I was in great shape last Thursday preparing for my interview, and successfully making it through the grocery store. Please appreciate the grey-free roots in my hair in hi-def!
I was still rocking on Friday morning helping the wonderful husband straighten up for the interview. For the actual interview I was on my game. I'm sure adrenaline helped A LOT!
Two young, lovely friends of my daughter joined us for the weekend, then dinner guests Sunday night. All incredible experiences that I wouldn't have missed for the world! But I started to wilt on Sunday. And by that I mean that my balance and walking were pretty pathetic.
Monday I was not able to slow down, and the fatigue and weakness were even worse.
But today is a new day. Tuesday will be my day of rest, or at least my day of only one activity. That is my pledge.
Pre-Liberation I would not have even attempted 75% of what I did over the past 5 days. LIke a foodie in front of a mouth-watering buffet, I overindulged. Big time.
Despite my body screaming at me to give it a break, I ignored it. Well there are two ways of looking at it, I guess. I could have A, listened, and missed out on a lot of fun. Or B, plowed through and done it all, while graciously accepting a little more physical support from my able husband and mom.
I picked B with no regrets! Now only time will tell how long my body will take to recuperate. I'm guessing two days. I'll let you know...
p.s. My good buddy R. is having his procedure tomorrow at GU. He and I both ended up in a GU vascular surgeon's office on the same day in the beginning of January. He tracked me down on TIMS. Along with our friend H., we have been an unstoppable team in getting ourselves tested (all positive, by the way)! And he is now on the brink of Liberation! H. is not a GU patient, and is taking a more cautious approach anyway. She will get the results of her full MRV today!
Over the past 3 months we have been a wonderful support system for one another. We could not have made it this far this quickly without each other. I am very lucky to have them on my team. Thanks guys!
Tuesday, March 30, 2010
Friday, March 26, 2010
First my jugs and now my mug!
This afternoon I was interviewed by our local CBS news affiliate, WUSA9. They met with Dr. T this morning. I am told that he did a fantastic job. Yeah Dr. T! They are setting up a meeting with Dr. Neville for next week.
The reporter, producer and cameraman did a great job of making me feel comfortable and safe. They seem truly committed to doing an informative piece about CCSVI, and the life of one woman living with MS. We did the interview, then the cameraman followed my older daughter and me to the bus stop to pick up my younger daughter. What makes this at all interesting is that she was walking and I was on my Segway! It is the best way to travel if putting one foot in front of the other is not a great option for long (for me anyway) trips.
The interview will air sometime the week of April 5th. I will post the date when I know it, and link the actual interview here after it airs. If you are local you can see it on Channel 9 at 11:00 with Anita Brikman.
The only new "improvement" to report is that my husband and daughter think I am funnier than I have been in a long time. Don't know whether to be flattered or offended. I'll take flattered. It is much easier to be funny and generally more upbeat when, after 20 years, you see your future filled with promise. The thought that my MS might not progress anymore is still hard to believe. But I'm working on it! The idea of improving is beyond exciting. We shall see...
Happy spring and Cherry Blossom Festival (and wicked tree pollen allergies) from Washington D.C.!
The reporter, producer and cameraman did a great job of making me feel comfortable and safe. They seem truly committed to doing an informative piece about CCSVI, and the life of one woman living with MS. We did the interview, then the cameraman followed my older daughter and me to the bus stop to pick up my younger daughter. What makes this at all interesting is that she was walking and I was on my Segway! It is the best way to travel if putting one foot in front of the other is not a great option for long (for me anyway) trips.
The interview will air sometime the week of April 5th. I will post the date when I know it, and link the actual interview here after it airs. If you are local you can see it on Channel 9 at 11:00 with Anita Brikman.
The only new "improvement" to report is that my husband and daughter think I am funnier than I have been in a long time. Don't know whether to be flattered or offended. I'll take flattered. It is much easier to be funny and generally more upbeat when, after 20 years, you see your future filled with promise. The thought that my MS might not progress anymore is still hard to believe. But I'm working on it! The idea of improving is beyond exciting. We shall see...
Happy spring and Cherry Blossom Festival (and wicked tree pollen allergies) from Washington D.C.!
Tuesday, March 23, 2010
Some clarifications on the AP article & week 3 symptom update
No one article can capture the true essence of what is being done here. I thought the reporter did a decent job. But for you my family and friends, I would like to clear up a couple of things. That's the cool thing about having my very own blog, I can do anything I want to here! The italicized part below are quotes from the AP article.
1. "A lot of people are starting to go to fly-by-night places," says Tornatore. This is just his warning to MS patients to be careful. Unfortunately discoveries like this inevitably open the door to unscrupulous people with $$$ in their eyes. He's just looking out for us. I also happen to know that he is more enthusiastic about the implications of CCSVI than he lets on in the article. I understand that he had to put on his serious doctor hat for the press, though.
2. But nearly half had their veins relapse, and Zamboni urged a larger, more scientifically controlled study be done. 47% of Zamboni's patients restenosed. The people who restenosed began having relapses of symptoms, or "MS-like exacerbations". But he just went right back in and reballooned them. Within 4 hours to 4 days of reballooning, they all improved. We don't know yet if that second attempt resulted in a permanent fix. Hopefully we will hear more about that from the good doctor soon.
3. Next, Buffalo researchers scanned the veins of 500 people. About 55 percent of MS patients had signs of CCSVI, compared with 22 percent of healthy people In an interview with a Canadian medical reporter Dr. Zivadinov, the lead investigator of the Buffalo study, indicated that it was actually 80% in Clinically Diagnosed MSers. The 55% number included people who have CIS (clinically isolated syndrome) or only one MS-like event.
Also, for those of you who think I am brave for having this procedure, thanks. The truth is that it was easier than having my filling replaced at the dentist yesterday. Love the dentist, hate the drill!
Regardless of it's impact on my MS, 75-95% stenosed veins that drain blood from a major organ like the brain MUST be fixed. The fact that this congenital problem came to light as a result of Zamboni looking for a way to treat his wife's MS is just a happy coincidence.
----------------------------------------------------------------------------------
Symptom update at the 3 week point:
1. fingers and toes still warm
2. balance still evolving. It is still inconsistent, but I am starting to work hard on my hip muscles so that I can lift my legs better (do you see that G., my awesome PT?)
3. new observation- I have not choked once since my Liberation! It used to happen several times a week before. Can't explain it, but it certainly makes me and the husband who worries very happy!
1. "A lot of people are starting to go to fly-by-night places," says Tornatore. This is just his warning to MS patients to be careful. Unfortunately discoveries like this inevitably open the door to unscrupulous people with $$$ in their eyes. He's just looking out for us. I also happen to know that he is more enthusiastic about the implications of CCSVI than he lets on in the article. I understand that he had to put on his serious doctor hat for the press, though.
2. But nearly half had their veins relapse, and Zamboni urged a larger, more scientifically controlled study be done. 47% of Zamboni's patients restenosed. The people who restenosed began having relapses of symptoms, or "MS-like exacerbations". But he just went right back in and reballooned them. Within 4 hours to 4 days of reballooning, they all improved. We don't know yet if that second attempt resulted in a permanent fix. Hopefully we will hear more about that from the good doctor soon.
3. Next, Buffalo researchers scanned the veins of 500 people. About 55 percent of MS patients had signs of CCSVI, compared with 22 percent of healthy people In an interview with a Canadian medical reporter Dr. Zivadinov, the lead investigator of the Buffalo study, indicated that it was actually 80% in Clinically Diagnosed MSers. The 55% number included people who have CIS (clinically isolated syndrome) or only one MS-like event.
Also, for those of you who think I am brave for having this procedure, thanks. The truth is that it was easier than having my filling replaced at the dentist yesterday. Love the dentist, hate the drill!
Regardless of it's impact on my MS, 75-95% stenosed veins that drain blood from a major organ like the brain MUST be fixed. The fact that this congenital problem came to light as a result of Zamboni looking for a way to treat his wife's MS is just a happy coincidence.
----------------------------------------------------------------------------------
Symptom update at the 3 week point:
1. fingers and toes still warm
2. balance still evolving. It is still inconsistent, but I am starting to work hard on my hip muscles so that I can lift my legs better (do you see that G., my awesome PT?)
3. new observation- I have not choked once since my Liberation! It used to happen several times a week before. Can't explain it, but it certainly makes me and the husband who worries very happy!
