AlmostClever is Liberated!

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

AlmostClever is Liberated!

Postby AlmostClever » Thu Aug 26, 2010 7:10 pm

Hi all!

Got my plumbing checked today by Dr. S. I can't express how nice this guy and his crew are! My wife came with me and my Aunt came over from Manhattan to be with us. The weather is awesome here compared to the 100 degree hell I live in!


Checked in around noon, Got prepped with an IV in my hand, did some paperwork and was off to the procedure room after 30 minutes or so.


They transferred me to the main table, shaved me and opened up the IV juice. Last thing I remember is some sticking sensation in my groin and that was all.

When I came to, I heard the doc saying something about May-Thurner and we were done in a few more minutes. They bandaged me up and wheeled me back to the recovery room.


Doc S. came in to discuss the results. Overall, my right jug looked decent but he ballooned it anyway to improve it some. The left jug had "mild" blockage and was ballooned. My azygous was questionable and was ballooned in 3 spots around the curvature portion.(14 mm balloon in the jugs and 10 mm balloon in the azy)

I asked him about the May-Thurner's and he said I definately had it but it did not appear to be affecting me - something about the alternate path the blood was taking... he seemed kind of surprised that I had heard and remembered this. My left leg does not or has never hurt because of this - in fact it is much stronger than my right!

I'll need to go back and read the May-Thurner threads now!

After a couple hours of rest, my incision was checked and I was free to go! Told to take 325 mg aspirin for 3 months.


It has only been a few hours and at this report and I cannot determine if anything of significance has happened- no drastric operating room improvements. My head maybe feels a bit clearer if anything...
My MS was very bad this morning (took a hot bath last night - wiped me out! stupid,stupid,stupid!!!) so it may be at least a few days before I'll be able to asses my condition.


They are treating up to 4 patients per day - 2 at each location.

I was number 2 of the day at the hospital.

At the end of this month, they will have done 178.

The waiting list is over 700.

I am staying at the hotel across the street from the hospital. It is very nice and convenient with the skybridge! (Note: bring someone strong to open the room door for you! It has to be 1,000 pounds!)

We ate the Recovery Room last night which was nice. For dinner today, we went to Lombardo's (Italian) which came highly recommended by the nurses and was excellent!

If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby PCakes » Thu Aug 26, 2010 7:22 pm

faaaantastic!! congratulations!! I could read this stuff all day :)
ooh right ..i do 8O

hey.. a thought.. couple years from now.. The CCSVI reunion!! how fun might that be 8)

Good healing A.C.!
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Postby hannakat » Thu Aug 26, 2010 7:50 pm

Awesome! Thank you for the details... really helps those of us still waiting. Sending ++++vibes for healing.

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Postby Cece » Thu Aug 26, 2010 8:23 pm

Congrats & healing thoughts to you!

When I read your bit about the 100 degree hell, I had a flash: the reason people with MS are disproportionately from geographically cold climates is simply because heat intolerance drove us here.

Also: aspirin only? Someone else had reported that he was using blood thinners for angio cases, but apparently not always.
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Postby blossom » Fri Aug 27, 2010 5:31 pm

very happy for you. take care and heal.
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Postby Shea » Fri Aug 27, 2010 6:41 pm

Congrats and take time to rest. I had the procedure done on Monday and had blockages in the jugulars and azygos.... Angioplasty of the three blockages, with no stents. I am on Plavix for three months. Another patient of Dr.S is on Plavix for 6 months and she had less blockages so I'm not sure the criteria for blood thinners or aspirin. I had my follow-up ultrasound done after the procedure and others had to return the next day. I was fully awake for the whole procedure.
Best wishes for continued improvements and a speedy recovery.
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Postby BadCopy » Fri Aug 27, 2010 9:30 pm

The best to you Almost. Wish you the best!!!! REST.
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Postby lovebug » Sat Aug 28, 2010 11:38 am

All the best to you! Keep us posted with your progress in the next day, weeks and months. I am so happy I discovered TIMS months ago so that we MS patients are kept on top of things. I find people here seem to me to be more educated on MS than most drs. I have encountered. Keep up the fine work folks. We are all benefiting from your experiences. I am scheduled in 2 weeks in California. Oh am I nervous!!!!!!!!!
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Postby burg » Sun Aug 29, 2010 7:13 am

Congrats AllClever..Great to hear good news. I'm sure you'll improve as time goes on..
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Postby L » Sun Aug 29, 2010 9:29 am

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Postby AlmostClever » Sun Sep 05, 2010 10:05 am

Here are some slides from my venogram of my Iliac Veins...

