3 weeks post secondary procedure

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

3 weeks post secondary procedure

Postby garyak » Fri Dec 24, 2010 1:58 pm

P. Zamboni is my Kris Kringle.
My first procedure at the vein clinic in del mar california sept 20th and the results are in this original post;
http://www.thisisms.com/ftopict-13845.html

After 2.5 weeks went by after having the first procedure my symptoms started to get worse. I started back to my pre-procedure disability edss of 7.5.
6 weeks post-procedure I was back to square one and assumed I had restenosed. I got a second procedure booked for dec 3rd.
I had indeed restenosed where both internal jugulars had nearly the same amount of stenoses as found in the first venogram.
The same sized balloon (14 mm ) was used as the first procedure and the justification for that was explained to me. The difference this time was the balloon was left inflated for about 2 minutes longer per side than the first procedure.
Now what was a surprise to me was that I got very little improvement right off the bat where in the first procedure I had significant improvement by the second day.
I was a bit dissapointed but again had an open mind and remained patient.
My MS progression has been very fast since my diagnoses in may 08. Prior to my second procedure I was getting worse almost daily in most my symptoms.
Since my secondary procedure I have had NO PROGRESSION WHAT SO EVER. My bladder urgency is 80% better now. My fatigue levels are again at about 75% better than pre first procedure.My hands and arms are only slightly better than pre secondary procedure though. I feel my symptoms are getting slowly BETTER in general since the second procedure.
Before the second procedure I could do 1-2 deep knee bends while holding onto the bed frame in my bedroom. Yesterday I did 100 in the morning and 50 before bed. Today I did 50 this morning as my legs were feeling a bit of the effects from yesterday.
I have not had an MS headache since my first procedure where daily all day long I had one for 5-6 months previous. I have less volume with my ringing in my ears.
My mental health is soaring heading into Christmas - have a very merry Christmas all the pwMS and families here on TIMS.
Is my MS cured? My disability sure is not as I am still in my wheel chair full time but my MS progression is currently on hold.
I thought of suicide daily for the last couple years if and when I got to a certain level of disability but those thoughts are absent now.
P. Zamboni is my Kris Kringle and I am living proof that my quality of life has been helped immensely by this miracle of catheter venography with venoplasty.
Thanks Paulo there really is a Santa Claus :) .
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Postby vivavie » Fri Dec 24, 2010 3:42 pm

I am SO happy for you! I have been wondering how you were doing, it started so well. Glad you found a doctor that doesn't stick to the "3 months" pre-requisite before going in again. With time and repeated dilatation I hope it will finally stick!

I wish you all the best for you and your family :D

Nb: I understand what you mean about thinking about death every day. It is "tabou", nobody ever mention it even on this site. I feel it is a great side effect of this procedure :wink:
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Postby ATLKimo » Fri Dec 24, 2010 8:35 pm

Hi, I have PLS, not MS, but I frequent this site hoping to hear that the procedure may benefit those with diseases other than MS.

I am very glad to to hear that you both (used to) think about death daily. I certainly do, planning for the day when my disability reaches a point at which it is unmanageable and unbearable.

I often wondered why it is not brought up more often in this and other forums. It's nice to know I am not alone with those thoughts. It's also nice to know the procedure has helped you both quell those thoughts.

Thanks for bringing up the taboo topic.

Jim
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Postby ErikaSlovakia » Sat Dec 25, 2010 5:56 am

ATLKimo wrote:...I am very glad to to hear that you both (used to) think about death daily. I certainly do, planning for the day when my disability reaches a point at which it is unmanageable and unbearable.
Jim

Me too, for many years. I even often wake up in the middle of the night and I am very stressed because I still have not found out how to do it. I am also very scared I will be so disabled that I will not be able to do it.
So you are definitely not alone :wink:
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby sara-sama » Sat Dec 25, 2010 7:35 am

ATLKimo wrote:Hi, I have PLS, not MS, but I frequent this site hoping to hear that the procedure may benefit those with diseases other than MS.

