Cece's turn

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

Postby Donnchadh » Sat Feb 12, 2011 8:44 pm

Cece wrote::oops: thanks captboo

now i need advice from those who have been thru this! My neck is getting more sore, how long has that lasted for others who had the very sore necks?

just noticed it is not just the colors that are brighter but whites are brighter as well. No idea yet if my fatigue has been affected, i am tired from the procedure itself.


Cece,

Trust me on this, from someone who has done this three times already, you need to rest and sleep. And drink water! Not soda pop, coffee, etc. but water. I don't why, but water really seems to be essential in recovery.

You have a lot of people supporting you; you will be better soon.

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

Got MS?.....Get Liberated!
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Postby HappyPoet » Sat Feb 12, 2011 8:57 pm

Sweet Dreams, Cece
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Postby nellie » Sat Feb 12, 2011 9:09 pm

Cece- So glad it's over & that was impressive blockages. I did have neck sensitivity. Never bad but 2+ months later I feel the sensitivity at times. I'm sure stretching the veins is the culprit but think it is natural to feel some sensitivity. Take care!
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Postby marcstck » Sat Feb 12, 2011 9:18 pm

So glad that everything went well, cece. Now, follow everyone's advice, and rest up. Even though the procedure is minimally invasive, your body has been through some trauma, and needs the restorative power of sleep and rest to heal properly.

Looking forward to reading your progress reports, but your first priority is to do some postprocedure recovery. We'll all still be here if you take a day or two for yourself…
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Postby MegansMom » Sat Feb 12, 2011 9:30 pm

OMG ! How did I miss this ? Dear Cece, I am so thrilled you finally went for it! And by Dr Sclafani too!

I am sorry I have not been on here, ( long story- hubby's had a AAA repair surgery and major complications- he is now well on the road to recovery)
And I missed your plan and count down...... But maybe that's a good thing. It's kind of nice to come in on the operative day and not have the waiting! but I am sorry I didn't get to help with the gift for DrS.

Rest up girl, you sure deserve it. as for the vivid color changes, my daughter had the exact same experience. She knew she felt different but had to wait until all the drugs wore off. But she hardly slept her adrenalin level was so high.

She says she sees in HD now. and unbelievable as it sounds her vision which was impaired is now better than 20/20. This was such a change that he neuro double checked it.

Meg is now in month 5 and completely MS SYMPTOM FREE! She recently had an MRI and I can't wait until she has her next appointment and the results.

My advice is the same as everyone else. Prop yourself up in something comfy and rest . Get a good nights sleep. Stay hydrated. Avoid caffiene.
Take your pain pills for that neck discomfort and rest girl!

I hope you see new improvements everyday.

Lots of good vibes warm vibes sent your way from sunny FL.,

Cat

MegansMom
Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Easy!

Postby Rose2 » Sat Feb 12, 2011 9:42 pm

Cece,
I am sure you are asleep now so when you awake you can read my advice...
REST more than you think is necessary.
A few weeks after my Liberation I reached out for the car door to slam it shut and youch! it pulled something in my neck/shoulder and I was in PT for a few weeks. Small movements that I didn't think to be wary of did me in and I had trouble lifting my arms above my shoulders or head for a while.
All good after a short time, but don't lift stuff, no clothes washing, etc.
It will all be good but please let everyone wait on you for a few months.
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Postby Ruthless67 » Sat Feb 12, 2011 10:14 pm

Hello again Cece,

Just had to say that Donnchadn’s advise on the water is spot on. Take it from a Pro who‘s been around that block three times!! Also if you do take pain pills that have codeine in them, remember that they will cause constipation and that makes the water even more important, that and getting plenty of fiber in your diet right now. Snack on an apple every evening, it helps.

And to all of the folks giving such wonderful advise, you are all awesome. Bless Tim’s for bringing us all together as a community. What a support system we have!!

May this day come for all of us in the near future.

