilet. Remember I was in a semi-squat position when I injured myself -- I think that's why it hurt so badly when I started to bend my knees on my way down to a sitting position. My doctor, over the phone, told me I was doing the right thing and to wait it out until the pain subsided.

On the 10th day, Landon managed to get me to my doctor's office. I wanted my doctor to poke around my lower back until I yelled ouch the loudest. It took him a few jabs before he hit the bull's-eye. He said I had torn the muscle leading into my pelvis, basically the lowest muscle that is attached to my back.

So now, I continue to do a little bit more every day, still clinging to my new friend (my walker) to keep me steady on my feet so I don't risk reinjury while I convalesce. I know my muscles have weakened over the past two weeks. Many of the gains I realized from my extra walking and swimming and training since my CCSVI treatment are likely gone :-(

I did some videos so you can see my walking while I explain the situation. The first video (blue top) is from my first day walking outdoors after my injury.


This next video (green top) is essentially the same thing done the next day (today). I couldn't decide between the two videos, so I decided to include them both! This one wouldn't load so here's the URL: http://www.youtube.com/watch?v=SlgY6nRLIBs

Finally, this video shows you the culprit, my pruning attempt of my beautiful Syringa microphylla:

One other piece of bad news came a few days ago -- after visiting my doctor, we drove for a couple hours to visit my mother for the first time in a few weeks. When we were almost home, my right leg started getting spasms. These are the first spasms I have felt since my CCSVI treatment. For five years before that, I had spasms every day and they were getting worse. These new spasms lasted about 20 minutes, which I guess is an improvement from the hours they used last. But I didn't like it. Over the next two days, I felt short lived, but definite spasms in both my legs. I don't know whether it was the injury that took up a great deal of my energy or the two weeks lying in bed or the long car trip after not sitting up for two weeks, but the possibility of restenosis in one of the 7 locations I had ballooned entered my mind for the first time.

It's now the third day after my car trip and the spasms seem to have gone again. Nevertheless, it's time for my two month update to the Albany clinic anyway, so I have a lot to tell them and even more questions to ask.

In case you can't see the embedded videos, here at the Youtube URLS:
Day 1 on my feet: http://www.youtube.com/watch?v=t77PdAnn1JQ
Day 2: http://www.youtube.com/watch?v=SlgY6nRLIBs
Pruning no-no: http://www.youtube.com/watch?v=vxUPBFdqr8w

Cheers to all,

Sandra

10 comments:

  1. You are a brave and stalwart spirit.
    What a treasure to your family!
    Sorry you got hurt and hope you recover quickly!
    Hope you a least got a bit of the blackberries for a treat.
    The lilac bush/flowers are beautiful.
    Cheers from Ruth-Ann in Oliver BC

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  2. Angioplasty has provided to be boon for heart patient. They found ray of hope after coming this technology into existence. This has been one of the best technologies used. Stent, is used in this technology. There are also few side effects for this. But in spite of angioplasty side affects this s still very good for heart patient.

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  3. It is estimated that the failure rate of the “liberation therapy” may be 50% or higher, even through the most experienced and best-known surgeons in Poland and Albany, NY. As more and more people receive the therapy there is growing concern amongst patients that the procedure needs to include a post-procedure protocol that is more effective than simply releasing the patient from the hospital or clinic within hours or a day of the procedure.
    CCSVI Clinic Physicians have applied for an International Ethics Board study approval entitled: “PROSPECTIVE, OPEN-LABEL STUDY OF THE SAFETY, EFFICACY AND RE-STENOSIS RATES IN MS PATIENTS WITH CCSVI UNDERGOING ENDOVASCULAR TREATMENT WHO RECEIVE AN ENHANCED HOSPITAL AFTERCARE PROTOCOL. Important previous studies on non-MS patients who have had the same venous angioplasty indicate that it’s critical to position and movement control patients post-procedure, monitor them for days afterward in the hospital with various imaging techniques, and re-treat if necessary. CCSVI Clinic is already sponsoring patients for this protocol with a 10-day stay in the hospital where patients will be imaged daily, post procedure. If there is evidence of re-occlusion, they will be taken back to the OR and re-treated. Past studies of non-MS patients with the same venous blockages have noted a cascade of failure points distally in venous vessels post angioplasty, and the hypothesis proposes that the study on MS patients will produce the same results. Once home, patients will be screened and interviewed at regular intervals by CCSVI Clinic Physician Researchers for several years after the treatment to study the changes and make comparisons between those who have followed the protocol and others who have had the procedure on an outpatient basis.
    It should be mentioned that our research is under much scrutiny and attack from elements that are trying to control the industry and the dialogue. A well-organized campaign to discredit CCSVI Clinic and our research is underway in the social media. We would ask you to have the independence of thought to see through their campaign of deceit.
    Regular research updates will be published on the CCSVI Clinic website http://www.ccsviclinic.ca/ . Questions about participation may be directed toward the CCSVI Clinic administration at 1-888-419-6855.

