The half year mark

Monday, September-26-11
Today is my 6 month anniversary since my CCSVI ‘Liberation’/angioplasty procedure.
So – what has changed?
There are some obvious things – my brain fog is less, the pressure in my head is gone, the pain in my neck/shoulders is considerably less, my nervous belly twitch is pretty much gone, and I seem to have more bladder control – and these things I would attribute directly to the CCSVI procedure.

At the same time some things have changed over the past 6 months that are difficult to attribute to a specific source.
MS is a difficult disease to label – even to this day there is great controversy over what Multiple Sclerosis really is. Yes, the ‘sclerosis’ or ‘plaques’ can be identified on the nervous system – but both the cause and the effects of those plaques are very much in question. My personal view is that the location and severity of the plaques cause certain symptoms and when we have a certain collection of symptoms the doctors label this collection ‘MS’.

However, the human body is a very complex organism and ‘symptoms’ don’t always originate from the same source.

I have written earlier that I was disappointed that the CCSVI procedure did not seem to have a dramatic improvement on my energy levels. Because I still felt a lack of energy I continued my search for answers. One piece that kept cropping up was thyroid – hypothyroid. The problem here was that though I had many of the symptoms of hypothyroid, my thyroid TSH tests came back ‘normal’. Despite the ‘normal’ test results, I convinced my doctor, based on my symptoms, to prescribe a low dosage thyroid medication to see if it made any difference – and after two months of adjustments and further testing the result is a dramatic increase in energy levels, my low level depression is gone, and I just feel better all over – still not as good as I’d like it – but definitely better.

So now here’s where it gets a bit tricky when is comes to CCSVI involvement: many say the results from the procedure can take months or even a year to show up, and so, is the increased energy a result of the thyroid medication or a delayed CCSVI treatment effect? Well, the only thing I can say is that when I stop the thyroid medication the symptoms return – do your own math…

Having said that – a number of CCSVI involved doctors have noted how the reduction of blood flow can also affect the thyroid – and the reduced blood flow could be responsible for subsequent thyroid problems. I speculate that I have had both CCSVI (it happens in vitro) and thyroid problems (not severe enough to be diagnosed) most all my life. So it would seem to me that the CCSVI angioplasty could have restored proper blood flow to the thyroid. At the same time, it would take time for any thyroid problems to right themselves and heal. Maybe the thyroid medications I’m taking are just assisting the healing and maybe this might have happened with the restored blood flow – I really don’t know – there is not an easy answer here. What I do know is that I am feeling slowly better – which I attribute to both the CCSVI procedure and the thyroid medication.

As I mentioned, our bodies are complex organisms and MS is a complicated disease/diagnosis. I find I have many health problems which may or may not be related to MS and yet the medical profession has no real answers on how to deal with some of these health problems and often revert to saying it must be connected to MS somehow – thyroid is one case in point and digestive issues are another. I have digestive issues and I am overweight. A study of the body reveals a connection between the endocrine system (hormones, thyroid, adrenals, etc,) and the digestive system (hormones stimulate the production of bile, enzymes and gastric juices, etc., to produce proper digestion of food which in turn feed the endocrine system). One symptom of hypothyroidism is weight gain. Another is digestive issues. Another is low energy. So are these things ‘MS related’ or a messed up endocrine system? I dunno – but it’s all grist for the mill. I’d say it’s a synergistic relation and everything needs to be looked at – including CCSVI and diet and thyroid/adrenals, and, and….

Along with taking thyroid medication I have been experimenting with different diets (raw live foods) and digestive enzymes and probiotics. These things have a cleansing effect (and blood thinning effect) on the body and the other day, while falling asleep for an afternoon nap, I had a strange sensation happen in my head and the next thing I knew my toes got really warm. This sensation is often reported by CCSVI angioplasty patients, post treatment, right on the operating table. So did something get ‘fixed’ in my brain, a delayed ‘effect’ as a result of restored blood flow, and this resulted in my toes getting more sensation, or did the thyroid meds/diet/digestive supplements cause some sort of cleansing effect which resulted in warm toes– I have no idea – I just know my toes feel warmer.

