David1949 angioed today.

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

David1949 angioed today.

Postby David1949 » Wed Apr 25, 2012 2:09 pm

Had my venoplasty today in Chicago. No immediate changes. Biggest obstacle so far was surviving the Chicago freeway system. It was definitely designed by a homicidal maniac. :twisted: Only my left jugular was ballooned. It was about 90% blocked. Azygous was good. Right jugular was only about 3mm in diameter and had a small blockage. Dr. decided it was too small to attempt ballooning. Will have more info after my follow-up visit with doctor and then trip home.

Dave
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Re: David1949 angioed today.

Postby CureIous » Wed Apr 25, 2012 2:25 pm

Fantastic, congrats, keep us posted!
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: David1949 angioed today.

Postby Cece » Wed Apr 25, 2012 2:31 pm

Dave!!
So a 90% blockage on the left and a hypoplastic jugular on the right. It would've been better if there'd have been more to treat but having that 90% blockage cleared has got to help. Do you know how many mm the jugular on the left is?
So glad that you were treated and all went well. Now it's wait-and-see if improvements happen.
And you don't have cogfog or fatigue? With a 90% blockage and a hypoplastic jugular? I do not understand this disease.
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Re: David1949 angioed today.

Postby David1949 » Thu Apr 26, 2012 5:11 pm

The left jugular was 20 mm which I guess is pretty large, but it narrowed down to only 2 or 3 mm in the valve. He was able to balloon it to 12mm. I think the strategy is to balloon it until the valve pops or until the patient screams. In my case it was the latter. Still no changes to report. No HD effect.
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Re: David1949 angioed today.

Postby Cece » Thu Apr 26, 2012 6:33 pm

It must have hurt. Ouch. My first ballooning on the first procedure was the worse, and it was because my one sorta-working jugular was blocked by the balloon and the other jugular had a complete valve blockage, so there was head pressure as well as neck pain, and that was on the Fentanyl. No, you don't want the valve to 'pop' with a popping sound as in tearing. But you do want it to stay open. Yes, 20 mm is large!!

If you can later get us information on what size balloon was used and what atm, it would be good to know if you were fully treated, or if there was undertreatment, which might be possible with a vein that large. You're at the top of the sizing chart. But that is getting so technical and what I really want to do is wish you well, and rest. Even with no immediate improvement, which is really disappointing even to me hearing about it, it is still good to have improved blood flow. Take care.
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Re: David1949 angioed today.

Postby tiltawhirl » Thu Apr 26, 2012 9:03 pm

David1949 wrote:The left jugular was 20 mm which I guess is pretty large, but it narrowed down to only 2 or 3 mm in the valve. He was able to balloon it to 12mm. I think the strategy is to balloon it until the valve pops or until the patient screams. In my case it was the latter. Still no changes to report. No HD effect.


All the best on continued healing Dave!

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Re: David1949 angioed today.

Postby David1949 » Sat Apr 28, 2012 7:26 pm

Cece wrote:It must have hurt. Ouch. My first ballooning on the first procedure was the worse, and it was because my one sorta-working jugular was blocked by the balloon and the other jugular had a complete valve blockage, so there was head pressure as well as neck pain, and that was on the Fentanyl. No, you don't want the valve to 'pop' with a popping sound as in tearing. But you do want it to stay open. Yes, 20 mm is large!!

If you can later get us information on what size balloon was used and what atm, it would be good to know if you were fully treated, or if there was undertreatment, which might be possible with a vein that large. You're at the top of the sizing chart. But that is getting so technical and what I really want to do is wish you well, and rest. Even with no immediate improvement, which is really disappointing even to me hearing about it, it is still good to have improved blood flow. Take care.


I don't have all the info yet. They are supposed to mail a CD to me.
Anyway I think he used a 16mm balloon. In the image he showed me, the ballon appeared to be fully inflated with no apparent waist. I think that's good. I would like to have seen him get to 18 mm but going from 3 to 16 is quite a stretch. I suppose it shrank back to 12 as the balloon was deflated. As the ballon was inflated I felt great pain in the area of the balloon but it also felt like my head was exploding. I guess that's the same feeling you had. Definitely not something I would recommend for entertainment.

That makes me think of something. Some IRs say that if you treat the valve then other problems higher up tend to disappear. So maybe when you completely block blood flow at the valve, blood still comes into the vein from above which increases the pressure there. That stretches out the vein. It's kind of like doing a venoplasty with blood pressure instead of a balloon.
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Re: David1949 angioed today.

Postby tiltawhirl » Sat Apr 28, 2012 8:09 pm

David1949 wrote:
Cece wrote:It must have hurt. Ouch. My first ballooning on the first procedure was the worse, and it was because my one sorta-working jugular was blocked by the balloon and the other jugular had a complete valve blockage, so there was head pressure as well as neck pain, and that was on the Fentanyl. No, you don't want the valve to 'pop' with a popping sound as in tearing. But you do want it to stay open. Yes, 20 mm is large!!

