Postscript

Readers are now asking good questions based on my last post.
 
Was the improvement of M.S. symptoms shown in all of the patients or only some? Did the panel say how long the improvements lasted? Were there any bad side effects to the angioplasty procedure? Can’t the patient just go ahead and have the procedure even if doctors aren’t sure why a positive change happens?
 
I’ll try to answer them here for all to see.
 
***WARNING: What follows should not be taken as medical advice. It must be considered my opinion. You should always defer to your doctor.***
 
At this point, any improvement in symptoms is all anecdotal. We can’t measure it. There is no way to prove it. So unfortunately we have to consider the placebo effect a possibility. Which is why more trials are needed: to rule this out.
 
If the blockage recurs, we can see that on an x-ray but we don’t yet know what this means. Does this also mean the symptoms come back? Also, there is no established time frame by which, if a recurrence is going to happen, it would have and if it hasn’t, a patient is in the clear.
 
At this point in history, the only tool we have to check in on the progress of M.S. is an MRI (magnetic resonance imaging) scan. But in M.S. this has been an imperfect tool: the scarring that happens on the brain and spinal cord, which we can see on an MRI scan, does not correspond in any way with a patient’s symptoms.
 
Multiple scars are enough to tentatively diagnose the disease, with both visible and self-reported progression over time. But it’s a mystery how the scarring we can see in a scan relates to damage that we can’t see happening deeper in the brain.
 
And just when you think that at least it’s something we can use to gauge disease activity, it disappears. Sometimes what shows up in one scan is no longer visible in the next. I know, weird.
 
Based on an MRI, there is no way yet to tell what is being affected: speech, cognition, mobility, vision, even swallowing. We can have any one of these or all of these, at different times, or at once, or even one incident and nothing more.
 
Can we figure out how to translate what we see on an MRI into discrete symptoms? Or maybe it could be an indicator of symptoms to come? But I digress: this is a separate line of study, maybe for another time.
 
Nevertheless, one of the first questions has to be whether improvement to CCSVI corresponds to the images on the MRI.
 
As far as bad side effects, Dr. Zamboni reports that the angioplasty procedure is safe and well-tolerated, with nothing riskier (yet?) than headache, nausea and possible recurrence. But further reading warns that vein rupture and stroke should also be considered risks. As is permanent nerve pain.
 
A doctor at Stanford was performing his version of this treatment, inserting stents, which have successfully been used to widen clogged arteries of the heart, into the jugular veins of M.S. patients. The problem that developed here becomes apparent when you consider the biology.
 
Arteries carry blood away from the heart and thus go from narrower to wider as they get further from the heart. A stent can break free and travel downstream without causing a life threatening complication.
 
But veins carry blood to the heart. Veins go from narrower to wider as they get closer to the heart. So a stent here can break free and end up in the heart. And it appears to have happened here.
 
This doctor treated about 35 patients, then the treatment option was discontinued because one of his patients died from a brain hemorrhage and another had to have emergency open heart surgery to remove a stent that had dislodged and traveled to his heart.
 
Now the family of the woman who died maintains that she did not die from the procedure but from an adverse reaction to the medications prescribed for aftercare. This may well be, but it highlights again that this is a brand new discovery and treatment. Maybe the aftercare could have been more closely monitored.
 
Ultimately, we expect doctors to both know and fully disclose the risks of a procedure. It is unclear how much warning of risks was given in this instance. It is also unclear to me if that could have even been predicted..
 
The moral I take away from this is that a doctor must balance patient safety with scientific discovery. I guess I have realized that I’d prefer that he or she err on the side of the patient. Then when confronted with all known facts, let the patient decide. Some patients are still willing to be the “first” and assume the unknown risks.
 
I’m not. As an active patient it’s my duty to be pushing for more aggressive treatments and discoveries, but I’m not willing to risk dying or even permanent nerve pain. At this point in my life, I have too much to lose.
Tagged : /

A new next-big-thing

I recently listened in on the live web forum on chronic cerebrospinal venous insufficiency, or CCSVI, hosted jointly by the American Academy of Neurology and the National Multiple Sclerosis Society at the AAN annual meeting.
 
