My first neuro appt since procedure

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

My first neuro appt since procedure

Postby msgator » Fri Dec 03, 2010 6:19 pm

was exhilerating...

I had the procedure to open both my jugulars on Oct 15, with my neuros blessing.

Today he commented that

I don't widen my stance as much as I used to

My gait is smoother (less leg swinging, less mechanical)

The tremor in my right hand is gone and the movement smoother.

It is so wonderful to have an outside person confirm the improvements I have felt. He is also going to get me some physical therapy to help me to learn to walk more normally again. I love my neuro.

:)

Ann
always look on the bright side of life

Veins opened 10/15/10. RIJV still on the small side. Feeling much better.
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Postby prairiegirl » Fri Dec 03, 2010 6:26 pm

Great to hear yet another positive report! Hope your improvements continue; your neuro sounds like a 'keeper'.
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Postby 1eye » Fri Dec 03, 2010 8:09 pm

This is good news to me because: at one point I asked my neurologist how she knew I was progressing. Her response was: your stance is wider. I had not been aware that it was. I had been entirely unconscious of my stance, but after having it pointed out, I had to admit she was correct. Now, your neurologist tells you your stance is narrower. Was this a surprise?

If your neurologist pointed out the opposite, and you had been unaware of it, then placebo cannot have confounded the observation. The only 'skeptical' explanation can be that coincidentally, you had a spontaneous remission. In my case, remissions were in my far distant past by the time I had the procedure. I think explaining things that way is grasping at straws. Do you agree?
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby bluesky63 » Sat Dec 04, 2010 7:02 am

I am so happy for you! :-) Not only to have the improvements, but to have the support and confirmation from your neuro! I hope the PT goes great. :-)
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Postby msgator » Sat Dec 04, 2010 12:32 pm

I "knew" I widened my stance because it had been pointed out to me. It was completely unconscious I guess in relation to deteriorating balance. I was surprised by his comment because I don't think about it.

It is interesting to think about what a neuro exam doesn't show such as the improvement in my typing ability on my right hand or the fact that my handwriting all of a sudden is much more legible. Or that life is simply easier because every day tasks take less effort.

My neuro says I was one of only two patients to ask about CCSVI the other person is going to Albany and she is much more progressed than I am. He does not hold out much hope for her. I hope he is proven wrong.

The question for me now becomes if opening my very small (8mm in diameter at its largest) is good enough or will something (like a stent to get it to be more in the normal range will be necessary.

I know my journey is just beginning.....I still have better and worse days.

Ann
always look on the bright side of life

Veins opened 10/15/10. RIJV still on the small side. Feeling much better.
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Postby thornyrose76 » Sat Dec 04, 2010 1:32 pm

You are very lucky to have such a forward thinking neuro!
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Postby CRHInv » Mon Dec 06, 2010 5:22 pm

Ann, I am so happy for you. I also have a great neuro and find much comfort in his support. I just had an appointment with him. I took my MRI from my one year follow up with Dr. Dake. He was really excited. His eyes literally twinkled as he talked to me. In his exam he found improvements in my reflexes since the last time he saw me, which was about two months post treatment. I might have to write up this experience to share here, along with my one year follow up with Dr. Dake. We'll see. Anyway, I am so glad you have this support. I know it will continue to mean a lot to you!
Take care,
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby prairiegirl » Mon Dec 06, 2010 7:30 pm

CRHInv wrote: I might have to write up this experience to share here, along with my one year follow up with Dr. Dake. We'll see.

I hope you will. I find reading results and experiences (especially those after a period of time) to be very interesting, and I'm sure many of us here do. This is all so new, and the more reports from people (both the good and the bad) the better, in my view. Thanks so much for posting this. May your improvements continue!
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Postby Cece » Mon Dec 06, 2010 8:25 pm

this is great news, Ann, what a pleasant change too from the typical nonsupportive neuro stories!!
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Postby msgator » Tue Dec 07, 2010 10:45 am

Got the call to set up physical therapy today. Don't know that I will be able to get there until the new year.

2 kids (2 & 6), the holidays, 6 coming for the holidays and a part time job don't leave me much time.....
always look on the bright side of life

Veins opened 10/15/10. RIJV still on the small side. Feeling much better.
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