CCSVI and CCVBP

[HappyPoet]

Hi Everyone,

All the PMs I sent today were lost by the system when it went down, so I'm going to put my reply to one particular PM here in case the system loses PMs again -- for confidentiality, I'm leaving off the person's name who asked me about any improvements I've had with chiro.

MY chiro adjustments (Atlas Orthogonal) helped with two of my worst symptoms:

Ability to walk/numb feet: The morning after my first adjustment, 100% of the numbness in my R foot was gone. After approximately four weeks -- with two needed adjustments -- 75-100% of the numbness in my L foot (worse foot) was gone. I went from a walker/power chair to a cane to no cane in about a month's time. Never before in my long history of having flares of numb feet has the numbness gone away in such a short amount of time.

Killer shark bite: Euphemistically called the MS Hug, this symptom, in which my torso feels like it is being crunched on, munched on, chewed on, bitten, squeezed beyond belief, and violently torn to shreds, was greatly helped after about four weeks.

I can tell when I've slipped out of adjustment because the numbness starts creeping back into my feet, and the shark starts feeding again -- and sure enough, once I'm back into adjustment, the numbness and shark start to leave.

I hope this helps!

[Perkele]

Perkele,
Again, the lateral veiw of your brain is near perfect. On the other hand, you have hypermobility syndrome and you appear to have a short steep base in the cranial vault. You may have an Ehlers-Danlos Syndrome (EDS) POTS type variation of MS.

Do you have any abnormal curvatures in the spine that you are aware of? Do you have any lesions in the brain?

Thanks for your reply Doc,

Could you describe more about "EDS/POTS variation of MS"?

I have been on a rheumatologist and she was specialized in EDS. She said that I don't clearly have EDS but I fall into category of hyper mobility syndrome. No genetic test was done because as she felt it was unnecessary.

I'm not really sure about abnormal curvatures in my spine but I think there might be some sort of problem on my thoracic spine. I have quite often "locks" on my chest area of spine. When my chest was measured by inhale exhale test my chest area growed about 11cm. Border line for hypermobility is 7cm. Rheumatologist thought that it might explain why my thoracic spine has some problems and ordered thoracic spine MRI. (At this moment I'm doing my master thesis so I can't afford to get those images right away.) I have had lumbar spine MRI and it was perfect according to two orthopedics.

Here is my front side chest x-ray. Press it to make it bigger.



I have over nine lesions on my brain (both frontoparietal white matter areas affected) all of them are sized 2-3mm. Doctors suspected that I could have had nonspecific ischemic infarct or chronic multiple sclerosis.

My first and only "attack" came when I trained physically very hard. I did hand stand push ups and abdominal wheel which I think created too much pressure in my head and chest area. Now two and a half years later no changes in brain MRI but I feel declining.

[Kathyj08]

Hi Dr.
I have been seeing the atlas adjuster for 5 weeks now. I wanted to give an update for those interested and considering going to one.
I have seen an improvement in sleep, still not great but definately better.
My balance has improved.
A little less headaches.
One of the best things is (and I don't know if this is placebo) but I feel more "with it". I am able to run errands but I used to dread it due to balance issues (I liked to grab a store cart to keep my bearings) and mentally it was great effort. Now I am finding myself making more stops and not thinking about it.

I am not sure what to credit this to but I do like it!

I have many more symptoms but have not seen change in them but maybe soon.

[coach]

One of those late night revelations. Cut and paste. Duh! I could have had a V-8.

[HappyPoet]

Hi Dr. Flanagan, thank you for your advice on the denneroll. I trust what you say. I'll stick with my customized Dr. Flanagan Program for my poor spine, but......

I have another confession to make. Last week I know I needed an adjustment, but I accidentally missed two appointments and have steadily gotten worse -- I lost track of time when my mind wandered while on the computer which made me miss one appointment, and I slept through the other appointment.

Come hell or high water, I'm going to make it to my afternoon appointment today! I do not want a pain pump implanted in my spine because of the shark eating me alive!

This is the second time this scenario of missing appointments and getting worse has played out which is keeping me from being able to see if AO can help other symptoms I have. But I'll get there.

~~~~~~~~~~

Hi Kathy, thanks for the update!! All very good news. Most interesting to me is what you say about being "with it" because I haven't felt that way in over a decade. I wonder if this is because your brain is now getting more oxygen. So happy for you!

Hopefully, others will post updates, too, and then we'd be able to start a sticky regarding outcomes from upper cervical chiro adjustments.

~~~~~~~~~~

Hi David, your AO appointment sounds just like mine! Thanks for sharing so much with us. I hope your appointment today goes well and that soon you'll be lifting your left leg as high as you want to lift it! Please keep updating us!

[LadyGazelle]

I had my CCSVI follow up on December 14th in Albany, and was told I have moderately severe stenosis in the upper portion of the left internal jugular vein that was felt to be likely related to vetrebral compression and therefore no intervention was performed. Angioplasty was performed at the base of the LIJV and a 10mm x 4 cm Durata balloon was used with high pressure for two minutes with improved luminal diameter and outflow of this vein.