A number of people have asked me about my procedure and the impression I get is that most want some sort of miraculous result verified. One problem I find with this is that my results are all very subjective – how do you objectively measure brain fog or neck pain or even improved bladder control – you can’t. Plus these items are not all that flashy – especially to someone who wants to walk again or to someone who is healthy and cannot even imagine what ‘brain fog’ is.

Would I do it again – in a heartbeat.

Would I advise someone else to do it? Well, I don’t have a solid answer for that. There are no guarantees with CCSVI angioplasty and there are minimal risks involved and while I may think those risks are worth it in the possibility to achieve an improved lifestyle – you may not. The only thing I can say is that you have to do your own homework and decide for yourself.

BTW - below are earlier reports and see the links page for more CCSVI informaiton.

Braden

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Improvements, disappointments, and it’s all about blood flow

It’s now 4 weeks since I had the procedure done, since I was “Liberated”, and friends keep asking how I’m doing and so here it is:

Improvements:
- right off the bat I noticed the brain fog was gone. It was like I didn’t have to fight to focus and to think anymore. This is huge – I don’t think you can understand this unless you’ve had it.
- The pressure in my head went away – I always had this strange sense my head was going to explode – that has gone away.
- For years I have had tension in the base of my neck and shoulders – and that has mostly gone. My chiropractor said that she’d been treating me for over 6 months and this was the first time those muscles were not rock hard.
- I had a strange twitch in my stomach muscles – that is mostly gone
- While my energy doesn’t seem to have improved greatly – it has evened out somewhat – kinda strange to describe – but it is different than before.
- My stereo is too loud and my bathroom stinks! (my hearing improved and so did my sense of smell… :-) Eyesight and taste improved a bit also – not dramatically, but noticeable.

I write these ‘improvements’ and in one way they seem rather minor, mostly because they are all so subjective and there’s no way any of these things can be objectively tested by a neurologist or medical science. Plus, for me, and I imagine many others, these conditions have been such a part of my life that I have gotten used to them and they seem a normal part of life to me.
However, it’s only after they are gone that I begin to realize what ‘normal’ really is. But to someone who is already ‘normal – they probably don’t think it’s a big deal. And how do I tell someone I’m ‘normal’ again and that that is a big deal to me?
What I need to remember is that in the areas mentioned above, I went from a serious problem to ‘normal’ – which is a big leap for me. And, I’m still discovering ‘normal’.

And there is another area of great relief.
MS is a difficult disease to diagnose. The symptoms of neurological damage are, especially in the beginning stages, very subtle and elusive, and getting a ‘MS Diagnosis’ can take years. Many have written about being told by the doctors that it’s “all in your head” and being prescribed anti-depressants. With MS, it is difficult not to question your own sanity. I cannot begin to tell you the number of times I have gone to the doctor with some strange symptom and to have him shrug his shoulders and say “I have no idea – it must be the MS.” I have had more tests where the results were in the ‘normal’ range than I can remember. Yet I sure didn’t feel ‘normal’!
The hypochondriac’s headstone reads “I told you I was sick!!!!”. And now – I too feel somewhat vindicated, that it’s not just ‘all in my head’ – that there is a physiological source to my neurological problems .

One of the biggest challenges in deciding to get treated was that I was afraid to hope again. A big fear I, and many others, faced was “Well what if I get there and they find nothing is wrong – then what? I’m back to square one and feeling crazy again.” I didn’t think I could face that disappointment.
Like many MSers, I have tried everything from diet to bee stings to goats milk to try and deal with my MS symptoms (well, I didn’t try the bee stings – but damn near everything else) – and while sometimes there were small improvements, nothing seemed to last and the trying just results in a growing frustration and feeling of helplessness. I was afraid to hope again and try yet one more round of ‘treatment/cure’, not sure I could face another round of frustration and disappointment.
Now, having faced this fear, and on the other side of treatment, while there are still disappointments and frustration, at least I have something to point to and say, primarily to myself, “see – I told you I was sick!” My own sense of sanity is somewhat restored – and that’s also a big thing for me.

Disappointments:
- I tried to go into the treatment with no expectations, but obviously I did have some expectations – otherwise I wouldn’t be disappointed.
- I had hoped for more energy. Low energy has been my most significant MS symptom and that was one of the big changes most Liberati talked about – however, so far, that has not been the case for me.
- I also hoped the numbness in my hands would improve – so far nothing much is happening there.

