CCSVI and CCVBP

[Robnl]

Stone is our favorite,but the one with your own small frying pan is nice..
We got both...

[mystery1980]

Hello Francis,

I am trying to get a better perspective on the chronology of your condition. It certain conditions are caught early enough the prognosis is better.

Has anyone thoroughly tested the muscles in your arms and legs including: !) fingers, wrists, arm, and shoulder muscles and 2) toes, feet, leg and thigh muscles? If the muscles have been tested what is their grades of strength from 0 - 5? What is the nature of the reflexes in your arms and legs? Are your reflexes normal, over or under active? Do you have any pathological reflex signs such as Babinski or Clonus?

Hello Dr. Flanagan,

First I want to say the best wishes for 2015!

What I remember the physiotherapist tested my grip strength and that was between the 1 and 2.
In the hospital the tested I believe once my strength in legs and according to the neurologist it was a 4 but a staigair tested me before the neurologist and she said it was less than 4, so I don't know what to believe.
In the years that I visite the hospitals the make many "mistakes" so my trust is a little bit gone I'm sorry

The reflexes were what the first said over active most of the time, and I believe I have no sign of babinski but I have to check the papers and Clonus I don't know I also have to check the papers if there is written about it?

Kind regards,

Francis

[uprightdoc]

Hello Francis,

Happy New Year.

Your grip strength and possible over-active reflexes suggests compression of the motor tracts that start in the brain and connect to the spinal cord. A Hoffman sign is a pathological reflex used to further check for upper motor nerve problems between the brain and cord. Your upper body strength and reflexes need to be compared to the lower body.

The 3 to 4 grade level in your legs needs to be checked further to determine if you have upper or lower motor nerve problems. If you have compression of the cord that is causing the weakness in your fingers then you should also have over-active reflexes in your legs. You should also have a Babinski sign or clonus sign. A Babinski sign causes an exaggerated and characteristic abnormal reaction in the foot muscles when the bottom of the foot is stroked. A clonus sign is a tremor in your foot muscles after the achilles tendon is stretches and then suddenly released.

Over-active reflexes and abnormal signs such as Hoffman's, Babinski and clonus indicate upper motor nerve tract problems between the brain and cord. The Lhermitte's sign in your case further confirms upper motor nerve tract problems. The sign is the electric feeling you get when you flex your chin toward your chest. The signs can indicate if the Chiari or the T 4/5 disc/bone fragment is causing the problem. They could both be contributing to your condition. The signs can also help determine the course of treatment and therapeutic strategies.

[Robnl]

Hi doc,

All the best in 2015, for you and your family.

Babinski/clonus also occurs here. L'hermitte not.

What i do notice is that breathing gets difficult / short when standing real straight

[uprightdoc]

Thanks Robert and likewise the best for you and you family as well.

There are several problems that can cause short, more difficult breathing when you stand upright. The cause could be neurological but you don't have a Lhermitte's sign so I don't think you have adverse mechanical tension in the cord. It could be caused by descent of the brainstem in the posterior fossa when you are upright. It could be caused by muscular imbalances related to your condition and daily activities. I would check your respiratory movements, diaphragm muscle and related back, flank, hip and abdominal muscles related to respiration.

[Robnl]

Thx doc,

Yes, my physiotherapist also said that it's probably caused by sitting most of the time. Then a full standing upright is an unusual position.

Btw, we used the stone grill yesterday

[uprightdoc]

Robert,

Among other things, I suspect you may have shortening of the iliopsoas hip flexor muscles. The psoas muscle attaches to the crura on the underside of the diaphragm muscle. The psoas is antagonistic to the extensor muscles of the thoracolumbar spine called the quadratus lumborum. The combination of muscle tightness and irritation can cause flank pain made worse by respiration.

I like the idea of raclette parties for small groups in our tavern. I also like stone cook tops. The raclette also works well with the Mongolian Hot Pot parties I want to offer. They are both very social. It's a fun way to mangia mangia with family, friends and neighbors during the long cold north country winters.

http://www.bing.com/images/search?q=mon ... edIndex=65

[mystery1980]

Hello Dr. Flanagan,

I checked the papers what I have from the reports and here are some enumeration:

In 2004 has the cardiologist written in the report: sinus tachycardia and sinus arrhythmia based on a Holter test ( and some other tests ).
I came by the cardiologist because the "attacks", his conclusion was: vasovagal reaction further no clear rhythm problem found.

In 2005 they thought that I must have hyperventilation. I had to breath on there command and when they ask what I noticed, I said for example a dry mouth and afterwards they had written down in the report that I had hyperventilation. ( Witch I don't agree )

In 2006 I were visit Dr. Bonati he was in the Netherlands. He written down in the report based on the mRI images he saw:
I had a narrowing from the foramen on level C4/C5, C5/C6 and C6/C7 also deviations on level T4/T5 and probably on level L4/L5.

