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

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Donnchadh
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Post by Donnchadh » Sun Jan 23, 2011 8:16 am

Received an Explanation of Benefits concerning ARIXTRA:

Retail price..................$2,820.32 (Walmart pharmacy)
Negotiated price...........$2,472.53 (AARP MedicareRx Saver PDP)
Medicare Part D paid.....$1,748.11
Others paid.....................$709.42 (Illinois Circuit Breaker)
My copay..........................$15.00

This was for a twenty day supply of this blood anti-coagulant. There were NO adverse side-effects from ARIXTRA, and as far as I can tell, did what it was supposed to do: prevent blood clotting. After the course of ARIXTRA was completed started taking a 81 Mg aspirin daily.

Donnchadh
Last edited by Donnchadh on Sun Feb 27, 2011 1:57 pm, edited 2 times in total.
Kitty says, "Take that, you stenosis!"

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Icechick
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Post by Icechick » Mon Jan 31, 2011 11:37 am

Just spoke to Jackie at Dr. Makris' office today. She was great. It's nice to know I don't have to get on a plane in the winter in the event I need a third treatment (likely). She said Dr. Makris studied under Dr. Sclafani and Dr. Makris is going to be going to Italy in March. Very cool.

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Post by David1949 » Mon Jan 31, 2011 1:30 pm

Maybe he should go now before that 20" of snow hits! :-)

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Donnchadh
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Post by Donnchadh » Wed Feb 09, 2011 10:01 am

Here's the findings of this procedure:

At the level of the mandible, there is an approximately 60% stenosis of the right internal jugular vein. There is a collateral central to that course and deep into the right subclavian vein. At the base of the right internal jugular vein at the region of the terminal valve, there is an 80% stenosis. This was obscured by a diverticulum-like structure. The remainder of the central venous vasculature is visualized and unremarkable. The left internal jugular vein at the level of the mandible is without significant stenosis (Donnchadh: this area was previously treated by another IR and the stenosis found there was dilated and apparently maintained its opening). However, at the base, the terminal valve region, there is a 60% stenosis of the internal jugular vein. Selective catheterization of the left external jugular vein, which was performed in an attempt to find the internal veins, reveals a normal external jugular vein without stenosis. The visualized portion of the left brachiocephalic vein is widely patent.

Of note, the azygous vein was not evaluated as it has been evaluated twice in the past without stenosis.
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

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Post by Cece » Wed Feb 09, 2011 10:13 am

Was the "diverticulum like structure" affecting the blood flow? It does not sound there was anything he could do for the diverticulum, only for the stenosis near it?

Sorry but I think he should've checked the azygous anyway! It was checked twice previously by people with no CCSVI experience, right? (And, yes, you were Dr. Makris's first CCSVI patient so the no experience applies to him as well, I am aware of any irony here, but at least he trained under Dr. Sclafani.) I've seen what other people have had go missed, most recently that valve of AlmostClever's that both Dr. Siskin and Dr. Sclafani agreed was a clear-cut stenosis but that his new-to-CCSVI IR did not treat.

It's great news though that the previous stenosis that was treated maintained itself open. You have cooperative veins, perhaps. Congrats Donnchadh, thanks for sharing this report, and I hope you are doing well. I will soon have a report of my own to share in exchange! :D

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Post by javabean » Wed Feb 09, 2011 6:59 pm

Donnchadh,
Did you have any improvements after each of the two procedures? Was it different for you after the third as far as improvemrnts? How are you now?

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Donnchadh
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Post by Donnchadh » Thu Feb 10, 2011 6:35 am

Cece wrote:Was the "diverticulum like structure" affecting the blood flow? It does not sound there was anything he could do for the diverticulum, only for the stenosis near it?

Sorry but I think he should've checked the azygous anyway! It was checked twice previously by people with no CCSVI experience, right? (And, yes, you were Dr. Makris's first CCSVI patient so the no experience applies to him as well, I am aware of any irony here, but at least he trained under Dr. Sclafani.) I've seen what other people have had go missed, most recently that valve of AlmostClever's that both Dr. Siskin and Dr. Sclafani agreed was a clear-cut stenosis but that his new-to-CCSVI IR did not treat.

It's great news though that the previous stenosis that was treated maintained itself open. You have cooperative veins, perhaps. Congrats Donnchadh, thanks for sharing this report, and I hope you are doing well. I will soon have a report of my own to share in exchange! :D
The "diverticulum like structure" was ballooned.

The question of whether to attempt a third examination of the azygous was tempered by the following:

Before the first procedure of March 2010, my neurologist had labeled me as primary progressive MS. And Dr. Zamboni's landmark initial study found that 90% of PP MS had some sort of azygous vein involvement. So the first IR, Dr. Sichlau, spent a great deal of time and effort examining the azygous vein. The expectation was that something was amiss with the azygous vein because of the neurological classification.

