Loobie update - 18 months out

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

Loobie update - 18 months out

Postby Loobie » Fri Feb 18, 2011 6:32 am

Well the ups and downs and rounds and rounds of life post CCSVI have calmed down and I thought it would be prudent to summarize lots of stuff since I know there are lots of new people on here. I just got done reading a thread by Numbness and it inspired me to summarize what's going on with me since I'm one of the longest owners of stents save for a dozen or so people.

I had my first round done mid July of 2009. The first round only my right side was done as we encountered a tricky valve problem that is really old hat by now but it was early and we chose caution. Well 8 weeks later I had the other side all done and have stents in both of my jugulars. At the one year mark, they were still wide open and the analogy I always use is that they look like McDonald's straws. They looked like that about 6 months out at Dr. Haacke's and they looked like that after a year when I was checked at Stanford.

I did experience benefits in walking endurance, balance and swooning when I would bend at the waist. I felt really good for a long while in terms of leg strength as you can read in my blog I have kept on all of this. Probably the most remarkable thing to happen was my ability to walk all of the airports, including Houston, by myself with no cane and no breaks. When I went out for my first procedure, I had to be wheeled through the airports. I was still on my feet, but I just coudn't walk that much. By the time the second procedure was done, I was walking basically limp free for the entire trek; and I was coming from Ohio so it was a long day for sure but I did it. I had been using a cane full time and have not used it once since the procedure.

I also was the owner of probably one of the two worst cases of banged up spinal accessory nerve on this board; Marie being the other one. To be truthful, that has been really hard as it has kept me, up until really about a month ago, from exercising like I wanted to since I could pull things out of whack in my neck with very little effort. That seems to have gotten better (please knock on some wood).

All in all I'm about the same as I was 18 months ago and I'm secondary progressive. There are still some things that are better like I still don't use my cane, but I have also had some progression in the nerve damage in my left leg. This leg fatigues very easily and is deteriorating, albeit very slowly.

My one point of angst through all of this is that we never touched my azygous vein. Now it didn't appear, three seperate times mind you, to be stenosed and we looked very stringently the last two times I was under the venogram and even showed flow. I just see so many people being stented in their azygous compared to us early Stanford people. I think I had heard that we were only fixing azygous in less than 10% of the Stanford initial group, whereas it is well over 50% happening all over now. That makes me want to get that re-checked in one of the centers that is 'current'. We were definitely guinea pigs out there for sure but I wouldn't have waited no matter what.

So I have to admit to being dissapointed that my left leg is getting weaker. However, I am a major fan of this procedure as I know it gave me back some function. I just think when we're dealing with progressive patients that have experienced degeneration vs. inflamation, the results are going to be more of the 'you're stuck with what you have until we develop a repair mechanism'. So if I were definitely RRMS, I would set up a tent at one of the places that is doing the procedure. After all, the dysfunction we experience when RR is inflammatory, so take away the source of inflammation and it's not that far of a reach to see why that 'camp' is having stellar results.

My take on the whole thing can still be summed up by 'why not'? I mean we all really know drug therapy simply sucks. No one can show me any definitive, hard facts that make the drugs look like anything more than an expensive waste of time. That's my story and I'm sticking to it. So why not really? I mean are we hurting ourselves by making our blood flow better? Hardly. So yes you will be out some money doing this and yes there is a chance it won't be very effective. But there is also the chance that it will be. And there is NOTHING else out there that even shows anything close to some of the results some people are seeing. And if you are on Facebook, there really are some fantastic stories out there. Can I vouch for all of them? Hell no, but what do any of them gain by lying? Nothing. As far as I know, not one single CCSVI'd patient is getting anything for making a positive testimonial.

I also know that the power of HOPE is a very, very powerful thing indeed. You are doing something proactive for your disease and you're going to feel hope where you may have been hopeless before. This can't be underestimated in terms of people's testimonials but you also have to keep in mind some of the improvements that are noted. They are simply too 'physical' to be simply hope and placebo effect. I mean the walking the airport thing and all the videos of women wearing their heels again. Those of us who have experienced major calf weakness and spasticity can vouch for the fact that no hope would be powerful enough to make it even possible to walk in high heels.

I mean I got my SSDI approved the other day (yee- fuckin - haw!) after only 3 months and no lawyer! I was literally on cloud 9 due to the stress relief of having some income again and had a very high functioning day. So feeling positive and full of hope DOES have an effect on how we perceive our disease is going. But that only goes so far.

As I always say, I'd do it again tomorrow if I had to but I am also still having some detrimental things happen in my left leg. But that is it as far as disease stuff goes. Nothing else is worse over all this time and, being progressive, I could never say that in any other 18 mth. period. So I'm very happy I had the procedure done. And I'm probably going to get my azygous re-dopplered to make sure we just didn't overlook something that we have learned much more about after a year and a half. so that's my 18 month update; doing pretty good, but not MS free. There is simply no 'mechanism' yet for any of us to say "yep, I know it stopped it and I'm done with MS". If there was, I'd say it, but I just have to be honest.
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Postby ErikaSlovakia » Fri Feb 18, 2011 7:51 am

Hi Loobie!
Thank you very much for your update.
I wish you the best!
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 cheerleader » Fri Feb 18, 2011 8:05 am

Hey Lew-
Good to read your update. If it weren't for brave individuals like you and Jeff, Erika, Marie and Sharon---there wouldn't be one other treatment center, let alone hundreds. And there wouldn't be a huge conference in Chicago in March, where thousands of IRs are discussing CCSVI and MS. So, you guys deserve the thanks. For putting your bodies on the line to help others.

