Cece's turn

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

Postby Coolcatcarrie » Sun Feb 13, 2011 6:52 am

Congrats cece x
User avatar
Coolcatcarrie
Family Member
 
Posts: 79
Joined: Sun Jun 20, 2010 3:00 pm
Location: Near Bath, UK

Advertisement

Postby Cece » Sun Feb 13, 2011 7:12 am

NZer1 wrote: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.

It is interesting, isn't it. There is the question of why, with near complete blockage of one jugular and absolute complete blockage of the other, why did I not climb the EDSS chart like a mountaineer. I had bad jugular CCSVI but "mild" MS. Mild in quotes, because of the cogfog and severe fatigue and plenty of hindrances to full living. But nothing needed ballooning in the azygous, that is why I did not have spinal lesions and that sort of disability?

This laptop does not have a cd drive or I would share images!

I can also report more sensory improvements: my orange juice tasted so good this morning, as did the rest of my breakfast. This happened when I was pregnant, each time; food tasted really, really good. I assumed that was due to the pregnancy and hormones but perhaps it was due to vascular changes of pregnancy?

My left arm numbness is still there but different in quality. It's not a constant thing, so it's hard to make much of a change out there.

It's almost a cliche, but I did not need socks when I slept last night, which is highly unusual for me and my cold feet.
Cece
Family Elder
 
Posts: 8994
Joined: Mon Jan 04, 2010 4:00 pm

Postby Cece » Sun Feb 13, 2011 7:22 am

Donnchadh wrote: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

Thanks, Donnchadh. Three times! You are an expert by now.

I think everyone is right, resting is wise. You know me, I am (correctly) scared of clotting and what that can do to these all-important veins. When lying down, the jugulars are wide open; if I am up, the jugulars would be more closed, which might not be as optimal for healing. Some of this is theory but what else do we have to go on?
Cece
Family Elder
 
Posts: 8994
Joined: Mon Jan 04, 2010 4:00 pm

Postby Cece » Sun Feb 13, 2011 7:24 am

HappyPoet wrote:Sweet Dreams, Cece

Thank you HappyPoet :D

No dreams at all to report last night....
Cece
Family Elder
 
Posts: 8994
Joined: Mon Jan 04, 2010 4:00 pm

Postby Cece » Sun Feb 13, 2011 7:29 am

nellie wrote: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!

thanks nellie
I sure am surrounded by people who know exactly what I'm going through.
Cece
Family Elder
 
Posts: 8994
Joined: Mon Jan 04, 2010 4:00 pm

Postby Cece » Sun Feb 13, 2011 7:34 am

marcstck wrote: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…

thanks, Marc.
I saw those Diversions pictures that you just posted, you do have talent.
If anyone knows how to rest, it is me, I have had years of practice....
Cece
Family Elder
 
Posts: 8994
Joined: Mon Jan 04, 2010 4:00 pm

Postby Cece » Sun Feb 13, 2011 7:53 am

MegansMom wrote: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

Symptom free - I am so happy for her and your family. I wish her and your husband continued recovery. It is good to see you back.

Avoid caffeine - is it dehydrating? I haven't had any today but might've gone for a Diet Coke later, maybe not now that you mention this.

The countdown went fast, from my perspective, but these last few days, my nerves!!! What a relief for it to be done and for me to know and for the knowing to be good.

thanks MegansMom :)
Cece
Family Elder
 
Posts: 8994
Joined: Mon Jan 04, 2010 4:00 pm

Re: Easy!

Postby Cece » Sun Feb 13, 2011 8:00 am

Rose2 wrote: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.
Rose2

This will be hard advice to follow, I have three kids to care for. Thank you, again I am feeling the strength of this community and the advice from everyone who has been through this procedure.
Cece
Family Elder
 
Posts: 8994
Joined: Mon Jan 04, 2010 4:00 pm

Postby Flashover81 » Sun Feb 13, 2011 8:03 am

Cece, glad everything went well :D. Hope you have continued improvements. I for one would like to thank you for all you do on TIMS, with the research you do to find answers to everybody's questions. You are a super humble person and I hope for great things for you and your family :D.
Jimmy.
User avatar
Flashover81
Family Member
 
Posts: 31
Joined: Tue Apr 20, 2010 3:00 pm

Postby drsclafani » Sun Feb 13, 2011 8:10 am

Cece wrote:
Nunzio wrote:You have a weird anatomy.

