CCSVI and CCVBP

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
User avatar
uprightdoc
Family Elder
Posts: 1995
Joined: Thu Sep 30, 2010 2:00 pm
Location: USA
Contact:

Post by uprightdoc » Wed Dec 01, 2010 3:40 am

Ruthless67 wrote: I wanted to bring Dr. Bill Code's experience to Dr. Flanagan’s attention if he hasn’t seen the post yet. http://www.facebook.com/note.php?note_i ... 2832983940

The puzzle pieces are coming together! Just maybe we have all the edges done? Lora


Hello Gypsy, I'd say you bailed out of the north just in time.

One of these days I will tell you about my own battle with ms-like symptoms that took me completely by surprise. It started as an unexpected rotator cuff tear, similar to Nigel. At the same time I started to get severe right leg and foot spasms while sleeping, sitting and driving. The history and progression of cranial nerve symptoms, motor weakness, muscle atrophy, and bizarre paresthesias that followed over the next several years is too long to go into here. Though my mind was opended decades before, there is nothing quite like expieriencing the symptoms first hand, like TN for example, which is up there with ON. Fortunately for me, my wife is a chiropractor and is keeping me patched together.
Last edited by uprightdoc on Wed Dec 01, 2010 6:49 am, edited 1 time in total.

User avatar
uprightdoc
Family Elder
Posts: 1995
Joined: Thu Sep 30, 2010 2:00 pm
Location: USA
Contact:

Post by uprightdoc » Wed Dec 01, 2010 4:00 am

kiwi wrote:Husband had first adjustment today. Very gentle as Chiro was a little scared after hearing his history and seeing the x-rays we had had done. Apparently the atlas is twisted and higher than it should be? and wedged up around the occipital? maybe I have this right... Doc Flanaghan, tried to get xrays on here for you to see, but can only get them on a word doc as disk we have them on won't allow them to be converted to photo pictures - and I'm a technophobe. Is there anyway that I can e-mail them to you to enable you to see them. Husband is scheduled for 2nd venoplasty 20/12. First one gave him much relief, stopped his choking, pain, fatigue, etc but sadly the symptoms are creeping back. He is full time in a wheel chair. Is it safe to have adjustments after this time - would be a couple of weeks after as chiro is closed over christmas/new year period. He said there is no rotation and adjustment was with a toggle board and one downward movement of hand onto upper neck region. Thanks for your time
Hello Kiwi,
You must be from Nigel's neighborhood. You can email your husband's x-rays to uprightdoc@earthlink.net or have the chiro email them to me. It's good that the doctor is extra-cautious but it is certainly safe to have "specific upper cervical toggle recoil adjustments" after recovery from angioplasty. Just be patient and let the doctor proceed slowly. Chiropractic is not an overnight fix. It is more like staightening teeth. It takes time.[/url]

User avatar
Ruthless67
Family Elder
Posts: 422
Joined: Tue Oct 27, 2009 3:00 pm
Location: Montana, USA
Contact:

Post by Ruthless67 » Wed Dec 01, 2010 9:58 am

Hello Doctor,

Never quite thought of us as Gypsies, but I like the analogy, lol.

Thought I'd give you an update.

Before leaving Montana I was only off 1/8 and Dr Fancher and I hoped my body would correct that on it's own.

Didn't happen that way. On Thanksgiving night I felt like I was having a stroke. I suddenly got dizzy, my tongue swelled up and my right hand became instantly numb and useless, worse than before. I couldn't even continue to hold a spatula which I had currently been using.

We were in Minden, Nevada and not wanting to over-react, I laid on our bed and made sure my husband knew my symptoms and hoped like Hell that I wouldn't need to go to an emergency room.

My gut told me my Atlas was "out" again and that seeing an emergency room MD was NOT going to be helpful. The stroke signs are similar, but even so, I felt it was not a stroke.

