| Procedure Video Journal |
This is my Video Journal. I will be putt the videos on Youtube as well as this website. Just click the link
on the current date. It may help to get the word out for this worthy procedure. If you have problems with
the links below displaying the videos, please click this link, My YouTube, which will bring you to a
compilation of my videos on YouTube.
These videos documented my daily journey through the course of the procedure, beginning with
chemotherapy through stem cell reinfusion and engraftment. My hope is that the videos will help to
inform those people thinking about this procedure for themselves or someone they know. In addition,
perhaps these videos can, in some way, help to make the procedure more accepted in the medical
community so that insurance companies will reconsider their current stance and provide coverage.
New Update at the bottom
on the current date. It may help to get the word out for this worthy procedure. If you have problems with
the links below displaying the videos, please click this link, My YouTube, which will bring you to a
compilation of my videos on YouTube.
These videos documented my daily journey through the course of the procedure, beginning with
chemotherapy through stem cell reinfusion and engraftment. My hope is that the videos will help to
inform those people thinking about this procedure for themselves or someone they know. In addition,
perhaps these videos can, in some way, help to make the procedure more accepted in the medical
community so that insurance companies will reconsider their current stance and provide coverage.
New Update at the bottom
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| Contact brian@allyoumed.com |
| June 2007 |
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| July 2007 |
| AUGUST 2007 |
Greetings to all,
I deeply apologize for the delay in updating my progress after the procedure ended last July 27, 2007.
Leaving Chicago on August 02, 2007 to fly home to San Diego was very difficult as I was extremely
weak. I would tire very easily and had to stop to rest many times. Thank God my wife, Charo was there
to assist me. The flight itself was uncomfortable in so many different ways. But it was good to get
home again. Here is an account of my experiences from August 01, 2007 to October 27, 2007.
The nausea from the chemo had passed and I could eat, just not normal quantities of food. When I
weighed myself at home I found that I had lost 30 pounds during the procedure. I was not sleeping
well, awakening often at night. Even minor physical exertion, like walking upstairs, caused me to
sweat heavily. My legs and arm had lost considerable muscle mass. As my immune system was that
of a newborn baby, I was to avoid crowded places, animals, and all kids. I could see friends a couple
at a time. I get blood drawn every week or two to ensure my counts are getting back to normal. So far,
so good. Still no hair, though. I think I'll just keep it like this.
A few days after I got home, my old MS flare-ups started. I was advised by the Immunologist that this
would likely occur as my body just went through a great deal of stress from the procedure. (And those
of you with MS know that it doesn't take much stress to trigger a relapse.). This time, however, all of
the symptoms from past relapses occurred at the same time (with the exception of Optic Neuritis, that
did not recur). The symptoms were spasms and pain in all extremities as well as the trunk of my body
to the neck, loss of sense of balance, and severe lower back pain, ringing and buzzing in both ears,
and urinary problems. Stiffness in the leg muscles and severe fatigue. The most debilitating of the
flare-ups were bouts of deep depression. If you've had real depression, you know what I'm saying.
But my wife and mother-in-law made me as comfortable as they could and took care of my daily
needs.
The doctor told me I would improve in overall health in 7-10 weeks to the point where I should be
more functional (strength returns, MS flare-ups would recede, etc. He explained it to me like this:
"What you went through physically with the MS and this procedure gave me something similar to
Post-traumatic Stress Syndrome. He may have been right in my case.
August was the bad month. But in September I started getting my strength back. The MS flare-ups
were still there, but they moved more into the background, if you know what I mean. The heat in
September didn't help as they tended to make the fatigue stronger in the heat of the day. But overall,
my health improved steadily in September. I wish I could show you all a graph as the improvements
were not in a straight line. They came and went in cycles. Some days would be good days and some
days would be bad days. Some days the flare-up cycle were strong. Some days I felt like my old self
again.
By the end of September, I stubbornly carried boxes and moved furniture. That one weekend set me
back into the bad cycle and it lasted for weeks, into October. I was heavily scolded by my wife and
doctor to not do anything like that for at least a year.
I have started work again as an auto claims adjuster for the same company I worked before. They
were gracious and flexible to my needs. State Disability (which I was on from May through
September) payments do not pay a living wage. But I was glad SDI was there, It was better than
nothing, Going back to work is another transition that was a bit difficult, but I think it was good for my
mind to be focused on something else.
Now for the Prognosis that everyone was waiting for:
Has the procedure shown any benefit yet?
Do I expect to be cured of MS completely from this procedure?
Since it's barely been three months since the procedure, I've not seen any definitive improvement. But
the timeline for true benefits to appear is 12-18 months. So I have a ways to go before I know if
current flare-ups disappear and no new lesions appear.
