CCSVI and CCVBP

[coach]

Dr. Flanagan,
Just an update on what's going on with me. I did see Dr. Lee In Macon. Xrays he took showed a mis aligned atlas which he is treating with an atlas orthogonal pneumatic adjuster. Also lumbar spine shows some curvature, not pronounced but curvature nonetheless. Seeing him once s week. Could the adjustments be causing a seemingly increase in number of headaches? Similar to when one gets braces tightened they experience temporary discomfort. How does one know if adjustments are working? No improvements yet but I know it's early on and it is a process.

[uprightdoc]

hi dr. flanagan, i found dr. craig weimer dc ccsp dabco---midtown chiropractic--phone no. 724-437-4020. he is in my hometown.

ironically, i had went to him some yrs. ago. at that time i really paid no attention to types of chiro.'s. someone said he was good and i tried him. what i recall is vague and more than likely since i was not getting relief in a certain time frame and money matters at that time is probably why i stopped. i'm not sure if he was a dabco chiro. back then.

if you have a way of checking him out if you feel necessary i'd appreciate it.

if he ends up being the starting point, i plan on filling him in on ccsvi and you and how much advice from you has helped us here and that i am still going to seek your advice when needed. if he has not heard of you, he will, because i got a couple extra copies of your book and i plan on giving him one.

Blossom,
I can't find him on the DABCO website but I doubt he is making false claims which would be medical fraud. The CCSP is related to sports. The DABCO on the other hand, is perfect for what you need - a good old fashioned orthopedic examination from head to foot, especially the lumbar spine, pelvis and legs. In addition to orthopedic tests I would also check femoral, popliteal and tibial pulses in both legs and feet.

[uprightdoc]

I have gone back to see the chiro 4 times once a week with each time my right being shorter and him having to make an adjustment to the atlas.
My question is should I start seeing him twice a week to always keep my atlas in alignment till it stays in alignment or even though my atlas goes out of alignment every week, correcting it once a week will eventually lead to my atlas staying in alignment?

Hello Civickiller,
I would let the chiropractor do his thing. Chiropractic is a science but it is also an art. No two doctors are exactly alike any more than orthodontists. He is being very conservative but slow and steady will get you there and eventually the connective tissues of the head and neck will adjust to the new position and maintain it longer. Some MS patients however have significant weakness and structural imbalances such as severe scoliosis that affect how a patient holds an adjustment. Time will tell.

[uprightdoc]

Dr. Flanagan,
Just an update on what's going on with me. I did see Dr. Lee In Macon. Xrays he took showed a mis aligned atlas which he is treating with an atlas orthogonal pneumatic adjuster. Also lumbar spine shows some curvature, not pronounced but curvature nonetheless. Seeing him once s week. Could the adjustments be causing a seemingly increase in number of headaches? Similar to when one gets braces tightened they experience temporary discomfort. How does one know if adjustments are working? No improvements yet but I know it's early on and it is a process.

Hi Coach,
Yes, upper cervical adjustments can give you muscular type headaches similar to getting braces tightened. It's a good analogy. When the ten pound head is shifted to a new position the connective tissues sometime feel the strain but eventually they adjust. It shouldn't last and hot showers and a small rolled up towed under the neck while you lay down can give the neck muscles some simple relief.

Different doctors use different parameters to monitor progress which I have discussed previously. In addition to chiropractic tests I also used standard orthopedic and neurological tests. Most upper cervical chiropractors do not. I used to keep daily soap notes with the patients major signs and symptoms and track them each visit. Again, most upper cervical chiropractors don't. Instead they stick to monitoring leg length, heat temperature differentials and postural analysis for example. Anyway, if the doctor doesn't monitor your symptoms then you should write them down and keep a log. Your first goal post is the one month mark.

