3rd angio done Dec. 2nd. Let's hope it lasts!

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3rd angio done Dec. 2nd. Let's hope it lasts!

Postby lucky125 » Sat Dec 25, 2010 7:49 am

http://www.myliberationadventure.blogspot.com

"It has been far too long since my last post. Please be assured that I have not lost any interest or enthusiasm in sharing my journey. This may sound crazy, but I have been reluctant to share my latest news because I feel embarassingly fortunate. Let me explain.

When I saw Dr. Haskal on October 26th, we determined that I was restenosing. He told me that he hoped his study would be approved in the next couple of weeks, and that he could retreat me before Thanksgiving. You see, I had a big family event scheduled for December 11th, and I desperately wanted to be feeling as well as I did after he last treated me in July.

Well, Thanksgiving came and went. I did steroids the three days before Thanksgiving because his study was still mired in IRB-hell. I was in touch with Dr. H's wonderful staff on a regular basis, but it wasn't looking good. Then against all odds I got a call from the doctor himself on Tuesday, November 30th. He had spoken with the IRB about getting an exemption to retreat me. I don't know exactly why they agreed to let him treat me, but they did!

He said I should call his scheduler to get in THAT WEEK! It was actually my husband who took the call. He called me in the car to tell me the good news and I burst into tears. I am not a terribly spiritual person, but at that moment I felt sure that my mom had somehow made the stars line up for me. Thanks, Mom.

So I had my second procedure with Dr. Haskal two days later on December 2nd. Here are the fascinating details:

Both of my jugulars had restenosed to some degree, and he used bigger balloons to treat them. I am the first person on whom he has done a second treatment. In the procedure room, he had my images from July on one screen, and live pics on another! So cool. The right jugular looked fine on first inspection. He then looked at the left side and saw obvious narrowing at the valve where the jugular meets the subclavian. He ballooned it many times, and this time it hurt enough that I asked for some pain medication. He gave me a little Fentanyl to take the edge off. Not sure if I got enough to really help, but I've given birth two times, so what's a little pain for so much gain?


He noted that parts of the left vein behaved as if they were still patent from the last procedure, while others needed some more work. He went back to the right and inflated the balloon. He was surprised that although the vein looked wide open, it was not. We were looking at a 2D image. While the width looked normal, either the front or back part of the vein had restenosed. We could tell because as the balloon inflated, the telltale "waist" showed up. The oval shaped balloon looked more like an 8 than a 0. He ballooned the heck out if it. It was interesting to him that the stenosis was not uniform all the way around a particular section. Parts of the vein had held, while others had narrowed again. He learned fascinating information that day that he could not have known before. My veins were teaching school!

He checked and ballooned the azygos, although it was still unremarkable. Let's face it, you can't go there and NOT balloon it just for good measure.

Then he was done! I laid flat for another hour and a half, sat up a little, had a turkey sandwich, and we came home.

So??? Well, as it was with the last two treatments, I immediately had warm light pink feet. I took it easy on Friday, and started seeing other awesome improvements over the next several days. I was able to stand for many minutes at a time. I could march in place with my knees rising and being able to hold them at 90 degrees for over 10 seconds. Once again my foot drop magically disappeared! I can now walk so much faster since I don't have to worry that with each step I will land on my face.

The cane that I had become dependent upon in the house again kept getting left all over the place. I would walk out of a room without it and not realize what I had done. Only a few days after the procedure, I stopped using a cane in the house entirely. Crazy!

On the Tuesday that I got the call from Haskal I was at Nordstrom with a friend looking for a dress to wear to our special event. I drove to the mall, then she pulled my wheelchair out of the back of my car. I couldn't walk through the store to get to the dress department that day. Five days after angioplasty I went back by myself, with just a cane, to pick up pants that I had had altered. I also stopped off in the shoe department to buy some cute flats. And I continue to get stronger and healthier each day!

The event on December 11th was my oldest daughter's Bat Mitzvah. For us it was an all day event beginning with pictures at 9:00am. Her service in the sanctuary of the temple began at 10:30. Then we had a luncheon for family and friends that lasted until 3:00. My legs were tired, but I had none of that nasty fatigue. We came home and rested for a few hours before hosting a second party with a rocking DJ.


The traditional Jewish dance of celebration is called the hora, in which people hold hands and dance around in a circle. The guests of honor end up being raised on chairs high in the air. This was the part of her celebration in which I so desperately wanted to participate. Without my treatment I might not have even been able to stand in the middle of the dance floor with my family. I would have sat, and clapped, and smiled from ear to ear. But on that night I held hands with my husband and two beautiful girls and we "danced." By dance I mean that we held hands and walked in a slow circle together. Our loved ones danced in a circle around us. Then our strong friends lifted us each on a chair to the roar of the crowd.

