Makris - Chicago

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby npost999 » Mon Jun 06, 2011 6:33 am

10 days post angioplasty & no change from prior to the procedure. All my symptoms are still with me & with the weather heating up, I'm definitely still affected by the temperature. I only drink water & I've been diligent on hydrating. I've had a tough day at work that kicked my ass, but thankfully with a hour or so of rest I was able to walk around & get home. I have my follow up ultrasound on June 28th so I'll wait to see what that shows as far as the reflux etc. that was seen pre-procedure
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Postby 1eye » Mon Jun 06, 2011 8:22 am

I think there's maybe still much we don't know we don't know, as well as not knowing it. Dr. Sclafani is finding cumulative effects of drainage problems lower down. I still think there is a temperature knee that is very sharp: it pretty much makes me melt. It seems to me it might be blood viscosity and reflux, but you don't have any.

I hope you get better. Exercise if you can.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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Postby npost999 » Sun Jun 12, 2011 3:36 pm

Cece wrote:I see waisting in the azygous arch balloon, which is then gone in the second image, so that would seem good.

I don't see any waisting in the jugulars.
Cece


forgot to ask you this previously, but I've not seen this written elsewhere...what is waisting?

Thanks!
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Postby Cece » Sun Jun 12, 2011 4:09 pm

Waisting is when there the balloon has a 'waist' appear from the tight stenosis, that then gives way and the balloon is smooth in appearance.
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Postby Donnchadh » Sun Jun 12, 2011 5:08 pm

If you go to this page:

http://www.thisisms.com/ftopic-15090-da ... sc-15.html

you can see "waists" on two of my IJV's both before and after treatments.

Hope you are feeling better.

Donnchadh
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Postby npost999 » Mon Jun 13, 2011 8:42 am

Cece wrote:Waisting is when there the balloon has a 'waist' appear from the tight stenosis, that then gives way and the balloon is smooth in appearance.


is what the arrow is pointing to what your referring to?? sorry that the arrow is a bit thick

Image
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Postby Cece » Mon Jun 13, 2011 10:00 am

npost999 wrote:Image

Image

Yes, exactly. Of these two images, the first one has the waisting where the stenosis resisted the ballooning, as you indicated with the arrow. In the second you can see that it is gone. Assuming that the ballooning was not too aggressive or too big for the vein, this looks like a good job was done in that part of the azygous.

(monday morning quarterbacking, I am not an IR, etc.... :) )
Then looking at the jugular images, which you had said he found nothing substantial, the balloon images bear that out.
npost999 wrote:Image
Image

And this one, which is post-ballooning, do you see the collaterals still visible?
npost999 wrote:Image
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Postby npost999 » Mon Jun 13, 2011 11:23 am

Cece wrote:And this one, which is post-ballooning, do you see the collaterals still visible?


I do see the collateral & I did mention that while on the table & looking over the images immediately after the procedure

Good job MMQB, picked a good day for that...seeing as it is Monday
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Postby Cece » Mon Jun 13, 2011 12:32 pm

So there was a transverse sinus issue identified on MRV, not checked on venogram; a LIJV that still shows collaterals post-treatment, which may indicate missed or undertreated stenosis; the iliac vein and renal vein unchecked, in conjunction with azygous disease (now treated); and a lack of improvements, which is either just the way it goes sometimes or a sign of missed stenosis.

The LIJV could be further interrogated, with IVUS.

The iliac and renal veins could be checked if they weren't (I am not sure if Dr. Makris does these).

The transverse sinus is trickier, you said you had someone talking about stenting there? Was that Dr. Makris or a previous doctor? I would ask a neurointerventionalist on that, perhaps.

