Posted: Sun Feb 13, 2011 5:52 am
Congrats cece x
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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?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.
Thanks, Donnchadh. Three times! You are an expert by now.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
Thank you HappyPoetHappyPoet wrote:Sweet Dreams, Cece
thanks nellienellie 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, Marc.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…
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.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
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.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
the anatomy was fine. i will explain when i share the images as cece requested.Cece wrote:Either that or I don't know what I'm talking aboutNunzio wrote:You have a weird anatomy.
I am grateful and happy for all of us that we have each other.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 in so much agreement with you, it hurts.May this day come for all of us in the near future.
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....drsclafani wrote:the anatomy was fine. i will explain when i share the images as cece requested.Cece wrote:Either that or I don't know what I'm talking aboutNunzio wrote:You have a weird anatomy.
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
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