DrSclafani answers some questions

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

Re: DrSclafani answers some questions

Postby HappyPoet » Fri Mar 23, 2012 9:44 pm

Get well soon, DrS!
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Re: THISISDIEULAFOY.COM

Postby NHE » Fri Mar 23, 2012 10:52 pm

drsclafani wrote:I was discharged the next day. I am ok, but really tired because of severe anemia. I have a lot of blood to make in my body to get back to normal. Unfortunately, my doctor advised not to travel because rebleeding while in the airplane could be fatal.I thought about following many of your lead and not follow my doctors' instructions but i feel really tired now and won't travel. So disappoiinting not to present all my lectures at SIR. It was to be a crowning moment of my career.

I want to thank you all for your wishes. it meant a lot to me.


any questions?


Yes, can you use Skype to present your material for SIR?

I'm happy to hear that you're going to be ok. Please rest and take care of yourself.

NHE
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Re: THISISDIEULAFOY.COM

Postby pelopidas » Fri Mar 23, 2012 10:59 pm

NHE wrote:
drsclafani wrote:I was discharged the next day. I am ok, but really tired because of severe anemia. I have a lot of blood to make in my body to get back to normal. Unfortunately, my doctor advised not to travel because rebleeding while in the airplane could be fatal.I thought about following many of your lead and not follow my doctors' instructions but i feel really tired now and won't travel. So disappoiinting not to present all my lectures at SIR. It was to be a crowning moment of my career.

I want to thank you all for your wishes. it meant a lot to me.


any questions?


Yes, can you use Skype to present your material for SIR?

I'm happy to hear that you're going to be ok. Please rest and take care of yourself.

NHE



Our one of a kind Doctor suffered a really rare (and French!) condition

NHE and I thought about the same thing
There is always conference over internet

Please get well soon, Dr S!
getafix
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Re: DrSclafani answers some questions

Postby ada » Sat Mar 24, 2012 1:40 am

our beloved dr Sclafani
best wishes for quick and safe recovery.
do not forget dr, follow the drs advises, you know it better than anyone.
thank you very much for informing us ,we were all thinking of you!!!
all the planet is with you.
agni and mixalis
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Re: DrSclafani answers some questions

Postby Cece » Sat Mar 24, 2012 6:17 am

How long is the fatigue expected to last? It must take awhile for blood to restore itself.

Advice for chronic fatigue:
The advice I've heard is to live within your limits, which is ridiculous, because then you can't do a dang thing.
Doing everything else right, such as nutrition, sleep, low intensity daily exercise, can make a small difference, and is worth it.
Acceptance of fatigue is better than wasting emotional energy fighting it.
Prioritize, prioritize.

What a frightening couple of days. So glad everything turned out well.
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Re: DrSclafani answers some questions

Postby bestadmom » Sat Mar 24, 2012 6:53 am

I'm sooo happy you are ok. Listen to your body and take care of it, my good (great) doctor. There's a world of family, friends, and patients who love you. Rest up and force yourself to relax.
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Re: DrSclafani answers some questions

Postby drsclafani » Sat Mar 24, 2012 7:07 am

Cece wrote:Very relieved to hear you are home and healing.
Stay away from the gabagool and the baby aspirin!


While data shows that a Dieulafoy's bleed has been non-statistically associated with NSAIDS but no association with low dose aspirin has been shown.

But i am going to skip the aspirin for a while to let my platelets get a bit stickier
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Patient contact: ccsviliberation@gmail.com
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Re: DrSclafani answers some questions

Postby Needled » Sat Mar 24, 2012 7:14 am

So happy to hear you're doing better. Rest up and try to take it easy.
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Re: DrSclafani answers some questions

Postby drsclafani » Sat Mar 24, 2012 7:28 am

THEGREEKFROMTHED wrote:Was this something that suddenly ocurred and asymptomatic or were
You suffering over time? Will you have to
Cut down on gnocci?


one prior event, no diagnosis was made, no hospitalization was necessary.
perhaps i should add more tarama and skordelia to my diet
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Re: THISISDIEULAFOY.COM

Postby drsclafani » Sat Mar 24, 2012 7:29 am

NHE wrote:
drsclafani wrote:I was discharged the next day. I am ok, but really tired because of severe anemia. I have a lot of blood to make in my body to get back to normal. Unfortunately, my doctor advised not to travel because rebleeding while in the airplane could be fatal.I thought about following many of your lead and not follow my doctors' instructions but i feel really tired now and won't travel. So disappoiinting not to present all my lectures at SIR. It was to be a crowning moment of my career.

I want to thank you all for your wishes. it meant a lot to me.


any questions?


Yes, can you use Skype to present your material for SIR?

I'm happy to hear that you're going to be ok. Please rest and take care of yourself.

NHE


No time to do it. As I recover I will try to make a video of a lecture or two and put on line
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
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Re: DrSclafani answers some questions

Postby Robnl » Sat Mar 24, 2012 7:56 am

Glad to hear from you doc, take your time to get 100%.We need you!
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Re: DrSclafani answers some questions

Postby drsclafani » Sat Mar 24, 2012 8:21 am

Cece wrote:How long is the fatigue expected to last? It must take awhile for blood to restore itself.

Advice for chronic fatigue:
The advice I've heard is to live within your limits, which is ridiculous, because then you can't do a dang thing.
Doing everything else right, such as nutrition, sleep, low intensity daily exercise, can make a small difference, and is worth it.
Acceptance of fatigue is better than wasting emotional energy fighting it.
Prioritize, prioritize.

What a frightening couple of days. So glad everything turned out well.

hard to get good data for recovery from blood loss. I am a bit surprised that discharge instructions did not include any considerations regarding recovery of iron stores after acute blood loss. It seemed like every physician was focused on his specialty and no one was advising about how to cecover from the blood loss. the literature was pretty sparse and unclear.

Best I can understand is that it can take up to six months to recover from such a blood loss anemia.

fatigue is not going to be something i will tolerate. I have a call into a nutritionist for advice
Salvatore JA Sclafani MD
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Re: DrSclafani answers some questions

Postby ErikaSlovakia » Sat Mar 24, 2012 8:52 am

Dear Dr. Sclafani!
Best wishes for quick and safe recovery!
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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Re: DrSclafani answers some questions

Postby Cece » Sat Mar 24, 2012 9:02 am

Six months is a long time. I'm assuming that will be a gradual recovery, and that you're at your worst right now, and it probably feels that way. Hope the nutritionist has suggestions that work.
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Re: DrSclafani answers some questions

Postby THEGREEKFROMTHED » Sat Mar 24, 2012 9:47 am

Two words. Greek salads. Lots of them with beats and cukes and the like. Learn from terry wahls and eat a shit load of kale. You will be the iron man. Juice. Go to the middle eastern place and get carrot celeray beat and mix in a few other greens. That six months will cut in half. Olive oil and tons of garlic. You have to get
Back to your roots what your ancestors ate...A good multi vite wont hurt. Shit call dr oz hes around the corner...
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