Update on my husband

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

Update on my husband

Postby whyRwehere » Thu Dec 24, 2009 7:10 am

My husband had his second procedure done yesterday, and the doctor said it went beautifully. His internal Jugular is now 10mm (originally it was .5mm). Unfortunately, she said there was nothing she could do about his missing pre sacral venous plexus problem. No stenting, just balloons...we are happy with that.
Later that day, he was able to get the foley catheter removed, which had been on for about 2 months (!). They are just not into self-cathing here, but we persisted this time and now have a stock, plus my husband has started to pass on his own again some of the time......a very big thing...MERRY CHRISTMAS like!
So, hard to say if he feels much different, because he is so tired. If he says anything, I'll pass it on...which reminds me: he said the other day, that when he wakes up, his arm/hand no longer feels numb.
So, Happy Holidays,
WhyRwehere
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Postby ozarkcanoer » Thu Dec 24, 2009 7:31 am

I am glad to hear that your husband has some improvement. It's too bad that he still has the fatigue. I know how bad that can be. Maybe since these missing veins are now coming to light (I know there are people with missing jugular veins in addition to you husband's venous plexus) then vascular specialist can research how to treat these problems.

Thanks for the update and please let us know about any change in your husband's status.

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Postby whyRwehere » Thu Dec 24, 2009 7:39 am

Oh, sorry, it isn't fatigue as such. He's tired, because yesterday was a long day, and then he was up 3 times last night, because he has had to drink a lot and then eventually self cath....
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Postby CRHInv » Thu Dec 24, 2009 7:48 am

Why, I am so glad to hear there is some improvement already. My fatigue was has been greatly reduced and seems to still be getting better even 1/1/2 month out. I hope this is the case for you guys.
Have a very merry Christmas!
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 mormiles » Thu Dec 24, 2009 7:56 am

A lovely Christmas blessing for you two. With MS, the smallest of improvements is cause for joy. May you both have the merriest and most blessed Christmas!
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby whyRwehere » Thu Dec 24, 2009 7:58 am

:) Thanks, here's hoping his progression stops...that would be such a relief!!
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question about numbness

Postby sunwest » Thu Dec 24, 2009 8:26 am

You are both so courageous and very inspiring. Good job! I am very happy for you and grateful for your example. Keep posting incoming info.

I'm new here and looking for cases where relief is found in numbness after the ballooning.

Because the ballooning doesn't cure cell death damage in the brain, the opening of the veins must be doing something else as well.

Does your husband have cervical ribs? One or bilateral? These ribs are an abnormality found in .02% of the population. Cervical ribs can compress the jugulars depending on how the rest of the person's skeleton is set up.
The problem will typically show up after adolescence.

These ribs are visible on X-ray and should always be mentioned in the write up.
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Postby youbetcha » Thu Dec 24, 2009 8:30 am

Good news!!
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Postby CureIous » Thu Dec 24, 2009 8:53 am

Excellent report, thanks for the update, keep us informed! What a great Christmas present!
Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby EnjoyingTheRide » Thu Dec 24, 2009 9:01 am

Wonderful news! Forgive my ignorance, but where did your husband have these procedures done?
Mitch
Please visit my blog at www.enjoyingtheride.com
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Postby cheerleader » Thu Dec 24, 2009 9:23 am

Why,
A very, merry Christmas. Your hard work and dedication has paid off- for your family and eventually many more. I wish your husband continued healing.

The theory behind the immediate improvements after the procedure is better blood flow and increased oxygenation to brain cells. Healing of prior damage takes time, but can happen as well. We don't know how much- it is like stroke recovery.
blessings to all!
cher
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby sunwest » Thu Dec 24, 2009 11:54 am

cheerleader wrote:Why,
A very, merry Christmas. Your hard work and dedication has paid off- for your family and eventually many more. I wish your husband continued healing.

The theory behind the immediate improvements after the procedure is better blood flow and increased oxygenation to brain cells. Healing of prior damage takes time, but can happen as well. We don't know how much- it is like stroke recovery.
blessings to all!
cher


WhyR, can you tell me how far apart your husband's procedures were?

Dead brain cells can never be recovered. Stroke recovery is behavioural and done with months and months of therapy to teach the brain new pathways. That's if someone takes the trouble to offer it and the patient has the money to afford it.

Taking people's organs is done on the basis that damaged brain cells never ever recover.
sunwest
 

Postby whyRwehere » Thu Dec 24, 2009 2:02 pm

My husband had his interventions done in Paris. They were 3 weeks apart. We have to consider that sleeping inclined has helped his hand numbness, although we haven't done as good a job inclining the bed, as one would like.
The bladder problem has been an ongoing nightmare for the last 2 months. Things are not working correctly down there, but at least some urine is coming out on its own now. He will still need to self cath, but it is better than the foley catheter!! (Although I think that Dr Foley was a genius to invent that).
I do not know about the rib thing, as I don't know when my husband last had/ ever had a chest x-ray.
The doctor intends on writing a paper about the case. That is good news.
Now I have to convince someone to go to bed, so that Santa can do so, too.
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Postby AndrewKFletcher » Thu Dec 24, 2009 3:29 pm

sunwest wrote:Dead brain cells can never be recovered. Stroke recovery is behavioural and done with months and months of therapy to teach the brain new pathways. That's if someone takes the trouble to offer it and the patient has the money to afford it.

Taking people's organs is done on the basis that damaged brain cells never ever recover.


Edited poor statement to say what was meant. Sorry for not thinking with my keyboard.
What I was trying to say was that brain death is not be as permanent as we are led to believe.
That statement is so wrong. Dead braincells are repaired all the time. Do a google or go pubmed. Think it was a Dutch paper I read.

Also there is the case of the 12 year old girl from Kent with cerebral palsy (brain damage from birth)

She got out of her wheelchair and walked at school, now clothes and dresses herself and has regained the muscles in her legs to the point that they look too masculine acording to her mother. Using Inclined Therapy only!

http://www.medindia.net/news/Exercise-c ... 1799-1.htm
http://www.vetscite.org/publish/items/000764/index.html
http://news.bbc.co.uk/1/hi/health/6362183.stm
Last edited by AndrewKFletcher on Fri Dec 25, 2009 1:54 am, edited 1 time in total.
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Postby sunwest » Thu Dec 24, 2009 3:40 pm

AndrewKFletcher wrote:
sunwest wrote:Dead brain cells can never be recovered. Stroke recovery is behavioural and done with months and months of therapy to teach the brain new pathways. That's if someone takes the trouble to offer it and the patient has the money to afford it.

Taking people's organs is done on the basis that damaged brain cells never ever recover.


That statement is so wrong. Dead braincells recover all the time. Do a google or go pubmed. Think it was a Dutch paper I read.

Also there is the case of the 12 year old girl from Kent with cerebral palsy (brain damage from birth)

She got out of her wheelchair and walked at school, now clothes and dresses herself and has regained the muscles in her legs to the point that they look too masculine acording to her mother. Using Inclined Therapy only!

http://www.medindia.net/news/Exercise-c ... 1799-1.htm
http://www.vetscite.org/publish/items/000764/index.html
http://news.bbc.co.uk/1/hi/health/6362183.stm


Exactly.... so what's going on? Why are people being asked to donate their loved one's organs when these patients can be cured of brain cell damage. Thank you Andrew!!!
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