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PostPosted: Wed Mar 16, 2011 12:49 pm
by Cece
One Month update:

The short answer is that I am doing well! The long answer is as follows:

My energy levels are unpredictable. There are days when I have a lot of energy and there are days when I don't. Yesterday was a don't day. I felt tired and a little out-of-sorts about it, but I was still getting things done and keeping up. In a comparable day from before my procedure, I would be ending the day far behind in all the things that needed doing, instead I ended it with everything caught up or ahead. I'd prefer to have that plus feel great, but I get that some days too.

My vision prescription remains improved.

My appetite is still increased. It is easier to eat and everything tastes better.

My dreams are very vivid, it feels very healthy. If before my dreams were a black-box production, now they are Broadway.

I am still sometimes surprised by colors. The other day, when I saw a man wearing a blaze-orange hunter's jacket, I laughed out loud. (I was in my car, he did not hear me.) My dad has hunted all my life, I've seen blaze orange before, but this orange blazed and blared. Never saw such an orange before.

When I am going up stairs, I am thinking about how easy it is to go up the stairs, instead of thinking that I hate stairs and getting mad about my foot drop. This is a big change and it did not happen in the first week or two.

My posture is improved. I look better too.

Bladder retention is improved. I first noticed this six days post-procedure, but it has continued to get better. I am not using the bathroom as frequently as I was before. I don't have that feeling like I could go again five minutes after having gone. I still use the bathroom more than most people, but I can live with that, it is a definite improvement.

I sometimes have neck pain still on my left side only. It may be straining of the muscles, as I can bring it on by overdoing. I will be seeing Dr. Cumming this next week for a quick ultrasound of my jugulars to check for clots. It will be a relief to get that done, it frightens me to have heard some of the stories I hear here.

Numbness in my left arm is still gone. Some tingles there since the numbness left, but not in the last week that I can remember.

One of the easier ways to describe how I'm doing now is that more is possible. It's like being on an extended good streak. I'd had good streaks before, but not much in the last year, and even in the last few years it would be a good streak of a day or two. (And I valued those days!)

More later, if I can think of more....

PostPosted: Wed Mar 16, 2011 2:13 pm
by fogdweller
All good news, great to hear, and well deserved, of all people.

Let us know about thrombosis follow up.

PostPosted: Wed Mar 16, 2011 2:28 pm
by aliyalex
hello cece,

I was treated by Dr. Sclafani February 4. I have quite a lot of discomfort in both jugulars. I went today for an ultrasound and the tech actually disclosed her findings. she found nothing that obstructed the flow. I was very relieved and a little bit surprised. She said that the main symptom that I would have experienced would be swelling, a lot of swelling.

i just wanted to weigh in on that. I'm definitely glad that I checked it out. aliyah

PostPosted: Wed Mar 16, 2011 5:09 pm
by Cece
Hi Aliyalex! That is helpful, thank you. That must be a relief, good to hear the flow is there. But you still have a lot of discomfort in both jugulars? Some people have said they've had that for months. Did the technician think there would still be swelling?

Other than the pain, how are you doing since the procedure? Mine was so soon after yours. Hope you are doing well.

Fogdweller, thank you. Tuesday is the appointment, I'll let you know how it goes. I'm not too worried. If I hadn't read and memorized every possible complication that others have had here on TIMS (and we cast a pretty wide net!), I might not be going in, since Dr. Sclafani had changed to recommending a 3 month follow-up instead of a 1 month follow-up. I think though that since I have a local doctor in Dr. Cumming and he's a good one and I've read the stories where a person finds out about a clot three months post-procedure and it's too late, it is a good idea just to get it checked.

A friend asked by pm how to get started with Dr. Sclafani. Here's their website with the registration form at the bottom and the email to send it in:

PostPosted: Wed Mar 16, 2011 7:54 pm
by Drury

Great update thankyou!

Good luck Tuesday.

PostPosted: Wed Mar 16, 2011 8:33 pm
by HappyPoet

I guess I should have read your thread before I sent that PM, lol.

Seems we are all worried about thrombosis. :(



So happy that you have flow but sad that you still have some pain... I hope this is easily manageable for you.

You're a lucky duck -- I've never had any kind of tech even so much as hint as to what they've seen.



Your avatar photo is terrific :)

PostPosted: Thu Mar 17, 2011 9:25 am
by Cece
HappyPoet wrote:Cece,

I guess I should have read your thread before I sent that PM, lol.

Seems we are all worried about thrombosis. :(

Thanks, HappyPoet! I like hearing from you here and I like hearing from you by pm, so all is well.

When I try to think down the road what changes there might be in CCSVI treatment and what we might be doing now that five years from now we might be shocked by, the lack of follow-up care is high on the list as a possible jawdropper. People get treated and it's like, good luck, hope it goes well, without knowing what steps should be in place to assure that it does go well. Standardizing follow-up care, along with availability of follow-up care, are high priorities.

Your avatar photo is terrific

agreed, very nice :)

PostPosted: Thu Mar 17, 2011 7:02 pm
by Cece
More to the update:

I haven't talked much about shortness of breath. This improved during the procedure, after my right jugular (80% stenosis) was ballooned, before my left one was ballooned. Dr. Sclafani suggested at the time that it could be vasospasm. Of the diaphragm, I think. To me I had thought of it as hypoxia-related. Reading stories out loud, for example, involves a lot of breathing out and not as much breathing in. Blowing up balloons for a birthday party will do the same thing. The instructions for breath-holding during the doppler ultrasound and the procedure itself are another example. All of these made me light-headed, they are challenging.