I still believe there is more healing in store for you....
xo,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby MaggieMae » Fri Feb 18, 2011 8:43 am

Lew,

You didn't mention (and some of the new people on this forum would no know this) but you are no longer taking Tysabri since a few months after your treatment. Correct?

I'm glad you are holding your own. Good idea to get that Azygos checked again some day.

Wishing you the best.
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Postby Cece » Fri Feb 18, 2011 8:51 am

there's a doc in Brooklyn who checks the azygous with ivus and at multiple angles....

Wishing you all the best, Loobie, this seemed promising:
Nothing else is worse over all this time and, being progressive, I could never say that in any other 18 mth. period.
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Postby fiddler » Fri Feb 18, 2011 9:14 am

Thanks for that, Lew. I'm just over 9 months since liberation and, given that I'm SP, have seen results much better than expected, especially wrt fatigue, but my mobility and strength are better and (so far) continue to improve very slowly after the first two months when there was the initial sharp improvement. However, I have been able to exercise, and do so almost every day, and I think that's made a big difference for me. I'm also going to see a physiotherapist about PNF, which has been used for stroke patients and is being tried locally on liberated people. I hope that you have lots of opportunity for exercise and that it brings you benefits.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby Trish317 » Fri Feb 18, 2011 9:16 am

Always enjoy reading your updates, Loobie. I pray for further improvements for you and for the ones you've experienced to stay with you.
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Postby ErikaSlovakia » Fri Feb 18, 2011 9:24 am

cheerleader wrote:Hey Lew-
Good to read your update. If it weren't for brave individuals like you and Jeff, Erika, Marie and Sharon---there wouldn't be one other treatment center, let alone hundreds. And there wouldn't be a huge conference in Chicago in March, where thousands of IRs are discussing CCSVI and MS. So, you guys deserve the thanks. For putting your bodies on the line to help others.

I still believe there is more healing in store for you....
xo,
cheer

This means my dream came true. I know I was only one drop in the ocean but maybe important drop. Now I can happily die even if nothing else happens in my life. I am serious.
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 Ruthless67 » Fri Feb 18, 2011 9:27 am

Hi Lew,

Nice to hear from you and read your 18 mo update. Seems like only yesterday when all you pioneers first had the procedure done at Stanford and I vicariously went through it each and every time by reading your individual stories.
I miss the small core group even though I understand the need to get on with your lives. I miss the wonderful and exciting “days of discovery” when all this was so new.
But it’s still exciting isn’t it Lew? I mean the development and launch of the CCSVI Alliance, Dr. Porama Thanaporn’s mouse model for CCSVI. The conferences now being put on by our pioneering doctors to share information and experiences. The professional papers that are being written and published. The current trials that are underway………I mean only a select few knew ANYTHING about CCSVI only 2 years ago.

Quote from Cheerleader just yesterday,

“It's all still a bit extraordinary to me...I call it divine providence, others might call it coincidence. But I'm proud to know Stanford is continuing to study this.”


So I still log onto Tim’s, Facebook and the Alliance pages almost daily to see what new and exciting items are posted and your update was the “highlight” of my morning. Thank you so much for being one of the original pioneers and may your improvements prove to be permanent and your progression stopped. Just wish that dang leg of yours was better also.

Lora
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Postby IHateMS » Fri Feb 18, 2011 12:51 pm

thanks for the update
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ccsvi

Postby blossom » Fri Feb 18, 2011 8:46 pm

lew, thanks for your update. so happy for you that you have not progressed. the best to you.
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Postby Loobie » Sat Feb 19, 2011 7:56 am

Thanks all for the kind words! Now if I could just get my new puppy potty trained.....
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Postby IHateMS » Sat Feb 19, 2011 9:29 am

Loobie wrote: Now if I could just get my new puppy potty trained.....


good luck w/ that... still trying w/ ours after four monhst
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Postby CD » Sat Feb 19, 2011 10:17 am

Hi Lew,
Thank you for your information and update. I am new to ThisIsMS as a poster, but I have been a reader for years.

That said, I would like to ask you a few questions, if you don't mind. I, too, have stents in my LIJV (three). I had two procedures almost back to back because of blood clots in the first stent, thus no flow in that stented vein. Now it is flowing. I am on Warfarin.

Are you on any blood thinner or anti-coagulant now? Were you ever on any? If you were on them, are you still on them?-and is that what is keeping your veins open and flowing, in your opinion?

I congratulate you on being part of the very first batch of pioneers. I really applaud all of you.
Thank you.
CD
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Postby coach » Sat Feb 19, 2011 10:31 am

Good to get the update Lew. Congratulations on getting the SSDI. Contemplating that myself. My initial results were good and remained so for about 8 months, but have struggled big time with my balance and walking (not that it ever improved). Glad not to have the headaches and dark circles I had under the eyes and glad to be sleeping and talking better. Just not walking better. I'm with you in that I would do it agsin in a skinny minute.
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