My daughter was the star of the day. But because of Dr. Haskal I got to dance with her to celebrate. The significance of that is permanently seared on my brain. I did it!

My plan was to wait to share this wonderful news for a time when I could also announce that Dr. Haskal's study had been approved. I have every confidence that it will happen. I just felt that I couldn't wait any longer to update my status. So much has happened in the past three weeks! I begin PT at the end of the month, and I look forward to rebuilding, again, the muscles that have deteriorated over the past several months.

I hope that the study gets approved very, very soon. Enough IRB foot-dragging already! Dr. Haskal and his team are ready to hit the ground running when that happens. While he and so many patients are waiting, many people are finding other doctors who are learning about, and being trained to treat CCSVI. 2011 is going to see an explosion of doctors who are ready and willing to treat us. The key factor is finding one who is experienced, or who at least has trained with an experienced doctor.


In the meantime Dr. Haskal and his colleagues are working to write protocols for all doctors to follow. Only with consistency can we hope to standardize this treatment. Eventually all patients will have the confidence that they are being treated using the best techniques available.

I am no longer naive enough to believe that I have seen my last angioplasty. The best I can hope for is an even longer run this time than the last. I also hope that our brilliant, dedicated new group of CCSVI specialists can quickly figure out how to keep our veins patent, and our valves open forever.

In 2010 I have met more wonderful people because of CCSVI, and had more life-altering experiences than I could have ever predicted way back in 2009. I am physically, mentally, and emotionally stronger as a result.

I am honored to be a member of an elite group of people who began as individual MS patients, and who have morphed into a fierce, passionate, worldwide force. We are demanding to be heard and liberated from a dangerous health condition called CCSVI.

To all of my family and friends, old and new, I wish you a joyous holiday season and a very, very happy and healthy 2011!"
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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Postby dlb » Sat Dec 25, 2010 8:40 am

Lucky125,

What a wonderful & amazing story. I am so happy for you & I'm so happy that you were able to participate in your daughter's dance, instead of having to sit on the side - very touching story!
I hope you get some terrific, long lasting results.
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Postby Cece » Sat Dec 25, 2010 8:59 am

Lucky125, congrats!!! This was all beautifully said. I am happy for your improvements and happy that we have a doctor like Dr. Haskal among the many fine doctors on our side.
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Re: 3rd angio done Dec. 2nd. Let's hope it lasts!

Postby pairOdime » Sat Dec 25, 2010 10:36 am

lucky125 wrote:He noted that parts of the left vein behaved as if they were still patent from the last procedure, while others needed some more work. He went back to the right and inflated the balloon. He was surprised that although the vein looked wide open, it was not. We were looking at a 2D image. While the width looked normal, either the front or back part of the vein had restenosed. We could tell because as the balloon inflated, the telltale "waist" showed up. The oval shaped balloon looked more like an 8 than a 0. He ballooned the heck out if it. It was interesting to him that the stenosis was not uniform all the way around a particular section. Parts of the vein had held, while others had narrowed again. He learned fascinating information that day that he could not have known before. My veins were teaching school!


Great news lucky125...the noting of waisting in the IJVs has provided info by which to improve treatment. Dr. H has been waiting for months now for IRB approval. The larger balloons and IJV waisting issue will be a hot topic at ISET in JAN. Again, congratulations on your Tx outcome.
It's a paradigm shift
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Postby vivavie » Sat Dec 25, 2010 12:25 pm

I am very happy for you! I am also glad you have such a good relation with you Dr. I find that it is key.

I am worry of some dr that get people in and out in 30-45 minutes without much implications... one month Doppler, 3 months follow up with very strange restrictions concerning the 2nd procedure: if no improvements than no point going back in, etc. What about having missed something!? Some are also closed to new informations circulating, Dr Sclafani reported some IR compare Dr Sinan technics Braille! Personnally I don't care if it works!!!

Dr H seems very open to the evolution of CCSVI procedure, you are in good hands. I know you are one of the lucky one with insurance covering, it may not be pleasant but you may have to do it again and again until it is finally permanent. At least you have good periods.

ENJOY! You deserve it, you never give up and kept pushing for it!
S
Big Hug

NB: what size ballons did he used this time?
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Postby eric593 » Sat Dec 25, 2010 3:30 pm

So glad it turned out well and you were able to dance at your daughter's special day.

How did Dr. H "determine" that you had re-stenosed beforehand? What made him even decide to balloon your vein at a particular place if it appeared normal on the venogram in a 2D image?

Vivavie, I assume you are talking about Albany as you have described their approach well. Those doctors are the MOST experienced in the U.S., that's probably why it doesn't take them long. They are concerned about vein health long term with repeated procedures, and if the person does not experience benefit, it seems reasonable to caution them from returning for more - they do have extensive experience with patient outcomes to base their opinion on.

