Our trip to the local vascular neuroradiolgist

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

Postby CRHInv » Wed Apr 28, 2010 12:04 pm

I am so sorry to hear this! We are all rooting for you guys!
Take good care,
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
User avatar
CRHInv
Family Elder
 
Posts: 402
Joined: Sun Aug 30, 2009 3:00 pm
Location: Chandler, AZ

Advertisement

Postby hoodyup » Wed Apr 28, 2010 12:10 pm

She wants to wait a day or two to make sure it is what it seems to be. I am going nuts and will probably call the doctor today anyway. I don't know if we'll have to repeat the MRV and doppler or if we can go straight to the venogram this time. I did notify the doctor after the initial improvements. He said if there were improvements, followed by setbacks (ie restenosis) we would possibly consider stents. He is very reluctant to place them in jugulars due to the Stanford stent migration. He said it can be done and is done in dialysis patients whose jugulars are collapsed due to a port being put in. I am hoping we can draw on his 30+ years of experience to find a lasting solution. It is so obvious the change that occurs when one goes from one state to the other (liberated/restenosed). I wish you luck with your local IR, may it all go smoothly.
Andrew
User avatar
hoodyup
Family Member
 
Posts: 59
Joined: Wed Sep 16, 2009 3:00 pm

Postby hopeful2 » Wed Apr 28, 2010 12:55 pm

I'm sorry to hear Boopie isn't feeling good. Whenever I get a urinary tract infection ALL my symptoms go downhill until the UTI clears up. I'm hoping (for Boopie and you) that the problem is bladder stuff and not restenosis!

Patrice
User avatar
hopeful2
Family Member
 
Posts: 77
Joined: Sat Feb 06, 2010 4:00 pm
Location: San Francisco Bay Area, Calif.

Postby mshusband » Wed Apr 28, 2010 2:53 pm

Good stuff Hoody!

Not that your wife has re-stenosed, but that you have a doctor willing to work on this with her - who CAN work on this with her (and you).

I've had people calling me names for not letting our doctor's name out there ... but it is for reasons just like you're doing ... that you NEED that doctor to be available for this treatment.

Good luck brother.

Keep us updated, we need to hear the good and the bad in this. The fact that she had improvements means that they CAN happen.

What's going to be interesting when you go back is IF she re-stenosed then you know that alleviating that stenosis was the CAUSE of her improvements.

I think if her symptoms go away after being re-treated ... that's the big thing ... it's linking stenosis and symptoms and liberation and lessening symptoms.

Boopie's a pioneer for sure ...
User avatar
mshusband
Family Elder
 
Posts: 249
Joined: Sun Jan 24, 2010 4:00 pm
Location: Pittsburgh, PA, USA

Postby Donnchadh » Wed Apr 28, 2010 3:16 pm

hoodyup wrote:Day 14. After a week of improvements, a bladder infection and some bad anti-biotics we were all set to see more improvements. Or at least get some time under our belt with the improvements already noted. Then, the last couple of days she has been feeling tired all the time. Her vision has gotten worse, her vertigo is back when lying flat and she seems more sensitive to heat. Also, her feet and legs are cold again and she has numbness in fingers and legs. She is agitated and angry all the time. We are both reluctant to face what is probably going on: restenosis. I hate this f***ing disease. She had such a good few days and appreciated every little thing that was better--now back to square one. Thanks for everyone's good thoughts as we try to stay positive and prop up my wilting Boopie sprout.
Andrew


Exactly the same thing happened to me after I had the procedure: feeling much better for five days, but then have the veins re-stenosis.

Unfortunately for me, my IR's hospital board now has required a IRB before allowing any further procedures. Even non-invasive testing (ultrasound & MRI/MRV) has been suspended pending review.

So, I am exactly back to where I was before the procedure. It's as if the operation never even happened. The IR is more convinced about the connection between CCSVI and MS. He uses stents in his other practice procedures; his attitude is similar to Dr. Simka's-they can be used without issues.

Supposedly, the IRB review will be finished in about 2 months, and I have been told that I am on top of waiting list.