Interestingly, Dr. Zamboni also observed far fewer cases of azygous vein disorders in Secondary Progressive MS; so it's very possible I was misdiagnosed by the neurologist. I am thinking more and more that the traditional neurological classifications of "MS" are poorly associated with specific CCSVI conditions.

The second IR didn't accept the previous IR's results and re-did everything-and he couldn't find anything wrong either.

Dr. Makris was given the actual .dicom files of the venograms from both previous procedures to examine. He was impressed how far down Dr. Sichlau had gone down the azygous vein.

The decision was made that the risks of a third attempt wasn't worth it considering that previous imaging proved there was absolutely nothing wrong with the azygous vein.

I really pondered whether to be treated by Dr. Makris, only because I would have been his first CCSVI patient. What tipped the scales for me was the following:

1). His follow IR's have a high approval rating for his other work
2). He was trained by Dr. Sclafani and would be following his "aggressive" protocol
3). Like Dr. Sclafani, he is unwilling to use stents
4). The cost of traveling to Brooklyn was far more then I had money-wise
5). His clinic was "local" so if I needed follow-up then that was a realistic option.

Even with the advantage of hindsight, I am absolutely happy with my decision to go with Dr. Makris. There's no doubt in my mind he will only get better with more CCSVI patient experience. While choosing an IR is a intensely important and personal decision for each CCSVI patient, I feel I can recommend Dr. Makris with no hesitation.

Donnchadh
Last edited by Donnchadh on Sun Feb 27, 2011 2:11 pm, edited 2 times in total.
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

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Donnchadh
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Post by Donnchadh » Thu Feb 10, 2011 7:06 am

javabean wrote:Donnchadh,
Did you have any improvements after each of the two procedures? Was it different for you after the third as far as improvements? How are you now?
After the first procedure, there were dramatic improvements in the severity of my symptoms. However, after 6 days the symptoms came roaring back. Subsequent MRV and ultrasound testing proved that the treated areas had re-stenosis.

After the second procedure, because it was done in an extremely conservative approach, there were only two improvements. My blood pressure, which had been trending upwards, dropped by 50 points. The constant (and I mean for nearly twenty years!) outward pressure from the top of my neck had vanished. These two improvements have lasted since last June.

The improvements after my third procedure are posted above in this thread. There continues to be more gradual improvements. And just as importantly, nothing has gotten worse. I just donated a pint of whole blood this Tuesday, and the blood pressure readings were 132/86 which represents a phenomenal improvement from the second pre-op (220/102).

I am scheduled for a "Zamboni" ultrasound on March 21st for my first follow-up exam at Dr. Makris' clinic.

If anyone has questions they would like asked, perhaps I will be able to do it at that time.

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

Got MS?.....Get Liberated!

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Post by Nunzio » Thu Feb 10, 2011 9:16 am

I agree with Cece regarding your Azygous. The same thing happened to me; it was called normal by 2 doctors. When I looked at the picture I see a narrowing and Dr. Sclafani agrees with me. Keep in mind that Dr. Zamboni found a very high rate of azygous stenosis in PPMS.
Donnchadh wrote:
After the second procedure my blood pressure, which had been trending upwards, dropped by 50 points.

The improvements after my third procedure are posted above in this thread. I just donated a pint of whole blood this Tuesday, and the blood pressure readings were 132/86 which represents a phenomenal improvement from the second pre-op (220/102).
Donnchadh
This is very interesting to me. My theory is that when your brain realize it is not receiving enough blood flow because of the narrowed Jugular veins, it makes your blood pressure go higher to compensate. Now that your veins are not constricted anymore and there is good blood flow it doesn't need to do that.
This I also believe is the reason we have more cases of MS now compared to few decades ago. We now have very effective blood pressure medication and by using them, we are in effect, lowering our brain perfusion.
Everybody here brings happiness, somebody by coming,others by leaving.  PPMS since 2000<br />

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Post by Trish317 » Thu Feb 10, 2011 10:20 am

Donnchadh wrote:
javabean wrote:Donnchadh,
Did you have any improvements after each of the two procedures? Was it different for you after the third as far as improvements? How are you now?
After the first procedure, there were dramatic improvements in the severity of my symptoms. However, after 6 days the symptoms came roaring back. Subsequent MRV and ultrasound testing proved that the treated areas had re-stenosis.

After the second procedure, because it was done in an extremely conservative approach, there were only two improvements. My blood pressure, which had been trending upwards, dropped by 50 points. The constant (and I mean for nearly twenty years!) outward pressure from the top of my neck had vanished. These two improvements have lasted since last June.

The improvements after my third procedure are posted above in this thread. There continues to be more gradual improvements. And just as importantly, nothing has gotten worse. I just donated a pint of whole blood this Tuesday, and the blood pressure readings were 132/86 which represents a phenomenal improvement from the second pre-op (220/102).