In the morning the dizziness was gone along with the swollen tongue. But my neck was so sore, even my granddaughters noticed I was constantly rolling my shoulders and massaging it. My right hand was & still is not as good as before.

I was able to see an Upper Cervical Chiropractor yesterday and indeed my Atlas was off, I was 1/2" off on the right. My neck is now much more comfortable and balance is once again better. The hand should improve again with time.

So like most things, Two steps forward, one back. Like you said, "Chiropractic is not an overnight fix. It is more like straightening teeth. It takes time."

Lora

User avatar
kiwi
Getting to Know You...
Posts: 18
Joined: Thu Feb 25, 2010 3:00 pm
Contact:

Post by kiwi » Wed Dec 01, 2010 10:25 am

Thanks Doctor Flanagan. Have sent a copy of his x-rays to you. It is great to have the experts so willing to help us. Very very grateful that you have come to this site. Partway through your book.
Cheers

User avatar
HappyPoet
Family Elder
Posts: 1413
Joined: Thu Jul 09, 2009 2:00 pm
Contact:

Post by HappyPoet » Wed Dec 01, 2010 11:35 am

uprightdoc wrote:Just be patient and let the doctor proceed slowly. Chiropractic is not an overnight fix. It is more like staightening teeth. It takes time.
Ruthless67 wrote:So like most things, Two steps forward, one back. Like you said, "Chiropractic is not an overnight fix. It is more like straightening teeth. It takes time."
And it also takes a commitment from the patient to make it to all scheduled appointments.

I made the mistake of skipping several appointments in a row because I wasn't feeling very well yet could still walk. BIG MISTAKE! I should have dragged myself to those appointments no matter what. The numbness in my feet started creeping back, and the shark that had stopped biting the left side of my torso (MS Hug), had started crunching and munching again.

Dr. Flanagan, my MS Hug is a symptom I forgot to tell you had been greatly helped by AO, which, along with being able to walk again, made me "extremely happy." The improvement in my MS Hug was so subtle over the two-month period that I didn't even realize the torture was over until my AO chiro inquired about it! But my happiness was short-lived.

Either my "MS" had flared again, which I didn't believe because the timing of its appearance would have been too coincidental, or my skull had slipped from its proper position. Sure enough, by the time I got to my next AO chiro appointment, I found out that my skull had not only slipped, it had slipped all the way back to its original incorrect position!

I had to start all over again from the beginning (the original "vectors" had to be used again, whatever that means, lol). Thank goodness I didn't miss even more appointments; otherwise, I think I'd be back to using a walker or possibly even a power-chair with a 20' shark clamped onto my side.

Chiropractic appointments really are like dentist appointments -- skipped appointments lead to crooked vertebra and crooked teeth.

Lora, I'm very glad you're feeling better.

:)

User avatar
uprightdoc
Family Elder
Posts: 1995
Joined: Thu Sep 30, 2010 2:00 pm
Location: USA
Contact:

Post by uprightdoc » Wed Dec 01, 2010 12:02 pm

HappyPoet wrote: ... I made the mistake of skipping several appointments in a row because I wasn't feeling very well yet could still walk. BIG MISTAKE! I should have dragged myself to those appointments no matter what. The numbness in my feet started creeping back, and the shark that had stopped biting the left side of my torso (MS Hug), had started crunching and munching again.

Dr. Flanagan, my MS Hug is a symptom I forgot to tell you had been greatly helped by AO, which, along with being able to walk again, made me "extremely happy." The improvement in my MS Hug was so subtle over the two-month period that I didn't even realize the torture was over until my AO chiro inquired about it! But my happiness was short-lived.

