Our trip to the local vascular neuroradiolgist

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

Postby Lyon » Thu Sep 02, 2010 3:01 pm

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Last edited by Lyon on Sun Nov 20, 2011 6:34 pm, edited 1 time in total.
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Postby Johnson » Thu Sep 02, 2010 3:36 pm

Hi Andrew,

Check your PMs.
My name is not really Johnson. MSed up since 1993
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Postby prairiegirl » Thu Sep 02, 2010 3:47 pm

I am so sorry that you are facing such adversity-- my heart goes out to both of you! I am hoping that there will be some help or improvement on the horizon for you-- take care, and hang in there!
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Postby bestadmom » Thu Sep 02, 2010 4:11 pm

Andrew,

I am so sad to hear this about Sharon, and of course you too. Dr. Sclafani just left for China to be honored by their association of interventionalists for going there for the past 20+ years to teach. He's gone for a week.

He is connected to doctors treating CCSVI everywhere and collaborates like no one I've ever seen.

If you cannot reach him next Thursday (send him a pm), please pm me. I have his cell, personal email, etc. I will intervene on your behalf.

Michelle
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Postby hoodyup » Thu Sep 02, 2010 5:06 pm

Lyon wrote:Although I'm sorry about her lost hope, I wasn't aware that you guys had gotten her irregular heartbeat issue straightened out.

Maybe that's something of a silver lining?


Thanks for the positive thoughts. Her PCVs are still there, but the cardiologist advised the IR to have an anesthesiologist in on the procedure to administer some better drugs to calm them down temporarily. They are intermittent and benign, so they went ahead with the venogram.

Johnson (NR): I will respond to your thoughtful PM when I get a little more time. You have been a great friend to us by sharing your own struggles and ideas with us. Thank you.

Prairiegirl: Yes, hanging in there is what we have to do. Some days are harder than others. Thanks for caring.

Bestadmom: I will definitely PM Dr. Sclafani and try to get him involved. I wish we lived in NY. If we have to travel there it will be the adventure of a lifetime. I admit I am stumped, but as a mechanic, I see misdiagnosed or underdiagnosed problems all the time. It can happen, even to a 30 year veteran. It doesn't mean the car can't be fixed, it just needs someone else to look at it. Dr. Sclafani seems to be at the forefront of CCSVI and I trust his judgement. I don't know if Sharon will want to go down this road any further as it seems like a dead end. But she did say we need to save the CDs for some possible future use. If ever there was a case for the good doctor, this is it. Thanks for helping out, I sure do appreciate it.

Andrew
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Postby ozarkcanoer » Thu Sep 02, 2010 5:16 pm

hoodyup,

I want to tell you what a good husband you are. I also want you to tell your wife that I have been there too. I have no physical disabilities from my MS and I feel like the luckiest person on this board. But I understand the anger and the temper tantrums and the crying. My dear husband has had to put up with me for 4 years of this now. I also understand the endless hours of Farmville !!! The fatigue and pain I have endured makes me appreciate what others are also enduring. Playing computer games helps pass the hours when there is little else you can do. So be glad she can play Farmville. I wish I could sit down and talk to her if it would help. Just let her know we care.

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Postby dania » Thu Sep 02, 2010 5:24 pm

hoodyup wrote:Dear TIMS members:

It has been almost a year since I read about CCSVI on this website. In that time, Boopie has gone from having the no hope for stopping her progression to slight hope with reservations to brief joy at short term results and back to zero hope.

Let me explain. She was scanned for CCSVI in March with Doppler and MRV. Stenosis was found in the right IJV and venoplasty was performed in April. She experienced some short term improvements which disappeared after 1 week. It has taken us until Sept. 1 to get her back in for re-evaluation. We we certain that she re-stenosed, however, the IR performed another catheter venogram and didn’t detect any stenosis or lack of flow in the IJVs or the azygos. He even used a different probe for the azygos which he said allowed him to get into the curvy part. She was put under heavy sedation for the procedure and feels terrible today. The fact that he found nothing to angio makes me feel terrible. Worse than terrible, because this was the only thing we had to pin any hope on. It was logical and made sense. Now, nothing does.

