Sharon's post op CCSVI

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

Postby cheerleader » Thu Jun 25, 2009 2:07 pm

Thanks, Sharon. Sorry the stents didn't help your golf game....yet :) I love your grandson's observation about your gait...he must be so proud of you!

An aside on sweating....Jeff went on a long mountain bike ride yesterday, then came home and worked on some shelves for our garage, out in the sun with powertools. It was 90 degrees and he was drenched in sweat, but wasn't tired (!) Whereas the past 2 summers, the heat would kill him, he couldn't move, had to nap in airconditioning. I haven't seen him sweat like that, ever. Gross....but as Sharon said, a sign the body is working.

The body's thermostat is controlled by the hypothalamus...deep at the base of the brain. The hypothalamus also controls fatigue, sleep cycles and hunger. The first three changes Jeff saw with his stents were all hypothalamic issues...he was more hungry, less tired, and less affected by heat. I don't think this is coincidence....how's your appetite, Sharon?
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Postby Sharon » Thu Jun 25, 2009 3:32 pm

Hi Joyce -

Balance issues - my neurologist would tell me that I had good balance for someone with MS. One of his tests I would close my eyes and he would push one shoulder and then the other shoulder to see if it knocked me off balance. I always passed all his tests. To me though, yes, I had balance issues. I can not stand on my left leg for more than 15 seconds. The neurologist said that had to do with strength not balance .....No matter, when walking (and this started years ago) I could not walk in a straight line----I always started walking towards the right. I mentioned this to Dake and he thought it was definitely a balance issue. I still do this if I am walking without the WalkAide. Now, has it changed? I haven't really paid attention to it, but I will in the next couple of days and report back to you.

Oh, I forgot to post this - I lost 5 lbs within the first ten days from the procedure. My diet has remained the same. I believe that Cheer said Jeff had also lost some weight. She mentioned that maybe there is a metabolism change. Honestly, though I do not think the treatment should be considered a new diet plan :lol: :lol:
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Postby Sharon » Thu Jun 25, 2009 3:43 pm

Cheer we were passing in cyberspace again :lol:

My appetite has not changed - my GP was a little worried about the weight loss, but it has stabalized the last week. Odd though - that 5 lbs was lost in about 7-10 days - this was the time period when my throat was hurting, but, I made sure to eat three good meals a day so it was not because of lack of food.

New shelves in the garage - great! It is so nice to hear that Jeff has the energy and the desire to do the "honey-do's".

Sharon
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Postby Sharon » Wed Jul 29, 2009 1:54 pm

Hi!
Having trouble with the wireless service where I am staying - so this is a quick post.

Played golf the past seven days - lots of walking up and down hills and side hills on these mountain courses. My left hip and my leg are tired - taking a break today.

Off to Stanford on August 5th for follow-up.

Hope all is well with everyone - will post more when I get home. Looks like the forum has been busy.

Sharon
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Postby Sharon » Sun Aug 02, 2009 4:03 pm

Two months out from the surgery - I will be at Stanford this coming week for my follow-up tests.

I thought I would update where I am now as to where I was two months ago.

First, let me say that all of us who have had the surgery are experiencing our "own" recovery. Some things like the shoulder and neck issues are similar, but we are not the same. I think this has to do with where the stents were placed, what kind of stenosis, how large the stents were, and the surrounding muscles, nerves and tissue. I believe it is Jeff who has a small area around the jugs -- his jugs were being squished. My left jugular was flat for over 3 inches -- so, now with the stent, the jugular is requiring more room --it is bigger in diameter. With this in mind, how many of the surrounding nerves and muscles were pushed aside? I think all of this has had something to do with the healing.

Some of the things that I listed for Dr. Dake prior to the procedure:
Tinnitus - no change, still have
Burning between shoulders - there is a change - the burning is concentrated on the left shoulder blade.
Tight left calf muscle - there is a change - my calf muscle is tight when I get out of bed in the morning, but I do not notice it during the day anymore.
"Shock" right side of head at ear level - there is a change - I use to get this at least once a day when I would move my head a certain way. I seldom have the "shock" anymore - it is not gone but it is less.
Weak left wrist and hand - no change
Balance - I am saying no change at this time - I do feel more confident when walking though.
Foot drop - no change
Ankle stiffness - no change
Lifting left knee - small positive change - I can lift the left knee a little bit easier.

There are some things that I did not talk to Dake about because I did not associate with MS.
Lower right backache- I had the backache for about six months prior to the procedure -- I thought it was probably because of age or my exercise. The ache was gone the day after surgery - I have had no recurrance. I am now wondering if my right side was starting to be affected and the procedure stopped the progression. Dake is not sure -- it is too bad that something like this can not be measured. Would this be considered stopping a relapse if I was in a drug trial?
Muscles in left hip - the muscle tone is normalizing - it is not as spastic. I was not on Baclofen, but I was beginning to get more spasticity. Since the procedure, I am moving the "other" direction - less spastic and this is validated by my massage/physical therapist who is quite surprised. She said that it is the first time in three years she has seen a positive change in the muscle tone around the hip area.
Perspiring - darn it, I started to perspire again! I guess this is a good thing, but it is kind of hard to get use to.
Headaches - I use to get a headache which would last for a couple of days when I would go from Denver (5280 feet) to the mountains (7-8000 ft). Two trips this summer - NO HEADACHE!
Walking Most of you know that I wear a WalkAide - I was having some problems walking even with the WalkAide --probably because of the increase hip spasticity. My gait is much smoother now.

