The Rubber Chicken Chronicles

I was wrong.

Fri, 06 May 2011 18:44:00 +1000

Neurologists receiving kickbacks from pharma companies for prescribing MS drugs. Shameful.

No mention of PML...

Wed, 20 Oct 2010 12:54:23 +1100

Yes another article from Nude Scientist pointing out problems with the medical industry. It’s incredible that any of us survive a single day on meds.

Lies, Damned Lies, and Medical Science

Tue, 19 Oct 2010 15:54:31 +1100

Lies, Damned Lies, and Medical Science:

A really interesting article on the bias present in medical studies. And science generally. Helps to explain a lot about where we find ourselves with CCSVI.

The Double Standard of Causation.

Sun, 17 Oct 2010 07:31:06 +1100

Negative CCSVI results are hailed gleefully by neurologists as being proof that CCSVI is not causative of MS. But the same neurologists seem to think that MS is immunological, even though there is scant evidence of autoimmunity being causative of MS.

The problem for all the naysayers concerning CCSVI is that they aren’t presenting any kind of alternative theory. Neurologists don’t know what causes MS, and while the immune system is certainly involved - and is therefore the reason that immunosuppressants work, up to a point - the uncontroversial assumption that MS is an autoimmune disease does not withstand much scrutiny.

We’re spending a lot of time and money looking for a cure without first knowing the cause. This was not the approach taken with other immune diseases such as AIDS.

Here’s Joan Beal taking down the negative studies of MS at ECTRIMS. Note how the researchers are ignoring the theoretical framework behind CCSVI and are simply looking for blockages.

http://www.facebook.com/note.php?note_id=447033472210&id=110796282297&ref=mf

The Truth About RC.org

Sun, 10 Oct 2010 07:20:42 +1100

I started writing the Rubber Chicken Chronicles because of my frustration with a conversation about CCSVI that I had with my wife’s neurologist.

There are only about 350 neurologists in Australia and the ones we’ve met are all full-time scientists. As a (well-read, scientifically literate) lay person I had no hope trying to convince her that there was any evidence of the benefits of CCSVI treatment - even though I saw these benefits with my own eyes.

This is because, as a scientist, she had all her answers pre-canned. I believe in the scientific method, but I don’t practise it. So I got very frustrated that my own thoughts weren’t as organised as hers were, and that I wasn’t able to refute her in her own language. I felt that I needed to find a way to make my ideas and experiences more concrete - and therefore more defensible. And this is the fruit of that search.

The articles posted here represent, at the time of writing, my feelings about aspects of CCSVI which I haven’t seen written elsewhere. I have no reservation in saying that CCSVI is an effective treatment for some of the symptoms of MS - I’ve seen the treatment work on my wife, I held her hand as she went into surgery, and I saw the transformation of her personality over the following couple of days. The effect of treatment is real, or at least it was for us.

But there are some really big questions. Does CCSVI cause MS? Will fixing CCSVI stop the progression of disease? Will CCSVI treatment give MS patients a longer or better life? Will MS symptoms improve after CCSVI treatment?

I don’t know the answers to these questions, but I do have an opinion. The point is that nobody else knows, either. So when a neurologist tells me that the effect I saw in my wife after treatment - a pronounced, measurable and sustained improvement - could simply be the placebo effect, now I know why she said that, and why she was wrong. And why her opinion on this matter is no more informed than mine.

And that’s why I started this blog.

A New Role For Neurologists

Thu, 07 Oct 2010 23:09:00 +1100

The treatment of CCSVI is something which neurologists have almost no specialised training for. They claim that they have substantial experience in the vasculature of the brain, but this is a half-truth. The whole truth is that almost nobody has studied the veins of the brain because all the attention has been focused on the arteries, which cause strokes. CCSVI was discovered precisely because there was so little research done on the veins draining the brain.

Neurologists should obviously be treating the damage caused by MS. Nobody sane argues that the neurons are undamaged by MS, and clearly a neuron doctor is going to be in the best position to help restore function to those debilitated by MS. But CCSVI is a vascular issue, and it happens a long way (topologically, and often actually) from the neurons in the brain.