Monday, March 22, 2010
AP article is out!
Testing new MS theory as patients demand care now
WASHINGTON – Under intense pressure from patients, some U.S. doctors are cautiously testing a provocative theory that abnormal blood drainage from the brain may play a role in multiple sclerosis — and that a surgical vein fix might help.
If it pans out, the approach suggested by a researcher in Italy could mark a vast change for MS, a disabling neurological disease long blamed on an immune system gone awry. But many patients frustrated by today's limited therapies say they don't have time to await the carefully controlled studies needed to prove if it really works and are searching out vein-opening treatment now — undeterred by one report of a dangerous complication.
"This made sense and I was hell-bent on doing it," says Nicole Kane Gurland of Bethesda, Md., the first to receive the experimental treatment at Washington's Georgetown University Hospital, which is set to closely track how a small number of patients fare before and after using a balloon to widen blocked veins.
In Buffalo, N.Y., more than 1,000 people applied for 30 slots in a soon-to-start study of that same angioplasty procedure. When the Buffalo General Hospital team started a larger study a few months ago just to compare if bad veins are more common in MS patients than in healthy people — not to treat them — more than 13,000 patients applied.
The demand worries Georgetown neurologist Dr. Carlo Tornatore, who teamed with vascular surgeon Dr. Richard Neville in hopes of getting some evidence to guide his own patients' care.
"A lot of people are starting to go to fly-by-night places," says Tornatore. Doing this research takes time, he said. "It's a marathon, not a 100-yard sprint. We have to be very careful."
Multiple sclerosis occurs when the protective insulation, called myelin, that coats nerve fibers gradually is destroyed and scar tissue builds up, short-circuiting messages from the brain and spinal cord to the rest of the body — impairing walking and causing fatigue and vision, speech, memory and other problems. It affects about 2.5 million people worldwide, including 350,000 Americans.
A condition with an unwieldy name has become the hottest topic of debate in MS: Chronic cerebrospinal venous insufficiency, or CCSVI. An Italian vascular specialist, Dr. Paolo Zamboni, was hunting ways to help his wife's MS when he discovered that veins carrying oxygen-depleted blood down the neck or spinal cord were narrowed, blocked or twisted in a group of patients. Zamboni reported that made blood back up in a way that might be linked to MS' damage, by causing tiny leaks of immune cells into the rain that start a cascade of inflammatory problems.
Then came the step that spread excitedly through MS patient Internet forums: In a pilot study, Zamboni's team used balloon angioplasty — similar to a longtime method for unclogging heart arteries — to widen affected veins in 65 patients. He reported varying degrees of improvement, mostly in patients with the relapsing-remitting form of MS who experienced fewer flare-ups of symptoms over the next 18 months and some improvements in quality of life.
But nearly half had their veins relapse, and Zamboni urged a larger, more scientifically controlled study be done.
Next, Buffalo researchers scanned the veins of 500 people. About 55 percent of MS patients had signs of CCSVI, compared with 22 percent of healthy people, says lead researcher Dr. Robert Zivadinov, who will present his data next month at a major neurology meeting.
Meanwhile, a Stanford University surgeon tried implanting scaffolding-like stents — also developed for heart disease — into some MS patients' narrowed veins. Dr. Michael Dake halted the work in December after 35 people were treated, saying in an e-mail to colleagues that he decided "after deep soul-searching" not to continue outside of a clinical trial. Stanford won't discuss details, but the journal Annals of Neurology reported that one patient's stent dislodged and flowed to the heart, requiring emergency open-heart surgery to remove it. (An earlier death was reported by family members to be from a stroke unrelated to the MS treatment.)
The MS Society soon will announce funding for additional studies.
Like many neurologists, Georgetown's Tornatore watched the developments with a mixture of skepticism and curiosity. After all, decades ago some doctors first suggested circulation might play a role. The scars tend to cluster near veins, and blood-thinning treatment was tried before immune-targeting drugs were proven to help many MS patients.
He ticks off the possibilities: This could be a blind alley, like so many to befall MS over the years. Or it could work a little. Or it might be revolutionary.
"I have no idea. I'm not predisposed to any of them," Tornatore says.
But he and Neville decided angioplasty was the least risky option for a limited test. In 30 patients who've undergone a $400 ultrasound exam so far, about half have evidence of the vein abnormality.
Gurland was the first treated earlier this month, her jugular veins blocked so tightly that Neville had a hard time even pushing the tiny angioplasty wire inside. But right after the treatment, Gurland's feet that for years had been cold and purplish became warmer and normally colored.
What about MS' hallmark fatigue and weakness, and her scarred nerve cells? While Gurland thinks her balance in the morning, often her worst time, is improving a bit, it's too soon to know; those tests are yet to come.
But last week, her close friend Heather Puck, 61, came in for a vein check, too — calling it the first MS test she ever hoped to pass.
___
EDITOR'S NOTE — Lauran Neergaard covers health and medical issues for The Associated Press in Washington.
p.s. Who is editing this stuff? Her name is Heather Tuck!
(that's my beautiful right IJV on the screen)
WASHINGTON – Under intense pressure from patients, some U.S. doctors are cautiously testing a provocative theory that abnormal blood drainage from the brain may play a role in multiple sclerosis — and that a surgical vein fix might help.
If it pans out, the approach suggested by a researcher in Italy could mark a vast change for MS, a disabling neurological disease long blamed on an immune system gone awry. But many patients frustrated by today's limited therapies say they don't have time to await the carefully controlled studies needed to prove if it really works and are searching out vein-opening treatment now — undeterred by one report of a dangerous complication.
"This made sense and I was hell-bent on doing it," says Nicole Kane Gurland of Bethesda, Md., the first to receive the experimental treatment at Washington's Georgetown University Hospital, which is set to closely track how a small number of patients fare before and after using a balloon to widen blocked veins.
In Buffalo, N.Y., more than 1,000 people applied for 30 slots in a soon-to-start study of that same angioplasty procedure. When the Buffalo General Hospital team started a larger study a few months ago just to compare if bad veins are more common in MS patients than in healthy people — not to treat them — more than 13,000 patients applied.
The demand worries Georgetown neurologist Dr. Carlo Tornatore, who teamed with vascular surgeon Dr. Richard Neville in hopes of getting some evidence to guide his own patients' care.
"A lot of people are starting to go to fly-by-night places," says Tornatore. Doing this research takes time, he said. "It's a marathon, not a 100-yard sprint. We have to be very careful."
Multiple sclerosis occurs when the protective insulation, called myelin, that coats nerve fibers gradually is destroyed and scar tissue builds up, short-circuiting messages from the brain and spinal cord to the rest of the body — impairing walking and causing fatigue and vision, speech, memory and other problems. It affects about 2.5 million people worldwide, including 350,000 Americans.
A condition with an unwieldy name has become the hottest topic of debate in MS: Chronic cerebrospinal venous insufficiency, or CCSVI. An Italian vascular specialist, Dr. Paolo Zamboni, was hunting ways to help his wife's MS when he discovered that veins carrying oxygen-depleted blood down the neck or spinal cord were narrowed, blocked or twisted in a group of patients. Zamboni reported that made blood back up in a way that might be linked to MS' damage, by causing tiny leaks of immune cells into the rain that start a cascade of inflammatory problems.
Then came the step that spread excitedly through MS patient Internet forums: In a pilot study, Zamboni's team used balloon angioplasty — similar to a longtime method for unclogging heart arteries — to widen affected veins in 65 patients. He reported varying degrees of improvement, mostly in patients with the relapsing-remitting form of MS who experienced fewer flare-ups of symptoms over the next 18 months and some improvements in quality of life.
But nearly half had their veins relapse, and Zamboni urged a larger, more scientifically controlled study be done.
Next, Buffalo researchers scanned the veins of 500 people. About 55 percent of MS patients had signs of CCSVI, compared with 22 percent of healthy people, says lead researcher Dr. Robert Zivadinov, who will present his data next month at a major neurology meeting.
Meanwhile, a Stanford University surgeon tried implanting scaffolding-like stents — also developed for heart disease — into some MS patients' narrowed veins. Dr. Michael Dake halted the work in December after 35 people were treated, saying in an e-mail to colleagues that he decided "after deep soul-searching" not to continue outside of a clinical trial. Stanford won't discuss details, but the journal Annals of Neurology reported that one patient's stent dislodged and flowed to the heart, requiring emergency open-heart surgery to remove it. (An earlier death was reported by family members to be from a stroke unrelated to the MS treatment.)