Because the vertebral compression may be causing reflux, what should I do now? My chiropractor would like to know if there is anything he can do, but Medicaid won't pay for chiropractic services. Could the vertrebral compression be caused by lesions - as I have never had an MRI of my spine and Dr. Siskin who did the venoplasty said I may have broken my back in the past. I said no way - but I did have a whiplash. (He said no - it wouldn't be from that.)

I am thinking possible vertrebral surgery if necessary to correct the stenosis (paid by Medicaid) - but I have had MS for 39 years, and have degenerative disc disease too. Perhaps stents in the future would be my best option to look forward to. Any suggestions?

Thank you for your anticipated response.

LadyGazelle

[goldamier]

Hi Dr. Flanagan:

I really appreciate you taking the time to help us. I have a problem I was hoping you can help me with.

I have two lesions on my spinal cord. I used to have electrical shock but it has faded away. My major problem is my hands (palms and fingers on both sides) that they feel weird and sometimes burning sensation. I cannot describe the feeling.

I have recently realized that when I bend my neck backward, after 5 to 10 minutes, my hands feel normal which is really exciting (I realized it when I started doing Yoga about a month ago). However when I tilt my head forward (e.g., reading a book or typing) my hands get really bad that make me cry sometimes especially when I am at work.

I have talked to many PwMS but none of them have the similar issue. So I was wondering if you can help me. Thanks in advance.
Maria

[uprightdoc]

Perkele,
Again, the lateral veiw of your brain is near perfect. On the other hand, you have hypermobility syndrome and you appear to have a short steep base in the cranial vault. You may have an Ehlers-Danlos Syndrome (EDS) POTS type variation of MS.

Do you have any abnormal curvatures in the spine that you are aware of? Do you have any lesions in the brain?

Thanks for your reply Doc,

Could you describe more about "EDS/POTS variation of MS"?

I have been on a rheumatologist and she was specialized in EDS. She said that I don't clearly have EDS but I fall into category of hyper mobility syndrome. No genetic test was done because as she felt it was unnecessary.

I'm not really sure about abnormal curvatures in my spine but I think there might be some sort of problem on my thoracic spine. I have quite often "locks" on my chest area of spine. When my chest was measured by inhale exhale test my chest area growed about 11cm. Border line for hypermobility is 7cm. Rheumatologist thought that it might explain why my thoracic spine has some problems and ordered thoracic spine MRI. (At this moment I'm doing my master thesis so I can't afford to get those images right away.) I have had lumbar spine MRI and it was perfect according to two orthopedics.

Here is my front side chest x-ray. Press it to make it bigger.



I have over nine lesions on my brain (both frontoparietal white matter areas affected) all of them are sized 2-3mm. Doctors suspected that I could have had nonspecific ischemic infarct or chronic multiple sclerosis.

My first and only "attack" came when I trained physically very hard. I did hand stand push ups and abdominal wheel which I think created too much pressure in my head and chest area. Now two and a half years later no changes in brain MRI but I feel declining.

Perkele,
EDS patinet oftentimes have autonomic symptoms. Postural orthostatic tachycardia syndrome is an autonomic symptom. In contrast to tachycardia you most likely have orthostatic hypotension (low blood pressure). You also have a mild thoracic scoliosis and kyphoscoliosis is sometimes associated with EDS.

Hard weight training and abdominal wheel exercises cause Valsalva maneuvers and back pressure against the brain. Handstand push-ups cause inversion flows and back pressure against the brain. Normally the body can tolerate these conditions to a certain extent. However, if you have structural problems in the spine it can exceed the body's ability to adapt.

You have some disc bulging and compression of the vertebral veins in the upper neck and some in the lower neck but not too bad. Hyperflexibility condtions, on the other hand can cause the upper cervical spine to move excessively and irritate the upper cord and brainstem.

Your problems could be caused by hypermobility in the upper cervical spine. On the other hand, I suspect you may have an upper cervical subluxation causing non-specific ischemia as noted by the doctor mentioned above. Migraine headaches can cause similar looking lesions in the brain. It would also explain why you get dizzy when you stand up sometimes.

[uprightdoc]

I had my CCSVI follow up on December 14th in Albany, and was told I have moderately severe stenosis in the upper portion of the left internal jugular vein that was felt to be likely related to vetrebral compression and therefore no intervention was performed. Angioplasty was performed at the base of the LIJV and a 10mm x 4 cm Durata balloon was used with high pressure for two minutes with improved luminal diameter and outflow of this vein.

Because the vertebral compression may be causing reflux, what should I do now? My chiropractor would like to know if there is anything he can do, but Medicaid won't pay for chiropractic services. Could the vertrebral compression be caused by lesions - as I have never had an MRI of my spine and Dr. Siskin who did the venoplasty said I may have broken my back in the past. I said no way - but I did have a whiplash. (He said no - it wouldn't be from that.)