So why are neurologists being invited to comment on CCSVI studies?

The obvious answer is that neurologists are trained to understand the symptoms of MS and are in the best position to determine if treatment for CCSVI is an effective treatment for MS. They have a legitimate advisory role in CCSVI studies and I think it’s not just reasonable but desirable for them to be involved at this level.

But some are vociferously opposed to CCSVI studies - and even the possibility that CCSVI might cause MS, and this is problematic. Neurologists have no special, magical knowledge of the effectiveness of CCSVI. Nobody knows, scientifically, if CCSVI is the cause of MS, which is why we need studies in the first place. Simply saying that there can’t possibly be a link is not - even a little bit - scientific.

And this is why the role of neurologists should be restricted to measuring the efficacy of previously approved CCSVI studies - and nothing more.

In particular, neurologists and MS researchers have no legitimate role in the ethical standards used to determine if a CCSVI trial should go ahead. These people have a conflict of interest - their careers are based on a model that’s incompatible with CCSVI, and this lifelong exposure to one particular paradigm is almost certainly going to affect their judgement.

If CCSVI trials go ahead and it is found that CCSVI is not related to MS - and this is an extremely unlikely outcome - then neurologists will have their moment in the sun, jumping up and down with joy knowing that they were right all along, and that MS is still incurable, and that we’re all screwed.

But if CCSVI is found to be a symptom of MS - that is, it’s found to be noncausal but is strongly associated - then it becomes another mystery of MS which moves the disease out of the brain and into somewhere a bit easier to study. This is hardly a bad outcome.

And if CCSVI turns out to be the underlying cause of MS, then the present schoolyard behaviour of neurologists puts at risk the prestige of their profession. This will go down in history as the neurologist’s ulcer.

Neurologists are a necessary part of CCSVI research, but they have no right to act as a gatekeeper to their patients’ wellbeing by using ethics committees or any other means to force their opinions - and any neurologist talking about CCSVI is simply voicing an unsubstantiated opinion - onto anyone else. Their role in CCSVI is advisory, and it is in our best interests to ensure that we keep them there.

There Goes That Theory

Wed, 06 Oct 2010 20:22:15 +1100

There Goes That Theory:

Katz barely ever gets the symptoms of a cold, so I guess this article means that she has a weak immune system. So this surely means that her immune system couldn’t be attacking her. Right?

Closed Minded Negativity.

Fri, 01 Oct 2010 16:33:31 +1000

Closed Minded Negativity.:

I read only part of this and thought it’s very much how I feel about CCSVI at the moment. But I’m looking forward to reading the whole thing and commenting on it later.

Why we believe in CCSVI

Wed, 29 Sep 2010 22:43:00 +1000

Neurologists and other self-professed experts on MS want to think that our belief in CCSVI stems, essentially, from ignorance. They want to believe that we have blind faith in some new discovery that’s been promulgated by a small group of people who somehow have an interest in this theory - and that we need to be protected from being emotionally (and perhaps physically) harmed in the event that we’re mistaken.

Certainly (the thinking seems to be), we shouldn’t be treated, because the treatment - assumed to be ineffective - does more damage than the disease.

But an interesting thing happened on the way to the 21st century: The Internet. Suddenly, previously isolated people could easily form communities and share information. It is not hyperbole to say that the level of information sharing is unlike anything seen in history: it’s instantaneous, global, cheap, durable, personal, public, and accessible.

Within the archives of a web site like ThisIsMS, you can follow the disease course of a large number of individuals. The history of these people begins well before they find out about CCSVI. You can see their drug regimes, symptoms, prosthetics, relapses and remissions. It can be heartbreaking, but people have been sharing this information for years, in order to help and support one another.

The members of ThisIsMS did not suddenly appear along with the emergence of CCSVI. Instead, the introduction of CCSVI into the lives of people with MS is part of the ongoing self-documentary of these people’s lives.

The archetypal example of this is Joan, the well-known “Cheerleader” of the CCSVI movement. Joan popularised Dr. Zamboni’s work by making his results known on ThisIsMS. She tracked down interventional radiologists in the US, and encouraged others to do the same, sharing techniques and numbers. Joan posted her thoughts as she took her husband on a long journey which resulted in the curing of his constant and crippling fatigue and the complete remission of his MS.