In 2006 they found on the mRI the syrinx and they wrote a disc protrusion but nobody said what the found and they wrote no severe abnormalities.

In 2008 in the report of the radiologist about the lumbar spine ( on mRI ) it says: there is some obliquity

In 2008 in the report of the radiologist about the total spine ( on mRI ) it says: there is a large syrinx visible from corpus C6 up to and including corpus Th4. On site there is a median hernia visible with some compression from the spinal cord para median left. So there is a canal stenosis visible on the level Th4/Th5. Further there a no special details.

In 2008 in the report from the neurologist it says: on the cranial nerves no details. Locomotion some reduced foot tepping on the right. Locomotion on the hands is complete intact. Coordination Romberg unstable. Knee heel test discrete sensors atactie ( I don't understand what it means? ) Abdominal skin reflexes on the right bottom two absent, rest present. KPR both sides +2, APR on the right +3, left +2, Plantar reflex both sides, plantar flexion sensibility intact, reduced vibrations on the legs, positions intact. Bi pyramidal syndrome on the legs.

In 2009 in the report of the radiologist from a mRI of the skull it says: strong mucosal swelling of the right sine sphenoidal, no instructions for a Chiari.

In 2010 in the report of the radiologist it says: the syrinx has a maximum thickness of 4 mm and maximum transversal diameter of 6 mm.

In 2010 in the report of the neurologist it says: advanced on the policlinic because a numb feeling on the right leg, worse walking.
Intermittent tighten right leg, KPR both sides +1, APR both sides +1, VZR both sides indiff.

In 2012 in the report of the neurologist it says: cranial nerves anisocore pupils left 2 mm greater than right LR +/+ after the fall of the stairs the discovered a battle sign behind my left ear ( so where I still feal the swelling ) Reflex arms +1/+1, KPR both sides +2, APR both sides +3 VZR both sides plantar, pressure pain cervical and occipital also they spoken about a clinical skull fracture.

In 2013 in the report of the neurologist it says: reflexes arms +1/+1 KPR both sides +2, VZR both sides indiff. Romberg some unstable ( dissappears by distract ) Dix-Hallpike negative

In 2013 in the report of the ear specialist it says: no explanation on AS or labyrinth left what can explain the dizziness. Probably contusion on strain level.

In 2013 in the report of the neurologist it says: cranial nerves pupil left some increases, well normal pupilsreflex. Test from Donders trouble with vision in left temporal section, left eye stands some more to nasal focused. Force M. SCM and M. Trapezius 5, arms and legs 5, VZR plantar flexie Barre negative, coordination: VTNP undisturbed KHP undisturbed, Romberg tendency to fall rearwards.

In 2013 in the report of the rehabilitation specialist it says: grip strength reduced both sides, sensibility reduced subjectively in particular the right leg. Force intact. Clonus of a few turns inducible in ancle both sides.

In 2014 in the report of the neurologist it says: MRC 5 grip strength right hand looks a little lower.
MM interosseii gr 4 right remaining 5 painful right wrist
Legs MRC 5 right costs more effort than left, for the reflexs she wrote down:
BPR +/+, RPR +/+, TPR +/+, KPR +/+, APR +/+, VZR both sides according to Strümpel, coordination: diadocokinesie, TNP undisturbed, KDG undisturbed, Romberg-Barre undisturbed, Rail corridor normal
* This neurologist said the first time a see her, she will found out what is "wrong" with me, and she looks the second time a see her on the mRI images and said I have functional complaints and I can go.

In 2014 I was by a orthopedist for my right knee because the pain wont go away, he said it was "overpressure" and in the report of the radiologist stood that there was a little bit moisture in my right knee.

- What I noticed in the past few years is that the specialists take over what others write, is that also so in Amerika?
- I noticed now a several times that when I want to wash / touch my lower legs it feels like there "burning" I didn't write it down by my complaints because its pretty new for me, what can it mean?
- I wonder if auto-immune deviation from blood samples can explain something? Because in 2008 my blood was tested on auto-immune values. And they tested on ANA this was positive. They also tested ENA and ANCA these were negative.

I hope with these information you can tell me maby a little bit more what it means for my condition?
And I'm sorry for the long text...