The MS Society soon will announce funding for additional studies.
Like many neurologists, Georgetown's Tornatore watched the developments with a mixture of skepticism and curiosity. After all, decades ago some doctors first suggested circulation might play a role. The scars tend to cluster near veins, and blood-thinning treatment was tried before immune-targeting drugs were proven to help many MS patients.
He ticks off the possibilities: This could be a blind alley, like so many to befall MS over the years. Or it could work a little. Or it might be revolutionary.
"I have no idea. I'm not predisposed to any of them," Tornatore says.
But he and Neville decided angioplasty was the least risky option for a limited test. In 30 patients who've undergone a $400 ultrasound exam so far, about half have evidence of the vein abnormality.
Gurland was the first treated earlier this month, her jugular veins blocked so tightly that Neville had a hard time even pushing the tiny angioplasty wire inside. But right after the treatment, Gurland's feet that for years had been cold and purplish became warmer and normally colored.
What about MS' hallmark fatigue and weakness, and her scarred nerve cells? While Gurland thinks her balance in the morning, often her worst time, is improving a bit, it's too soon to know; those tests are yet to come.
But last week, her close friend Heather Puck, 61, came in for a vein check, too — calling it the first MS test she ever hoped to pass.
___
EDITOR'S NOTE — Lauran Neergaard covers health and medical issues for The Associated Press in Washington.
p.s. Who is editing this stuff? Her name is Heather Tuck!
Saturday, March 20, 2010
Georgetown is screening!
Thank you, Joan for posting this on TIMS.
CCSVI Screenings
We are offering screening diagnostic ultrasounds to evaluate for Chronic Cerebro-Spinal Venous Insufficiency at Georgetown University Hospital.
We are not currently involved in a clinical trial and apologize in advance for any confusion.
This is a screening ultrasound only which may or may not lead to therapeutic treatment in the future.
This screening may or may not be covered by insurance.
We must receive a faxed order for an Extracranial Cerebrovascular Venous Ultrasound signed by your neurologist.
The signed order from your neurologist must include Diagnosis and ICD9 Code.
Fax the order to 202-444-7114 or send to Georgetown University Hospital, Division of Vascular Surgery, 4PHC, 3800 Reservoir Rd., NW, Washington, DC 20007.
The patient’s referring neurologist will receive a copy of the ultrasound.
The patient must contact his/her neurologist to review or obtain a copy of the report.
See attached order that can be printed for the referring provider to complete.
If you need further assistance please call 202-342-2400.
It's me again. My screening was covered. I am sorry that I do not remember what dx and ICD9 codes were used. I had to sign a paper in advance saying that I would be responsible if insurance did not cover it. The cost would have been $375.
Be aware that this really is just a screening. The tech checks the IJVs from the jaw line to the top of the clavicle in the upright and supine positions.
My doc believes that ultrasounds and MRVs are not the best diagnostic tools. Venogram really is the gold standard. I think that it is probably necessary to have some info from the ultrasound to justify (at least for insurance) the need for the venogram.
We also need to figure out how to use ultrasound to monitor, as well as screen for CCSVI. According to Zamboni, my IJVs have a 47% chance of restenosing within 8 to 9 months. I'm an optimist, so to me that means that I have a 53% chance of NOT restenosing!
But I certainly would rather be able to have them checked regularly, or if problems develop, with ultrasound. The venogram was no big deal, but I know it cost a lot more than $375 and is certainly much more involved than a quick swipe of the wand!
I've said it before; we're making history here.
CCSVI Screenings
We are offering screening diagnostic ultrasounds to evaluate for Chronic Cerebro-Spinal Venous Insufficiency at Georgetown University Hospital.
We are not currently involved in a clinical trial and apologize in advance for any confusion.
This is a screening ultrasound only which may or may not lead to therapeutic treatment in the future.
This screening may or may not be covered by insurance.
We must receive a faxed order for an Extracranial Cerebrovascular Venous Ultrasound signed by your neurologist.
The signed order from your neurologist must include Diagnosis and ICD9 Code.
Fax the order to 202-444-7114 or send to Georgetown University Hospital, Division of Vascular Surgery, 4PHC, 3800 Reservoir Rd., NW, Washington, DC 20007.
The patient’s referring neurologist will receive a copy of the ultrasound.
The patient must contact his/her neurologist to review or obtain a copy of the report.
See attached order that can be printed for the referring provider to complete.
If you need further assistance please call 202-342-2400.
It's me again. My screening was covered. I am sorry that I do not remember what dx and ICD9 codes were used. I had to sign a paper in advance saying that I would be responsible if insurance did not cover it. The cost would have been $375.
Be aware that this really is just a screening. The tech checks the IJVs from the jaw line to the top of the clavicle in the upright and supine positions.
My doc believes that ultrasounds and MRVs are not the best diagnostic tools. Venogram really is the gold standard. I think that it is probably necessary to have some info from the ultrasound to justify (at least for insurance) the need for the venogram.
We also need to figure out how to use ultrasound to monitor, as well as screen for CCSVI. According to Zamboni, my IJVs have a 47% chance of restenosing within 8 to 9 months. I'm an optimist, so to me that means that I have a 53% chance of NOT restenosing!
But I certainly would rather be able to have them checked regularly, or if problems develop, with ultrasound. The venogram was no big deal, but I know it cost a lot more than $375 and is certainly much more involved than a quick swipe of the wand!
I've said it before; we're making history here.
Friday, March 19, 2010
MRI day
Hi to all of my new "friends". Damn the web is one amazing, yet frighteningly powerful place!
Today was my MRI. We are doing a baseline SWI measurement of the iron in my brain. Very cool. I did not know that GU had the capability to do this. I always get my MRIs elsewhere, because dealing with parking at the hospital is not fun. Should be very interesting to see what they find. Dr. Mark Haacke is studying this iron issue. His website is here.
I am happy to report that today is the fifth day of better balance. It does deteriorate after exertion or sitting too long. Sigh... There is so little room in between! The good news is that the balance comes back with rest or a little movement. Weird, I know. I'm just reporting the facts, not trying to explain them!
Let's all hope for a slow news days on Monday/Tuesday. That way the AP story will get LOTS of coverage! The reporter told me to look for it Monday afternoon. I don't know how it works exactly. We'll find out when we find out, I guess.
Today was my MRI. We are doing a baseline SWI measurement of the iron in my brain. Very cool. I did not know that GU had the capability to do this. I always get my MRIs elsewhere, because dealing with parking at the hospital is not fun. Should be very interesting to see what they find. Dr. Mark Haacke is studying this iron issue. His website is here.
I am happy to report that today is the fifth day of better balance. It does deteriorate after exertion or sitting too long. Sigh... There is so little room in between! The good news is that the balance comes back with rest or a little movement. Weird, I know. I'm just reporting the facts, not trying to explain them!
Let's all hope for a slow news days on Monday/Tuesday. That way the AP story will get LOTS of coverage! The reporter told me to look for it Monday afternoon. I don't know how it works exactly. We'll find out when we find out, I guess.
Wednesday, March 17, 2010
Famous jugs update
Well, I spent 45 minutes on th phone with the AP reporter this afternoon. She had seen all of my veongram pics this morning with the doctors. She had also seen the pre and post videos of my... wait for it.... FEET!
She said that the story would most likely go out on Monday. Because it is the AP, it could show up anywhere in print and/or on the web. She said that I could look for it on the web in the afternoon. H. and I think that it would look lovely on the front page of the Health section of the Post on Tuesday!
I feel a little bit vulnerable having given out so much personal information. If it wasn't for a cause about which I am so passionate, I would have passed. But it is CCSVI and I'm a team player!
On this two week anniversary I have warm fingers and toes, and improving balance. This is getting exciting!
What a difference a day makes.
She said that the story would most likely go out on Monday. Because it is the AP, it could show up anywhere in print and/or on the web. She said that I could look for it on the web in the afternoon. H. and I think that it would look lovely on the front page of the Health section of the Post on Tuesday!
I feel a little bit vulnerable having given out so much personal information. If it wasn't for a cause about which I am so passionate, I would have passed. But it is CCSVI and I'm a team player!
On this two week anniversary I have warm fingers and toes, and improving balance. This is getting exciting!