[blossom]

dr. flanagan, thank you. by checking him out i did not mean he would list himself fraudently. i just wondered if there was someway you have of seeing how good he is in the field. sorta like with anything, just say for instance some docs doing ccsvi are getting recommended more highly than others.

i have a question and i know i am jumping the gun.--i had had as you know atlas adj. about 4 yrs. ago in the 4 mo. i went i had improvement in tmj and low back pain which had been pretty bad since 1990 fall. this held until last summer when an incident happened that my jaw snapped and the tmj is back"not as bad but it is there". my low back hurt some for awhile but has pretty much subsided. what i was wondering is "which i think i know what you will say"is, does anyone get their atlas worked on by a nucca dr. while they are getting treated by a chiro. like i will be doing. i think i recall you saying to me that all the tilt from the bottom up in a case like mine is would be causing atlas problems.

i am amazed especially after seeing my recent x-rays that i have no real back pain or neck pain and no headaches. the most annoying is a burning pain i get in my right back say behind my ribs where my back has become more humped through the yrs. and this started after wheelchair. when i can take pressure off it stops. my pain and numbness is more in the muscles of my legs. also feet are like ice and purple but when lying down they warm up and color is normal.

well, here we go. thank you again.

[uprightdoc]

i have a question and i know i am jumping the gun.--i had had as you know atlas adj. about 4 yrs. ago in the 4 mo. i went i had improvement in tmj and low back pain which had been pretty bad since 1990 fall. this held until last summer when an incident happened that my jaw snapped and the tmj is back"not as bad but it is there". my low back hurt some for awhile but has pretty much subsided. what i was wondering is "which i think i know what you will say"is, does anyone get their atlas worked on by a nucca dr. while they are getting treated by a chiro. like i will be doing. i think i recall you saying to me that all the tilt from the bottom up in a case like mine is would be causing atlas problems.

i am amazed especially after seeing my recent x-rays that i have no real back pain or neck pain and no headaches. the most annoying is a burning pain i get in my right back say behind my ribs where my back has become more humped through the yrs. and this started after wheelchair. when i can take pressure off it stops. my pain and numbness is more in the muscles of my legs. also feet are like ice and purple but when lying down they warm up and color is normal.

You can be treated by both types of chiropractors for sure but right now what you need is an orthopedic evaluation which most upper cervical chiropractors do not check. Regardless of pain you need your low back, pelvis and legs checked because of your history and falls and fractures as well as leg weakness and neurovascular problems in the legs and feet. Twists in the pelvis such as yours distort major neurovascular tunnels where nerves and blood vessels exit the pelvis and enter the legs. Distortions of the neurvascular tunnels can cause symptoms in the feet similar to carpal tunnel symptoms in the wrist and hand.

[blossom]

dr. flanagan, no picking your brain for the moment. i just want to thank you one last time in 2010 for coming to tims with your vast knowledge in your field of medicine and willing shareing it with compassion and truth that is helping some already and hopefully many many more in the future. the door has been opened and i hope you and your field of medicine can make the mark that is overdue. we need all fields of medicine in this vicious fight against the symptoms someone decided to name ms.

so, so glad we found you in 2010 and thank you so much for being here because for some our futures in 2011 and beyond will be brighter. one shoe does not fit all. no stone unturned.

the very best to you and your loved ones in the new year.

[HappyPoet]

Happy New Year, Dr. Flanagan!

Blossom said it all.

[uprightdoc]

Thank-you, and happy new year.

[blossom]

dr. flanagan, i will have my first appt. wed. i stressed needing time no rush. the receptionist said he always trys to take new patients last and allows 1 hr. 15 min. consultation and more if necessary. hope this is a good sign.

nothing ventured nothing gained. so, i'll let you know what happens. whenever i think about my x-rays and how crooked everything looks i really want to cry. yrs. and not knowing and it getting to this point.
but it is what it is now.

no matter if it's dr.shelling's view of blood flow issues or dr. zambonni's view of the blood flow issues all this out of whack bones in the neck and spine in layman's terms to me would cause a log jam if my veins were a river.

[uprightdoc]

Hello Blossom,
The doctor sounds like a good one. That's the amount of time it should take for a thorough history and exam such as you need.

It's funny you mention a river because I often use it for analogy purposes. The spine is the frame of the body and the major blood vessels follow its course. Your rivers are bent which can lead to log jams.

[LadyGazelle]

Hello Lady Gazelle,
According to Dr. Chuck Woodfield of NUCCA's research division, Dr. Adamczuk is the best NUCCA doctor in the northeast and she has over 32 years experience. I'd say you are a lucky Lady Gazelle. Keep me posted and if you can post your upper cervical x-rays for us to see of have the doctor post them if possible.

