I now have a theory about what happened to my wife.

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

Re: I now have a theory about what happened to my wife.

Postby DougL » Mon Apr 22, 2013 4:39 am

well not so good since the last update. after this week's visit, my wife complained about severe numbness. all her lower body, worse than ever. we thought it was a continuation of Monday's stress.

when we saw Doc on Saturday, we were talking about numbness and I said "if she wasn't SPMS, i would say she is having an attack". my wife answered "Yes it feels exactly like when i used to get attacks."

Doc's face went a little white. he said it was his fault. he tried something new during the last visit and obviously she wasn't ready for it. she showed so much promise during the first adjustments that he got ahead of himself.

a couple minor adjustments later and my wife was smiling saying "I love you Doctor".
User avatar
DougL
Family Elder
 
Posts: 371
Joined: Mon Jul 11, 2011 3:00 pm

Re: I now have a theory about what happened to my wife.

Postby LR1234 » Mon Apr 22, 2013 6:48 am

Every time I have had my neck or spine manipulated (via nucca or osteo) I have had ms symptoms flare:( one adjustment gave me my worst bout of vertigo the following day. Do there is definitely something going on with the neck and spine but I am too scared to mess with it now:( I have tried it 8 or 9 times.
I hope your wife's numbness is temporary and that she is feeling better soon xx
LR1234
Family Elder
 
Posts: 1501
Joined: Wed Feb 11, 2009 4:00 pm
Location: California

Re: I now have a theory about what happened to my wife.

Postby DougL » Mon Apr 22, 2013 7:30 am

already starting to feel better.

the affects are immediate and quantifiable. you can see her improve right before your eyes.

she slept the whole day yesterday (normal after an adjustment). i will find out today if the numbness is improved.
User avatar
DougL
Family Elder
 
Posts: 371
Joined: Mon Jul 11, 2011 3:00 pm

Re: I now have a theory about what happened to my wife.

Postby LR1234 » Mon Apr 22, 2013 1:05 pm

Good to hear:) maybe I will give it one more shot but tell the nucca lady to go easy on me:)
Please keep us posted on your wife's progress x
LR1234
Family Elder
 
Posts: 1501
Joined: Wed Feb 11, 2009 4:00 pm
Location: California

Re: I now have a theory about what happened to my wife.

Postby DougL » Wed Apr 24, 2013 6:48 am

another set of bad days. after the adjustment on Saturday she got a bit better but by Monday her right hand was not functioning at all.

a bit of improvement Tuesday but still not functioning enough to be able to write.

then she goes and has a bath before she goes to NUCCA doc tuesday evening. now she can barely walk let alone worry about writing. a struggle just to get her out to the car.

Doc did a lot of work this time.

leaving the Doc, she hands me the cane - its an image things. she doesn't want to be seen with it.

30 minutes later at home - hand is working perfectly. also later that evening she does a little dance. leg is much better.

this really is amazing. she literally walks in with a cane and walks out without it. the next step is to get the adjustments to hold.
User avatar
DougL
Family Elder
 
Posts: 371
Joined: Mon Jul 11, 2011 3:00 pm

Re: I now have a theory about what happened to my wife.

Postby EJC » Thu Apr 25, 2013 2:54 pm

What is the NUCCA Doc adjusting Doug? Is it the same adjustment each visit or does it vary?
User avatar
EJC
Family Elder
 
Posts: 614
Joined: Tue Apr 20, 2010 3:00 pm
Location: Surrey, UK

Re: I now have a theory about what happened to my wife.

Postby DougL » Fri Apr 26, 2013 4:12 am

EJC wrote:What is the NUCCA Doc adjusting Doug? Is it the same adjustment each visit or does it vary?


not really sure. i know 90% of the time she is on her left side and he is on her right neck area. he does a measurement from her ear and then an "adjustment". i assume it is the Atlas.

if i were to guess, i would say it is mostly the same adjustment each time. his initial comments suggested it would take a few times for the adjustments to hold. he has commented that she is doing quite well (which is why he got ahead of himself as i said before)

before he starts each time, he pushes three points and asks which is more painfull. then afterwards that pain is gone.

he has also done some pressure point stimulation on her lower back. his comments there are her hips are shifted (left is up i think) and the Atlas will evenutally correct that - this stimulation is to "kick start" the process.
User avatar
DougL
Family Elder
 
Posts: 371
Joined: Mon Jul 11, 2011 3:00 pm

Re: I now have a theory about what happened to my wife.

Postby Music » Fri Apr 26, 2013 1:34 pm

DougL,

Does your wife get measured while standing to see how straight she is before her adjustment? Since I am in a w/c, I am measured seated for head tilt and how straight my shoulders are with some sort of instrument before my adjustment. I held my adjustment off and on from the beginning but it took about 1 ½ years to hold for the now 9 months. Everyone is different so your wife might hold sooner. My hips too are not level and a bit twisted to the left….from a bad fall awhile ago but I am sitting MUCH straighter because of NUCCA. I also get a thermal scan of my neck before treatments and a few times they’ve checked my blood pressure – has your wife had these done? Maybe they’re not necessary but the extra info can be helpful at times I guess. Also, I have never had anything negative happen from the adjustments like some others have.

Take care.
User avatar
Music
Family Member
 
Posts: 71
Joined: Fri Aug 20, 2010 3:00 pm
Location: Calgary, Alberta, Canada

Re: I now have a theory about what happened to my wife.