It’s about the blood flow:
As elated as I am with the positive changes, I really did expect more and for the past 4 weeks I kept looking for this ‘more’ to happen – instead, it almost seemed like I had less energy than before. But it’s not less – just seems that way. I’ve been high on hype and adrenalin for the past 4 weeks and that has kinda burned me out a bit - and, after some serious rest, and coming to terms with what is important, I’m feeling somewhat better the past few days.

What is important is IMPROVED BLOOD FLOW!!!

With CCSVI treatment I think we have a tendency to focus on MS symptoms and what will be improved and what’s better in terms of MS symptoms, and we forget that something very important has happened in the body: our blood flow just got better – got normalized. A very significant physical problem, CCSVI, has been fixed in the body.

A problem that some researchers say has been with us since we were born.
Think of it – a lifetime of having a problem in our bodies that we were not even aware of.

The day after my procedure I got a chance to see the doctor’s report and see the x-ray images of the stenosis and the ballooning and, frankly, I was shocked.
Sure, I’d read all the reports that 95% of people with MS had CCSVI and I had an ultrasound that showed ‘some indications’ of a problem – but I couldn’t really know for sure until the venogram – and there they were – 3 little malformed valves blocking my blood flow. I was relieved, shocked, and emotionally strung out for the next few weeks. A week after the treatment, I was mulling all this over and it hit me like a ton of bricks: this is something that has been operating in me all my life and it very possibly explained some previous behaviours (from long before I was diagnosed with MS). For instance, when I was young I was often told I was ‘lazy’ – could it be that even back then I simply didn’t have proper blood flow and simply didn’t have the physical energy? “Lazy” has a psychological inference and implies some sort of character flaw - stinging indictments for a child. Could it have been an unseen physical issue instead? I also noted a number of opportunities or directions not taken in my life – because at some level I knew I just didn’t have the energy to take advantage of an opportunity that required a lot of physical effort. Where would I be today if I had had proper blood flow and regular energy… who knows… but at this point I can see where a lack of energy affected some important decisions and opportunities not taken. And there is a sort of grieving involved in that realization. Along with anger that one of my most desired improvements, improved energy, didn’t happen.

As part of dealing with that disappointment and moving forward, I realized that the most important part to this treatment was the restored blood flow and that life can now go forward with a more even chance of physical normalcy.

Imagine that all your life you have had this stick that has been hitting you. And yes, you could put Band-Aids on the bruises and take pills and vitamins to help heal the damage – but none of that is really all that effective as long as that stick keeps hitting you. CCSVI is that stick. Once you get rid of the stick, then you have a chance to heal and the Band-Aids and pills and vitamins have a chance to work to heal the body.

When you take away the CCSVI stick, some of the body heals very quickly and some of the body damage takes longer to heal. And that’s where I am right now – watching my body heal.
I have developed a different sense of my body – it’s like my body is coming alive in ways I didn’t realize it wasn’t alive before. Sensations returning to my legs and arms – physical sensations that were never there before. Some of the new body sensations are kinda scary, because I don’t know if they’re good or bad – I trust it’s all good – what other choice do I have, because I really don’t know at this point – but it’s kinda weird to go through.

The journey continues. I think the journey after treatment is perhaps as challenging as the one before – it’s beginning and learning to live a new life. I’m certainly not anywhere close to my ‘pre-diagnosis’ physical condition – but I am feeling better than I did a few months ago. So it’s all good – so far…

Let’s see where I’m at in a few more months… I’ll let you know.

In Joy
Braden Corby (Liberati)
Monday, May-09-11

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For those interested - here's what I said 5 days post treatment:

This is one of the first things everyone wants to know – what have I noticed since my treatment.

And I am reluctant to say much at this point, however:

- I was treated on April 11 and today, as I write this it’s less than 5 days later, 5 days spent in intense focus, excitement, tiring travel, and the emotions of finally having this done. So talk to me in a few weeks and we’ll see.
- Having said that – the pressure in my head seems less, the cog-fog seems improved a bit.
- My energy seems better but I’m still running on excitement and adrenaline so that will take some time to verify.
- I have noticed from time to time that my eyesight seems better – clearer – and colors seem brighter and have more depth.

So that's it as of April 16, 2011. As I notice stuff I will continue to add to this page