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  4. CCSVI Clinic Receives Joint IRB Approval for Aftercare Protocol Study.
    Dr. Don Simonson, the Principal Investigator for the study agrees; “Of course there are other reasons that patients restenose, depending on the condition of their veins in the first place, and operator inexperience, so we have designed a study that isolates the aftercare protocol because we feel it may be at least as important, and in any case well worth studying.”
    CCSVI Clinic is already sponsoring patients for this protocol with a 10-day stay in the hospital where patients will be imaged daily, post procedure. If there is evidence of re-occlusion, they will be taken back to the OR and re-treated. To comply with the IRB approval, once home, patients will be examined and/or surveyed at regular intervals by a Principle Investigator (PI) for several years after the treatment to study the changes. Patients will have regular consults with the surgeon who performed their procedure as part of the protocol.
    More and more MS patients are reporting initial success (including vascular and some neurological differences) as a result of the venous angioplasty (liberation therapy) but then regression to previous symptoms sometimes within weeks post-procedure. It is estimated that the failure rate of the “liberation therapy” may be 50% or higher, even through the most experienced and best-known surgeons. Consequently, there is increasing concern amongst patients that the liberation therapy hypothesis needs to include a post-procedure protocol that is more refined than simply releasing the patient from the hospital or clinic within hours or a day of the procedure. If the study hypothesis is correct, it means that there are many other considerations that indicate a post-procedure stabilization period, re-examination, and re-treatment if necessary.Please log on to http://ccsviclinic.ca/?p=830 for more information.

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  5. After 6 months of offering stem cell therapy in combination with the venous angioplasty liberation procedure, patients of CCSVI Clinic have reported excellent health outcomes. Ms. Kasma Gianopoulos of Athens Greece, who was diagnosed with the Relapsing/Remitting form of MS in 1997 called the combination of treatments a “cure”. “I feel I am completely cured” says Ms. Gianopoulos, “my symptoms have disappeared and I have a recovery of many functions, notably my balance and my muscle strength is all coming (back). Even after six months, I feel like there are good changes happening almost every day. Before, my biggest fear was that the changes wouldn’t (hold). I don’t even worry about having a relapse anymore. I’m looking forward to a normal life with my family. I think I would call that a miracle.”

    Other recent MS patients who have had Autologous Stem Cell Transplantation (ASCT), or stem cell therapy have posted videos and comments on YouTube. www.youtube.com/watch?v=jFQr2eqm3Cg.

    Dr. Avneesh Gupte, the Neurosurgeon at Noble Hospital performing the procedure has been encouraged by results in Cerebral Palsy patients as well. “We are fortunate to be able to offer the treatment because not every hospital is able to perform these types of transplants. You must have the specialized medical equipment and specially trained doctors and nurses”. With regard to MS patients, “We are cautious, but nevertheless excited by what patients are telling us. Suffice to say that the few patients who have had the therapy through us are noticing recovery of neuro deficits beyond what the venous angioplasty only should account for”.

    Dr. Unmesh of Noble continues: “These are early days and certainly all evidence that the combination of liberation and stem cell therapies working together at this point is anecdotal. However I am not aware of other medical facilities in the world that offer the synthesis of both to MS patients on an approved basis and it is indeed a rare opportunity for MS patients to take advantage of a treatment that is quite possibly unique in the world”.

    Autologous stem cell transplantation is a procedure by which blood-forming stem cells are removed, and later injected back into the patient. All stem cells are taken from the patient themselves and cultured for later injection. In the case of a bone marrow transplant, the HSC are typically removed from the Pelvis through a large needle that can reach into the bone. The technique is referred to as a bone marrow harvest and is performed under a general anesthesia. The incidence of patients experiencing rejection is rare due to the donor and recipient being the same individual.This remains the only approved method of the SCT therapy. For more information visit http://ccsviclinic.ca/?p=838

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  6. Thanks for sharing a idea....Great post and informative
    CCSVI Mexico