What a difference a day makes.
My jugs might be famous!
Have I gotten your attention, and not just you plastic surgeons out there?
Dr. T called earlier to ask me if I would sign a release allowing GU to share the amazing venogram pics of my internal JUGular veins with the ASSOCIATED PRESS. They are at GU today doing a story on CCSVI.
I've known that they were coming to do the story today for a while. When I saw Dr. T on Friday, I mentioned that, since I am still the only treated patient, they might want to show off my awesome "before" and "after" pics. I asked if they needed my permission. He assured me that they would. Well, I was happy to receive his call!
I'll do anything to spread the gospel! But I do draw the line at only showing my internal jugs. ;o)
WAIT! As I was writing this my good friend H. called to tell me that the reporter with photographer was there at GU for her ultrasound this morning! She had been warned in advance that they might be there while she was being tested, and asked if she would be willing to participate in the story.
The reporter interveiwed her and the awesome tech I mentioned in a previous post. The reporter told H. that this was going world wide, implying that this is BIG! Well, we know it is big, but we have just been waiting for the rest of the USA to catch on!
Then I just got a call from the media relations person at GU asking if I would speak to the reporter about my treatment. Gulp. Of course I will. Anything to spread the gospel, right?
*******************************************************************************
I have some other tentatively good news to share. I'm sticking with my three day rule (from my "tortoise" post: "I have decided on a method to determine if an improvement is real, or just wishful thinking. It is the same criteria that we used to determine if our babies were actually sleeping through the night: If it lasts for three days, it is real!")
For the past three days I have noticed that my balance is definitely better first thing in the morning. That is when it is often at it's worst. And as a lovely side effect, my walking is easier, too. It is amazing how much easier it is to walk when you are not wobbling from side to side!
It doesn't last all day. I was in a snit yesterday when I posted because I had come home from the grocery store a wobbling mess. It was frustrating after such a promising start! Thank goodness for my Knight.
Today started well, too. Then I had to straighten up for the cleaning crew, and I'm a little wiped out. It doesn't take much! I am resting and blogging, and hope that the balance returns today.
I'll post the AP story as soon as I get it. I don't know if I will get advanced notice, so if you see it first let me know!
Dr. T called earlier to ask me if I would sign a release allowing GU to share the amazing venogram pics of my internal JUGular veins with the ASSOCIATED PRESS. They are at GU today doing a story on CCSVI.
I've known that they were coming to do the story today for a while. When I saw Dr. T on Friday, I mentioned that, since I am still the only treated patient, they might want to show off my awesome "before" and "after" pics. I asked if they needed my permission. He assured me that they would. Well, I was happy to receive his call!
I'll do anything to spread the gospel! But I do draw the line at only showing my internal jugs. ;o)
WAIT! As I was writing this my good friend H. called to tell me that the reporter with photographer was there at GU for her ultrasound this morning! She had been warned in advance that they might be there while she was being tested, and asked if she would be willing to participate in the story.
The reporter interveiwed her and the awesome tech I mentioned in a previous post. The reporter told H. that this was going world wide, implying that this is BIG! Well, we know it is big, but we have just been waiting for the rest of the USA to catch on!
Then I just got a call from the media relations person at GU asking if I would speak to the reporter about my treatment. Gulp. Of course I will. Anything to spread the gospel, right?
*******************************************************************************
I have some other tentatively good news to share. I'm sticking with my three day rule (from my "tortoise" post: "I have decided on a method to determine if an improvement is real, or just wishful thinking. It is the same criteria that we used to determine if our babies were actually sleeping through the night: If it lasts for three days, it is real!")
For the past three days I have noticed that my balance is definitely better first thing in the morning. That is when it is often at it's worst. And as a lovely side effect, my walking is easier, too. It is amazing how much easier it is to walk when you are not wobbling from side to side!
It doesn't last all day. I was in a snit yesterday when I posted because I had come home from the grocery store a wobbling mess. It was frustrating after such a promising start! Thank goodness for my Knight.
Today started well, too. Then I had to straighten up for the cleaning crew, and I'm a little wiped out. It doesn't take much! I am resting and blogging, and hope that the balance returns today.
I'll post the AP story as soon as I get it. I don't know if I will get advanced notice, so if you see it first let me know!
Tuesday, March 16, 2010
Looking for travel agent to book a (legal) out-of-body vacation
If only it were possible! I just wish I didn't have to be here while all of these wonderful things are happening to me! The two bad days followed by two better days formula is frustrating. If I could just have it mapped out on a calendar in advance, then it might be better. But for now it is just a matter of waking up and testing the waters each new day.
I am still confident that my body will prove to me that, given the opportunity, it can do wonderful things. It did it before, when I was on Tysabri. So I have precedent and faith on my side. Unfortunately, I fight with that damn patience part every day!
I realize that I may sound like a brat. I have the gift of Liberation! Tomorrow is only my two week anniversary. Happy Liberation Day to me! Now Kwitcherbichen, woman!
Whew! Venting makes everything a little better. Now back to the productive stuff.
Here is a great interview with Dr. Zamboni from yesterday for anyone who is interested: Liberation Treatment Q and A
My favorite part:
"In preliminary data about the treatment, released at a Sept. 8 meeting of researchers interested in CCSVI, Zamboni and his team were able to show that in patients with the clinical form of relapsing-remitting MS -the most common - there was a drop in the number of active brain lesions in the patients that persisted up to 18 months after surgery. As well, in the two years before surgery, acute MS attacks were noted by 50 per cent of the recruited patients, but in the two years following surgery, 73 per cent of the patients had no more attacks. In all these patients, cognitive and motor activities assessed by an outcome measure called MSFC were significantly and persistently improved. The same finding was not made with patients with the progressive forms of the disease; in the latter, however, disease progression was stopped and the patients' quality of life improved." (emphasis added by ME)
In conclusion, I realize that I may sound like a nut case. Some of you may argue, with concrete evidence, that I really am. But I told you all at the outset that this blog is primarily a tool for me to track my experience. And right now my experience is that of being on a physical and emotional roller coaster. If you choose to ride this crazy train with me, that's all on you!
But just so you know, I really do appreciate your company.
p.s. I added some new info to my bio. Since I am hearing that more MSers are joining me, I know it will be helpful to have a little background.
I am still confident that my body will prove to me that, given the opportunity, it can do wonderful things. It did it before, when I was on Tysabri. So I have precedent and faith on my side. Unfortunately, I fight with that damn patience part every day!
I realize that I may sound like a brat. I have the gift of Liberation! Tomorrow is only my two week anniversary. Happy Liberation Day to me! Now Kwitcherbichen, woman!
Whew! Venting makes everything a little better. Now back to the productive stuff.
Here is a great interview with Dr. Zamboni from yesterday for anyone who is interested: Liberation Treatment Q and A
My favorite part:
"In preliminary data about the treatment, released at a Sept. 8 meeting of researchers interested in CCSVI, Zamboni and his team were able to show that in patients with the clinical form of relapsing-remitting MS -the most common - there was a drop in the number of active brain lesions in the patients that persisted up to 18 months after surgery. As well, in the two years before surgery, acute MS attacks were noted by 50 per cent of the recruited patients, but in the two years following surgery, 73 per cent of the patients had no more attacks. In all these patients, cognitive and motor activities assessed by an outcome measure called MSFC were significantly and persistently improved. The same finding was not made with patients with the progressive forms of the disease; in the latter, however, disease progression was stopped and the patients' quality of life improved." (emphasis added by ME)
In conclusion, I realize that I may sound like a nut case. Some of you may argue, with concrete evidence, that I really am. But I told you all at the outset that this blog is primarily a tool for me to track my experience. And right now my experience is that of being on a physical and emotional roller coaster. If you choose to ride this crazy train with me, that's all on you!
But just so you know, I really do appreciate your company.
p.s. I added some new info to my bio. Since I am hearing that more MSers are joining me, I know it will be helpful to have a little background.
Friday, March 12, 2010
Follow up ultrasound today- it's all good!
Well, the husband and I showed up promptly for my 8:30 follow up appointment with Dr. Neville this morning. After the nurse checked my vitals, etc, we waited a few minutes for the doc. Unfortunately the door opened to the nurse explaining that the doc had just been called down to an emergency surgery.
Hello! Don't these people know that I had an appointment? Clearly people in emergency surgery are very selfish individuals.
