"quilting community helps woman with MS"

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

"quilting community helps woman with MS"

Postby Cece » Wed Mar 30, 2011 7:23 pm

Before being wheeled in to surgery, Sherry said the letter on the exit sign were blurry and her speech was slurred.

“When they wheeled her (out of) surgery she said, ‘Mom, as soon as they open that vein I could see every letter as clear as a whistle,’” said Joan. “(Her) speech had improved and her voice was stronger. She said ‘Mom, feel my hands.’ Sherry had been icy cold, there was no circulation. I'm telling you, you would swear she was hot flashing. She would feel that surge of blood. Those were some of the big things.”

Since her treatment, her severe leg and neck spasms have been reduced and she has better control of her muscles, said Joan.


www.yourottawaregion.com/news/local/art ... an-with-ms

HappyPoet, this reminds me of you and the exit sign at American Access Care. :)

It's hard to read stories of people diagnosed in their early twenties and in a wheelchair soon thereafter. Having become as involved in CCSVI as I have, it's opened my eyes to the full range of how hard MS can hit. I really hate this disease.
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Postby blossom » Wed Mar 30, 2011 8:34 pm

cece, yes, this is a terrible life stealing disease. seeing people pull together to help and the beautiful smile on that girls face can really turn me into a puddle of tears. tears of saddness because of what she has gone through and tears of happiness that she improved and people cared so much.

then it hits me of how many of us there are--all with our own personal pain.

i hope soon ccsvi is fine tuned to the point that every procedure done brings success and relief to everyone seeking it. whatever it takes, whatever works.
no boo boo's---just success. it will take some real team work.
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Re: "quilting community helps woman with MS"

Postby HappyPoet » Thu Mar 31, 2011 7:46 pm

Cece wrote:HappyPoet, this reminds me of you and the exit sign at American Access Care. :)

I'm beyond happy for her and will add her to my prayers.
Thank you so much for this article, Cece.
Please, keep them coming.
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Postby HappyPoet » Thu Mar 31, 2011 7:51 pm

blossom wrote:cece, yes, this is a terrible life stealing disease. seeing people pull together to help and the beautiful smile on that girls face can really turn me into a puddle of tears. tears of saddness because of what she has gone through and tears of happiness that she improved and people cared so much.

then it hits me of how many of us there are--all with our own personal pain.

i hope soon ccsvi is fine tuned to the point that every procedure done brings success and relief to everyone seeking it. whatever it takes, whatever works.
no boo boo's---just success. it will take some real team work.

Blossom, ABSOLUTELY WONDERFUL post.
Please, keep them coming.
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Postby blossom » Thu Mar 31, 2011 8:15 pm

happypoet, you keep them coming too. ok. and, can't wait till i read that you are amongst the ones that we all dream of being. all success-no boo boo's. it's getting there. seems like when we were waiting forever to turn 16 and drive a car. it just took forever. then one day we were there.
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Postby Cece » Thu Mar 31, 2011 8:19 pm

You keep your posts coming too, HappyPoet.

blossom, you had the same thought, I see!! I am hopeful that you will be a success story some day too whichever doctor or specialty it may be that helps you.
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Postby blossom » Thu Mar 31, 2011 9:38 pm

thank you cece i still think it will take the village of doctors to get us to the point we all want to be they all are needed so badly to work together on this for a change

i am even hopeing soon that some hot shot stem cell doctor gets in the arena soon the way it"s looking it would be good in the game plan people missing a vein ok we got one on the shelf here that will work or maybe hell yeah we"ll just grow you a new system

might sound far fetched but is it really? remember the dr in ohio i mentioned that was saving people from looseitng their legs because of circulatory problems he is useing their own adult stem cells to do this replaceing or repairing the veins remarkable

i"d be curious to see if he could help out our little buddy happy poet she no longer has a femorale vein might be possible to grow her a new one
there are a lt of us in a pickle right now

but it is the success stories keeping us going and you are right whatever it takes

i am always happy for you and the others that have success if somehow the doctors could get together and work together we would be much closer to maybe whispering "cure" not just improvements

can you tell my computer is goofy right now? sorry
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Postby Trish317 » Thu Mar 31, 2011 9:55 pm

Cece, Blossom, and Happypoet....

I read everything you write and you always give me hope.

My darling man has gotten worse since his procedure last September. He was treated by one of the best but he hasn't had the proper follow-up care because it isn't available near him. We're in a long-distance relationship so he doesn't always tell me how he's feeling. He finally did this week and I'm very concerned and worried. He had an ultrasound in December and was told that his veins are still open. I don't believe they were correct. I know they didn't know what they were supposed to be looking for, and I know the correct protocol wasn't followed.

I had to back-off with my feelings about everything because it was causing problems in our relationship. But, I've never stopped researching and reading here.

I talked him into making an appointment to see his neurologist. She's not completely close-minded to CCSVI but, I don't think she's doing any research. He has an appointment to see her on Monday.

