Dr. Makris' 1st CCSVI Procedure-28 Dec 2010

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Brainteaser
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Post by Brainteaser » Sun Jan 02, 2011 5:07 pm

Thanks so far, Donn.

The other thing is followup - will there be regular contact with the clinic and assessment? What is the plan there? Do you live nearby - this seems important to make sure there is first hand monitoring.

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Donnchadh
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Post by Donnchadh » Sun Jan 02, 2011 7:09 pm

Brainteaser wrote:Thanks so far, Donn.

The other thing is followup - will there be regular contact with the clinic and assessment? What is the plan there? Do you live nearby - this seems important to make sure there is first hand monitoring.
The answer is Yes. I was kind of an unusual case in that I had 2 previous liberation procedures done in 2010. I made sure that I had copies of everything; doctor notes, venograms, ultrasounds, MRV, etc. I made copies and gave them to Dr. Makris at our first office visit. As part of Dr. Sclafani's protocol, a series of post-op ultrasound tests are to be scheduled to monitor the status of the veins. However, their ultrasound technician hasn't been taught the very specific CCSVI ultrasound techniques yet. That is probably going to happen sometime in February, and the plan is to bring me back in as soon as the technician is familiar with CCSVI.

Before I was treated, Dr. Makris wheeled in his ultrasound machine and checked both internal jugular veins to be certain they were open enough to accept the catheter wires.

For me personally, to have a viable "local" option for follow-up is important and when the possibility of being treated by Dr. Makris presented itself I was very excited. His clinic is slightly over one hour's drive via expressway away from me.

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

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Katie41
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Post by Katie41 » Sun Jan 02, 2011 7:48 pm

Fantastic! I'm so glad to hear that you've been able to get treatment so close to you. Great sound, that POP! I had the same thing when I was treated by Dr. Arata in Southern CA and have not restenosed in 5 1/2 months! All the new information gleaned from those who have had this procedure and the sharing of this info throughout the world with pioneering doctors is really advancing the treatment.

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Post by BooBear » Mon Jan 03, 2011 9:04 am

Donna, I am so glad you were able to get the help you needed from Dr. Makris. I plan to see him soon as well for my follow-up (I have not had any luck getting follow up care since Albany). I love all the pics- especially the ones of his office; it is a little confusing unless you got there before!
Three veins angioplastied.  One renewed life.  

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prairiegirl
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Post by prairiegirl » Mon Jan 03, 2011 9:06 am

Katie41 wrote: Great sound, that POP! I had the same thing when I was treated
Interesting to hear that; I wonder how many others have had that experience.
Thanks, Donnchadh for your posts -- wish you continued improvements!

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Donnchadh
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Post by Donnchadh » Mon Jan 03, 2011 9:42 am

prairiegirl wrote:
Katie41 wrote: Great sound, that POP! I had the same thing when I was treated
Interesting to hear that; I wonder how many others have had that experience.
Thanks, Donnchadh for your posts -- wish you continued improvements!
When I had my first procedure (with a different IR), I experienced "cracking" noises and felt bubbles flowing at the stenosis site. But no where as dramatic as that POP!

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

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Donnchadh
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Post by Donnchadh » Mon Jan 03, 2011 9:47 am

BooBear wrote:Donna, I am so glad you were able to get the help you needed from Dr. Makris. I plan to see him soon as well for my follow-up (I have not had any luck getting follow up care since Albany). I love all the pics- especially the ones of his office; it is a little confusing unless you got there before!
It's my feeling that anything we "MSer's" can do to help each other just makes it easier for all of us. I owe a big debt to this site; without it I would still probably be in a world of hurt.

You will be happy with Dr. Makris.

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

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Donnchadh
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Venogram images....

Post by Donnchadh » Mon Jan 03, 2011 4:22 pm

Catheter reaches stenosis high up on internal jugular vein right side:

[img]http://www.webbotdiscussions.com/images ... s_0002.jpg[/img]

9mm balloon at work:

[img]http://webbotdiscussions.com/images/She ... s_0003.jpg[/img]

Internal jugular vein now flowing (also notice presence of collateral veins):

[img]http://www.webbotdiscussions.com/images ... s_0005.jpg[/img]

Near the collar bone area, a looping of the internal jugular vein (Dr. Makris described it as a "cul du sac"):

[img]http://www.webbotdiscussions.com/images ... s_0006.jpg[/img]

Two "waists" are revealed when the vein is dilated:

[img]http://www.webbotdiscussions.com/images ... s_0009.jpg[/img]

Balloon inflated to 18mm (there's 25.4mm's to an inch):

[img]http://www.webbotdiscussions.com/images ... s_0011.jpg[/img]

Blood draining freely now:

[img]http://www.webbotdiscussions.com/images ... s_0015.jpg[/img]

"Waist" discovered near collar bone on left side:

[img]http://www.webbotdiscussions.com/images ... s_0028.jpg[/img]

Loud POP and Success! Blood draining freely now.

[img]http://www.webbotdiscussions.com/images ... s_0031.jpg[/img]
Last edited by Donnchadh on Sun Jan 16, 2011 3:07 pm, edited 1 time in total.
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

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Post by Cece » Thu Jan 06, 2011 4:13 pm

You mentioned in aliyalex's thread that you are feeling great & getting better by the day?
:D

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Donnchadh
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Post by Donnchadh » Thu Jan 06, 2011 4:34 pm

Cece wrote:You mentioned in aliyalex's thread that you are feeling great & getting better by the day?
:D
Yes. I was going to wait awhile to see how things work out before posting. Some symptoms are completely gone, others still here. Some are getting better. Nothing is worse.