Anyway, we asked if I could have my ultrasound while we waited for him. This is at 9:00. I was told that I could have it done at 10:30 if I want to wait. I wanted to see those results, so we decided to hang out.
I needed to get a report from the neuro dept. which is just 3 floors up, so we decided to pass some of the time going up there. No sooner did I step off of the elevator than my own Dr. Tornatore walks by. He sees me and gives me a big hug! He had two residents with him, one of whom was with him last Wed when he came to see me right after the procedure.
They were just about to go on rounds, so he felt that he had a few minutes to see me. Holding up people waiting to be seen on rounds is not at all like pulling a doctor from an appointment just for emergency surgery. Dr. T has his priorities straight. ME! He led me into an exam room, and you guessed it, asked to see my feet. Hey, some habits are hard to break!
He was so pleased to see my white/pink warm feet! I was very proud to show them off. He was frustrated that he didn't have his video camera with him to document them. No worries! One of the fine residents handed Dr. T his own personal cell phone to take the video.
Aside: If this guy is anything like those Seattle Grace docs, I'm sure that right now he is passing his phone around to his other doctor friends at a bar right across the street from the hospital laughing at my funny looking feet. What an a-hole!
Dr. T. reiterated to me that veins take a long time to heal, so I need to be patient. Aah, that word again.
We went back to Vascular for my US. The wonderful and talented tech (and I'm not just saying that because I gave her this blog address today) who documented my reflux just weeks ago, had the honor of documenting my POST Liberation IJV flow. We were both excited to see no abnormal reflux! I'll get the full report next week, but it is all good. Yeah!!!!!!!!!!!!!!!!
We finally left GU at 11:30, only 3 hours after we arrived. In the car on the way home Dr. Neville's nurse called to ask if we were still in the hospital, because the doc was back. Sorry! I got the really good stuff from Dr. T. and the ultrasound tech. I didn't feel the need to see him face to face anymore. And I was certainly not schlepping back to that hospital again today!
There are no other patients currently scheduled for Liberation, but I am confident that will change VERY soon. Dr. T. met with Dr. N. on Friday to look over the stack of positive ultrasounds that have already been done. They are still trying to decide how best to proceed. It is just all happening so fast!
The most important thing (besides the obvious thing about me being Liberated) that came out of my procedure is that the vascular surgeons are now BELIEVERS. Perhaps they may not believe that opening the veins will improve MS, but that there is very likely a correlation between the reflux seen on US, and stenosis in the veins. That's a great start!
There is one other interesting thing to report. I am having an MRI next Friday to document the baseline amount of iron in my brain. If you recall from my earlier CCSVI lesson, iron builds up in the deoxygenated blood that backs up in the brain. Dr. Zamboni theorizes that the iron is the actual target of the immune attacks.
It will be interesting to see if opening my veins naturally lowers the iron levels in my brain. This is a fascinating new area that will be studied at the University of Buffalo in the near future. You'll hear more about this from me soon.
As for my symptom report, it is a mixed bag. I feel like each day with less fatigue, good balance and easier walking is followed by a bad day. I try to just roll with it, but it is frustrating. I am grateful to friends who are so good about gently reminding me of my own mantra of "patience, patience, patience."
Two steps forward, one step back. You would think that doing it on warm feet would be reward enough for now! I'm trying but I'm hungry for more. Note to self: see the damn mantra above!!!
I am exhausted as I am writing this, so excuse me if it is not my best work. It has been a long, but very exciting day!
Hello! Don't these people know that I had an appointment? Clearly people in emergency surgery are very selfish individuals.
Anyway, we asked if I could have my ultrasound while we waited for him. This is at 9:00. I was told that I could have it done at 10:30 if I want to wait. I wanted to see those results, so we decided to hang out.
I needed to get a report from the neuro dept. which is just 3 floors up, so we decided to pass some of the time going up there. No sooner did I step off of the elevator than my own Dr. Tornatore walks by. He sees me and gives me a big hug! He had two residents with him, one of whom was with him last Wed when he came to see me right after the procedure.
They were just about to go on rounds, so he felt that he had a few minutes to see me. Holding up people waiting to be seen on rounds is not at all like pulling a doctor from an appointment just for emergency surgery. Dr. T has his priorities straight. ME! He led me into an exam room, and you guessed it, asked to see my feet. Hey, some habits are hard to break!
He was so pleased to see my white/pink warm feet! I was very proud to show them off. He was frustrated that he didn't have his video camera with him to document them. No worries! One of the fine residents handed Dr. T his own personal cell phone to take the video.
Aside: If this guy is anything like those Seattle Grace docs, I'm sure that right now he is passing his phone around to his other doctor friends at a bar right across the street from the hospital laughing at my funny looking feet. What an a-hole!
Dr. T. reiterated to me that veins take a long time to heal, so I need to be patient. Aah, that word again.
We went back to Vascular for my US. The wonderful and talented tech (and I'm not just saying that because I gave her this blog address today) who documented my reflux just weeks ago, had the honor of documenting my POST Liberation IJV flow. We were both excited to see no abnormal reflux! I'll get the full report next week, but it is all good. Yeah!!!!!!!!!!!!!!!!
We finally left GU at 11:30, only 3 hours after we arrived. In the car on the way home Dr. Neville's nurse called to ask if we were still in the hospital, because the doc was back. Sorry! I got the really good stuff from Dr. T. and the ultrasound tech. I didn't feel the need to see him face to face anymore. And I was certainly not schlepping back to that hospital again today!
There are no other patients currently scheduled for Liberation, but I am confident that will change VERY soon. Dr. T. met with Dr. N. on Friday to look over the stack of positive ultrasounds that have already been done. They are still trying to decide how best to proceed. It is just all happening so fast!
The most important thing (besides the obvious thing about me being Liberated) that came out of my procedure is that the vascular surgeons are now BELIEVERS. Perhaps they may not believe that opening the veins will improve MS, but that there is very likely a correlation between the reflux seen on US, and stenosis in the veins. That's a great start!
There is one other interesting thing to report. I am having an MRI next Friday to document the baseline amount of iron in my brain. If you recall from my earlier CCSVI lesson, iron builds up in the deoxygenated blood that backs up in the brain. Dr. Zamboni theorizes that the iron is the actual target of the immune attacks.
It will be interesting to see if opening my veins naturally lowers the iron levels in my brain. This is a fascinating new area that will be studied at the University of Buffalo in the near future. You'll hear more about this from me soon.
As for my symptom report, it is a mixed bag. I feel like each day with less fatigue, good balance and easier walking is followed by a bad day. I try to just roll with it, but it is frustrating. I am grateful to friends who are so good about gently reminding me of my own mantra of "patience, patience, patience."
Two steps forward, one step back. You would think that doing it on warm feet would be reward enough for now! I'm trying but I'm hungry for more. Note to self: see the damn mantra above!!!
I am exhausted as I am writing this, so excuse me if it is not my best work. It has been a long, but very exciting day!
Tuesday, March 9, 2010
It's the little things...
After my successful morning of errands yesterday, I had a rough afternoon. My balance was not so hot. Lots of wall-walking for me. Patience, patience.
So this morning I took a shower. When I got out I noticed that my pre-Liberation purple right foot was only dark pink. I wondered if the color was due to the heat, or standing for a nice long shower, or both.
At dinner time I STOOD for a good 15-20 minutes chopping veggies and doing other meal prep. This is important to note because I usually must sit to do these tasks. I mentioned it to my husband who, of course, was well aware of it without my needing to point it out.
We sat for dinner and I pulled off my socks and shoes. My feet were both normal color! So this very unscientific experiment tells me that it is heat + standing that makes my feet colorful. Standing alone doesn't do it.
Of course, it would have been smart if I had tried this little test pre-Liberation. If it was always like this, then my results are meaningless. I'll have to mention it to my neuro. He is a little obsessed with purple feet. No, not like a fetish, you sickos! He really believes that they are a great visual indicator of CCSVI. At least that's what he tells me. ;o)
So lets just focus on the fact that I was able to stand for so long to prepare dinner!
My glass is always half-full, people. Maybe one day soon I will actually be able to fill it with wine! For years now my mantra has been, "I can drink or I can walk. But I can't do both."
O.K. that's all the minutiae I have for today. Tomorrow is my one week anniversary!