I am scheduled for a "Zamboni" ultrasound on March 21st for my first follow-up exam at Dr. Makris' clinic.

If anyone has questions they would like asked, perhaps I will be able to do it at that time.

Donnchadh
Is there a specific protocol that needs to be followed in a follow-up ultrasound? I've done alot of research but I've never found a definitive answer.

My darling man had his procedure done, in Albany, in September. Brief improvements quickly disappeared. He had a follow-up ultrasound, locally (Iowa) in December. He didn't mention CCSVI to the technician, and was told by the tech that his veins are open.

Is it possible that he's restenosed and the ultrasound wasn't done properly? When I suggested that to him he didn't think I was right. He just believes if they said the veins are open, the procedure just didn't work for him.

He has a very complicated medical history....migraines started in his teens....broken neck in his 20's....several grand mal seizures in about the last 15 years....then in 2007, at the age of 55, the PPMS diagnosis. Recently, things have gotten worse....numbness in his hands....pain and weakness in his arms....and he believes he'll need a wheelchair in the near future.

I don't know what to say to him to help. I know the procedure was done by one of the best (Dr. Mandato). I've also wondered if CCSVI is part of the puzzle for him. Just because he was told the veins are still open, doesn't convince me that they knew what they were doing and restenosis isn't really the case.

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Post by Cece » Thu Feb 10, 2011 12:43 pm

trish, yes, ideally it would be done by the zamboni ferrera method using the five criteria, the same as diagnosing ccsvi in the 1st place.

hearing that dr sichlau went far down the azygous tells me that dr sichlau was dedicated & trying to do best by you but it also sounds like effort wasted in the wrong area - if it were me i'd keep it in mind for the future - we are works in progress, who knows how many repeat procedures will be needed, the docs keep learning too

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Donnchadh
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Post by Donnchadh » Thu Feb 10, 2011 2:04 pm

Trish317 wrote:
Donnchadh wrote:
I am scheduled for a "Zamboni" ultrasound on March 21st for my first follow-up exam at Dr. Makris' clinic.

If anyone has questions they would like asked, perhaps I will be able to do it at that time.

Donnchadh
Is there a specific protocol that needs to be followed in a follow-up ultrasound? I've done alot of research but I've never found a definitive answer.

My darling man had his procedure done, in Albany, in September. Brief improvements quickly disappeared. He had a follow-up ultrasound, locally (Iowa) in December. He didn't mention CCSVI to the technician, and was told by the tech that his veins are open.

Is it possible that he's restenosed and the ultrasound wasn't done properly? When I suggested that to him he didn't think I was right. He just believes if they said the veins are open, the procedure just didn't work for him.

He has a very complicated medical history....migraines started in his teens....broken neck in his 20's....several grand mal seizures in about the last 15 years....then in 2007, at the age of 55, the PPMS diagnosis. Recently, things have gotten worse....numbness in his hands....pain and weakness in his arms....and he believes he'll need a wheelchair in the near future.

I don't know what to say to him to help. I know the procedure was done by one of the best (Dr. Mandato). I've also wondered if CCSVI is part of the puzzle for him. Just because he was told the veins are still open, doesn't convince me that they knew what they were doing and restenosis isn't really the case.
There is a specific protocol to follow, and there is quite a lot of operator skill involved. The ultrasound technician is going for specific training for this.

I am no doctor, but it sure sounds like re-stenosis to me.

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

Got MS?.....Get Liberated!

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Post by npost999 » Fri Feb 11, 2011 12:49 pm

I may have missed reading the information, but were valves checked? I've been reading so much about valves it seems and was wanting to see if this is now the standard protocol for most all IRs.

I too live in Illinois & if Dr. Makris is following Dr. Sclafani's protocol I'll keep him on my list of IRs to pursue.

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Post by Donnchadh » Fri Feb 11, 2011 12:57 pm

npost999 wrote:I may have missed reading the information, but were valves checked? I've been reading so much about valves it seems and was wanting to see if this is now the standard protocol for most all IRs.

I too live in Illinois & if Dr. Makris is following Dr. Sclafani's protocol I'll keep him on my list of IRs to pursue.
He was trained by Dr. Sclafani, so the answer to your question is, yes.

I know that several already have appointments with Dr. Makris.

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

Got MS?.....Get Liberated!

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Post by npost999 » Wed Feb 16, 2011 2:38 pm

I spoke with Jackie at the clinic yesterday and she told me they are currently waiting on the sonographer to get some more training before they start up the ultrasounds again. She also said that only one patient has been treated & I'm assuming that is you Donnchadh??

Did they use IVUS with you? I thought she said they were not doing it, but I was under the impression that Dr. Sclafani used it and that surprised me that all of the clinics he has trained doctors at are not using it.

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