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  7. David Summers, a 37 year old MS patient from Murfreesboro, Tennessee was a score of 8.0 on the Expanded Disability Status Scale (EDSS) when he had the Combination Liberation Therapy and Stem Cell Transplantation at CCSVI Clinic in March of 2012. Having been diagnosed in 1996 he had been in a wheelchair for the past decade without any sensation below the waist or use of his legs.
    “It was late 2011 and I didn’t have much future to look forward to” says David. “My MS was getting more progressive and ravaging my body. I was diagnosed as an 8.0 on the EDSS scale; 1 being mild symptoms, 10 being death. There were many new lesions on my optic nerves, in my brain and on my spinal cord. My neurologist just told me: ‘be prepared to deteriorate’. I knew that he was telling me I didn’t have much time left, or at least not much with any quality.” David had previously sought out the liberation therapy in 2010 and had it done in a clinic in Duluth Georgia. “The Interventional Radiologist who did it told me that 50% of all MS patients who have the jugular vein-clearing therapy eventually restenose. I didn’t believe that would happen to me if I could get it done. But I have had MS for 16 years and apparently my veins were pretty twisted up”. Within 90 days, David’s veins had narrowed again, and worse, they were now blocked in even more places than before his procedure.
    “I was so happy after my original procedure in 2010. I immediately lost all of the typical symptoms of MS. The cog fog disappeared, my speech came back, the vision in my right eye improved, I was able to regulate my body temperature again, and some of the sensation in my hands came back. But as much as I wanted to believe I felt something, there was nothing below the waist. I kind of knew that I wouldn’t get anything back in my legs. There was just way too much nerve damage now”. But any improvements felt by David lasted for just a few months.
    After his relapse, David and his family were frustrated but undaunted. They had seen what opening the jugular veins could do to improve him. Because the veins had closed so quickly after his liberation procedure, they considered another clinic that advocated stent implants to keep the veins open, but upon doing their due diligence, they decided it was just too risky. They kept on searching the many CCSVI information sites that were cropping up on the Internet for something that offered more hope. Finding a suitable treatment, especially where there was no known cure for the disease was also a race against time. David was still suffering new attacks and was definitely deteriorating. Then David’s mother Janice began reading some patient blogs about a Clinic that was offering both the liberation therapy and adult autologous stem cell injections in a series of procedures during a hospital stay. “These patients were reporting a ‘full recovery’ of their neurodegenerative deficits” says Janice, “I hadn’t seen anything like that anywhere else”. She contacted CCSVI Clinic in late 2011 and after a succession of calls with the researchers and surgeons they decided in favor of the combination therapies.For more information please visit http://www.ccsviclinic.ca/?p=904

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  8. http://www.youtube.com/watch?v=ysFiW26MHfQ&feature=player_embedded#t=0s
    http://www.youtube.com/watch?v=BfSOmij8tfk&feature=youtu.be
    Over the past year, CCSVI Clinic and its researchers and specialists have been studying the Combination venoplasty/autologous stem cell infusion protocol developed by Regenetek Cellular Technologies with the collaboration of outside labs and bioproducts manufacturers. As laboratory techniques gain ever-increasing sophistication based on new scientific methodologies for enhancing somatic cells into preferred lineages in vitro, the therapeutic outcomes for patients with neurological disorders have also been improving. Deb O’Connell who was treated at the Clinic in mid-September, 2012 recovered so quickly from her serious long-term degenerative disease condition that she experienced a wave of improvements while still in the hospital.
    It’s a matter of medical record that Deb had been wheelchair bound for 10 years (completely non-ambulatory) with multiple co-morbidities when she entered the program on September 9; she was 9.5 on the EDSS scale as assessed by a neurologist, was down to 80 lbs in body weight, could not breathe effectively, speak, or take in food by mouth due to dysphagia. Her pain was chronic and significant. When she left the Clinic on September 24th , she walked out of the doors and into a waiting van to go to the airport. At the time of her discharge from the Clinic, she could breathe normally, effectively speak once again, eat any types of food she desired and her pain had all but disappeared. At the time of this writing she is back home in Canada and reports that she continues to recover (especially her contractured hands), shows no signs of new disease symptoms, and has gained 18 lbs since her therapies, less than 3 weeks ago. She has now begun a regular physiotherapy program and is gaining walking strength and balance. The recapitulation of the course of her disease (MS) within days, provides evidence that the in vitro requirement of cell pluripotency has correctly been identified with respect to adult cell source origin, time, and manipulation in culture. http://www.ccsviclinic.ca/?p=1084
    http://www.youtube.com/watch?v=ysFiW26MHfQ&feature=player_embedded#t=0s
    http://www.youtube.com/watch?v=BfSOmij8tfk&feature=youtu.be

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  9. A significant world-wide population of multiple sclerosis (MS) patients have a chronic progressive neurological disease that is characterized by increasing disabilities. No treatments are currently available that slow, halt, or reverse the advancement of the disease in established cases of MS. The frustration in a growing number of patients and their readiness to pursue unproven therapies speaks to the lack of effective treatments available and is further indicative of a vast, unmet clinical need. On the basis of evidence that there is a vascular association to MS (characterized by anomalies of primary veins in the neck that restrict the normal outflow of blood from the brain to the heart), and that mesenchymal stem cells (MSCs) have a beneficial effect in acute and chronic cases of multiple sclerosis as determined in various clinical trials, we undertook the assessment of the safety, efficacy, and reproducibility of a novel approach that has vascular-protective, neuroprotective and regenerative therapeutic potential for all phases of multiple sclerosis.For more information please visit http://www.ccsviclinic.ca/?p=1194 or you may call the toll free number at 888-468-1554 or info@ccsviclinic.com

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  10. Inspirational. My Center for venous disease clinic friends appreciates your story so much. Keep blogging!

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