But Joan’s claims about CCSVI helping her husband would not be taken seriously if she hadn’t been an active member of the ThisIsMS community well before she learned about CCSVI. Joan had published a substantial medical history prior to her discovery of Zamboni’s work - and she is not alone. There are dozens of individuals at ThisIsMS who have long histories of posting about their symptoms and quality of life prior to finding out about and posting of their experience with CCSVI treatment.

The upshot is that we believe in CCSVI not because some stranger has posted about it on the internet, but because the person is no longer a complete stranger: they have provided us with documentary evidence of their lives which was written long before they had even heard about CCSVI. Their writing continues beyond the discovery of CCSVI to their liberation treatment, in which we find that their lives have almost uniformly been improved by the treatment.

We believe in CCSVI because we are part of a community who has watched it unfold. Neurologists and GPs are not generally part of that community. And this is why they don’t understand.

Far from being ignorant, those of us who have followed CCSVI on ThisIsMS are better informed and have more scientific evidence at our disposal than the denialists who tell us that CCSVI is, at best, unlikely.

The evidence for CCSVI is overwhelming, and despite the claims of professional scientists, it’s far from anecdotal. I hope to explore the scientific basis for this claim in a future posting.

So this is the world we live in. A world where it’s OK to feed babies who don’t need...

Mon, 27 Sep 2010 18:59:03 +1000

So this is the world we live in. A world where it’s OK to feed babies who don’t need it genetically modified food, but we can’t provide adults with safe, tested treatment for a life threatening condition.

CCSVI and Neurologists; or, The Five Stages of Grief

Sun, 26 Sep 2010 21:31:54 +1000

A number of people claim that neurologists are against CCSVI for, let’s say, other than altruistic reasons.

For example, there are an estimated 15,000 people in Australia with MS, and about 350 neurologists. My wife was advised to get a checkup every 6 months. At $250 a pop for a visit, it doesn’t take a brain surgeon to work out that the average neurologist stands to lose more than $20,000 per year if Multiple Sclerosis turns out to be vascular in nature.

And some people even think that neurologists are in the pocket of “big pharma”.

I believe that most neurologists would be extremely offended by this analysis - and rightly so. It’s almost inconceivable that a neurologist who has put so much time and effort into their career would go ahead and put their wallet so far ahead of their patients that they would intentionally harm them by diverting attention away from a cure. This line of reasoning just doesn’t make sense.

So why do neurologists have a problem with CCSVI?

Perhaps more than any other medical practitioner, neurologists are at the pointy end of multiple sclerosis. Neurologists are, by definition, the people MS patients turn to for help, support and options. It’s easy to imagine that there are many neurologists who feel very kindly towards some of their long term MS patients, perhaps to the extent to consider some to be good friends.

Now, imagine how you would feel if you’ve been telling people you’ve known and liked for forty years that they have a brain disease, only for some upstart patients and vein doctors to start telling you that it’s a vein disease.

If these upstarts are right, then you’ve been wrong about this for the entirety of your professional life. You’ve let your patients and your friends down. You’ve watched them descend needlessly into progression. Some of them might think you’ve been lying to them. Some will call you names and tell you that you’re in the pay of the drug companies.

The rug has been pulled out from under you. How can you possibly save face in this situation? What could possibly be worse than this?

Maybe you’re going to experience the five stages of grief. And you’ll fight CCSVI all the way down.

Denial

First, you’re going to deny CCSVI is even possible. Lots of people in our community have experienced this reaction first hand. We can readily name more than a couple of people who are clearly suffering from CCSVI denial (I’m looking at you, Colin Rose). We’re in the middle of this phase right now, and it’s going to last quite a while.

Anger

Once you get past the denial stage, you’re going to be angry. Angry at everyone! Angry at yourself for all those papers from you didn’t read (like Prineas, who points out that “Macrophage activity is largely an innate scavenging response to the presence of degenerate and dead myelin”, effectively destroying the autoimmune theory of MS in one shot). Angry at the vascular surgeons and interventional radiologists for going ahead with treatment without your permission. Angry at the patients for going behind your back, seeking treatment, and believing each other’s anecdotal evidence.