Either my "MS" had flared again, which I didn't believe because the timing of its appearance would have been too coincidental, or my skull had slipped from its proper position.
Hello Poet,
The MS hug is sign of brainstem compression. In your case, your head and neck are twisted and tilted around the brainstem to begin with. It only takes a little extra misalignment in your case to cause big problems. Again, please read the unusual symptoms of the optomotrist with EDS and POTS in addition to multiple other autonomic symptoms. In extreme cases these patients can die from respiratory failure. In contast to Chiari malformations these patients often have an increase in CSF volume in the cisterns that can compress the brainstem. Interestingly, Dr. Driscoll's son and daughter appear to have inherited the problem as well. Regardless of whether or not they have venous stenosis in the jugulars, angioplasty may be of benefit and a safer alternative. In contrast to most of you, the problem is complicated by excess joint mobility in the upper cervical spine which sometimes requires surgical decompression and stabilization with plates and screws. The doctor is currently looking into CCSVI testing. I recommended she speak to her neuro about getting a referral to Dr. Haake.
http://theeyedocblog.com/

User avatar
NZer1
Family Elder
Posts: 1624
Joined: Thu Feb 18, 2010 3:00 pm
Location: Rotorua New Zealand

Post by NZer1 » Wed Dec 01, 2010 3:26 pm

Dr. had another treatment last night and things are still rollercoaster, back to recoil for atlas again. Any way the Chiro gives a talk once a month for his new patients and anyone else interested.
WELL, wouldn't you guess it, John had a kick to the base of his skull at the rear, playing Rugby. He was out cold for 5 days and lost mobility, memory, and heaps of other things. He was a third year Lawyer student and after 6 months of drugs was no better, virtual vegetable. He was talked into Chiro care from a very learned Upper Spine Chiro who gently worked on his atlas and axis and was wall walking for support within 10 days. John changed career and has been a Chiro for 24 years.
Interesting connection eh!
He has not yet spoken about the link to you blog, so I will ask him again next week as I think he will be interested with his history.

Good to see you here Deb.

PS when will hear more of the history of Dr. F? Sounds interesting!

User avatar
NZer1
Family Elder
Posts: 1624
Joined: Thu Feb 18, 2010 3:00 pm
Location: Rotorua New Zealand

Post by NZer1 » Wed Dec 01, 2010 4:38 pm

A question;
What is it about the adjustment (eg. activator) that creates the change in subluxations?
I gather that it is not about force as was explained to me last night, but the thought came to me that such subtle pressure would surely mean that the 'alignment' would be subjected to many types of 'manipulations' during everyday occurrence as well as massage and other 'contact'.
On another site I had a very aggressive response when posted about spine alignment and de-generative diseases and the response was along the lines of chiropractors cannot correct subluxations.
Thanks Dr.

User avatar
civickiller
Family Elder
Posts: 558
Joined: Thu Feb 04, 2010 3:00 pm
Location: Hawaii

Post by civickiller » Wed Dec 01, 2010 9:23 pm

On Monday I went to get my atlas realigned. Brief history of head truma, age 13 fell 10 ft on my back hitting my head. Doing head hand stands June '05, fell and the next day I had my first MS exacterbation(sp?)

On scales, left leg had 60more lbs than right. Infared laser put right hip 3/4" and right shoulder 1 1/4 higher. After realignment, on scales 10Lbs more lbs on right, right hip 1/4 higher, shoulders same, legs same

Atlas Laterality: 3/4 Left
Lower Angle: 1 3/4 Right
Frontal Plane: 2 1/2 Left
Atlas Rotation: 2 P
Axis Rotation: 4 1/4 Right
Short Leg: Right

alittle better balance. Walking with my cane now feels like walking instead of just swinging my leg. Not perfect but better after my atlas got realigned

My right side, arm and leg, are weak. My left side is fine.

Any input I would appreciate

User avatar
blossom
Family Elder
Posts: 1394
Joined: Thu Dec 03, 2009 3:00 pm
Location: south western pa.
Contact:

ccsvi

Post by blossom » Wed Dec 01, 2010 9:37 pm

dr. flanagan, what is your opinion of inversion tables? i don't mean useing them to hang like a bat [even if i could] but just a slight inversion. the reason for asking is when i do this i do feel relief and move slightly better for a little while. i can not use the reg. inversion table i have so my brother kinda modified plywood "i guess you might call it a redneck inversion table". the inversion is slight and no ankle straps. would this cause harm or good for the spine?

i did have my bed inclined before the ccsvi treatment and it amazed me how fast my feet would warm up and i did sleep well but saw no other benefits. had mixed opinions as it's effects on someone useing after ccsvi procedure so i leveled my bed. would this cause harm or good for the spine?

