Saturday, March 31, 2012

MRI with a Cordis stent

I just had my MRI, despite my stent.  Based on the information I had brought with me from California, they decided it was safe to do it.  If anyone else has any problems getting approval for an MRI because of a jugular or azygos stent placement, they can get their medical staff to get in touch with the MRI department at the Chalmers Hospital in Fredericton.

Wednesday, March 28, 2012

First in New Brunswick - again?

I talked to the MRI supervisor at the hospital today and she explained why it's been over six months and I still haven't been called in for the MRI my neuro wants me to have for my lower back.  Apparently nobody with a jugular stent (such as the one I got in Poland) has been through an MRI in New Brunswick, or even Atlantic Canada, it seems.  Furthermore, since the manufacturer (Cortis) won't "guarantee" that it is MRI safe when used "off-label" (ie, in veins), the local MRI folks were left trying to find someone in the region who could say that it is OK.  Since I had it done in California, I'm bringing my DVDs and contact info for the folks at Synergy so that the local MRI can have the evidence to say it is OK to go ahead with it.

If anyone in Canada with a jugular stent (especially a Cortis) has undergone an MRI (in Canada), please let me know and I'll pass the info on to the local MRI people.  Then, presumably, in the future MSers with jugular stents won't have this hold-up.

Wednesday, March 21, 2012

The future of MS

Here's an article summarizing the good news about recent MS research and developments: St. Louis Today article.

Thursday, March 15, 2012

From Inge - Last November

As requested by Anonymous, here is Inge's last message concerning her status... not good news, I'm afraid:

Hi Ted, Hi all,

Good to hear from you again.

With me, it is not going as well as I hoped for when I started the CCSVI adventure in Poland in april 2010.
As you may recall, a stent was inserted in the right Jugular vein. During the procedure already something went wrong and the stent was damaged. I only found out in October 2010. After initial improvements and stabilizing my MS, I began to experience more spasms and more MS symptons since July. That worried me, and that was the reason I went to Aalst, Belgium, to have my flow checked. It turned out that because of the damaged stent, trombosis clotted the stent. There was no bloodflow whatsoever and that was the reason my symptons worsened. I had a second procedure on December 17th and immediately I felt better and improved my walking etc. So far so good. In March, my bloodflow was checked and was fine. However, this year I experienced a worsening of symptoms again in July-August, so I went for another check in Belgium on September 6th.

Then it turned out that the stent was clotted again and I was scheduled for a third procedure. Slightly worried, because you can not endlessly have these procedures. Perhaps a maximum of 4. So I prepared myself for a new medicine regime or something, everything in order to prevent the stent to clott again.

On October 7th I had the procedure, and there it turned out that the stent was totally blocked by scar tissue. No bloodcloths, but hard and unpassable scartissue. So the operation failed. And basicly this means the end for my RIJ vein: it is definetely blocked. A bypass is too risky and too big an operation, so there's a dead end.
Luckily my LIJvein is still open, as well as the azygos. But my major improvements started after opening the RIJ vein, so I do not expect much of the 2 veins "left".
Now what? I started a new food regime and I also started to take serrepeptase (serranol) an enzym that helps to remove scar tissue in your veins en helps the blood flow freely. Hey, you never know ;-)

But for me, the CCSVI adventure has come to a halt. At least, in knowing that there is always a procedure at hand to clean up the clotts. I am still having fysiotherapy and still work 3 days a week. Kids and the hubby are doing great. So no complaints there. The only thing is that I do not know whether the stable condition a experienced for 18 months, is likely to go on for the coming years. So more uncertainty. I actually thought I could push the feeling of being an MS patient far from me after the procedures. But now that feeling is back, in my face. And that is a bummer.

Sorry to bring such bad news. I hope the rest of you is all doing fine!


Tuesday, March 13, 2012

Response from another friend

In response to my posting of Tarja's messages, my friend Dave (a non-MSer) had this to say:

Wow, your friend wrote: "there are at least four reasons for MS: autoimmune, congenital errors in veins (Liberation), bacterial infections (affecting veins), and trauma. They all seems to cause a domino-like chain reaction, all leading to same symptoms and diagnosis. "

If this turns out to have any validity then it would suggest that messing with the immune system would be the last thing to screw with.  Also, the discussion of infections causing vein issues is interesting.   "Hello, medical community ... are you listening?"

I finished a book called 'crowd sourcing' a while back and the discussion of non professionals solving problems outside of their field was quite interesting.  One guy with a chemistry degree made millions solving tough problems said "I don't even look at chemistry problems, they are dominated by chemists, it clouds my objectivity".

Is a bit (a lot) of this happening in medicine?

It does sound like the CA (California) people you saw were fairly enlightened.