The proposed u/s schedule seems reasonable to me when we're talking about clotting risks. I think Dr. Sclafani also recommends a follow up u/s schedule.

Do you think you know better than these highly experienced doctors who have a lot more experience and knowledge than you and are more qualified to understand vein characteristics and risks? Or do you just disagree because you feel like you should be able to have repeated procedures, regardless of the doctor's well qualified opinion on the merits of that given risks vs. benefit factors? It is entirely possible that going too many times too early will prevent you from accessing better care later on when the doctors have learned even more because you've damaged your veins too much by repeated procedures over a very short period of time.

Your approach of multiple procedures over a very short time frame hasn't worked well for you. Maybe you would have been far better off waiting after the first procedure and giving it time for your veins to heal and the doctors to gain more knowledge. Every procedure damages the veins, it seems really crazy to have spent so much money and taken the risks of rushing back for multiple procedures over a very short period of time without taking a break and reassessing in a year or more to see if perhaps they (and you) might be in a better position to re-try, given better knowledge and improved vein health.

I think I prefer the Albany approach for safety and likelihood of success than your approach, IMHO. You could well have jeopardized your future treatment when the doctors know even more because of the damage you've put your veins through by repeated procedures over such a short period of time.

Lucky, do you think you were setting your expectations too high to assume that if you had the treatment before the family event, you would be able to dance? Many many people see NO benefit at all - weren't you risking huge emotional consequences by expecting such high results from a treatment that in no way guarantees ANY result let alone such a dramatic one? I fear the aftermath if people are expecting so much from a treatment with absolutely NO objective evidence of neurological benefit at all. The only evidence we have is an open label study and anecdotal testimonials which NO doctor will tell you is reliable. I don't even think the Zamboni study data talks of improvements in existing neuro damage. Don't you think your expectations of the procedure were inconsistent with a realistic understanding of the data available? I'm glad it worked out, but it seems your expectations of the outcome were very unrealistic and you potentially set yourself up for great disappointment by your grandiose attitude. Were you concerned about that?
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Postby vivavie » Sat Dec 25, 2010 4:27 pm

Eric, since it is not my tread i'll be short. If I did not have the 2nd procedure when my stent (candy wrap stenosis around stent) was blocked it may have get permanent. See Dania's tread, it is now impossible to open again! It was not a choice. By opening my stent my jugular collapse, it was horrible and I was going down hill pretty fast - it was not my choice. Then I had a thrombosis - should I have waited for it to get to my lungs? As for the rest of your accusations I will not highjack lucky's tread. Sorry if I offended you, also sometimes my English is pretty coarse.

I said I would get away from TIM for a while but I felt some support that helped me. Now I KNOW I will stay away. Thanks for the push.

Sorry Lucky, enjoy your time with your family.
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Postby Opera » Sat Dec 25, 2010 5:07 pm

Hi Lucky,

Thank you for sharing your good fortunte with us. It gives us a lot of encouragement.

I wish you and your family all the very best in the coming year.

Kind regards
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Postby David1949 » Sat Dec 25, 2010 9:16 pm

That is indeed a beautiful story! Congratulations and best wishes for continuing improvement.
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ccsvi

Postby blossom » Sat Dec 25, 2010 10:25 pm

great story. wishing you continued healing.
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Postby CCSVIhusband » Sun Dec 26, 2010 8:13 pm

To one of the first persons who "helped" me in the CCSVI journey ...

So happy for you!

You truly are lucky! Dr. H is a keeper (and there are others who are as well) ...

liberation --> improvements
restenosis --> loss of improvements
liberation again --> improvements
restenosis again --> loss of improvements
liberation 3rd --> improvements

:)

I'd say there's a pattern and STRONG correlation ... :)
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Postby lucky125 » Tue Dec 28, 2010 9:00 am

eric593 wrote:So glad it turned out well and you were able to dance at your daughter's special day.

How did Dr. H "determine" that you had re-stenosed beforehand? What made him even decide to balloon your vein at a particular place if it appeared normal on the venogram in a 2D image?

Vivavie, I assume you are talking about Albany as you have described their approach well. Those doctors are the MOST experienced in the U.S., that's probably why it doesn't take them long. They are concerned about vein health long term with repeated procedures, and if the person does not experience benefit, it seems reasonable to caution them from returning for more - they do have extensive experience with patient outcomes to base their opinion on.

The proposed u/s schedule seems reasonable to me when we're talking about clotting risks. I think Dr. Sclafani also recommends a follow up u/s schedule.

Do you think you know better than these highly experienced doctors who have a lot more experience and knowledge than you and are more qualified to understand vein characteristics and risks? Or do you just disagree because you feel like you should be able to have repeated procedures, regardless of the doctor's well qualified opinion on the merits of that given risks vs. benefit factors? It is entirely possible that going too many times too early will prevent you from accessing better care later on when the doctors have learned even more because you've damaged your veins too much by repeated procedures over a very short period of time.