User avatar
uprightdoc
Family Elder
Posts: 1995
Joined: Thu Sep 30, 2010 2:00 pm
Location: USA
Contact:

Post by uprightdoc » Thu Dec 02, 2010 3:06 am

civickiller wrote:On Monday I went to get my atlas realigned. Brief history of head truma, age 13 fell 10 ft on my back hitting my head. Doing head hand stands June '05, fell and the next day I had my first MS exacterbation(sp?)

On scales, left leg had 60more lbs than right. Infared laser put right hip 3/4" and right shoulder 1 1/4 higher. After realignment, on scales 10Lbs more lbs on right, right hip 1/4 higher, shoulders same, legs same

Atlas Laterality: 3/4 Left
Lower Angle: 1 3/4 Right
Frontal Plane: 2 1/2 Left
Atlas Rotation: 2 P
Axis Rotation: 4 1/4 Right
Short Leg: Right

alittle better balance. Walking with my cane now feels like walking instead of just swinging my leg. Not perfect but better after my atlas got realigned

My right side, arm and leg, are weak. My left side is fine.

Any input I would appreciate
Hello Civickiller,
You are certainly a good candidate for upper cervical care and you responed well but I need to know more about the particulars of your case if you could fill me in some more.

User avatar
uprightdoc
Family Elder
Posts: 1995
Joined: Thu Sep 30, 2010 2:00 pm
Location: USA
Contact:

Re: ccsvi

Post by uprightdoc » Thu Dec 02, 2010 3:09 am

blossom wrote:dr. flanagan, what is your opinion of inversion tables? i don't mean useing them to hang like a bat [even if i could] but just a slight inversion. the reason for asking is when i do this i do feel relief and move slightly better for a little while. i can not use the reg. inversion table i have so my brother kinda modified plywood "i guess you might call it a redneck inversion table". the inversion is slight and no ankle straps. would this cause harm or good for the spine?

i did have my bed inclined before the ccsvi treatment and it amazed me how fast my feet would warm up and i did sleep well but saw no other benefits. had mixed opinions as it's effects on someone useing after ccsvi procedure so i leveled my bed. would this cause harm or good for the spine?
Hello Pennsylvania Redneck,
Inversion is a wash. Do it only if it makes you feel better.

User avatar
uprightdoc
Family Elder
Posts: 1995
Joined: Thu Sep 30, 2010 2:00 pm
Location: USA
Contact:

Post by uprightdoc » Thu Dec 02, 2010 3:16 am

Hello all,
I will be offline until later this weekend.

User avatar
costumenastional
Family Elder
Posts: 743
Joined: Sat Jan 31, 2009 3:00 pm
Location: Greece
Contact:

Post by costumenastional » Thu Dec 02, 2010 6:13 am

Have a nice rest Dear Doctor Flanagan.

http://www.ucrf.org/projects-funding/pr ... s#cerebral

User avatar
HappyPoet
Family Elder
Posts: 1413
Joined: Thu Jul 09, 2009 2:00 pm
Contact:

Post by HappyPoet » Thu Dec 02, 2010 8:35 am

Dr. Flanagan, See you on the far side of the weekend.

Costume, Thanks for the link. I hope the study receives enough financial support. Reading that page gave me an understanding of some of the costs involved in getting a study up and running. The flow charts are especially useful in showing the steps necessary in setting up a proper study.

~HP

Post Reply
  • Similar Topics
    Replies
    Views
    Last post

Return to “Chronic Cerebrospinal Venous Insufficiency (CCSVI)”