Thursday, March 8, 2012

Message from a friend with MS

Tarja, who was in our group of "liberati" in Poland in 2010, sent us the following message the other day, by coincidence the day I was being re-liberated. I think this is important for other MSers to hear:
Hi all,

I thought I'll let you know what I discovered recently about my illness. I mentioned earlier that I had a thrombosis and lost my azygos. Then I was diagnosed with Lyme disease (borreliosis for Europeans). That was after long discussion about my symptoms with doctor specializing in infectious diseases. I took antibiotics for 3,5 months and felt a bit better, but not as much as I anticipated. Already earlier I had decided that I needed some proof and correct medication, so I contacted Borreliose Center Augsburg (BCA) in Germany, sent my blood samples in February and went to see them last week. I found out that I have Lyme disease, ehrlichiosis, and mycoplasma.  All these tests were negative in Finland, but the tests were designed for acute, not chronic diseases. That explains also why the results of my Liberation didn't last: those chronic bacterial infections cause inflammation of the veins.These also explain my symptoms, pains and fatigue as the bacteria steals the energy from the cells they inhabit. So, now I'll have to start a long treatment with antibiotics to rid myself of all those infections, and then we will see what remains - MS. Although, at the moment my medical identity is confusing - I have four different diseases?

This have been a surprise, as I didn't have a tick bite indicating Lyme, and I lived in Asia when the symptoms started.. If you can, please have tests for chronic bacterial infections, maybe you'll  find some little bug that makes you feel much worse than you should be.

I'll keep you informed on (any) progress.
All the best to all of you,

Then, in the same message where she gave me permission to publish what she wrote, she added this:
Hi Ted,

I'm happy to  hear that the procedure went well and you have hope for further improvements. I have started to think that there are at least four reasons for MS: autoimmune, congenital errors in veins (Liberation), bacterial infections (affecting veins), and trauma. They all seems to cause a domino-like chain reaction, all leading to same symptoms and diagnosis. Therefore it is important to determine the cause before giving any immunosuppressing medication - e.g. those drugs won't help with congenital malformations and will cause the bacteria to spread faster.

Anyway, my battle is just beginning (again). I hope for you that the second Liberation will be the last and there will be only improvements!


Wednesday, March 7, 2012

Summary of interventions

We're just back from the post-procedure consult with Dr. Arata.  This is what we found out:
  1. My left jugular stent, the one that was put in place in Poland, is completely unplugged and working perfectly - Yahoo!
  2. My right jugular has no valve at all, so the narrowing where the valve should have been was ballooned.  Dr. Arata says that his experience is that 50% of such interventions in the jugular will work beyond 2 months... so we have to wait and see.
  3. My azygous vein was completely weird, something he'd never seen before: no valve at all where it comes in to the heart.  They did a ballooning there.  Normally venoplasty in the azygous works very well, but since this is something new, they don't know how successful or prolonged it will be. Interestingly, although I was the first person he had seen with such a problem, he saw a second person with the same problem the same day.
  4. My other veins down to the pelvis are OK, but they didn't look at my veins or arteries below my pelvis.  Given my symptoms (such as occasional swelling of the left foot), it is possible I have problems there, which would tie in with the results of the EMG my neurologist did... besides the MRI (that I have been waiting months for), Dr. Arata suggested a US doppler of my leg blood flow.
So now it's a matter of waiting to see what happens, though I think we'll be making some changes to our diet as suggested by the clinic here (which seem to be pretty well the same as those suggested in Dr. Bill Code's book).

Tuesday, March 6, 2012

Tomorrow's The Big Day... Again

This morning I had my Haake-protocol MRV, then met with Dr. Arata in the early afternoon.  The images showed some blood flow problems (as was found in Bangor last June) but the "gold standard" test is apparently still venography, and if they're going to put a catheter in for that, they might as well fix any problems they find. We (Dr. Arata, Mary and I) discussed my expectations (see my February 24th posting) and Dr. Arata agreed my expectations were realistic.  He was surprised that my initial "liberation" had lasted as long as it had and then was followed by such a gradual decline - that's not a "standard", if there is such a thing.  He also agreed that with such long-lasting relief of some symptoms (fatigue, balance, autonomic functions), even if I have to have this done every few years, it could be well worth it from a quality of life point of view, as well as financially given that I have embarked on an interesting new post-retirement career that will require a lot of energy and travel.

So, tomorrow I am being "re-liberated"... and we'll see what that brings.

P.S.: I'm annoyed with myself that I didn't ask that the MRV done today would also include my lower spine, where my neurologist thinks there may be, possibly, some causes for my mobility problems.  I just assumed that it would, but that's what you get for making assumptions.  That means I'll still have to undergo an MRI in Fredericton - whenever that will be, since it is well over six months that I've been waiting.  But Dr. Arata did say that he'll check out my veins down there while he's in the neighbourhood.