Your approach of multiple procedures over a very short time frame hasn't worked well for you. Maybe you would have been far better off waiting after the first procedure and giving it time for your veins to heal and the doctors to gain more knowledge. Every procedure damages the veins, it seems really crazy to have spent so much money and taken the risks of rushing back for multiple procedures over a very short period of time without taking a break and reassessing in a year or more to see if perhaps they (and you) might be in a better position to re-try, given better knowledge and improved vein health.

I think I prefer the Albany approach for safety and likelihood of success than your approach, IMHO. You could well have jeopardized your future treatment when the doctors know even more because of the damage you've put your veins through by repeated procedures over such a short period of time.

Lucky, do you think you were setting your expectations too high to assume that if you had the treatment before the family event, you would be able to dance? Many many people see NO benefit at all - weren't you risking huge emotional consequences by expecting such high results from a treatment that in no way guarantees ANY result let alone such a dramatic one? I fear the aftermath if people are expecting so much from a treatment with absolutely NO objective evidence of neurological benefit at all. The only evidence we have is an open label study and anecdotal testimonials which NO doctor will tell you is reliable. I don't even think the Zamboni study data talks of improvements in existing neuro damage. Don't you think your expectations of the procedure were inconsistent with a realistic understanding of the data available? I'm glad it worked out, but it seems your expectations of the outcome were very unrealistic and you potentially set yourself up for great disappointment by your grandiose attitude. Were you concerned about that?


Well shucks, Eric, aren't you a burst of sunshine!

Dr. H and I are partners in my care. He bases his decisions on my veins on symptom recurrence. My neuro documented my dramatic improvements after my July procedure. This isn't just a patient's subjective account. I also had an ultrasound a few weeks before the 3rd treatment. Luckily Haskal is wise enough to not base his treatment decisions on that test. It gave no indication of problems in the left IJV, and only a slight hint of narrowing on the right. For now careful documentation of symptom changes is the best method for determining restenosis FOR ME. Everybody is different although I think that old fashioned observation beats fancy machines on this one, hands down!

Dr. H ballooned the right side even though it looked o.k. because he has learned from his colleagues and his own experience that balloons can often be the best diagnostic tool. Lucky for me, huh? Had he just relied on that 2D image, he would not have ballooned my right side, and I would have left there only partially treated.

My expectations were very realistic for this procedure. This was my third treatment, and based on my immediate improvements after the first two, I was as confident as a person can be that the outcome would be swift, and good.

Thanks so much for your concern for my emotional well being. For people going in for their first treatment, I agree that they should expect nothing, and be pleasantly surprised if they have any improvements.

vivavie: I do not have the report yet, but I believe that he went up from size 12 to 14 on the left, and from 14 to 16 on the right.

CCSVI hubby: Hope your wife is still well and flowing freely. Has she needed any tune-ups since her initial treatment? You can PM me. I'd love to hear from you. It seems like forever since we began this journey!

Nicole
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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Postby Cece » Tue Dec 28, 2010 9:41 am

When you say there was a slight hint of narrowing, it wouldn't have been enough to go in on if not for the symptoms pointing toward restenosis?

Was it a full Ferrara transcranial doppler ultrasound, with the 5 criteria?

I hope we don't hear more reports of the doppler not corresponding with whether restenosis is happening or not. I agree about the documention of symptoms except for people who do not have improvements or anything noticeable enough to document, which if we go by Dr. Siskin's numbers is a full third of us.
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Postby lucky125 » Tue Dec 28, 2010 10:11 am

Cece wrote:When you say there was a slight hint of narrowing, it wouldn't have been enough to go in on if not for the symptoms pointing toward restenosis?

Was it a full Ferrara transcranial doppler ultrasound, with the 5 criteria?

I hope we don't hear more reports of the doppler not corresponding with whether restenosis is happening or not. I agree about the documention of symptoms except for people who do not have improvements or anything noticeable enough to document, which if we go by Dr. Siskin's numbers is a full third of us.


Hi Cece,

I don't have the report yet. I was only the 8th US done by the tech at UMD. It could have been lack of experience. Also, they do not use (have?) transcranial US. He just checked the length of my neck. That was enough for the tech at Georgetown to find my initial stenoses back in Feb. of 2010. I just don't think that US, even in the most experienced hands, is going to be sensitive enough to make treatment decisions upon. I hope I'm wrong, but so far my experience tells me this is the case. We've learned SO much in 2010. We'll see what this new year brings!
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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Postby Cece » Tue Dec 28, 2010 10:46 am

It's better that it was a regular doppler that was ineffective than if the news were that the transcranial doppler were ineffective. Dr. Sclafani requires for his follow-ups that they be the full Ferrera transcranial doppler.
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