Lora
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Postby simone » Sat Feb 12, 2011 10:43 pm

So happy to hear this wonderful news Cece. You are amazing. Your ability to function to the level you have been, with these huge blockages is awesome! Can't imagine how you will use your abilities next.
Thank you and Dr Sclafani for all that you have done.
Ditto on the previous advice and would like to add that I found it helpful to support the head when you move so as to leave the neck muscles alone and especially riding in the car as all the bumps require a lot of neck muscle activation.
Wishing you the best lasting results.
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ccsvi

Postby blossom » Sat Feb 12, 2011 10:50 pm

happy to hear everything went well. rest and heal.
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Postby Algis » Sun Feb 13, 2011 12:01 am

Take good rest Cece; we'll be here :)
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Postby NZer1 » Sun Feb 13, 2011 1:48 am

So pleased to hear the outcome. Thanks Dr.S.
Take care Nigel
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Postby Nunzio » Sun Feb 13, 2011 2:14 am

drsclafani wrote:
Nunzio wrote:Hi CeCe,
I am glad you are still alive and well.
I thought Dr. Sclafani would have allowed you to take your laptop in the surgical room with you. Do not worry; the vivid color you are seeing now are due to the anesthetics used during the procedure.
Hope you will have long lasting improvements.
Stay warm, we are all expecting to learn the detail of the procedure from you soon.
Best wishes


nunzio
what anesthetics would they be?

I was implying she was tripping and having a psychedelic experience from Fentanyl which is a potent opioid narcotic.
In reality I was joking as I know a lot of people report improvement of their vision after the procedure. Sometime it is difficult in these posts to understand when somebody is joking; next time I will place a happy face after it. :lol:
Cece wrote:
My azygous too is of interest, it was enormous. It would seem to have been recruited to help drain the brain as the blood was going down the verts then through the azygous instead of directly through the jugulars.

He was able to use fairly large balloons. I believe my right was 16 mm as measured by ivus, so he oversized by 2 mm with an 18 mm balloon, which showed two waists if I overheard correctly. On the left it was smaller, but not by much.

You have a weird anatomy. In most people the vertebral veins drain directly into the brachiocephalic (innominate) vein and therefore cannot overload the azygous. Were your renal and iliac veins OK?
I know you saw two waists in the balloon, but did you see any shoulders?
I am glad the procedure was successful and you are already experiencing improvements.(not that we were expecting anything less from Dr. Sclafani.)
Best wishes again
Everybody here brings happiness, somebody by coming,others by leaving.  PPMS since 2000<br />
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Postby TMrox » Sun Feb 13, 2011 4:47 am

Cece, awesome that you had treatment. You have a fantastic doctor so probably he has already given you all the post-recommendations one can need.

As others have said, rest is basic, drinking plenty of water, also not to forget to take the blood thinners.

I had a sore neck for about two weeks but then it gradually faded away. I remember that the sore neck was particularly worse the first two, three days but then it was just slighly noticeable, not painful.

Happy flow :)


Rox
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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Postby NZer1 » Sun Feb 13, 2011 6:16 am

Hi Cece ,like Nunzio I am very interested in the finding, with your flow pattern. It would appear we are on another learning discovery. If the flow has diverted there are possibly insights to other flow anomalies that could be present in others and with symptom type groupings.
All in all allot to assimilate so soon, though I am sure that Dr. S will be pondering the finding for discussion. :wink:
Your contribution to science is profound, thank you.
Regards Nigel
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Postby Cece » Sun Feb 13, 2011 6:31 am

Nunzio wrote:You have a weird anatomy.

Either that or I don't know what I'm talking about
What do you think, with an exceptionally wide azygous, where is the flow coming from? It was "like an aorta," to quote Smitty.
In most people the vertebral veins drain directly into the brachiocephalic (innominate) vein and therefore cannot overload the azygous. Were your renal and iliac veins OK?

Yes, I believe those veins were ok. He showed me the ascending lumbar, it looked pretty good.
I know you saw two waists in the balloon, but did you see any shoulders?

this made me laugh and then say, "ow, my neck," last night.

Tylenol has been working to mitigate the neck pain. Right now, lying down and resting despite my restlessness, my neck is feeling good.

Right now, I have the lights out except a hallway light because my daughter is still sleeping. With only a little light like this, the colors are not oversaturated, this is more normal to me.

My cogfog has changed in quality and quantity. Greatly diminished, which is what I mean by quantity, but quality would be harder to explain. Right now I could do a much better job of hiding my cogfog and relaxing about it, which are both important to me.

I've said "right now" three times in the last three sets of statements, it is apparently important to me to convey that this is not how it was and I don't know if it is how it will be but only that these are my impressions right now.

More later.... ;)
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