Kind regards,

Francis

[uprightdoc]

Hello Francis,

I agree with the neurologist who said you have "functional" problems. Fortunately for you, you don't have significant signs of brain, brainstem or spinal cord problems. If you did you would have over-active reflexes. Your reflexes range from normal to slightly under-active (decreased). Decreased reflexes are signs of possible stenosis of the outlets for the spinal nerves. You have some stenosis in those outlets in the cervical and lumbar spine. The decreased reflexes do not correlate well with your muscle strength tests. Your muscles strengh in your neck, shoulders, arms, and legs are mostly normal. If you had significant stenosis the muscles would be much weaker.

You have some vasovagal signs and unequal pupils that cannot be explained yet. Vasovagal symptoms and unequal pupils can be caused by irritation of the joints and muscles of the neck. You Dix-Hallpike test was normal. This indicates that the labyrinth of the ears used for balance is functioning correctly. You do have evidence of a skull fracture. It is important to know which bone was fractured. Fractures of the bones that form the base of the skull can affect the alignment of the upper cervical spine and other important tunnels in the base of the skull. It can also cause tension on dural membranes inside the cranial vault that can in turn strain tunnels and nerves inside the cranial vault. One of the doctors indicated that you have tenderness to pressure at the base of the skull and the cervical spine. Considering your history of trauma these findings are important clues. The other sign of significant trauma is the unusual disc hernia at T4/5.

You have a consistent finding of a Romberg sign. You fall backwards while standing still and looking forward. You did not indicate if your eyes were open or closed. You do have some ataxia or decreased sensation while doing the heel to shin test. You also have decreased sensation and painful sensations in your legs, especially the right leg. You have decreased sense of vibration in your legs. You have no obvious upper motor signs or pathological reflexes. You can successfully perform the rail corridor test (the sobriety test that requires you to walk a straight line with one foot place in front of the other. This indicates you have no balance of cerebellar signs. What you do appear to have is irritation and dysfunction (malfunction) of sensory nerves and pathways. The sensory and proprioceptive nerves are very important to balance. Proprioceptive nerves in your feet, ankles, knees, hips, and lower back send signals to the ears and cerebellum to control balance during upright posture. You are sending weak and confused signals to the ears and cerebellum. The cause of the dysfunction could be due to the syrinx but the evidence is not clear. You have no other signs to indicate the syrinx as the cause.


My opinion is that you have serious structural issues due to multiple significant and clinically relevant traumas, especially the scooter accident that left you unconscious. I suspect the scooter was thrust forward from under you and you rolled back onto your head and neck in a tight ball that strained the T4/5 area beyond its capacity causing a tear in the cartilage and hernia of nucleus. You have pelvis obliquity. This means that your legs, hips, pelvis and low back are twisted and tilted (misaligned). I suspect that the misalignments in your upper and lower spine are the cause or contributing to the sensory dysfunction and Romberg's sign.

I will review and compare your symptoms to the clinical signs mentioned above later.

[Robnl]

Nice video with dr damadian.


Interesting? I had to think of you, Francis....watching the video.

[mystery1980]

Hello Dr. Flanagan,

Thank you very much for your extensive answer.

What I don't understand is that the neurosurgeon in Germany also did some tests with me and he said that most of the complaints can explain with the syrinx and my situation is properly "dangerous".
The neurosurgeon in the Netherlands had make mRI images and he also tell me sort of the same story en also did the neurosurgeon in another hospital in the Netherlands?

What I remember from the tests is that when they tests me with "the hammer" on for example my knee, my leg flew up high and now I understand that there is something else written down in the report?

They also explain that when someone had "functional problems" the complaints are for real, but there is no clinicaly explanation for, and that is what the last three neurosurgeons told me, not in my situation because the syrinx and the problem on level Th4/Th5 can explain it for the most part for me.
And you tell something else now, or do I miss understand you know?

I have I picture from the "battle sign" its taken after a few days later then when I fell of the stairs, when I found it, I shall post it here.
Maby of the "record" but when I fell of the stairs, I was most likely also unconscious for a longer while.

@ Robnl thank you for the link, I look later on.

Kind regards,

Francis

[uprightdoc]

Hello Francis,

I posted your list of complaints below ...

....

Head and neck region:

- balance problems
- blurred spots ( flashes ) and diplopia to the eyes
- pressure on the skull / swelling behind left ear ( more than two years )
- stuffed lymph node on the left side at the jaw edge and in the neck
- concentration problems
- memory problems ( especially the short memory )
- headache from the neck ( especially on the left side )
- swallowing difficulty sometimes swallowed in saliva or drink / food or just very little saliva
- vertigo

Upper body:
- arms, hands and fingers ( especially on the right ) tingle and itch
- loss of strength in hands, especially grip strength
- "attacks" whats starts at the height of breast / ribs to the right as if a band is pulled tight and eventually goes right arm tingle and feel numb and often also the right leg