Bargaining

We’ll get to this stage if CCSVI research finds a strong causative relationship between CCSVI and MS. Neurologists will finally start to agree that there might be a relationship, but they will insist that the neurological component still requires measurement and treatment by neurologists. “There will be years of study required before we can effectively treat MS!”

Neurologists may still have a place for people who are badly injured by MS, but it’s unlikely to be true for new MS patients, whose only experience with a neurologist will be the confirmation of MS followed by a referral to an interventional radiologist. But they will schedule continued follow-ups, just in case.

Depression

If CCSVI becomes firmly established then there’s plenty that neurologists will be depressed about. They’ll feel bad about their friends, who they failed to help. They’ll wonder how they missed the signs for so long. They’ll ask, “how could science have failed me so completely? Why didn’t I see this earlier? Why did I ignore all the work that showed that the disease was not autoimmune? Why did I ignore all the inconvenient facts about MS that the immune theory could not explain?”

As one neurologist has already said when discussing his son’s recovery from MS after treatment for CCSVI: “I’ve never been so embarrassed to be a neurologist… we’re supposed to be the smart ones.”

Acceptance

After a few years of soul-searching, neurologists - like all good scientists - will forget these questions and move on. The big questions about the failure of science will be left to the sociologists (1988). They’ll see the occasional MS patient on their way to the radiology clinic, and there will of course be cases of MS for which no underlying vascular issue will be obvious - there will be a new name for a disease of non-stenosing MS. They’ll sometimes see non-MS cases which they suspect might have CCSVI.

It’s Not About Money

Neurologists have many, many reasons to fight CCSVI. Among much else, they face the loss of friendship and trust of their patients, and the loss of prestige of their profession - which for over 150 years has failed to identify the simple vascular problem that has affected hundreds of thousands of people.

So there’s absolutely no need to bring money into this. For neurologists, CCSVI is personal.

Carn the mighty Saints!

Sat, 25 Sep 2010 11:50:43 +1000

It’s Grand Final day here in Australia. The second time in 40+ years that my team is in the finals!

On Some Objections to CCSVI

Wed, 22 Sep 2010 21:32:15 +1000

CCSVI advocates like myself have run the gamut of objections to the theory. It’s unfortunate for everyone concerned that most of the critics have barely read the literature of CCSVI or, worse, hypocritically point at flaws in the theory of CCSVI which also exist in the dogmatic immunological theory of MS.

Here are three objections that I’ve heard recently.

Objection #1: Normal people have CCSVI, too.

In the recent Buffalo study of CCSVI, 22% of normal patients were found to have CCSVI. This is used as an argument against CCSVI being causative for MS.

The fact that 22% of normal people have CCSVI is meaningless. 80% of people infected with Helicobacter Pylori are asymptomatic, but nobody doubts that it causes peptic ulcers (any more). The only useful information about this statistic is that no long term study has been performed to show what percentage of those “normal” patients will go on to develop Multiple Sclerosis or CIS. We also don’t know what selection bias may have been involved (I seem to remember that the Buffalo cohort included non-MS patients with other neurological issues).

We’ve also got no way of knowing how accurate the testing was - I can’t remember if they did angiograms or MRVs on the normals, but I presume that they did not.

An objection that normal people show venous abnormalities also found in MS is not an objection at all. Not everyone with an immune disorder has Multiple Sclerosis, and not everyone with a cough has pneumonia. And as I will discuss below, CCSVI is a subtle theory. There would seem to be many ways in which veins could be blocked that don’t trigger the process that triggers MS.

Objection #2: CCSVI Doesn’t Explain Everything

The problem with this objection is that there hasn’t been enough time for most people to have even heard of CCSVI, let alone looked for correlations between CCSVI and every single observed sign in MS.

It’s important to remember that phlebologists accept that CCSVI is a real disease; it’s called “congenital truncular malformation” and is published in the Diagnosis and treatment of venous malformations Consensus Document of the International Union of Phlebology. But CCSVI has been a recognised disease for about one year.