Either that or I don't know what I'm talking about


the anatomy was fine. i will explain when i share the images as cece requested.

but surely you jest when you say you dont know what you are talking about. perhaps not yet ready to graduate residency, definitely progressing quite nicely!

and it is quite weird to get all the followup and advice from friends of my patient via tims posts

s
User avatar
drsclafani
Family Elder
 
Posts: 3132
Joined: Fri Mar 12, 2010 4:00 pm
Location: Brooklyn, New York

Postby Cece » Sun Feb 13, 2011 8:11 am

Ruthless67 wrote: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!!

I am grateful and happy for all of us that we have each other.

When I was being prepped for the procedure, that was when my nervousness shifted into outright being scared. I thought to myself, imagine what some of the people here have gone through when they've gone for the procedure in foreign countries where they did not understand the language or know and trust their doctor the way I knew and trusted Dr. Sclafani.
May this day come for all of us in the near future.

I am in so much agreement with you, it hurts.

It is tentative still because it is only day one and counting after my procedure, but if my current improvements last, it will be life-changing. My head is clearer. And no one should suffer from what I suffered for the last many, many years if in a single hour-and-fifteen-minute procedure it can be changed.
Last edited by Cece on Sun Feb 13, 2011 9:02 am, edited 1 time in total.
Cece
Family Elder
 
Posts: 8994
Joined: Mon Jan 04, 2010 4:00 pm

Postby Cece » Sun Feb 13, 2011 8:22 am

drsclafani wrote:
Cece wrote:
Nunzio wrote:You have a weird anatomy.

Either that or I don't know what I'm talking about


the anatomy was fine. i will explain when i share the images as cece requested.

but surely you jest when you say you dont know what you are talking about. perhaps not yet ready to graduate residency, definitely progressing quite nicely!

and it is quite weird to get all the followup and advice from friends of my patient via tims posts

s

I would not claim to know all of this yet, I think that would be the moment I'd be closed off to further learning. like a neurologist perhaps....

Thank you, Dr. Sclafani. :)
In the photo book, with thirty-five people saying thank-you in thirty-five different, heartfelt, well-stated ways, it was hard to think what to say. The scale of things in NY is grand and the scale of our thanks to you is on the same order of grandness.
Cece
Family Elder
 
Posts: 8994
Joined: Mon Jan 04, 2010 4:00 pm

Postby Kathyj08 » Sun Feb 13, 2011 8:45 am

Congratulations CeCe!
Thank you for all your research and all you do on tims!
Hopefully the neck is feeling a little better today. I recall mine being sore (no stents) for a couple of weeks. It slowly got better but I still get odd tight feelings in it from time to time and my procedure was over 6 mo. ago.
I hope you continue to see more and more improvements!
User avatar
Kathyj08
Family Member
 
Posts: 74
Joined: Fri Jan 08, 2010 4:00 pm
Location: Indiana, USA

Postby jozee » Sun Feb 13, 2011 9:13 am

Congratulations Cece!!!
Enjoy the clarity and brightness of colours. I experienced this as well. It was very emotional and is again reading your experience.
Rest, and hydrate.

Thankyou to Dr. S for all that you have done and do for us. You are a shinning light in all of our lives.

Jozee
User avatar
jozee
Family Member
 
Posts: 27
Joined: Thu Dec 03, 2009 4:00 pm

Postby KikiT » Sun Feb 13, 2011 9:15 am

Way to go CeCe!!!! Rest up ...and yes coffee is dehydrating....when I need a blood test, veins are hard to get to when I drink coffee. Nurse told me to drink water before blood was drawn and if need, coffe,,,later.
Really works, one poke, success,,,instead of 3.

Take a few days off, we will be here when you get back!! Happy Valentines day !!

Kiki
User avatar
KikiT
Family Member
 
Posts: 55
Joined: Tue Oct 13, 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