EDITED -
Brain fog - I believe it was Randi who mentioned that she did not consider head clarity to be a problem ...I was the same. Again, borrowing from Randi's comments, it is like you just got HDTV. Your old TV was a good TV with clear picture --the HD is brighter with distinct clarity. Since the procedure, I have noticed the clarity

Would I do it again? YES! For me it was a good, sound decision. I know that some will look at everyone's experiences as anecdotal - not hard, scientific evidence. We are only about 3 months into this journey. I would say to those who discourage CCSVI, give us some time - the drug companies get years. I think our little Stanford group has seen remarkable, positive changes. Jeff's Copaxone did not clear his brain fog or help his fatigue - the procedure did; Marie's Copaxone did not help her spasticity (she is now off the Baclofen -YIPEE!) - the Copaxone did not help Marie with her cold hands - the procedure did; Mel's treatment with HyC helped her some, but she is now feeling better with more energy and less fatigue ....these are just a few MS'rs, and it has been only three months! Lew was feeling better until he overworked himself tilling his garden - his bladder issues are better since the procedure. Let's be patient and to quote dear Wobbly, "Be Strong"

I will update again after I get my follow-up test results.

Sharon
Last edited by Sharon on Mon Aug 03, 2009 9:44 am, edited 1 time in total.
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Postby Jamie » Sun Aug 02, 2009 4:33 pm

Thanks Sharon.
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Postby Ernst » Sun Aug 02, 2009 10:59 pm

About slow healing, I remember my friend who's nerve in face area was damaged. His right side of face was like stoned and when he smiled or laughed, that looked bit weird, cause only half of face was "alive". It took very long time before his facemuscles began to work, slowly.. I quess it was many months, maybe 6 months at least.
So it makes sense that recovery after stent-operation is slow, when we are talking about very slowly developed damage in brain/nervous system. Of course nobody knows what will be the result in long-run.. but I'd bet a lot, that it will stop the ms-progress. When circulation works, there is at least chance for healing (says my common sense).

But thank you Sharon! Always pleasure to read that how you are doing :)
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby Arcee » Mon Aug 03, 2009 6:37 am

Sharon, thanks for such an informative post. The way you are tracking and articulating the comparisons is really helpful; I will try to do it the same way when I have my follow up next month.
Looking forward to hearing about what you learn. Best to Dr. Dake and all his colleagues!
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Postby Sharon » Mon Aug 03, 2009 10:00 am

Thanks Arcee, Jamie and Ernst for your comments. We are all learning from each other. I went to Stanford hoping that I could stop the progression of the disease....if I am able to be active on my trip to China in September, then I would say "mission accomplished". Five months ago I was worried that I would have trouble walking even though I have my WalkAide and a walking stick. Honestly, I am no longer worried about the trip. I, like everyone else wants relief of symptoms -- we are like kids in a candy store... wanting a different kind and more.....you get rid of the fatigue, so now hopefully you get rid of the bladder issue. This is a good thing -- we are experiencing hope, where for some there has been none.

Sharon
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Postby cheerleader » Mon Aug 03, 2009 10:08 am

:)
So good to read your update, Sharon.

Sharon wrote: Honestly, I am no longer worried about the trip. I, like everyone else wants relief of symptoms -- we are like kids in a candy store... wanting a different kind and more.....you get rid of the fatigue, so now hopefully you get rid of the bladder issue. This is a good thing -- we are experiencing hope, where for some there has been none.


Hope and healing. Two really great things! And the ending hasn't been written yet. We're still in the opening chapter.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Loobie » Mon Aug 03, 2009 12:06 pm

Our new motto: H&H, it's not just for breakfast anymore.

I thought I'd have been out of work by noon today, and here it is after 3:00pm. H&H!! I know I get giddy when ANYTHING good happens, but not worrying about taking your trip to China has to be absolutely huge. I hope you have a blast.
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Postby Needled » Mon Aug 03, 2009 12:38 pm

Sharon, Thanks for all your posts. They're very informative and detailed. Please keep them coming, and good luck with your follow-up tests!
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Postby Sharon » Wed Aug 05, 2009 8:55 pm

Celebration time is here!! I am off the blood thinners - everything is A-ok.
Leaving REALLY early tomorrow morning (6:30 am flight), so I am turning the lights out now.

Later - thanks to everyone.
Sharon
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Postby peekaboo » Thu Aug 06, 2009 5:45 am

Great news Sharon! Next stop China

Holly
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Postby Needled » Thu Aug 06, 2009 7:49 am

Sharon, That's great news! I'm really happy for you. And thanks for the updates on Ladystewart and Mark.
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