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Re: ccsvi
Posted: Fri Apr 01, 2011 9:11 am
by Trish317
blossom wrote: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.
Thank you, Blossom. As far as the upper cervical, I'm not sure if he'd be able to have it because of all the surgery he's had.
Posted: Fri Apr 01, 2011 9:18 am
by Trish317
Cece wrote: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!
The only improvements he saw were feeling in his feet, which went away very quickly, and much improved energy....less fatigue. That disappeared after the first couple of months. I noticed cognitive improvements that, to me, lasted.
I don't think he'll take any meds. He was diagnosed PPMS and his neurologist then (in Minneapolis) put him on betaseron but he stopped it because it wasn't helping anything.
I've already tried to talk him into going to Minneapolis. I don't know what he'll decide to do after he sees his neuro.
Posted: Fri Apr 01, 2011 9:20 am
by Trish317
HappyPoet wrote: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.
Thank you, HP. I appreciate all the prayers and positive thoughts. I know how powerful they are.
ccsvi
Posted: Fri Apr 01, 2011 8:29 pm
by blossom
trish317, if you look on dr. flanagan's thread i know costumesnational was in a bad wreck and had surgeries. he also tried ccsvi. he is a big advocate of dr. flanagan and upper cervical. you might want to check costumesnational's post. if you or your darling man have info. or x-rays mri's, i can't speak for dr. flanagan but if you let him know as much as you can he would i believe give you his honest opinion. then as it is with all of us-we make our own decision.
not trying to pusuade you just an option. we never know, we are all having these symptoms yet one shoe is proven over again - it dosn't fit all. would be a lot easier if it did.
'
Re: ccsvi
Posted: Sat Apr 02, 2011 5:08 am
by Trish317
blossom wrote:trish317, if you look on dr. flanagan's thread i know costumesnational was in a bad wreck and had surgeries. he also tried ccsvi. he is a big advocate of dr. flanagan and upper cervical. you might want to check costumesnational's post. if you or your darling man have info. or x-rays mri's, i can't speak for dr. flanagan but if you let him know as much as you can he would i believe give you his honest opinion. then as it is with all of us-we make our own decision.
not trying to pusuade you just an option. we never know, we are all having these symptoms yet one shoe is proven over again - it dosn't fit all. would be a lot easier if it did.'
Thank you, Blossom. I do follow that thread and I've wondered if he might benefit from upper cervical treatment. I'll continue researching.