Now that I think about it, another one is the specific breathe in/breathe out instructions that were in Pilates, back when I was taking group Pilates. I was fine doing the exercises, but not when I tried to synchronize with the long breaths.

Reading bedtime stories in particular is something that I've no longer been able to do as the kids are getting older and the stories longer. If I read, I then have to go rest and recover. It's the same need to rest that can be brought on after I've been busy doing things, but instead it's brought on by lying down or sitting with a kid reading stories.

Previously, the limit was two stories for my younger two and that was at a sacrifice, it would hurt me to read that long. For my older child, with the dreaded chapter books, I couldn't even make it one chapter without feeling tired and pained from it. The sad thing is that my husband was able to take over doing the bedtime stories for the younger two but coudn't fit in time for our eldest so he had her reading to herself in bed, which was ok. But as I've been improving, I am in there with her. Four chapters is my new limit.

Last week, I read to her three nights in a row. On the fourth night, I went grocery shopping. When I came back, she'd written (with Crayola window markers) on the entry window, "I Miss My Mom," and on the bathroom mirror, "I Love Mommy."

PostPosted: Fri Mar 18, 2011 10:16 am
by Cece
Inclined bed:

I'd had my bed inclined, per Andrew Fletcher's IBT theory, for the past year. But, immediately after my procedure, I lowered it to a flat bed again, so that my jugular veins would be at their widest while I was sleeping because I was concerned about clotting and this would give the best flow. Two days ago, since I'm more than a month post-procedure, I put the bed back on an incline. (Technically, my husband put it back. Heavy lifting and all. Thanks dear....) I'm going to keep it, I feel like it is good for my sleeping and my energy levels. It might also help with the concern Cheer rasied today, if valves are destroyed and there is more of the other type of jugular venous insufficiency reflux or backwash.

I am using blocks of wood but they have the bed risers on Amazon: ... B001AYWV52
The thing is to just two, not all four, so that only the head of the bed is lifted to make the incline.

PostPosted: Fri Mar 18, 2011 10:29 am
by aliyalex
Hello cece,

Dr. Sclafani worked on me for three hours and he said that he couldn't do it all in one sitting, that I would have to come back in a few months or would be too much work at once.

most of what we talked about during the procedure is a blurr now. I have to review my records and unfortunately they were mailed to my home in Colorado. I am staying in Pennsylvania right now and will hopefully get the records this week in the mail.

I remember a few things like Dr. Sclafani saying I had something like MT, but not MT exactly. I remember him saying I might need a stent in my azygos at some point. I don't remember much else, but I'm very curious.

I noticed that my left hand is a bit stronger. My dreams are very vivid. My fatigue might be a little bit better. My right foot continues to be very cold and my left foot is warm. I forgot to tell the doctor that.

I've had some other complications that are probably not related. I've been having much difficulty breathing and I just found out that I probably had emphysema. This is a confusing to me since I am not a smoker nor have I been around smokers very much. Breathing treatments are helping me to breathe were efficiently and happy poet sent me an article from pubmed about one of the medications that I am on- albuterol has shown positive results with MS. how she found that, I have no clue.

I hope to have more positive results to report over time. Take care y'all.

PostPosted: Sat Mar 19, 2011 6:57 am
by Liberation
I am just wondering if anyone has any experience with destroyed valves?
I read in a different thread posted by jenny that he had some problems with it. Quote:"....I have had the valves removed and was told by Dr. Arata not to have my head bent down for long. Now, 2 months post procedure, the other day I was washing my hair at the side of the tub and had my head bent down under the tub for a couple minutes. When I stood up, my eyes felt pressure and fullness and had a pain behind them, much like pre-procedure. It has been about 5 days since I did that, and my head still feels "funny" and full and like I have been standing on my head. I also feel tired and just foggy. Each day does seem to get a little better. " ...I know that it has been said that 15% of people have no valves, but I would have also some concern about it and I am just wondering if there is anything that we should avoid if our valves are destroyed.

PostPosted: Sat Mar 19, 2011 8:48 am
by HappyPoet

So glad to hear your breathing is improving! :)

The albuterol article from pubmed came to me in a free, automated email from MyDailyApple which offers many setting options for medical news. :)

PostPosted: Sat Mar 19, 2011 8:51 am
by aliyalex
wow. interesting timing.

PostPosted: Sat Mar 19, 2011 4:32 pm
by fogdweller
A bit off topic, but how can one contact Dr. Sclafani's office for possible appontment?

Does anyone know if he has opened his branch in the San Diego area?

PostPosted: Sat Mar 19, 2011 6:27 pm
by Cece
A friend asked by pm how to get started with Dr. Sclafani. Here's their website with the registration form at the bottom and the email to send it in:

The Del Mar Vein Clinic is part of his network, is that the one you're thinking of?

New improvement noticed this week (one month and one week post-procedure):
Memory improvements. Just one example, tonight while cooking dinner, I could read the recipe to know what four spices were needed in what amounts (curry, cumin, salt and pepper), find them out of the cupboard, and add the right amounts directly without going back to find out what the amounts were again. Normally I have to check back to the recipe in between each and every spice to find out what amount they should be. Memory impairments was something I really noticed after my relapse that got me diagnosed five years ago. It's spooky to notice improvements. I love it but it's spooky. It drives home what I had lost, to have some of it regained.