Dye injected in left iliac vein starting to flow upward...

Dye shoots through what may be a collateral over into right iliac vein...

now into right iliac and moving back up into inferior vena cava...

I am now seeking local treatment for this and hope to be treated if possible.

As this is a 2D view of whats happening, interpretation of what is really happening is difficult. I hope to get a 3D MRV to see what is really there.

The doctor performing the exam thought that it was a collateral vein that was transferring flow from the left iliac vein (LIV) to the right iliac vein (RIV) that had obviuosly formed due to some sort of blockage higher up in the inferior vena cava (IVC).

Treatment wasn't necessary because it seemed the problem had fixed itself.

I believe the MRV may find that this is not a collateral vein at all, but that the RIV is being compressed by the right iliac artery (RIA). This may be causing the blockage of the LIV which is forcing the portion of flow from the LIV over into the RIV.

I also think that there is indeed a collateral vein that may have formed on the RIV which actually wraps over the RIA (kinda looks like it cuts off the tip of the white triangle which I believe might be the impression of the RIA), which contributes to the apperance that a larger collateral is carrying flow from left to right when it may only be the bottom portion of the RIV which does this.

If this is not the case, I haven't taken measrements yet but my RIV would be substantially smaller then the left, which seems improbable. The compression case described above seems much more likely to me to occur.

Flow from the right leg is being hampered by the spillover from the left. This really fits well into explaing why my right leg is weaker than my left. It would also explain why my right leg could not effectively fight off a strep infection earlier this year - just not enogh blood flow. Dr. Sclafani said thqat numbness is more likely a nerve issue and I agree, but it has also been discussed here that nerves need oxygen to perform correctly - restore flow, restore nerve function!

Hopefully. I'll get a 3D pictre soon and treatment! Wish me luck and I hope this helps shed some light on some other cases of variant May-Thurner's out there!

If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby BooBear » Mon Sep 06, 2010 5:36 am

Congrats!!!!! I highly recommend Albany as well. Good to see that they are working so hard to get through the list.

Rest up and get better!!!
Three veins angioplastied.  One renewed life.  
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Postby AlmostClever » Mon Sep 06, 2010 8:37 am

While, yes, I do recommend Albany, I would offer up these suggestions to anyone going there (or anywhere else):

1) Discuss beforehand what the doctor will do IF he (or she) discovers you have May-Thurner's Syndrome.

2) Arrange for a meeting afterwards to discuss the images you will be given on your cd.

It is likely you will be a little foggy right after the procedure and having a planned follow-up to answer questions will be of huge benefit - especially when trying to decipher the x-ray image sequences.

FLOW OBSTRUCTION is the underlying principal of CCSVI. If flow obstruction is found ANYWHERE in the body, I believe it should be looked at closely and repaired if there is any question it is causing an issue.

I am very grateful to Albany for finding my M-T! I am now vigorously seeking consultation and possible treatment for it locally although Albany may not have considered it a serious issue upon discovery.

If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby elyse_peace » Mon Sep 06, 2010 9:38 am

congratulations! :D
best wishes for your healing.
i found your mentions of dr. s confusing. is dr. sclafani doing procedures again?
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Postby newfie-girl » Mon Sep 06, 2010 3:34 pm

AlmostClever, great suggestions, I totaly agree. :)

Dr. S. and the staff are wonderful,couldn't be in better hands, the care was superb.
I had my procedure on Aug 24, three blockages cleared by angioplasy, no stents. I am on Plavix for 3 months. I was awoke during the procedure as I only had valium half way through. I did have a short conversation afterwards with Dr. S, but failed to ask so many questions, therefore, there is still so much I want to know about the procedure. The next day I went back for ultra-sound, there was good blood flow, but another doc did it and I didn't get a chance to see Dr. S. I have discs but haven't got a clue how to interpret them, would have loved to have a chance to sit with Dr. S and discuss the findings, I am hoping I will get a written report, I E-MAILED him, but he hasn't gotten back to me yet.

You really need to have a plan, which I sorta did, cause I was suppose to meet with him one hour before the procedure, that didn't happen, but you know how things get backed up in clinics/hospitals. :?
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