On a positive note, I now know with absolute certainty where the stenosis is located and when they are opened, wondrous improvements will result.
I know that the IR is first-rate, and have complete confidence in his ability to implant the stents.

I hope that your doctor isn't blocked in doing a repeat procedure!

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
User avatar
Donnchadh
Family Elder
 
Posts: 513
Joined: Sat Jan 23, 2010 4:00 pm

Postby Johnson » Wed Apr 28, 2010 3:40 pm

Oh, Man! I am very sorry to hear of the set-back Boopie and Hoody.

I won't bother with platitudes, but just keep in mind that Boopie had some improvements - which means that there is an answer. Maybe stents, but an answer none-the-less.

It must be terrible to feel better, and slip back. It must be almost as bad as when the MS first hit, with the exception that when MS hit us, we had no hope. Now we do. Hang in there Boopie! You can get it back. It's a hiccup - even if you are tasting the fish again.

Hang in there, Andrew. I think that in some ways it's harder on you. It is "easier" for us that are messed up than for those that care so much about us - even if it is us that feel crappy. At least people understand our depression and bad moods, but those that care for us have more of a burden, and you are all a bunch of saints, as far as I am concerned.

I hope that you can get back for re-treatment right away. You have the best wishes of thousands behind you.
My name is not really Johnson. MSed up since 1993
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 4:00 pm
Location: Ucluluet, BC

Postby hoodyup » Wed Apr 28, 2010 5:28 pm

hopeful2 wrote:I'm sorry to hear Boopie isn't feeling good. Whenever I get a urinary tract infection ALL my symptoms go downhill until the UTI clears up. I'm hoping (for Boopie and you) that the problem is bladder stuff and not restenosis!

Patrice


Thanks Patrice, she finished up her abx on Sunday and the UTI seems gone. We will have to see what happens in the next couple of days.


mshusband wrote:What's going to be interesting when you go back is IF she re-stenosed then you know that alleviating that stenosis was the CAUSE of her improvements.



To me this is a forgone conclusion. She was floundering for years. She had angio and saw improvements for the first time in...ever. I mean, what else could have brought those changes? Placebo? Nah.

Johnson(not really) wrote: Oh, Man! (and other cool stuff)


Yeah, thanks, man. I do appreciate platitudes. I believe in this stuff, really, I do. I just want 'er fixed and fixed good! No comebacks. I do appreciate our doctor's concern to never stent on the first date. We aren't too far from the center either, so it is doable as long as Boopie stays on board.

What I am afraid of is they will make us do another MRV which, being an imperfect imaging technique, may not show anything. Then they may decline to do another venogram for lack of sufficient evidence. This is just speculation and fear on my part. Need to take a deep breath and go one step at a time.

Boopie never wanted to be a pioneer, but she is anyway (guinea pig as she would say).

I think she's incredibly brave just being alive -- as are all people who are fighting this disease.

Hangin' in there,
Andrew
User avatar
hoodyup
Family Member
 
Posts: 59
Joined: Wed Sep 16, 2009 3:00 pm

Postby bestadmom » Wed Apr 28, 2010 5:57 pm

Hoodyup,

I am saddened to hear Boopieup is not doing well. I'm sure your doctor will get right back in there and figure out what is wrong. If it can be fixed once, it can be fixed again, and it will be.
User avatar
bestadmom
Family Elder
 
Posts: 722
Joined: Mon May 18, 2009 3:00 pm
Location: CT

Postby ndwannabe » Wed Apr 28, 2010 6:03 pm

Oh dear :(

I am keeping my fingers crossed that you will not encounter any road blocks on re-treating your sweet wife!
User avatar
ndwannabe
Family Elder
 
Posts: 290
Joined: Sat Jan 02, 2010 4:00 pm
Location: SF Bay Area, CA

Postby hoodyup » Wed Apr 28, 2010 6:19 pm

Donnchadh wrote:
Exactly the same thing happened to me after I had the procedure: feeling much better for five days, but then have the veins re-stenosis.