So this morning I took a shower. When I got out I noticed that my pre-Liberation purple right foot was only dark pink. I wondered if the color was due to the heat, or standing for a nice long shower, or both.
At dinner time I STOOD for a good 15-20 minutes chopping veggies and doing other meal prep. This is important to note because I usually must sit to do these tasks. I mentioned it to my husband who, of course, was well aware of it without my needing to point it out.
We sat for dinner and I pulled off my socks and shoes. My feet were both normal color! So this very unscientific experiment tells me that it is heat + standing that makes my feet colorful. Standing alone doesn't do it.
Of course, it would have been smart if I had tried this little test pre-Liberation. If it was always like this, then my results are meaningless. I'll have to mention it to my neuro. He is a little obsessed with purple feet. No, not like a fetish, you sickos! He really believes that they are a great visual indicator of CCSVI. At least that's what he tells me. ;o)
So lets just focus on the fact that I was able to stand for so long to prepare dinner!
My glass is always half-full, people. Maybe one day soon I will actually be able to fill it with wine! For years now my mantra has been, "I can drink or I can walk. But I can't do both."
O.K. that's all the minutiae I have for today. Tomorrow is my one week anniversary!
Monday, March 8, 2010
Excruciating details- the kind I wish others had posted for me to read!
It's not much, and it doesn't fit my three day rule but here goes:
I partied (and by that I mean I sat and watched kids dance) on Saturday night from 7-12. So fun! But soooo tired on Sunday. Typical for me, so no change.
Today is my grocery day. Usually I start off strong in the produce aisle, then barely make it home before collapsing. My good husband is here to unload for me. Yeah for home offices!
Well on this day I first stopped at the pharmacy, then filled up at the gas station, THEN went to the grocery. What's the worst that could happen? If I had to give up halfway through, so what.
In fact I made it all the way through. Tired, but still walking. Got the groceries loaded and headed home. Without even a call to let him know to expect me, my knight in shining armor was waiting by the garage door to help me! Love that guy!
He trucked the stuff in to the kitchen as usual, but I was actually able to help unload the bags today! Then I crashed and graciously allowed him to make me lunch. Thank you, kind sir.
Is this a sign? I DON'T KNOW. I'm only sharing this for my own documentation, and to satisfy the insatiable curiosity of those of you who want so badly to call, but are showing great restraint. I am very proud of you! Except you, Aunt G. But you get a pass!
Thank you all for caring!
I partied (and by that I mean I sat and watched kids dance) on Saturday night from 7-12. So fun! But soooo tired on Sunday. Typical for me, so no change.
Today is my grocery day. Usually I start off strong in the produce aisle, then barely make it home before collapsing. My good husband is here to unload for me. Yeah for home offices!
Well on this day I first stopped at the pharmacy, then filled up at the gas station, THEN went to the grocery. What's the worst that could happen? If I had to give up halfway through, so what.
In fact I made it all the way through. Tired, but still walking. Got the groceries loaded and headed home. Without even a call to let him know to expect me, my knight in shining armor was waiting by the garage door to help me! Love that guy!
He trucked the stuff in to the kitchen as usual, but I was actually able to help unload the bags today! Then I crashed and graciously allowed him to make me lunch. Thank you, kind sir.
Is this a sign? I DON'T KNOW. I'm only sharing this for my own documentation, and to satisfy the insatiable curiosity of those of you who want so badly to call, but are showing great restraint. I am very proud of you! Except you, Aunt G. But you get a pass!
Thank you all for caring!
Sunday, March 7, 2010
Another CCSVI resource
I forgot to add an important resource to the original CCSVI post. Anyone on Facebook should consider becoming a fan of "CCSVI in MS".
It has some distracting chatter, but more importantly, posts the most up to date info as it becomes available.
It is run by Joan Beal. She is the woman who is responsible for getting the first CCSVI treatment, based on Zamboni's research, in the US for her husband at Stanford .
It has some distracting chatter, but more importantly, posts the most up to date info as it becomes available.
It is run by Joan Beal. She is the woman who is responsible for getting the first CCSVI treatment, based on Zamboni's research, in the US for her husband at Stanford .
Friday, March 5, 2010
Bet it all on the tortoise!
Since I first learned about CCSVI in late November, I have been in a race to get to Liberation as fast as my fingers could type and dial. It is remarkable that all of my stars lined up in only three short, but very intense, months.
So now it is done. I have been treated with literally no pain or even much discomfort. I did it! So now what?
My warmer feet and I have to patiently wait for my body to get used to these exciting changes. Patiently wait. I AM JUST REALIZING THAT IT IS VERY HARD TO BE PATIENT!
Things may not start improving tomorrow, or even next week. But they will- eventually. I am sure of it. Those of you who know me can attest to the fact that I am nothing if not pathologically optimistic!
I have decided on a method to determine if an improvement is real, or just wishful thinking. It is the same criteria that we used to determine if our babies were actually sleeping through the night: If it lasts for three days, it is real!
So as you all sit on the sidelines watching me head slooooowly towards the finish line, wherever that may be, please join me in my patience.
I am confident that we will all be handsomely rewarded in the end!
So now it is done. I have been treated with literally no pain or even much discomfort. I did it! So now what?
My warmer feet and I have to patiently wait for my body to get used to these exciting changes. Patiently wait. I AM JUST REALIZING THAT IT IS VERY HARD TO BE PATIENT!
Things may not start improving tomorrow, or even next week. But they will- eventually. I am sure of it. Those of you who know me can attest to the fact that I am nothing if not pathologically optimistic!
I have decided on a method to determine if an improvement is real, or just wishful thinking. It is the same criteria that we used to determine if our babies were actually sleeping through the night: If it lasts for three days, it is real!
So as you all sit on the sidelines watching me head slooooowly towards the finish line, wherever that may be, please join me in my patience.
I am confident that we will all be handsomely rewarded in the end!
Thursday, March 4, 2010
Success 3/3/10!!!!!!!!!!!!
Where do I begin? Yesterday I was the first person to have Dr. Zamboni’s Liberation Treatment performed at Georgetown University Hospital.
We (my wonderful husband and I) arrived at 6:30am. Went up to the cardiac cath lab holding room, and had to explain to the wonderful nurses exactly why we were there. I don’t think that they believed me when I told them that we were going to be making history that day. I guess they hear that a lot, or just thought I was a crazy lady.
Then Dr. Neville called them in for a meeting. They came back all excited! That’s right, ladies. I don’t lie!
They wheeled me into the cath lab and I met Dr. Laredo. He is another vascular surgeon at G-town who was assisting Dr. Neville. In addition to the techs and nurses, there was also an Interventional Radiologist from NIH there to observe. Interesting, huh?
The nurses gave me Fentanyl and Versed to make me a little loopy (yeah, yeah, I know you all think I’m already a little loopy, but they don’t know me that well!). Dr. N. numbed the insertion site in my groin, and we were off! It was hard to pay attention, cause the drugs wanted me to just close my eyes and lay there. But I wanted to hear everything that was going on!
At the point when he first saw the stenosis in my right internal jugular he said, “I’m excited! And I don’t get excited.”
Someone else in the room said, “Yeah, he doesn’t get excited.”
To which I (still loopy, but, being 40 and all, felt the need to acknowledge my ability to excite a man) replied, “I’m flattered!”
The right IJV was 95% stenosed (narrowed), and I definitely felt the balloon being inflated on that side. It didn’t hurt, but it was an odd sensation.
Here's the "before" picture of the right side. It's supposed to be a thick black line all the way from the top to the bottom, but notice that about 2/3 of the way down, it just stops. That's where the stenosis is! The greyish area below is empty vein where the blood/dye should be flowing.
Here's the "after" picture, just as the blood/dye was beginning to flow through the open vein. So cool, huh?!?
The left side was 75% stenosed, and I didn’t feel the ballooning at all.
He looked at the azygos vein and he saw a small amount of blood/dye reflux. He looked from many different angles, but couldn’t find any obvious causes, so he left it alone. Then they were done!
I went back to the holding room, and within 15 minutes my neurologist was there with a big grin on his face. Dr. N. had called him right after it was done and gave him the glowing report. He was practically giddy!
I had to lay flat for the first hour so that the insertion site could clot properly. The next hour I was at 30 degrees, then finally I was able to sit all the way up. Most importantly I was able to go do what a girl’s got to do to get rid of all of that damn saline they had been pumping into me!