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

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Donnchadh
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Post by Donnchadh » Sun Jan 16, 2011 12:20 pm

Today, 16th January 2011, is the 20th day and last day of self-injection of ARIXTRA blood thinner. There's been some discussion of the accompanying use of aspirin while taking ARIXTRA, so here's what's given in the PRESCRIBING INFORMATION leaflet enclosed in the package:

17.1 Patient Advice

The use of aspirin and other NSAIDS may enhance the risk of hemorrhage. Their use should be discontinued prior to ARIXTRA therapy whenever possible; if co-administration is essential, the patient's clinical and laboratory status should be closely monitored.

UNQUOTE.

Interestingly enough in the DRUG INTERACTIONS section 7, acetylsalicylic acid is noted not to significantly affect the pharmacodynamics of ARIXTRA.

I haven't taken aspirin while on ARIXTRA; actually I discontinued it (and all the other iron scrounging stuff) for about a week before the procedure. I wanted to be certain that there were no adverse interactions, so stopped taking everything before hand.

While I was waiting for the procedure date, all my "MS" symptoms came roaring back and I felt miserable. My lower back was killing me; and I was unaware that I was bending down on my knees while standing to help take the pressure off the back. Originally, I anticipated being treated by Dr. Sclafani in Brooklyn so reluctantly decided it was time to obtain a walker.

I no longer felt safe or able to walk distances without assistance.

Everyone hopes they will be that "miracle" patient and be able to jump off the operating table and instantly be cured but that's not reality. During the hour long ride home, my younger brother asked me how I felt and I said that my thinking seems clearer. Interestingly, he said that's exactly what I had said after my first procedure also.

To understand my present day symptoms, you should be aware that I have been progressive "MS" for twenty years now, and am 62 years old.

I no longer have the daily episodes of overwhelming "head" tiredness which were so characteristic pre-procedure, (although I was physically wasted for a couple days after the procedure). When I start to walk, the instantaneous abdominal "banding" sensation (muscle contraction spasm) is completely absent. I can stand upright without back pain, and even lift a foot for awhile. My handwriting is more cursive and better spaced. My sense of balance is much better while standing and walking. The blasted persistent tinnitus in both ears is completely absent today-which is such a relief.

But I still have serious issues with walking (like foot drop and spastic movements), my hands are still numb and tingling, so there remains many serious problems. However, I definitely feel better (AND PLEASE SPARE ME THE "PLACEBO" SH*T ), and am slowly improving day by day.

Strange how the universe leads one; it took three separate procedures done by three different IR's to discover exactly what was wrong with me-twenty years after my accident! Each IR found a different piece of the CCSVI puzzle. Psychologically and emotionally it's relief to know that whatever can be done by surgery has finally been done and the stress of seeking assistance is over. I am not necessarily going to deteriorate day by day anymore, afraid of the future.

What is next is to resume my iron removal protocol and start physical therapy. After my first procedure in March of 2010, I felt so much better that I attacked my exercise bike like a hamster on steroids. But this time, I didn't want to provoke a venous elastic recoil response and so did nothing.

Ten years ago, before my serious symptoms arose, I used to practice Tao Chi Chuan for hours every day. My weight then was 198 and my leg muscles were strong. Today I weigh 235, and all of the gain is fat. Part of the problem with having CCSVI is that of negative feedback loops; you have difficulty walking so the tendency is to minimize movements but that leads to muscle atrophy and makes things even worse. My bluejeans used to be tight around my thighs back when I practiced Tai Chi; today you can grab a big fold because my muscles have shrunk so much.

Perhaps some day I will again be able to do the slow fluid graceful movements of the White Crane; at least I have HOPE now.

Donnchadh
Last edited by Donnchadh on Fri Feb 18, 2011 8:35 am, edited 1 time in total.

Cece
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Post by Cece » Sun Jan 16, 2011 3:39 pm

You give us all hope, Donnchadh.

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Trish317
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Post by Trish317 » Sun Jan 16, 2011 4:06 pm

Your post brought tears to my eyes. I'm so happy that you've gotten to the point where you are. I wish, with all my heart, that my darling man was there....physically and emotionally. His post-procedure improvements were short-lived and now he feels that he's getting worse every day.

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Icechick
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Post by Icechick » Mon Jan 17, 2011 4:31 pm

Thank you so much for sharing this information. I too am going to have to go for round 3 after two trips to San Diego. Can you share anything more with us about the cost for the tests and procedure? I can't wait to follow up with the doctor. :D

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Donnchadh
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Post by Donnchadh » Tue Jan 18, 2011 6:37 am

Icechick wrote:Thank you so much for sharing this information. I too am going to have to go for round 3 after two trips to San Diego. Can you share anything more with us about the cost for the tests and procedure? I can't wait to follow up with the doctor. :D
My procedure was done under Medicare (since I am receiving a disability pension from the RR/SS) and haven't received an Explanation of Benefits yet.

Are you going to have the third attempt done by Dr. Makris?

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

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