In fact, CCSVI successfully explains a number of important aspects of MS which the immune theory does not - including hypoperfusion, the disease course, and the lack of immune activity around new lesions - among plenty of other serious problems with the autoimmune theory.

To use this argument against CCSVI you must also use it against the immune theory. If you do this then the immune theory seems bankrupt, while CCSVI is simply untested. It’s a remarkable statement coming from a branch of Neurology whose primary theory of MS has been effectively falsified by several papers and clinical studies. But I’ll talk about that later.

Objection #3: Occluded Blood Vessels Can’t Cause MS

Another objection which I’ve heard several times is that occluded blood vessels can’t cause MS, because “we know” what happens when blood vessels to the brain get blocked; a corollary is that blocking the blood vessels draining the brain would cause other, obvious symptoms (such as reddening of the face).

The problem with these objections is that the CCSVI theory is far more subtle and complex than a simple blockage. CCSVI doesn’t attribute a problem to the blockage itself - over time, the body creates new blood vessels (called collateral veins) to “route around” the blockage and the blood flow is often nearly normal.

Instead, the theory is that after every heartbeat, the blockage causes a very short period of reversed flow of the blood back into the brain. Over time, this backwards flow is thought to create stress on the lining of the veins (which are not designed for reverse blood flow), and this ultimately damages them, allowing a small amount of blood to enter the brain.

CCSVI theory says that the blood entering the brain contains iron, and the iron is thought to damage the myelin and cause MS. The immune system them comes along and “mops up” the damaged myelin - causing additional damage as it goes.

From this explanation, it’s pretty clear that we’re talking about subtle, long-term damage to blood vessels - it’s a significantly different mechanism to that of stroke, but it’s a process which is well known in other parts of the body, including varicose veins.

My guess is that the subtlety of CCSVI theory is the reason that it was discovered by vein specialists, and not neurologists. I just wish more neurologists would read the papers before proclaiming that a blockage can’t cause this problem.

All This And More

There are plenty of other reasons put forward about why CCSVI can’t be the cause of MS. And if you search the Internet you will find that there are plenty of vociferous fools - not one of which I’ve met in person, thankfully - who refuse to even believe that this is a possibility.

Scientists have not learned from the grievous errors of the recent scientific past. I’ll talk about one particularly awful example in a future post.

On The End of Jugular Angioplasty in Melbourne

Sat, 18 Sep 2010 20:48:00 +1000

Visiting a neurologist to discuss MS is harrowing at the best of times. But this time, not only had Kat been treated for CCSVI, and not only were we meeting this neurologist for the first time, but the neurologist happens to be Judith Frayne - the head of Stroke (is that a pun?) at the Alfred Hospital. So it was pretty daunting. I’d taken some notes with me and I’d written the words “STAY CALM” in big letters on the top of each page.

I’ll get the very worst news of all to CCSVI advocates out up front.

According to Dr Frayne, all angioplasty procedures for CCSVI have been banned by the Alfred Hospital Ethics Committee. Dr Frayne is on the committee, but absented herself from this decision. She says that there was a “leading MS export” on the committee but that didn’t leave me feeling any better. This is in contrast to the understanding I had when we went to see her, which was simply that we would need a referral from a neurologist before Prof Thompson would be allowed to work his magic.

Dr Frayne and I had a very respectful although occasionally heated conversation. I could see that Dr Frayne was frustrated at some times - and so was I - but she was extremely polite and professional at all times. She is sceptical about the link between CCSVI and MS but was open to the possibility. She gave me the impression that she wouldn’t personally block the study based on her scepticism alone.

Her objections were that CCSVI appears in “22%” of normal patients (she quoted the Buffalo study and I haven’t fact checked this); that CCSVI doesn’t explain everything; and that as a neurologist and expert in stroke, she sees obstruction of up to 70% in the arteries leading to the brain and these don’t cause symptoms of MS. Her words were, “acute occlusion of veins have well known outcomes - stroke”.

I will leave a discussion of these claims to a future post.