I am very glad to to hear that you both (used to) think about death daily. I certainly do, planning for the day when my disability reaches a point at which it is unmanageable and unbearable.

I often wondered why it is not brought up more often in this and other forums. It's nice to know I am not alone with those thoughts. It's also nice to know the procedure has helped you both quell those thoughts.

Thanks for bringing up the taboo topic.

Jim


Hi,
My sister has Als ,When did the doppler ultrasound, Found stenosis 90% on both sides of the neck ..
she Got"The Liberation Procedure" By the balloon Since 6 months ago
Then her face color became Normal .. movement of her hands more flexible .. Swallowing Better .. Speech is becoming more clarity ..and no depression
But all of this improvement was for only one Month and returned deteriorate .. maybe she has restenosis .. :(
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Postby Algis » Sat Dec 25, 2010 8:09 am

Death... Taboo? Darn...

I am just thinking loud here; so forgive me. I believe most of the people who are down; at a certain time; think of death; as it would, will, may... happen; or as a desperate wish sometimes (soon discarded fortunately).

I must live. Because I love the life, because I am scared of death, because I don't like to be alone and countless other dark stuff. But mainly because I cannot let down all the people who stand by me for so many years, people who love me, people who care everyday; wondering how I am doing today....
That death would be an insult to all their love, efforts, care and whatever we may call it that makes another sunrise hopeful to us...

I must fight until the last, very last, even further last breath, whisper, ... tear or drop of blood.... Or thought... It is my duty to them...
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Postby David1949 » Sat Dec 25, 2010 9:00 am

Congratulations to you!!

100 deep knee bends is pretty good... very good actually. I'm still walking but I can't do that. In fact I don't think I could do that before MS.

In my opinion your case is further proof that CCSVI is a big factor in your MS, if not the cause of it. Clear the stenosis and the symptoms improve.
Restenose and the symptoms return. Balloon the stenoses again and the symptoms improve again. Its like flipping a switch. Let's hope the switch stays in the MS OFF position this time.
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Postby Cece » Sat Dec 25, 2010 9:09 am

Garyak, so glad to hear of your good results again. :D

Did your doctor say anything about if the "waisting" had broken this time? It's the term from Dr. Sclafani's thread but I've heard two other patients recently talk (separately) about two other doctors referring to it, I think the concept is significant.
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Postby pairOdime » Sat Dec 25, 2010 10:22 am

Excellent news.....great report.
Christmas miracles abound.
It's a paradigm shift
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Postby garyak » Tue Jan 18, 2011 10:24 pm

7 weeks post second procedure my MS progression is currently at a standstill and for now is on a plateau. The longest previous plateau was about 10 days over the past 3 years. Loving this currently.
I do 30-100 deep knee bends a day and 2 months ago could not do one.
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Postby bluesky63 » Wed Jan 19, 2011 7:35 am

I am awestruck. I cannot imagine coming close to even one kneebend. And you are doing that many after being at 7.5 EDSS????!!!! Major congratulations! :-)

I have no useful abdominal or trunk strength. My balance improved after my procedure, but it was a "head" effect, not a core-body effect, if that makes any sense. I was curious if you've seen an effect there, anything like the kneebends? Can you do sit-ups?

I am so, so happy for you. You must be delighted. :-) I hope this sticks!!!
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Postby Cece » Wed Jan 19, 2011 8:25 am

garyak wrote:7 weeks post second procedure my MS progression is currently at a standstill and for now is on a plateau. The longest previous plateau was about 10 days over the past 3 years. Loving this currently.
I do 30-100 deep knee bends a day and 2 months ago could not do one.

That is a great update. :D
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Postby 1_sindy » Wed Jan 19, 2011 8:53 pm

So Glad you are doing well again Garyak,keep up the healing,we are very happy for you
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