You see, that was the rationale to do this procedure. My EDSS Score was 2.5. I was a good
candidate. I knew there was a possibility that lesions already established might heal; and they might
not. Depending on the amount of damage done to the nerve. However, my true motivation for doing
this procedure was the chemo I went through destroyed my immune system, thus destroying the
malfunctioned immune memory that was attacking my central nervous system. This all means that
the chances are very good (over 80%) that there will be no further MS attacks. I can live with the
disabilities I already have. I do not want to add to them.
MS being a progressive disease, the prognosis will always be toward further disability and loss of
quality of life. I did this procedure because it was my only hope to be able to provide a quality life for
my family. Otherwise, my wife could look forward to years of my progressive physical deterioration. I
would not do that to my wife if there was any way to stop it.
Until then, God Bless.
Brian Tilaro
I deeply apologize for the delay in updating my progress after the procedure ended last July 27, 2007.
Leaving Chicago on August 02, 2007 to fly home to San Diego was very difficult as I was extremely
weak. I would tire very easily and had to stop to rest many times. Thank God my wife, Charo was there
to assist me. The flight itself was uncomfortable in so many different ways. But it was good to get
home again. Here is an account of my experiences from August 01, 2007 to October 27, 2007.
The nausea from the chemo had passed and I could eat, just not normal quantities of food. When I
weighed myself at home I found that I had lost 30 pounds during the procedure. I was not sleeping
well, awakening often at night. Even minor physical exertion, like walking upstairs, caused me to
sweat heavily. My legs and arm had lost considerable muscle mass. As my immune system was that
of a newborn baby, I was to avoid crowded places, animals, and all kids. I could see friends a couple
at a time. I get blood drawn every week or two to ensure my counts are getting back to normal. So far,
so good. Still no hair, though. I think I'll just keep it like this.
A few days after I got home, my old MS flare-ups started. I was advised by the Immunologist that this
would likely occur as my body just went through a great deal of stress from the procedure. (And those
of you with MS know that it doesn't take much stress to trigger a relapse.). This time, however, all of
the symptoms from past relapses occurred at the same time (with the exception of Optic Neuritis, that
did not recur). The symptoms were spasms and pain in all extremities as well as the trunk of my body
to the neck, loss of sense of balance, and severe lower back pain, ringing and buzzing in both ears,
and urinary problems. Stiffness in the leg muscles and severe fatigue. The most debilitating of the
flare-ups were bouts of deep depression. If you've had real depression, you know what I'm saying.
But my wife and mother-in-law made me as comfortable as they could and took care of my daily
needs.
The doctor told me I would improve in overall health in 7-10 weeks to the point where I should be
more functional (strength returns, MS flare-ups would recede, etc. He explained it to me like this:
"What you went through physically with the MS and this procedure gave me something similar to
Post-traumatic Stress Syndrome. He may have been right in my case.
August was the bad month. But in September I started getting my strength back. The MS flare-ups
were still there, but they moved more into the background, if you know what I mean. The heat in
September didn't help as they tended to make the fatigue stronger in the heat of the day. But overall,
my health improved steadily in September. I wish I could show you all a graph as the improvements
were not in a straight line. They came and went in cycles. Some days would be good days and some
days would be bad days. Some days the flare-up cycle were strong. Some days I felt like my old self
again.
By the end of September, I stubbornly carried boxes and moved furniture. That one weekend set me
back into the bad cycle and it lasted for weeks, into October. I was heavily scolded by my wife and
doctor to not do anything like that for at least a year.
I have started work again as an auto claims adjuster for the same company I worked before. They
were gracious and flexible to my needs. State Disability (which I was on from May through
September) payments do not pay a living wage. But I was glad SDI was there, It was better than
nothing, Going back to work is another transition that was a bit difficult, but I think it was good for my
mind to be focused on something else.
Now for the Prognosis that everyone was waiting for:
Has the procedure shown any benefit yet?
Do I expect to be cured of MS completely from this procedure?
Since it's barely been three months since the procedure, I've not seen any definitive improvement. But
the timeline for true benefits to appear is 12-18 months. So I have a ways to go before I know if
current flare-ups disappear and no new lesions appear.
You see, that was the rationale to do this procedure. My EDSS Score was 2.5. I was a good
candidate. I knew there was a possibility that lesions already established might heal; and they might
not. Depending on the amount of damage done to the nerve. However, my true motivation for doing
this procedure was the chemo I went through destroyed my immune system, thus destroying the
malfunctioned immune memory that was attacking my central nervous system. This all means that
the chances are very good (over 80%) that there will be no further MS attacks. I can live with the
disabilities I already have. I do not want to add to them.
MS being a progressive disease, the prognosis will always be toward further disability and loss of
quality of life. I did this procedure because it was my only hope to be able to provide a quality life for
my family. Otherwise, my wife could look forward to years of my progressive physical deterioration. I
would not do that to my wife if there was any way to stop it.
Until then, God Bless.
Brian Tilaro
| Update from October 27, 2007 |