If you can later get us information on what size balloon was used and what atm, it would be good to know if you were fully treated, or if there was undertreatment, which might be possible with a vein that large. You're at the top of the sizing chart. But that is getting so technical and what I really want to do is wish you well, and rest. Even with no immediate improvement, which is really disappointing even to me hearing about it, it is still good to have improved blood flow. Take care.


I don't have all the info yet. They are supposed to mail a CD to me.
Anyway I think he used a 16mm balloon. In the image he showed me, the ballon appeared to be fully inflated with no apparent waist. I think that's good. I would like to have seen him get to 18 mm but going from 3 to 16 is quite a stretch. I suppose it shrank back to 12 as the balloon was deflated. As the ballon was inflated I felt great pain in the area of the balloon but it also felt like my head was exploding. I guess that's the same feeling you had. Definitely not something I would recommend for entertainment.

That makes me think of something. Some IRs say that if you treat the valve then other problems higher up tend to disappear. So maybe when you completely block blood flow at the valve, blood still comes into the vein from above which increases the pressure there. That stretches out the vein. It's kind of like doing a venoplasty with blood pressure instead of a balloon.


Same pain for me. Excruciating especially when trying to stretch the 4mm diameter left jug. He did it once to the small vein and then took a break because of the pain and went to other veins until a bit later and then went back to the small vein to try and stretch it again. It was so much pain I actually asked him "so when are you going to give me the Fentanyl?" to which he responded we already have! MORE Fentanyl please! and he upped the dose and I got a total of 225mgs but still had major pain in the small vein when stretching. I have a feeling that I was opiate tolerant, as I had been on Codeine Contin for about two weeks previous for the pain in my left foot.

But it was all worth it in the end. :)

tilt
...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
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Re: David1949 angioed today.

Postby David1949 » Wed May 09, 2012 5:37 pm

My two week update- No change, either better or worse.
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Re: David1949 angioed today.

Postby CureIous » Thu May 10, 2012 10:17 pm

Thanks for the update David.

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: David1949 angioed today.

Postby David1949 » Sat May 26, 2012 6:58 am

My one month update.

Mostly I have to say no change. My gimpy left leg is still the same. Fatigue has never been a problem for me, but I do seem to have somewhat more energy now. I've been doing some work in the backyard lately that I would have thought I could no longer do; digging, dragging landscape timbers around. Overall there is very little if any difference.
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Re: David1949 angioed today.

Postby Cece » Sat May 26, 2012 7:59 am

I hope that new energy continues and does end up being an identifiable improvement for you. Thanks for the update, David. I still think that 20 mm jugular has great potential if it were opened fully!
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Re: David1949 angioed today.

Postby tiltawhirl » Sat May 26, 2012 11:57 am

Thanks for posting your update David. All the best on continued improvements. :)

tilt(the other 20mm jughead)
...and I for one, welcome our new Neurologist overlords!

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Re: David1949 angioed today.

Postby David1949 » Sun May 27, 2012 12:25 pm

tiltawhirl wrote:Thanks for posting your update David. All the best on continued improvements. :)

tilt(the other 20mm jughead)


Thanks for the kind words Tilt. Maybe we could start a club, the 20mm jugheads. :-)

Cece Maybe the stenosis in the 20mm jugular could be opened up to improve my condition , but I will not do any more procedures unless the probability of success improves greatly; to 99% maybe, and the risk of restenosis must be greatly reduced. I'm spending my children's inheritance. I took one shot at the procedure and I can't justify any more of that.

From now on I'll work on inexpensive things like diet and exercise. Also I still have to count my blessings. I realize that my condition is not nearly as bad as it is for some folks. After the treatment I joined CCSVI tracking. They have a list of several feats one must perform to determine one's condition. It seems I did pretty well on many of them. And maybe the treatment I had will delay the progression of the disease.

Yes I'd love to be able to walk without my cane or leg brace, But the fact that I can still walk with them is good news. I'd love to be able to play tag with my grandkids and actually catch them, but I guess I just have to catch them by stealth. :-)

I'd love to be able to walk a beach with my wife or dance with her. But I take great comfort in having a loving wife and family, and good friends. Some folks never get that.
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Re: David1949 angioed today.

Postby FLJhawk » Sun May 27, 2012 3:07 pm

Dave, has it been just a month since the procedure? I wouldn't expect to see much improvement until at least several months. If you have a lot of nerve damage, it will take a while to heal. I have always thought that a lot of the instant recoveries from CCSVI was due to the resolution of some problem other than MS. I mean, you can't repair nerve damage in an hour. It takes time. Hopefully you will see improvment as time goes by.
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