CCSVI is a narrowing or even blockage of the jugular veins, causing faulty blood drainage from the brain that may contribute to nervous system damage in M.S. This hypothesis has been put forth by Dr. Paulo Zamboni from the University of Ferrara in Italy. [Spectacular name!!!]
 
Based on his report on approximately 65 M.S. patients, published in June 2009 (J Neurol Neurosurg Psychiatry 2009; 80:392-399), venous hypertension treated by the standard endovascular angioplasty, seems to immediately improve the M.S. symptoms of these patients.
 
Angioplasty is where a doctor threads a thin tube through a blood vessel in the arm or groin over to the involved site in the vein. Once the tube is in place, the doctor inflates the tiny balloon at the end of the tube to disturb the plaque build-up and encourage it to move outward against the walls of the vein. This widens it and restores blood flow; it is often even an outpatient procedure.
 
In the U.S., early findings of a high prevalence of venous hypertension in the M.S. population seem to suggest that there is an association, but larger clinical trials are needed to confirm that fact. And if CCSVI plays a role in M.S., it is not yet known whether the condition is a symptom or a trigger.
 
There are other questions as well.
 
For example, since CCSVI occurs in many people who don’t have M.S. as well, does this indicate that the condition is just a false clue, an interesting red herring? (For example, I once heard that M.S. and gout are mutually exclusive: it seems that you can only have one but not both. Interesting but not necessarily relevant.)
 
Also, according to one panelist, the venous system has many redundancies. So does this blockage even need to be corrected?
 
He also reports that the blockages in CCSVI are not plaque but fibrous lesions.
 
Also, some patients who have had the angioplasty procedure subsequently have had the venous obstruction recur. What causes this and are there things patients can do to reduce the incidence?
 
Bottom line: this is one of the next big discoveries in M.S. research and the community is anxious to have larger clinical trials.

Tagged : /

Re: Work

People have asked about my work situation recently.  So here's my story:

I was hired by my current company in January 2003.  They were acquired by what is now known as The Thomson Reuters Corporation , and the Human Resource department is in Eagan, MN.

I have always been up-front about my disease, so when my fatigue started becoming an issue in October 2005, I asked my HR department if they could make some "reasonable accommodation" for my multiple sclerosis.  This is in accordance to the Americans with Disabilities Act enacted in 1990 (see Reasonable Accommodation and the ADA , by the law firm Tillinghast Licht LLP; also the U.S. Dept. of Labor's Disability Resources).

My suggestion was that they allow me to telecommute to the office on Fridays, as the drive was about 40 miles each way.  This would eliminate one of those trips a week.  In my company there had been very little official precedence for working at home, but now I wanted it officially noted on my record in case I needed more accommodation going forward.  

Granted, my work was largely on the computer and thus able to be easily accomplished just as well at home. So HR readily agreed but asked me to get a doctor's note attesting to my condition and send it to them in MN.  My doctor promptly complied and I began to work at home on Fridays.

In March 2007, I began to have vision problems which led to my concerns about driving at all.  I decided to go back to my doctor and again have him write a very generic letter asking the company to continue to provide me "reasonable accommodation" and thanking them for their continued support of me.  I made photocopies for each of my immediate supervisors and forwarded the letter to HR.

Then I explained my situation at work, told them that I would now be working at home full-time but still getting e-mail, and also made sure they had my phone number at home.  I had a VPN (Virtual Private Network) account set up so I am able to do work behind our company's firewall and got a headset for my cordless phone so I don't have to hold it when working.

In the beginning there were lots of calls to me at home while everyone got used to the situation.  But little by little everyone has and it works great for me.  I work with a group of people, so we have weekly team meetings in a conference room where I participate on a speaker phone, and also we all have weekly one-on-ones with our team leader; I do mine by phone.

Because I don't expend my limited energy on my commute, I am still able to work full-time.  But also because I am home, I can easily take a lunchtime nap in my own bed if I need to.  I feel very fortunate.

Finally, I have had no experience applying for Social Security Disability Insurance benefits yet, but OH has now been receiving it since June 2006 and can help me if/when I need it. 

Tagged : /