I've been lurking

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

I've been lurking

Postby EnjoyingTheRide » Sat Nov 14, 2009 4:08 am

I've been lurking here for a few weeks- so much to read! Thought it was time to introduce myself.

I have advanced PPMS. Full time wheelchair user. Problems were confined to my legs until about a year ago. Now I have difficulty with my hands. I use Dragon Naturally Speaking a lot for dictation software. Took long term disability from my engineering job in May.

My question today is, does anyone know if procedures have been done on advanced PPMS or SPMS patients? I certainly don't expect to jump up out of bed and run around after repair. I just want to stop the progression. Right now life is bearable. I don't know what life will be like if I continue to progress at this pace.

I've submitted my records to Alex and am awaiting a call from Dr. Dake. Frankly, I'm not 100% sold on this process, but time is not on my side. I may proceed without complete buy-in because, well, I'm getting a bit desperate. I can't sit around and wait years for everyone to jump on board these cutting edge treatments.

Is it possible I'll hear something like "oh, I'm sorry, we can't do this procedure on people that are as far advanced as you are."?
Mitch
Please visit my blog at www.enjoyingtheride.com
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Postby Loobie » Sat Nov 14, 2009 7:08 am

Hey ETR, Great blog by the way, I signed up to follow it from when you followed mine! The time thing is what made me decide 100%. I have SP, but I wouldn't call mine 'advanced' as I'm still somewhat mobile. If you've submitted, I'd call Alex next week. With her coming on full time, it will give her more time to spend with patients rather than just needing to spend all her time on the phone with insurance companies.
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Postby bestadmom » Sat Nov 14, 2009 7:11 am

Welcome to the board! I've been on here since May, am SP and in a wheelchair.

I've followed everyone's surgeries and no one has started off being immobile. There are a few SPers who have had the procedure. I believe Loobie is one, and he's had some improvement, and contnues to. He did have some mobililty issues, and they are getting better.

Halting progression is fine for me. But wouldn't it be amazing to just get up and walk out of the hospital!! I hope that over the long term, if progression can be halted, then phyical therapy and stem cells will repair the damage.
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Postby bestadmom » Sat Nov 14, 2009 7:12 am

Thanks for posting Lew! Our posts crossed.
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Postby ozarkcanoer » Sat Nov 14, 2009 7:44 am

:D :D :D

YES !! YES !! YES !!..... Once CCSVI is "proven" (I am so confident aren't I?) then vascular surgeons can help refine and polish the surgical techniques with Dr Zamboni and Dr Dake leading the way. I am hopeful that these surgical techniques will reduce (dare I say eliminate ?) progression.

THEN... all the neurological research can focus on repairing the damage. People with with RRMS and SPMS and PPMS will ALL benefit !!! No more "there is nothing to help those with PPMS" business, LOL.
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Postby Sharon » Sat Nov 14, 2009 7:51 am

ETR -
Welcome to the forum! It is amazing how many "newbies" we have since August -- the word of CCSVI is spreading.

There actually are quite a few of us who have SPMS that have had the procedure. I think we felt a little more desperate than those with the mild symptoms. The SPMS people were going for no more progression - if there were improvements, than Hallelujah!

Is it possible I'll hear something like "oh, I'm sorry, we can't do this procedure on people that are as far advanced as you are."?


At this time, Dake is taking all types of MS'rs. He will remind you over and over, that he is not guaranteeing any improvement - he just does not know. I had my surgery the first of June --- at this point in time, I can tell you I have not had any progression in almost six months.
Hopefully, when Zamboni's new study results are published, we will have a better idea as to how patients fared over a two year period.

Be patient with Stanford - you will get a call,

Sharon
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Postby ozarkcanoer » Sat Nov 14, 2009 8:00 am

Enjoying... so glad to meet you !!! I like Dr. Dake saying that he does not know if there will be any improvement after stenting. It takes a brave man to admit he does not know something. It also takes a brave man to take the road less travelled. :D :D
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Postby EnjoyingTheRide » Sat Nov 14, 2009 8:56 am

Loobie,

I'm glad you like the blog. It helps me pass the time now that I'm not working. I enjoy reading yours as well.

Bestadmom,

Thanks for the welcome. Are you considering going to Stanford?

Ozarkcanoer,

I sure hope this theory proves out over time. The pressure is sort of off if we can stop the damage. That gives us plenty of time to work on those improvements we'd all like.

Sharon,

That's how I feel...VERY important to stop the progression, very important, but slightly less so, to repair the damage.

I'll keep you all updated as I go forward. Thanks for putting together this amazing board.
Mitch
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Postby CureIous » Sat Nov 14, 2009 4:02 pm

Good luck on your journey. While I'm not qualified in the least to comment on anything beyond RR, I commend you on taking that leap of faith because let's be realistic, if it can't help SP and PP there is a big chunk of MS patients that will be left outside the loop and that aint cool, not even a little bit. You are the ones us RR'ers are seriously rooting for. No joke.

Welcome. Keep us updated and please don't hesitate if you need any help, advice or info on the process involved.

Mark Miller
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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Postby bestadmom » Sat Nov 14, 2009 4:39 pm

Hi again,

I was going to DR. Dake at the end Aug-beg September but my insurance flat out denied it and I'm not sitting on piles of cash and have 2 kids to put thru college in the few years. I doubt I'd qualify for financial aid.

So for now, no, but that might change. My boss and several of my clients want to have an industry fundraiser to pay for the surgery for me. I'm also targeting several doctors in the NY tri-state area and I'm hoping to be someone's guinea pig.

Michelle
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Postby Sharon » Sat Nov 14, 2009 4:48 pm

Michelle -

Do not give up on the financial aid from Stanford. Talk to Alex about your situation.

Sharon
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Postby bestadmom » Sat Nov 14, 2009 4:54 pm

Thx Sharon,

One way or another I will get this done. I need to.

Michelle
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Postby ozarkcanoer » Sat Nov 14, 2009 5:12 pm

Michelle, If someone starts a fundraiser for your CCSVI surgery just let me know and I will make a contribution !!!!! Really and truly.

Jill
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Postby Daisyduck » Sat Nov 14, 2009 6:29 pm

Dear Mitch: I have had the disease for 30 years, used to be RR and then became slow progressive. I used a cane, and even with it had a difficult time getting very far for very long. I had four stents placed at Stanford last June, and I have had subtle but important positive changes in how I get around and certainly in how I feel in various ways. Right after surgery I noticed I was picking up my left leg/foot much better. After we went back for the two months checkup Dr. Dake prescribed PT, and I got lucky in that I got a therapist who cared. I walk much better now and hope to travel overseas next year. Would have never occurred to me to even plan on before.
I have a very good friend who is in a wheelchair who has similar reservations about going ahead with the stents. Wish I knew what to tell you otherwise. Good luck to you. Daisyduck
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Postby ErikaSlovakia » Sun Nov 15, 2009 1:34 am

bestadmom wrote:Thx Sharon,

One way or another I will get this done. I need to.

Michelle

Let me know as well,
I have very little, but I also could help.
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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