The main message that I took away from the meeting was that the angioplasty trial was halted because the scientific design of the study was flawed in some way. Dr Frayne didn’t indicate how it was flawed (and it would be wrong for her to do so). However, Professor Thompson is able to resubmit his study with changes - my understanding is that he will do so when he returns from holidays in October.

I personally believe in both the philosophy and the method of science and I believe that Dr Frayne is acting honestly and in good faith when she talks about the design of the study being flawed. I also believe that Dr Frayne knows a lot more about Multiple Sclerosis than Professor Thompson - I have no doubt that he would agree. So if she thinks that the study is flawed then I am quite willing to accept that, despite my support for Professor Thompson.

Dr Frayne implied on several occasions during our hour-long discussion that the outcomes we were seeing from CCSVI treatment were not well controlled and could be due to the placebo effect. Specifically in our case, most of the symptoms Kat had could well have been due to depression. Being treated for CCSVI would give her hope, relieve the depression and help her fatigue and some other symptoms.

Dr Frayne also mentioned several times how she has seen this all before - with Vitamin E and other “miracle cures” which turned out, under scrutiny, to be no better than placebos.

For the record, I completely agree that a placebo effect in some cases might be possible. But in a few days I’m going to post about how the Internet has changed the way anecdotal evidence works, effectively providing a very public and long-term case history of many people who have been successfully treated for CCSVI. The reason we believe in CCSVI is not because a bunch of people told us they got better, but because those same people have a documented and public history of getting worse.

Finally, Dr Frayne told me that one of the main reasons for caution with jugular angioplasty is that the risks of this surgery were unknown. She said that jugular angioplasty, specifically, is a very rare operation and that the risk of thrombosis and death or stroke may be quite high. For this reason, safety studies should be carried out in addition to efficacy studies. I would really like to know Professor Thompson’s opinion of this. I don’t think anyone reading this would have questioned the safety of jugular angioplasty. It’s certainly a fair point, if true.

In the meantime I will join those others who have been treated for CCSVI in Melbourne and had a positive outcome in saying that, despite my scientific leanings, the fact that we can’t be treated for restenosis is an outrage. When I told Dr Frayne that this decision may force us to travel overseas for any further treatment at our own expense, she said that this was “our decision”. I did find this attitude really upsetting.

Kat and I know for a fact - with measurable data, hard numbers - that jugular angioplasty helped her. Denying this treatment to us because of scientific dogma is not our decision at all.

On Inflated Veins

Wed, 17 Mar 2010 18:00:00 +1100

ok, am hugely knackered but really want to write this stuff down.

katz had a really great day today, still very tired (baby waking up several times during the night will do that) but she woke up with much more energy and was able to go through the day much longer than normal. but it’s not necessarily indicative of anything since she did still have a bit of a crash later this afternoon. but still the signs are encouraging. once the pain goes and (if) she manages a decent night’s sleep we will be able to say more.

for those who are curious about what happens in the hospital, here’s our experience.

we rocked up for our appointment at 9.30am in the alfred centre where we were given a bed in the “medical day center” (or something) on the 1st floor. parking is a bit of a mess (cost about $28 for the day) and you have to guess which lift will work since the building is still being built.

although the appointment was for 9.30am, the actual venogram wasn’t scheduled until 11.30am, so we were asked to fill in a MS QoL survey, and then at about 11am katz was asked to change into a gown and then an orderly came and picked her up and wheeled her bed into the radiology waiting room. the waiting room is kinda dodgy!

at about 11.30 Dr Tuan (I think that was his name) came and explained the procedure to us. Then she was wheeled out to the actual radiology operating theatre. we were told various things about if i would be allowed to accompany her (yes, no, maybe) but ultimately i just hung around and they let me in.

it was very busy and there were loads of people but they were all pretty friendly and i was able to sit with katz while they set everything up. once they were ready to go (they put on their lead aprons!) i was asked to sit behind the glass and watch from there.

they had katz in one of those spinal things where you can’t move your head, which was a bit unpleasant for her as she couldn’t see or hear much of what was going on. i could see everything and had a monitor of my own to watch.

it is rather amazing and a bit disturbing to watch your best friend and partner’s skull moving on the x-ray machine as she talks - while a wire is wiggling around inside it! the wire just sort of pokes around looking for a way forward. eventually they start releasing the iodine and you can see the stenosis, or in our case the complete lack of a stenosis. this part was quite upsetting.

back out of the right and into the left and it was far more interesting as sure enough there was quite the blockage, “definitely an abnormality” as the prof said. he came out and spoke to me and told me that they would be ballooning that one, and so he did. the ballooning went pretty quickly and afterwards you could see that the blood flow was substantially better than before. then he gave me a big thumbs up through the glass!

then he zigged down to the azygos which checked out OK.