I was reading your story before we went in and afterward. I really feel for you. To have improvements and lose them, and then be blocked by some **&&^*! IRB crap. I'd be swingin'. I hope you get to get in and back on track soon, my friend.

Andrew
User avatar
hoodyup
Family Member
 
Posts: 59
Joined: Wed Sep 16, 2009 3:00 pm

local neuroradiologist

Postby elyse_peace » Wed Apr 28, 2010 9:32 pm

Boopieup & Hoodyup,
I’m so sorry to hear of your setback. I have been following your story with great hopefulness, as I also try to figure out what to do myself.
I was very glad for both of you when Boopie had improvements. You are both so brave. Hoody, you are such an incredible support for Boopie. When I mention the procedure to the person who is my caregiver, his take on it is: “you’re too sick.”
I’m glad that your local doc has your back (as far as the board will let him). It’s too bad that they have erected a speed bump in your way, but I feel sure that you will prevail.
When you think of it, it makes nothing but sense to me that Boopie is angry. I mean, what the heck?
I wish you both the best. Healing to you.
User avatar
elyse_peace
Family Elder
 
Posts: 173
Joined: Thu Dec 31, 2009 4:00 pm
Location: Putnam, NY

Postby hoodyup » Thu Apr 29, 2010 11:22 am

Thanks for the support guys. I have a call in to the doc, will know more tomorrow. Boopie is languishing but is very resistant to the stent idea. I think if our IR feels it is necessary maybe she will come around. He is very cautious about stents.

elyse--don't let anyone tell you you are too sick for the procedure (unless it is the doc). If you are progressive, things just get worse so jump in while you can. It took a Hoyer lift, a transport van and 4 firemen, but we got her there. Once there you are in good hands and the procedure itself isn't too bad according to Boop.
User avatar
hoodyup
Family Member
 
Posts: 59
Joined: Wed Sep 16, 2009 3:00 pm

Postby Cece » Thu Apr 29, 2010 11:53 am

I feel for you and her...if not stents, maybe a second ballooning?
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
Cece
Family Elder
 
Posts: 9024
Joined: Mon Jan 04, 2010 4:00 pm

Postby Donnchadh » Thu Apr 29, 2010 1:49 pm

hoodyup wrote:
Donnchadh wrote:
Exactly the same thing happened to me after I had the procedure: feeling much better for five days, but then have the veins re-stenosis.



I was reading your story before we went in and afterward. I really feel for you. To have improvements and lose them, and then be blocked by some **&&^*! IRB crap. I'd be swingin'. I hope you get to get in and back on track soon, my friend.

Andrew


After the veins re-stenosis, I was afraid that the IR wouldn't be comfortable with the idea of using stents. Turns out that the delay wasn't due to him, but rather the hospital board (IRB's are the medical version of CYA-everyone has heard of the ONE stent migration). I would be willing to bet that the failure rate in stent placement in arteries for heart procedures is much higher. 2% ?

I showed the IR Dr. Simka's answer to the stent migration issue and he readily concurred. He has implanted many stents for various applications before (even for veins in treating leg problems), but not for CCSVI yet. I would be his first, but I have complete confidence in his ability. He called in a neurological IR for a consultation for where my stenosis in located, and it turns out he had done one before at that location (very end of internal jugular vein).

According to Dr. Simka, he has done over 250 liberation procedures and about 125 of these needed stents. He claims not to have any problems with stents; the IR has to know what is the correct type of stents to use, etc.

So this is very doable. I hope you can get the repeat procedure and get well!
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
User avatar
Donnchadh
Family Elder
 
Posts: 513
Joined: Sat Jan 23, 2010 4:00 pm

Postby hoodyup » Thu Apr 29, 2010 2:48 pm

Donnchadh wrote:
I showed the IR Dr. Simka's answer to the stent migration issue


What IS Dr. Simka's answer to the stent migration issue?

A
User avatar
hoodyup
Family Member
 
Posts: 59
Joined: Wed Sep 16, 2009 3:00 pm

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service