My brother showed up with enough yummy food from Balducci’s to feed us and all of the nurses, too. Thanks, bro!
We lounged around the holding room until about 5:00 waiting to be moved to a regular room. At that time it was determined that there were still no beds available for me, so they sent us home!!!!!
We signed all the of the papers, and high-tailed it home, arriving a few minutes before the kids got home from dinner out with my mom. Thanks, Mom! Lots of hugs and kisses, and then the exhaustion set in.
I am officially on Plavix for the next two years, or until the doctors decide to stop. We’re making history here, people! Things are going to change as more info comes out.
I have a follow up appointment with Dr. Neville next Friday 3/12. I will also have an ultrasound to confirm that my blood is only flowing DOWN my veins, not up.
So... Everything went perfectly yesterday. I could not have scripted it better.
The only immediate improvement that I have noticed is warm hands and feet! This may not seem like that big a deal to you regular people, but for a girl who has spent the last million years with constantly cold extremities, this is HUGE!
Other improvements that may show up soon include: less fatigue, less sensitivity to heat, and less "cognitive fog". Or maybe not. Other improvements may take longer. We will just have to wait and see. I am a patient woman. It took me 20 years to get here, and I am willing to work for the next 20 to get back whatever I can!
We (my wonderful husband and I) arrived at 6:30am. Went up to the cardiac cath lab holding room, and had to explain to the wonderful nurses exactly why we were there. I don’t think that they believed me when I told them that we were going to be making history that day. I guess they hear that a lot, or just thought I was a crazy lady.
Then Dr. Neville called them in for a meeting. They came back all excited! That’s right, ladies. I don’t lie!
They wheeled me into the cath lab and I met Dr. Laredo. He is another vascular surgeon at G-town who was assisting Dr. Neville. In addition to the techs and nurses, there was also an Interventional Radiologist from NIH there to observe. Interesting, huh?
The nurses gave me Fentanyl and Versed to make me a little loopy (yeah, yeah, I know you all think I’m already a little loopy, but they don’t know me that well!). Dr. N. numbed the insertion site in my groin, and we were off! It was hard to pay attention, cause the drugs wanted me to just close my eyes and lay there. But I wanted to hear everything that was going on!
At the point when he first saw the stenosis in my right internal jugular he said, “I’m excited! And I don’t get excited.”
Someone else in the room said, “Yeah, he doesn’t get excited.”
To which I (still loopy, but, being 40 and all, felt the need to acknowledge my ability to excite a man) replied, “I’m flattered!”
The right IJV was 95% stenosed (narrowed), and I definitely felt the balloon being inflated on that side. It didn’t hurt, but it was an odd sensation.
Here's the "before" picture of the right side. It's supposed to be a thick black line all the way from the top to the bottom, but notice that about 2/3 of the way down, it just stops. That's where the stenosis is! The greyish area below is empty vein where the blood/dye should be flowing.
Here's the "after" picture, just as the blood/dye was beginning to flow through the open vein. So cool, huh?!?
The left side was 75% stenosed, and I didn’t feel the ballooning at all.
He looked at the azygos vein and he saw a small amount of blood/dye reflux. He looked from many different angles, but couldn’t find any obvious causes, so he left it alone. Then they were done!
I went back to the holding room, and within 15 minutes my neurologist was there with a big grin on his face. Dr. N. had called him right after it was done and gave him the glowing report. He was practically giddy!
I had to lay flat for the first hour so that the insertion site could clot properly. The next hour I was at 30 degrees, then finally I was able to sit all the way up. Most importantly I was able to go do what a girl’s got to do to get rid of all of that damn saline they had been pumping into me!
My brother showed up with enough yummy food from Balducci’s to feed us and all of the nurses, too. Thanks, bro!
We lounged around the holding room until about 5:00 waiting to be moved to a regular room. At that time it was determined that there were still no beds available for me, so they sent us home!!!!!
We signed all the of the papers, and high-tailed it home, arriving a few minutes before the kids got home from dinner out with my mom. Thanks, Mom! Lots of hugs and kisses, and then the exhaustion set in.
I am officially on Plavix for the next two years, or until the doctors decide to stop. We’re making history here, people! Things are going to change as more info comes out.
I have a follow up appointment with Dr. Neville next Friday 3/12. I will also have an ultrasound to confirm that my blood is only flowing DOWN my veins, not up.
So... Everything went perfectly yesterday. I could not have scripted it better.
The only immediate improvement that I have noticed is warm hands and feet! This may not seem like that big a deal to you regular people, but for a girl who has spent the last million years with constantly cold extremities, this is HUGE!
Other improvements that may show up soon include: less fatigue, less sensitivity to heat, and less "cognitive fog". Or maybe not. Other improvements may take longer. We will just have to wait and see. I am a patient woman. It took me 20 years to get here, and I am willing to work for the next 20 to get back whatever I can!
Monday, March 1, 2010
Pre-op doctor visits 2/26/10
We met with the surgeon, Dr. Neville. He is a straight shooter, no b.s. about him. He told us that he is going to go in and look, and balloon anything he sees as a problem. He is going to be conservative which is fine. I certainly don't want to be the first patient he sees for this if he was planning on being too aggressive! We are not going to use stents at this time. That is somewhat of a relief because stenting veins is more risky, although possibly necessary, than stenting arteries. In time we will know much more, as other doctors are doing this procedure with stents and will hopefully be publishing their findings.
Then I had lots of blood taken in preparation for the procedure. There was a debate if it was actually necessary for me to spend the night at the hospital. He decided that since I was the first, it couldn't hurt. He said that for future patients he probably would not keep them overnight. Again, not the Ritz, but one night never hurt anyone.
We ended the day on a high note in the office of Dr. Tornatore, my neurologist. To say that I adore this man is an understatement. He is brilliant, open-minded, and spends an hour at a time with us at every appointment. What's not to love?
He is excited about Wednesday, and is going to try to work his schedule around it so that he can be there! We decided that I would not go on any MS drugs post-op and see what this is going to do for me.
Based on recent presentations of other docs who have done this procedure (if you care to, see here), the most immediate improvements in most patients are: warmer fingers and toes (yeah!), less fatigue, less "brain fog", and better heat tolerance. Walking and balance may take longer to show improvement, or not. We will just have to wait and see! From reports of other patients, I am prepared to take two steps forward, and one step back. There is a lot of readjustment my body will be going through as it gets used to my new normal.
It turns out that I did not get to be the first one to have this just based on good timing. Dr. T actually hand picked me! He went on about me being intelligent, blah, blah. Regardless, I feel even luckier knowing that he thinks that I am a great first candidate.
[I am editing the above statement. Although Dr. T told me that he had picked me to go first, I now realize how silly that is. I got the scrip for the venogram from Erica (my nurse) before she even knew that she had my US results on her desk. He probably meant that he was pleased to see that I was first because I am a good candidate, what with my purple feet (an indication of poor blood circulation and a common symptom in many of us MSers, and high ultrasound reflux numbers and all!]
Bottom line: I am confident that I am in very capable hands. I am excited for this procedure. And I can't wait to come out the other end and see what happens. The most important outcome will be stopping this damn disease from progressing. Of course, that is the one outcome that will take the longest to know about. Any actual improvements of my symptoms that I get will be delicious icing. And you know how I like sweets!
Then I had lots of blood taken in preparation for the procedure. There was a debate if it was actually necessary for me to spend the night at the hospital. He decided that since I was the first, it couldn't hurt. He said that for future patients he probably would not keep them overnight. Again, not the Ritz, but one night never hurt anyone.
We ended the day on a high note in the office of Dr. Tornatore, my neurologist. To say that I adore this man is an understatement. He is brilliant, open-minded, and spends an hour at a time with us at every appointment. What's not to love?
He is excited about Wednesday, and is going to try to work his schedule around it so that he can be there! We decided that I would not go on any MS drugs post-op and see what this is going to do for me.
Based on recent presentations of other docs who have done this procedure (if you care to, see here), the most immediate improvements in most patients are: warmer fingers and toes (yeah!), less fatigue, less "brain fog", and better heat tolerance. Walking and balance may take longer to show improvement, or not. We will just have to wait and see! From reports of other patients, I am prepared to take two steps forward, and one step back. There is a lot of readjustment my body will be going through as it gets used to my new normal.