Postby DougL » Mon Apr 29, 2013 5:57 am

yes she does. it starts with her standing in front of table, calfs touching table and legs spread.

he looks her up and down and compares to notes and x-rays, asks her to close her eyes and turn side to side. close eyes and he tries to push her a little (balance thing i assume). adjustment followed by trying to walk followed by standing in front of table again.

really good news from last visit. she is holding her Atlas and no adjustment this time (just a little point stimulation on lower back and adjusting of hips)

it was also a pretty good few days for her. her main complaint now is strength of legs. time for some very light exercise.
User avatar
DougL
Family Elder
 
Posts: 371
Joined: Mon Jul 11, 2011 3:00 pm

Re: I now have a theory about what happened to my wife.

Postby DougL » Wed May 15, 2013 5:09 am

not much to report. she is holding very well. this time we will go 2 weeks between visits and see how she does.

improvements are also holding. i guess the best way to describe them are using her words "i have had the numbness for many years. the only problem was when strength was also an issue. now i have the strength back."

how do you feel? "I feel straight, if that makes sense. I feel centered"

i also notice a difference in her walking. now she bends the knee and ankle and lifts the leg - before she flung the leg out to the side. its weird - almost like a little kid learning to walk for the first time. come on Neuroplasticity.
User avatar
DougL
Family Elder
 
Posts: 371
Joined: Mon Jul 11, 2011 3:00 pm

Re: I now have a theory about what happened to my wife.

Postby EJC » Wed May 15, 2013 1:38 pm

None of this sounds odd Doug, you have to think of all this as rehabilitation.

It's almost like learning to walk again after a serious accident. Emma is going through exactly the same.
User avatar
EJC
Family Elder
 
Posts: 614
Joined: Tue Apr 20, 2010 3:00 pm
Location: Surrey, UK

Re: I now have a theory about what happened to my wife.

Postby DougL » Thu May 16, 2013 4:16 am

EJC wrote:None of this sounds odd Doug, you have to think of all this as rehabilitation.

It's almost like learning to walk again after a serious accident. Emma is going through exactly the same.

sorry, i didn't mean to sound like i thought it was odd. it is going exactly like i thought - as you said "like learning to walk again"
User avatar
DougL
Family Elder
 
Posts: 371
Joined: Mon Jul 11, 2011 3:00 pm

Re: I now have a theory about what happened to my wife.

Postby vesta » Thu May 16, 2013 6:44 am

DougL wrote:not much to report. she is holding very well. this time we will go 2 weeks between visits and see how she does.

improvements are also holding. i guess the best way to describe them are using her words "i have had the numbness for many years. the only problem was when strength was also an issue. now i have the strength back."

how do you feel? "I feel straight, if that makes sense. I feel centered"

i also notice a difference in her walking. now she bends the knee and ankle and lifts the leg - before she flung the leg out to the side. its weird - almost like a little kid learning to walk for the first time. come on Neuroplasticity.


What you describe about her walking is a HUGE improvement. It implies she has recovered the "releveur" nerve/muscle which lifts the foot - prevents "foot drop" - which is extremely difficult to recover. I'd be in heaven if I could recover that for my right leg. Congratulations
vesta
Family Elder
 
Posts: 333
Joined: Thu Jul 12, 2012 10:10 am
Location: Paris, France

Re: I now have a theory about what happened to my wife.

Postby DougL » Wed May 29, 2013 4:38 am

two weeks and the doc said she did not need any adjustment :-D

she also started Fampyra but no affect so far. we don't have much hope for this but will give it a try.

improvements continue. walking and energy. i continue to see improvements in her walking action - from a dead weight right leg to a leg that walks like someone who's leg fell alseep; a little unsure of where it lands but still lifting leg up and not to the side.

as hope builds, its getting time to get her reflux checked again. the work by Dr S on her veins plus the work by Dr R on her Atlas have addressed the problem of CCSVI. if the blood is flowing correctly, it will soon be time to get the MS Clinic to test her again. i would love to have Dr S do another IVUS to see if the "left side bone obstruction" is improved. i remember the frustration in his voice when he explained it to us and said he could not do anything about it. if the Atlas adjustments by Dr R really worked and opened up her left jugular, then maybe Dr S can pass that info to others he sees with "bone obstructions".

we are also still on the waiting list for the physio appointment thru the MS Clinic. high hopes that they will give her exercises etc. to help her. the weather is improving so its time to go for walks again.

it looks like it will be a pretty good summer. 8)
User avatar
DougL
Family Elder
 
Posts: 371
Joined: Mon Jul 11, 2011 3:00 pm

Re: I now have a theory about what happened to my wife.

Postby EJC » Thu May 30, 2013 7:07 am

Good news.

Emma found deep tissue massage helped with the muscle atrophy. It's a case of getting blood flowing through the unused muscle and getting them detached from whatever they've attached themselves to after extended periods of underuse.

Emma initially saw a Neurophysio who performed deep tissue massage and provided her with some simple exercises to keep things moving in the right direction. As we were only getting one appointment every 6-8 weeks this needed supplementing privately.

We found a sports massage therapist locally who actually produced better results than the Neurophysio.
User avatar
EJC
Family Elder
 
Posts: 614
Joined: Tue Apr 20, 2010 3:00 pm
Location: Surrey, UK

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service