I am thinking possible vertrebral surgery if necessary to correct the stenosis (paid by Medicaid) - but I have had MS for 39 years, and have degenerative disc disease too. Perhaps stents in the future would be my best option to look forward to. Any suggestions?

Thank you for your anticipated response.

LadyGazelle

Hello Lady Gazelle,
It sounds as though you may have advanced spondylosis. Vertebral surgery will not help your problem. The IJV gets compressed as it bends around the upper cervical spine. Misalignments of the upper cervical spine can cause a nasty kink. A good case in point is CurIous who posted his x-ray and Ultrasound scans back in the begining of this thread. Mark has a kyphoscoliosis which impinged his IJVs. Stents make sense in cases like these. HappyPoet also has major curvature problems. The arteries and veins to the brain and cord follow the spine and sometimes suffer the consequences when the bends become severe.

The best, least invasive, least espensive and safest place to start at this point is to get your upper cervical spine checked and corrected. It's unfortunate that Medicaid won't pay for it.

[uprightdoc]

Hi Dr. Flanagan:

I really appreciate you taking the time to help us. I have a problem I was hoping you can help me with.

I have two lesions on my spinal cord. I used to have electrical shock but it has faded away. My major problem is my hands (palms and fingers on both sides) that they feel weird and sometimes burning sensation. I cannot describe the feeling.

I have recently realized that when I bend my neck backward, after 5 to 10 minutes, my hands feel normal which is really exciting (I realized it when I started doing Yoga about a month ago). However when I tilt my head forward (e.g., reading a book or typing) my hands get really bad that make me cry sometimes especially when I am at work.

I have talked to many PwMS but none of them have the similar issue. So I was wondering if you can help me. Thanks in advance.
Maria

Hello Goldamier,
Has anyone checked you for thoracic outlet syndrome (TOS)? Do you have any curvatures of the spine?

[Kathyj08]

Hi Dr.
I forgot to mention something in my earlier post when I was talking about my improvements.
I have noticed in the last couple of weeks when I first lay in bed, I feel dizzy or like I am falling for about 3 seconds or so and then it's fine. I also notice it sometimes when I flip over from one side to the other. I sleep on an inclined bed and it happens and when I lay on a flat bed it is even more noticable.
Different blood flow?

[uprightdoc]

Hi Dr.
I forgot to mention something in my earlier post when I was talking about my improvements.
I have noticed in the last couple of weeks when I first lay in bed, I feel dizzy or like I am falling for about 3 seconds or so and then it's fine. I also notice it sometimes when I flip over from one side to the other. I sleep on an inclined bed and it happens and when I lay on a flat bed it is even more noticable.
Different blood flow?

Hello Kathy,
Thanks for the updates. It takes time for the body to adjust to upper cervical corrections. It certainly sounds like changes in blood flow. It will probably fade as your body acclimates to the corrected position.

Please continue to keep me posted.

[uprightdoc]

Hello All,
My wife and I will be heading back home tomorrow. We will be stopping to visit family along the way and should be back by Wednesday or Thursday. If I missed any of your questions please post them again.

[LadyGazelle]

Thank you for the information about possible spondylosis yesterday. I have found a chiropractor that is NUCCA certified in Rochester, NY and will be requesting an appointment on Monday if she takes Medicaid. (probably doesn't)

But I do want to tell her how she can help others with MS by opening up their veins with chiropractic treatment if they have those issues. I'll let you know what I find out.

Her name is Dr. Irene Adamczuk (For those who don't know, NUCCA stands for National Upper Cervical Chiropractic Association and there are only 21 in the United States if my sources are correct). Very gentle, as I understand, with no cracking or twisting!

Lady Gazelle

[NZer1]

Hi Dr. I notice on Dr. Sclafani's thread that there is now more focus on the Vert Veins. I for one think that is where my problems are at.
I have now had 7 adjustments. For the first time my pelvis had held and did not require wedges prior to checking the rest of my spine.
The C3 is still giving indication of being out of alignment and required adjustment.
The rest of my spine had held alignment.
Symptoms are still up and down and generally speaking I have progressed, as though I had not had any treatment at all. During the weeks of adjustments I have had times after adjustment, that I know because of the C2 and C3 areas adjustments, I have an increase in fatigue, spasticity, urinary frequency, head aches, and strength in general. Why I have no idea, and it levels off after a couple of days. I am now having weekly adjustments and will asses whether to continue after the next visit on Thursday.
Because my MS progression is something that is slow and measurable only by my own understanding of my ability it is hard to see reason for continuing treatment.
I personally would like to have another MRI as I haven't had one for over two years and see if there is any change, particularly with cord lesions. Having CCSVI protocol inspection would be my ultimate goal but the cost of travel overseas and the cost of tests it is beyond us at present. The family have needs and I cannot see the expense of this test at this time in CCSVI knowledge being worth the dollars.