It turns out that I did not get to be the first one to have this just based on good timing. Dr. T actually hand picked me! He went on about me being intelligent, blah, blah. Regardless, I feel even luckier knowing that he thinks that I am a great first candidate.
[I am editing the above statement. Although Dr. T told me that he had picked me to go first, I now realize how silly that is. I got the scrip for the venogram from Erica (my nurse) before she even knew that she had my US results on her desk. He probably meant that he was pleased to see that I was first because I am a good candidate, what with my purple feet (an indication of poor blood circulation and a common symptom in many of us MSers, and high ultrasound reflux numbers and all!]
Bottom line: I am confident that I am in very capable hands. I am excited for this procedure. And I can't wait to come out the other end and see what happens. The most important outcome will be stopping this damn disease from progressing. Of course, that is the one outcome that will take the longest to know about. Any actual improvements of my symptoms that I get will be delicious icing. And you know how I like sweets!
Testing & Treatment date set!
I had a Doppler ultrasound on Feb. 1st that showed significant reflux in both of my internal jugular veins.
When I made the appointment, I asked, and was assured, that they would be using a transcranial Doppler.
Well guess what? The vascular dept does not have transcranial ultrasound, so they just looked at the short segment of veins in the neck. I don't know what would have happened if I had come up negative. I am glad that I did not know this before I went, or I would have been a mess. My two friends who were tested the same week each had reflux in one IJV. The tech told me that she had tested four people the week before and three came back positive. What about the poor fourth person?? I hope that Georgetown has a plan to further test the initialy negative patients.
I have appointments with both my neuro and the vascular surgeon on Friday, Feb. 26 to go over everything. I will report all of the juicy details after the meetings.
My procedure is scheduled for Wednesday, March 3rd!
When I made the appointment, I asked, and was assured, that they would be using a transcranial Doppler.
Well guess what? The vascular dept does not have transcranial ultrasound, so they just looked at the short segment of veins in the neck. I don't know what would have happened if I had come up negative. I am glad that I did not know this before I went, or I would have been a mess. My two friends who were tested the same week each had reflux in one IJV. The tech told me that she had tested four people the week before and three came back positive. What about the poor fourth person?? I hope that Georgetown has a plan to further test the initialy negative patients.
I have appointments with both my neuro and the vascular surgeon on Friday, Feb. 26 to go over everything. I will report all of the juicy details after the meetings.
My procedure is scheduled for Wednesday, March 3rd!
CCSVI
Chronic cerebrospinal venous insufficiency. Beautiful sounding, isn't it? It is music to MY ears!
I will try not to go into excruciating details, but here it is in a nutshell: A vascular surgeon in Italy named Paolo Zamboni's wife was diagnosed with MS. He set out to learn everything he could about this disease. He discovered a rich and long history of research that links MS to some sort of vascular problems in the veins that drain blood from the brain. It has been difficult to study these theories up until recently because we lacked the diagnostic tools to see inside people's internal jugular and azygous veins without them being dead first.
Zamboni used Doppler ultrasound on real live people to see that 90-100% of clinically diagnosed MSers had at least two stenoses (narrowing) or malformations of the internal jugulars and/or azygous veins that drain blood from the brain. The deoxygenated blood pools in the brain and toxic iron forms. That's baaaaad.
He then decided to have his team (ironically, he has a neurological condition himself that prevents him from being able to use his hands effectively) use balloon angioplasty to open the veins and restore normal flow out of the brain. He called it the Liberation Treatment. It has only been three years, but in that time none of his patients have had disease progression, and many have had mild to significant improvements in their symptoms.
Watch him here: The Liberation Treatment: A whole new approach to MS
Here is a great summary of the evolution of CCSVI from Ashton Embry of Direct-MS: CCSVI and Multiple Sclerosis: Integrating New Data to help guide actions
Another excellent site: ms-mri.com
A smart and tenacious woman in California named Joan Beal found out about Zamboni's work and set out to find a doc in the US to treat her husband who has MS. She was able to convince Dr. Michael Dake at Stanford University to treat him. Dr. Dake then went on to Liberate about 50 more people. The difference is that he used stents to hold open the veins. Dr. Zamboni had to reballoon about 47% of his patients because they restenosed.
Another doctor, Marian Simka, in Poland is also doing a large number of these procedure. Now I am seeing reports of a doctor in Germany, India, and our own NY are getting into the act. THE place to follow all things CCSVI is a forum you can access here.
The University of Buffalo is studying the testing protocol for CCSVI. Their initial report on the first 500 subjects is here: Buffalo study. The full report wil be out in April.
And now my very own Georgetown has decided to get into the act! I am so proud that my neurologist, Dr. Carlo Tornatore, is so brilliant to see just how exciting this is for his MS patients. He is working with the Vascular department to make it all happen.
Which leads me to my next post...
I will try not to go into excruciating details, but here it is in a nutshell: A vascular surgeon in Italy named Paolo Zamboni's wife was diagnosed with MS. He set out to learn everything he could about this disease. He discovered a rich and long history of research that links MS to some sort of vascular problems in the veins that drain blood from the brain. It has been difficult to study these theories up until recently because we lacked the diagnostic tools to see inside people's internal jugular and azygous veins without them being dead first.
Zamboni used Doppler ultrasound on real live people to see that 90-100% of clinically diagnosed MSers had at least two stenoses (narrowing) or malformations of the internal jugulars and/or azygous veins that drain blood from the brain. The deoxygenated blood pools in the brain and toxic iron forms. That's baaaaad.
He then decided to have his team (ironically, he has a neurological condition himself that prevents him from being able to use his hands effectively) use balloon angioplasty to open the veins and restore normal flow out of the brain. He called it the Liberation Treatment. It has only been three years, but in that time none of his patients have had disease progression, and many have had mild to significant improvements in their symptoms.
Watch him here: The Liberation Treatment: A whole new approach to MS
Here is a great summary of the evolution of CCSVI from Ashton Embry of Direct-MS: CCSVI and Multiple Sclerosis: Integrating New Data to help guide actions
Another excellent site: ms-mri.com
A smart and tenacious woman in California named Joan Beal found out about Zamboni's work and set out to find a doc in the US to treat her husband who has MS. She was able to convince Dr. Michael Dake at Stanford University to treat him. Dr. Dake then went on to Liberate about 50 more people. The difference is that he used stents to hold open the veins. Dr. Zamboni had to reballoon about 47% of his patients because they restenosed.
Another doctor, Marian Simka, in Poland is also doing a large number of these procedure. Now I am seeing reports of a doctor in Germany, India, and our own NY are getting into the act. THE place to follow all things CCSVI is a forum you can access here.
The University of Buffalo is studying the testing protocol for CCSVI. Their initial report on the first 500 subjects is here: Buffalo study. The full report wil be out in April.
And now my very own Georgetown has decided to get into the act! I am so proud that my neurologist, Dr. Carlo Tornatore, is so brilliant to see just how exciting this is for his MS patients. He is working with the Vascular department to make it all happen.
Which leads me to my next post...
To my fellow MSers:
By whatever route you found your way here, welcome. I realize that by having this blog to write, I am a very lucky woman. I have been given a rare opportunity to be tested and treated for a condition that many of us believe may be the key to stopping our MS, and hopefully improving our symptoms.
It makes me sad to say that, for now, Georgetown is not a viable route for most people to pursue in hopes of having themselves tested and treated.
I am one of possibly only a handful of people being treated for now. Then the doctors are going to analyze their results. If they are positive (which I optimistically believe they will be) they may begin offering the program to many of the other 2000(!) current patients in the MS Center at GU. Perhaps they will decide to do a full-blown clinical trial. I don't know, and I promise they don't know where this is going yet either.
If at some point I find out that they are opening up their program to others, I promise to post it here.
Until then I welcome you to follow me on my journey- triumphs, frustrations, and all.
It makes me sad to say that, for now, Georgetown is not a viable route for most people to pursue in hopes of having themselves tested and treated.
I am one of possibly only a handful of people being treated for now. Then the doctors are going to analyze their results. If they are positive (which I optimistically believe they will be) they may begin offering the program to many of the other 2000(!) current patients in the MS Center at GU. Perhaps they will decide to do a full-blown clinical trial. I don't know, and I promise they don't know where this is going yet either.
If at some point I find out that they are opening up their program to others, I promise to post it here.
Until then I welcome you to follow me on my journey- triumphs, frustrations, and all.
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