Finally, they closed everything down, out of the OR we go, back to the waiting room for 20 minutes and then back to our allotted slot in the day care centre. katz was not allowed off her back at all for 2 hours - so a word of advice, don’t drink too much before you go in cos you’ll need a bedpan if you need to pee.

after 2 hours katz was allowed to sit up straight and to walk (straight to the loo!), after which prof T came over to chat to us.

we discussed how the right vein was not stenosed and prof T told us that in most cases the left and right jugs are basically joined together but in some cases including katz, the left drains one part of the brain (top or bottom) and the right the other. we were concerned because we thought that the veins were draining the individual hemispheres, while she has symptoms on both sides of the body - but apparently this is not the case, and it all made a lot of sense to us.

we also asked if it was worth going back to melbourne radiology to get the doppler done again to see if we get the same results as last time, since the original doppler said katz had stenosis of both veins. Prof T thought there was some scientific merit in it and suggested we could probably get it on medicare as a follow up test. however, he also said that the ultrasound was “voodoo” (or words to that effect) - basically the blood flow numbers are calculations which are based on a number of assumptions such as the diameter of the vein, which can’t accurately be determined by ultrasound. he said ultrasound “is half right half the time” and this is why he really wants to get in there with the catheter and have a proper look around. he also said they could technically do a followup ultrasound at the Alfred but it would have more meaning if done using the same equipment and people at melbourne radiology, and i see his point.

i think this voodoo comment is really interesting and i suggest that anyone who hasn’t had a stenosis found should still consider talking to Prof T. he is an awesome dude and very sympathetic to what we are trying to do. he has been nothing but kind, ernest and very much interested in telling us what he thinks and what is going on.. it’s really refreshing. so i’d suggest that if the doppler results aren’t what you’re expecting then don’t put too much weight on it. to be honest i don’t think he was actually expecting everyone to have problems in the OR. so this is all very interesting information.

anyway… we headed home after this and one of the docs will be calling us tomorrow probably to see how katz feels. no lifting of heavy weights for a few days (though it’s hard to avoid lifting our 13 month old!). the current literature says it’s OK to breastfeed immediately afterwards but katz didn’t want to so we discovered that our baby will drink warm soy milk from a bottle and think it’s breast milk (go figure, i think she’s self weaning!).

symptomatically, we don’t have much to report really. she seemed far less fatigued and said that she felt like she was “thinking better” but given the very poor sleep because of our little girl last night she still had a bit of a crash later in the afternoon. but truth to tell, i’m quite healthy and i’m exhausted too, so it’s impossible to separate one thing from the other. but i definitely thought there was a spark in her eyes that i haven’t seen for a while… hopefully we will have a bit of a clearer picture tomorrow… we’ve just moved the little one into her own bedroom at long last so with any luck we will have a pretty good sleep.

finally … thanks so much to everyone who has been involved in getting us to this point, in particular to adolfo who gave me the details for both melbourne radiology and for prof T, and of course all the others who have brought the whole thing to life for us all around the world. 13 months ago our lives changed magically when our little girl was born. 10 months ago our life changed again with the diagnosis of MS and katz partial blindness in one eye (that hasn’t gone away and makes her work quite difficult) and almost constant pain and dreadful fatigue. 9 months later the ultrasound, 3 weeks later and we’re the 4th people in australia to have the liberation treatment. we have just had some seriously awesome karma and i am immensely grateful.

and great public thanks to melbourne radiology for doing the tests and of course prof. T for understanding what it’s like on our side of the fence, and for being open minded. what a guy!