Dear Dr. Flanagan:

I went ahead and made an appointment with Dr. Adamczuk but it won't be until May. The first two visits will be expensive but then adjustments $43 for as long as necessary. I saw my primary care doctor yesterday, and he would NOT give me a prescription for the chiropractor, because he said a chiropractor could do more damage (so Medicaid won't reimburse me). I am going anyway so my husband cashed in his stock with Metropolitan Life for me to cover the chiropractor (+?) a hotel? (see below)

Dr. Siskin wrote he... "FELT the moderately severe stenosis was due to vertebral compression, and therefore no intervention was performed." So now my PCP thinks possibly a CT scan and angio might be needed. He KNOWS that my neurologist is unaware I had venoplasty (my choice) but he wants me to ask him if MRI is needed. I am not going to ask him, because I think my doctor wants him to know and more than likely pass this problem off on him. What would a NEUROLOGIST know about veins and vertebral compression?

By the way, my ultrasound before the procedure had TWO (Zamboni) criteria for CCSVI - and the followup ultrasound a month after shows THREE out of five criteria and "continued followup is recommended." He said to come back in 6 months.

I plan on getting my neck fixed (if possible) by Dr. Adamczuk and then going to Brooklyn for "FOLLOWUP", if he will see me. Medicaid will pay if it's in New York State but the hotel will probably cost as much as Dr. Adamczuk charges! YIPES

If I can take a picture of any Xrays from Dr. Adamczuk, I'll post here. I am waiting for the images from the ultrasound that was done December 14, 2010. I have a copy of the previous ultrasound, but I don't know how to post those here. If my son can make copies on his computer, I'll be able to mail them to Dr. Sclafani. I'd like to know when I should get my name on the waiting list, but June or July would probably when I'll be ready physically (after Dr. A) - although I'm always ready mentally!

Thanks for your input about having the CT scan with angio. I am 59 years old, and not too interested in radiation, either. Besides, what would a medical doctor do? I'll stick with a non-invasive approach, thank you!

Lady Gazelle
www.ccsvi-ms.blogspot.com (updated periodically as needed)

[ErikaSlovakia]

Little update.
I went to see the chiropractor in Slovakia. He is really using the soft method. It was not pailful at all. He spent 1 hour fixing my bones.
Except others I had the atlas misalignment.
I am really glad I found him and I went there.
Erika

[LadyGazelle]

Dr. Flanagan,

I just got a call from my neurologist's assistant (neurologist out until 1/17) because my PCP wanted to know what test he would recommend to see the possible vertebral vein compression. He had to tell me hoe dangerous the venoplasty is, first and mentioned Buffalo's research.

I told him I am aware of them, but I am prepared to go to Brooklyn to see Dr. Sclafani and I will be seeing a NUCCA certified chiropractor first, although my PCP doesn't know it. I told him that he thinks that's dangerous too, and I have never taken any DMD's since I was diagnosed in 1974. (THEY are dangerous!!!)

He said MRA would be the preferred method over CT angiography, but he hasn't seen any notes regarding my concerns. So I asked him to call my doctor, and he will probably tell him I am going to see a chiropractor. (I don't think this assistant knows about NUCCA either.) I just need to know if she thinks she can help my possible vertebral compression. But first I have to find out if it's a vertebra causing moderately severe stenosis.

I'll keep everyone posted as soon as I find out how they will examine it.

Lady Gazelle

[NZer1]

Hi Dr,
A question, can touch testing for muscle stresses be enough to test for alignment of Atlas and upper spine?
When John checks my alignment, I am lying face down on the table. He starts at the tail bone and is gently putting one hand on the spine, pressing lightly and working upwards to feel for muscle tension. He works up to the base of my neck in this way and it takes only a minute or so. Then I am asked to sit on the end on the table and he slightly has me tilt forward my head. He then checks by touch the tension in my neck with slight rotations side to side of my head. Again this takes only seconds. In effect the 'test takes only a minute or two.
If there are any adjustments required he does them with the activator as he goes up the spine testing for muscle tension which I can feel when he finds a tension spot.
At present I have lost faith in the work he is doing and there is a break period of about three weeks over the Xmas/new year period before I return for treatment.
I do not feel any benefit from the adjustments he has done, in general I have had more tension in areas after adjustments have been made and this wears off, to be back to 'normal' after a day or two. So I am thinking either there is other problems or missed problems.
Any insights or questions or advice?
Regards Nigel.