I have a CD of this procedure and of the last one. I would like to email it to Dr Sclafani, but don’t know where to send it or how to do it in a PM. I don’t know if anyone can really say for certain what is going on with Sharon. I just know that since the relapse she is much worse than before. She can no longer stand at all. Her cognitive abilities come and go. She is angry at me most of the time. When she is not angry she is crying. If neither of those, then she is playing Farmville 24/7. I think she gave up a long time ago. Now that we were shot down at the IR, I don’t know what to do, what to obsess over, what to pursue. She doesn’t need to chase after every new fad or idea in the MS world, we have been down that road. But one thing is certain, if we do nothing, she will only get worse. We’ve tried that, too. So my friends, life goes on, however briefly. Just make sure you are all appreciating every day you have with your loved ones. Thanks for all your support over the past year.

Andrew

I can relate to your wife 100%. I had the procedure. Had improvements that lasted 1 week. Second procedure showed I had blood clots in the stent and had restenosed in all 3 veins. No improvements with the second one. Much much worse. I know that anger and the crying. Because I too do it every day.
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Postby hoodyup » Thu Sep 02, 2010 6:01 pm

Ozark: I really feel for you, because when this first came out you were very excited and optimistic about it. For you to see no improvements seems so unfair. I know life isn't fair or unfair. We just have to live it, however it is dealt to us, with grace. And I'm not knocking Farmville, I know the comfort of some simple pleasures and would never discourage her from doing anything that distracts her from her predicament.

Dania: I don't know what can be done for people in our situation. To have the "fix" not help and instead make you worse is more than frustrating. It is crushing and maddening. It is ok to feel all the things you do and yell and scream if you have to. Then, just try to collect yourself and go on living, cause that's what we all gotta do, like it or not. So much not to like, it is easier to just pick one thing that is still going ok and be thankful for it. It's all I got right now, but sometimes it gets me through. If I were in my wife's shoes I'd probably be a horrible, mean person all of the time. She's really not that way, but she gets overwhelmed very easily and I can see it happening, but can't do anything to stop it. Please accept my sympathies, you and the many others for whom CCSVI has not panned out yet. I don't think it's time to give up, but waiting for answers, well, that is sure getting old. Hang in there.

Andrew
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Postby Johnson » Thu Sep 02, 2010 7:47 pm

I'd probably be a horrible, mean person all of the time


I asked my 3.5 year-old if he was sad that I was going to be away in Poland again, and he said "No. You won't be as grumpy anymore." It's hard not to be grouchy when you live deep in your brain-stem and everything sucks - and I can still walk and see and do dishes and go to the park sometimes. Anger is fear (with the exception of righteous anger). I am sure that Boopie feels back to square one after all she has been through. There was no hope before CCSVI, and that is a frightening prospect to anyone. I don't know how I would feel if I had never had any relief from the procedure. If anything, I have greater hope now.

Hang in there.

/end: hollow words
My name is not really Johnson. MSed up since 1993
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Postby CRHInv » Thu Sep 02, 2010 9:02 pm

I am so sorry this is unfolding like this for you guys. I have been wondering about you, so I am really glad you checked in. I am especially glad you checked in because while I know it isn't any fun writing about the things that aren't what we hope for, there is no better place to look for help and support. I hope you follow-up with Dr. Scalfani and/or Michelle. I think they are going to be very helpful.
Please know we are thinking of both of you!
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.
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Postby Milkman » Fri Sep 03, 2010 7:15 am

Andrew

I cried when I read your last post. I don't have any words to make anything better all I can say to you from one watcher of MS suffering to another is to know that you are not alone. Even in those lowest moments know that people whom you have never met hold you in their thoughts and are sending you enough of their strength so that you can find the next ray of hope.

Hugs
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