I'm trying to get him to go to Minneapolis to see Dr. Cumming. He used to live in the Twin-Cities area. In fact, that's where he got the MS diagnosis in 2007.

I guess I'm just asking for good thoughts and some prayers. I'm very worried.

Again, I appreciate all the things I've learned, and continue to learn, here at TiMS. You're all heroes to me.
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Postby Blaze » Fri Apr 01, 2011 5:35 am

Trish, you're a hero to us--and I'm sure to your "darling man" too. Even if he is resisting your wonderful efforts, I'm sure deep down he appreciates all you are trying to do for him. At the same time, he is likely feeling discouraged about his outcomes and afraid of being disapointed again.

It would be great if you could convince him to contact Dr. Cumming. Keep the love flowing! Your DM is lucky to have you in his corner.
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Postby nellie » Fri Apr 01, 2011 7:03 am

Trish, Dr. Cumming is very good & so willing to help. I have been treated by him & he is so on board with ccsvi. He is so willing to follow up even when not being treated by him. I hope yor DM will consider seeing him but realize how it is when you must know your boundaries. MS can be such a frustrating disease limiting us and causing much frustration. It is so wonderful you're so understanding and I know he must realize he is so lucky to have you.
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Postby Trish317 » Fri Apr 01, 2011 7:11 am

Blaze wrote:Trish, you're a hero to us--and I'm sure to your "darling man" too. Even if he is resisting your wonderful efforts, I'm sure deep down he appreciates all you are trying to do for him. At the same time, he is likely feeling discouraged about his outcomes and afraid of being disapointed again.

It would be great if you could convince him to contact Dr. Cumming. Keep the love flowing! Your DM is lucky to have you in his corner.


Thank you, Blaze. I'm just a woman who loves a man very much. I won't give up but I'm afraid he might.
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Postby Trish317 » Fri Apr 01, 2011 7:15 am

nellie wrote:Trish, Dr. Cumming is very good & so willing to help. I have been treated by him & he is so on board with ccsvi. He is so willing to follow up even when not being treated by him. I hope yor DM will consider seeing him but realize how it is when you must know your boundaries. MS can be such a frustrating disease limiting us and causing much frustration. It is so wonderful you're so understanding and I know he must realize he is so lucky to have you.


Thank you, Nellie. I can tell that Dr. Cumming is a wonderful doctor by all that he's written here at TiMS.
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Postby blossom » Fri Apr 01, 2011 8:51 am

trish, so sorry to hear your darling man is getting worse. i can relate to his emotions as after the procedure i am worse. the follow up is tough. so far i have flow they say but as you i just wonder.

but, where there is life there is hope although even the best of us can get down at times. then you have to look up.

has he considered at upper cervical? it's tough to do all this stuff when some of us are in the physical shape we are. but, maybe it would be worth looking into if he can. i'm not bashing ccsvi at all and when they get this figured out a little better i may give it another shot but if i do i want all the help i can get and that means getting my bones as straight as possible. we don't need any road blocks. this whole thing is a slipery slope in a lot of ways but it's the best hope we've ever had. and combine things it all makes so much sence.

you are quite a lady to be there for your dm the way you are and he must be quite a man for you to want to be there. the best to you both.
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Postby Cece » Fri Apr 01, 2011 9:00 am

Trish317 wrote:Cece, Blossom, and Happypoet....

I read everything you write and you always give me hope.

My darling man has gotten worse since his procedure last September. He was treated by one of the best but he hasn't had the proper follow-up care because it isn't available near him. We're in a long-distance relationship so he doesn't always tell me how he's feeling. He finally did this week and I'm very concerned and worried. He had an ultrasound in December and was told that his veins are still open. I don't believe they were correct. I know they didn't know what they were supposed to be looking for, and I know the correct protocol wasn't followed.

It's still encouraging because even without knowing the correct protocol they should have been able to tell if there was a clot or not. From the ultrasound it sounds like he still has two jugulars and no clot. (Whew.) To tell if he still has CCSVI, he would need a CCSVI ultrasound. This would also tell if he has recoiled or restenosed in that way. Also he never had any improvements? Maybe something was missed. Dr. Cumming has been using IVUS lately, it's such a good tool for seeing what exactly is going on in these veins.
I talked him into making an appointment to see his neurologist. She's not completely close-minded to CCSVI but, I don't think she's doing any research. He has an appointment to see her on Monday.

I wouldn't expect much from an appt with a neurologist. But if he is doing worse, MS-wise, the appt is a good idea. Maybe she'll want him on gilenya or tysabri. There are time when the benefits are worth the risks.

With Minneapolis so close, why not get it checked out...but the decision is up to him. He went so far when he went to Albany!
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Postby HappyPoet » Fri Apr 01, 2011 9:13 am

Trish, your darling man is a very lucky man. To all the wonderful posts above, I add my love, prayers, positive thoughts, and best wishes.
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