Lower body:
- power loss legs ( especially on the right )
- incontinence ( drops )
- distension ( according to the general practitioner PDS -> irritable intestine syndrome )
- "tingling", "itchy", "heavy", "numb spots" on the legs ( right knee feels more often "burning" )
- distance what I still can walk is approximately 5 min. before its going to hurt or the legs "bag"

General:
- very little energy / tired very quickly ( fatigue )
- no able to do two things at the same time
- "wrong" things to say / can not come on words
- unable to stand or sit in the same position for a while
- heat makes the complaints worse ( especially in the "head and neck region" )
- no more menstruation after I fall down the stairs ( before that well )
- not long above my power do something
- very low libido
- feeling on the left is different then on the right
- my vision is going backwards very quickly
- sensitive ( lower ) back
- not good against bustle, bright lights and noise be able ( to )
- cold / hot changes fast
- poor circulation
- sense of time is not right


Francis

I suspect that the syrinx formed before you were born due to small openings in the fourth ventricle. The tonsils of your cerebellum were also in a low position since birth due to your particular design. There is no evidence that the syrinx is expanding. The syrinx may be causing some of your symptoms such as sensory loss, pain and dysfunction in the arms and legs. It is not causing significant incontinence.

Most of your major symptoms are from inside the cranial vault and from the upper cervical spine and base of the skull that you probably fractured in the scooter accident. The misalignment and injury to the upper cervical spine and base of the skull is causing downward tension on the dura mater and brain displacing it toward a Chiari 0 position. The downward displacement of the cerebellum and the misalignment of the upper cervical spine is interfering with blood and CSF flow between the cranial vault and spinal canal. The obstruction to venous and CSF flow is increasing volume and pressure inside the cranial vault.

I suspect that the T4/5 disc fragment is causing the Lhermitte's sign. There were no other signs of abnormal tension in the cord indicated in your reports such as a Laseque's straight leg raising sign or Kernig's and Brudzinski's neck flexion signs.

The increase in knee jerk reaction is not clear based on other test findings and doctor reports.

Functional problems can cause just as much dysfunction as neurological ones. Functional problems caused by degenerated and fused joints from severe autoimmune inflammatory connective tissue disorders such as severe rheumatoid arthritis can cause as much disability and pain as neurodegenerative conditions such as multiple sclerosis. I suspect that some of the symptoms in your lower body are musculoskeletal. The chronic musculoskeletal strains are causing significant dysfunction. They are also contributing the Chiari and syrinx problems and making matters worse. Your balance problems are due to proprioceptive dysfunction in the lower body and upper cervical spine. Most medical doctors are not properly trained to diagnose or treat functional problems like yours. They still difficult for them to see a connection to trauma in conditions like yours that anyone with common sense can clearly see.

You need better physical tests and MRI of you upper cervical spine. It would be best to have the tests done upright. You should have an expert radiologist check for alignment of the joints and tears and degeneration in muscles and connective tissues of the upper cervical spine. It would be helpful to have upright flexion and extenion views. It would also be helpful to have upright Cine blood and CSF views. Professor Francis Smith is in London. In the meantime basic x-rays of your neck including AP, Lateral and open mouth odontoid would be useful.

You probably had a drop attack. You lost consciouness first and then fell down the stairs. Drop attacks can be cause by sudden pressure on the brainstem or decrease in blood flow to the brain.

[mystery1980]

Hello Dr. Flanagan,

I have to translate your text later on.
But here is the picture from the "battle sign" how the neurologist it calls.
The picture is taken a while after I fell of the stairs, I don't know anymore how long after it.



I remembered another question: Is a contusion from the brainstem after a few years still to see on a mRI?

Kind regards,

Francis

[uprightdoc]

Hello Francis,

Battle's sign and Raccoon eyes are indications of fracture of the base of the skull. Battle's sign idicates a frature of the occiput. The condyles of the skull are on the bottom of the occiput. The occipital condyles are part of the craniocervical junction of the upper cervical spine. I will have to go back and check the dates later but I thought that an emergency room doctor noticed a possible fracture in the skull after either the scooter or car accident. The doctor made a call to a specialist who said it was not a problem. That incident occurred before you fell down the stairs. The scooter accident and the fall down the stairs may have both caused fractures. The separate accidents most likely also caused serious injuries to the base of the skull and craniocervical spine. It is hard to imagine that the two traumas didn't injure your upper cervical spine.

[Robnl]

Hi doc,

Something i notice lately, is that i feel pain/pressure in the back of my head.
It's just below the skull, when i lat on my back and lift my head it's painful, but doesnt feel like muscle pain, it's more centered, in the middle. When i push with my thumb it's sensitieve/ pan.
When i sIt and bend forward it feeks like pressure , has it something to do with csf?