Did Dr. Makris have an answer when you asked about the remaining LIJV collaterals?
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Postby npost999 » Mon Jun 13, 2011 1:26 pm

Cece wrote:
The iliac and renal veins could be checked if they weren't (I am not sure if Dr. Makris does these).


he says he checked the illiac & nothing was found there, he did a left femoral vein entry

Cece wrote:The transverse sinus is trickier, you said you had someone talking about stenting there? Was that Dr. Makris or a previous doctor? I would ask a neurointerventionalist on that, perhaps.


this was two other IR's - one local who has never done the procedure & really wasn't wanting to go in & 'play' with the sinus & the other was in CA who I sent the MRV to for his opinion

Cece wrote:
Did Dr. Makris have an answer when you asked about the remaining LIJV collaterals?


don't think there was any Q&A about the collateral, I remember saying is that a collateral & he answering yes, like in conversation. I know I didn't ask 'so is that supposed to still be there or what do we need to do about it'. I go back for the follow-up ultrasound on the 28th & I want to discuss some of these items with him @ that time.
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Postby npost999 » Wed Jun 15, 2011 7:46 pm

Have an appointment with my neurologist tomorrow morning, I spoke with him last fall about CCSVI & he chalked it up with the other snake oil treatments (bee sting therapy etc.). So do I tell him I had the MRV & ultrasound which confirmed I was positive for CCSVI. Then I had the angioplasty procedure, but have yet to see any change in my symptoms? Would this give him the ammunition to tell me...I told you so?? Or do I just tell him that my symptoms have gotten worse the last 5 months (which they have) & go from there??

I appreciate the advice.

NP
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Postby npost999 » Mon Jul 18, 2011 3:52 pm

I wanted to update this post as it has now been almost two months since the procedure. I had the 1-month post procedure ultrasound on June 28th, but after talking with Dr. Makris about two weeks ago I just now finally received the report.

First off I've not seen any change to symptoms & with the summer heat etc., my walking is worse at times. The fatigue is still kicking my butt as well.

Report says - Finding: The right internal jugular vein measures 13.1 mm in the J1 segment and 5.4 mm in the J2 segment, and failed to demonstrate reflux in the upright or supine position, and the cross sectional area is larger in the supine position consistent with a positive delta number. The right vertebral vein fails to demonstrate reflux in the upright or supine position. There is abnormality noted at the jugular valves, which is thickened. There is also no flow detectable within deep cerebral vein with exploration. These findings are consistent with 1/5 positive Zamboni criteria.

In the left, the jugular vein measures 7.7 mm in the J1 segment and 3.8 mm in the J2 segment. The jugular vein shows bidirectional flow in the upright and supine position. The deep cerebral veins fail to demonstrate any flow at exploration. The cross-sectional area at the jugular vein is larger in the supine position with a positive delta number. The vertebral veins failed to demonstrate any evidence of reflux. There is thickening of the valve on the left. These findings are consistent with 3/5 Zamboni criteria.

When compared to the May study (wrong date is written on report), teh left is unchanged and the right has one less positive Zamboni criteria.

I was under the impression from the ultrasound technician during the study that both the left & right side sinus veins had reflux when breathing out...someone correct me if this does not say this in the report. Maybe I'm not reading everything correctly. I also have a copy of the ultrasound images if anyone is interested in me posting those??

Dr. Makris did not feel it was necessary for me to return for any more ultrasounds and did not think I should try and have the procedure again to see if there would be any changes. The report from the procedure says there was 50% stenosis in both IJV & azygous vein.

NP
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Postby npost999 » Mon Jul 18, 2011 3:56 pm

npost999 wrote:Have an appointment with my neurologist tomorrow morning,


Forgot to update this post, neuro ordered a MRI of neck & spine...got a call that there are active lesions present. They gave me 4 options for new/change to my current medication treatment. I'm currently on copaxone. Not sure which way I'm going to go, but I think I'm going to get a second opinion as well as send this neuro the MRV from December.

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Postby Donnchadh » Tue Jul 19, 2011 6:22 am

Dr. Makris is treating about 2 patients per week, yet only three have reported their results.

Anyone else treated by Dr. Makris willing to report their results?

Donnchadh
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Postby npost999 » Tue Jul 19, 2011 10:49 am

I've been in touch with someone else treated by him on the CCSVI in MS fb page & they told me they've not seen any improvement in their symptoms. They did not go back for the 1 month follow up since no change.

I know someone that is there right now for the ultrasound today, will report back when I hear if she is positive. I think she'll go in for the procedure tomorrow.

NP
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