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can anyone point me in the right direction
Posted: 15 February 2014 10:35 PM   [ Ignore ]  
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do you see anything that will help me get a diagnosis?  I have intense arm pain, all over pain, constant pain for 15 years.  chronic fatigue, eye issues, trouble walking, late night heart palpitations and so much more.  it seems to get worse year by year but the doctors always say my labs look fine and to just lose weight and i’ll be fine. help. Help! HELP!!!

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Posted: 16 February 2014 05:22 PM   [ Ignore ]   [ # 1 ]  
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Hi,
Have you ever had an accident that started this off, or are you hypermobile ?  Have you had an MRI of your head, or just neck.  I would be interested in seeing your head MRI, if you have one, to see the state of your pituitary and to look for any excess cerebro-spinal fluid (CSF).

I am not medically trained but I have been studying MRI’s for 6 or 7 years now. I can see several potential problems on this MRI but it is late and it will take me some time to examine and explain, so I will try and look at it again tomorrow.
Barbara

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Posted: 16 February 2014 06:39 PM   [ Ignore ]   [ # 2 ]  
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I don’t have a mri of my head.  I have mri of my thoracic and lumbar spine.  I was in a car accident at 17 and started having the true pain at the age of 23.  but now I look back and realize I had a heavy head feeling and neck problems since I was little.  This MRI was done laying down.  My chiropractor says that in my x-rays(which are done standing) that it looks like my spine is shoved into my skull. 
My left arm hardly works and hurts so bad.  I haven’t been able to work in years because of all the pain and weakness in my upper body. my heart races when I sleep at night. I have eye disturbances.  all kinds of issues but I can’t find a doctor to take me seriously.  they all want to put me on antidepressants and I have already went down that road. It doesn’t help.  Neurontin doesn’t help either.  This mri was done in 2009.  the main things on the report that were not mentioned to me at the time were borderline canal stenosis and hypertrophy on the atlantodens articulation.  I am so curious to know what you or anyone else thinks of this mri.  I suspect that my odontoid is pressing on something when I am in an upright position.

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Posted: 17 February 2014 04:52 AM   [ Ignore ]   [ # 3 ]  
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I have annotated a copy below to highlight some of the matters that I think are important, then I will explain why.
Barbara
(UK)

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Posted: 17 February 2014 05:45 AM   [ Ignore ]   [ # 4 ]  
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So why can a ‘short clivus’ be problematic:
It can allow the tip of the odontoid to prod or compress the brainstem, especially if the ligaments have been injured.

So why are low-lying cerebellar tonsils (CT)a problem:
This is a part of your brain that should be 5mm above the opening at the bottom of your skull, to allow free flowing Cerebro-Spinal Fluid (CSF). Low-lying CT can cause a ‘bung’ in the system and contribute to build up of pressure in the head. Over time, this pressure can flatten the pituitary gland, causing a whole range of problems, including weight gain!  It may be that you need to get treatment to lose weight!

What is a Retroflexed Odontoid and what difference does it make:
The odontoid is the ‘peg’ part of the C2 bone, if it points backwards towards the spinal canal it is referred to as ‘retroflex’. A normal C2 odontoid points straight up and is less of a threat to the brainstem. 

What is the significance of a Pannus:
A normal person, whose head is firm and secure, will not have a pannus.  A pannus occurs where there is instability and therefore is a medical ‘sign’ of instability.  It’s a pad which the body produces here against the tip of the odontoid, to help safeguard the brainstem from insult and, although it no doubt does help, that help is far from adequate for anything other than very mild instability.

Why does it matter if the posterior arch of C1 encroaches the spinal canal:
The spinal canal needs to be a smooth channel down which the spinal cord and CSF can pass freely, without obstruction.  Anything interfering in this smooth passage can alter the fluid dynamics/flow, or impact on the spinal cord. I would also be asking why this is happening, i.e. has your atlas subluxed, or is it unstable ?

What is the anomaly at C4/C5:
There appears to be some change in signal here, where I would expect to see fluid, there is something making an impression on your spinal cord, is it from a disk ? I don’t know but if you look at the line of your spinal cord, it gives this object a ‘body swerve’ if you get my meaning, so it’s obviously aggravating the spinal cord.

Hope some of this is useful, let me know if you need to know anything else.
Barbara
(UK)

 

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Posted: 17 February 2014 06:35 AM   [ Ignore ]   [ # 5 ]  
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Here’s some further points, suggesting cervical instability, I think your condition could be being aggravated by putting your head into flexion. 

I would try and avoid that by doing whatever tasks you can sitting down (so that your head is looking forwards and not down). Lift your work up to eye level too, i.e. raise laptops, use bookrests, adjust a gas-powered office chair to the appropriate height.  If I were you, I’d be wearing a phladelphia collar with liners too.
Barbara
(UK)

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Posted: 17 February 2014 06:45 AM   [ Ignore ]   [ # 6 ]  
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ttpookinz - 16 February 2014 06:39 PM

I don’t have a mri of my head.  I have mri of my thoracic and lumbar spine.  I was in a car accident at 17 and started having the true pain at the age of 23.  but now I look back and realize I had a heavy head feeling and neck problems since I was little.  This MRI was done laying down.  My chiropractor says that in my x-rays(which are done standing) that it looks like my spine is shoved into my skull. 
My left arm hardly works and hurts so bad.  I haven’t been able to work in years because of all the pain and weakness in my upper body. my heart races when I sleep at night. I have eye disturbances.  all kinds of issues but I can’t find a doctor to take me seriously.  they all want to put me on antidepressants and I have already went down that road. It doesn’t help.  Neurontin doesn’t help either.  This mri was done in 2009.  the main things on the report that were not mentioned to me at the time were borderline canal stenosis and hypertrophy on the atlantodens articulation.  I am so curious to know what you or anyone else thinks of this mri.  I suspect that my odontoid is pressing on something when I am in an upright position.

What I think your chiropractor is suggesting is called ‘basilar invagination’ or ‘cranial settling’, if you want to look it up and see if that fits.

You say your heart races when you sleep at night, have you tried raising the head of your bed, or sleeping upright ?  Your symptoms sound like some of mine, I have to sleep upright, I have craniocervical instability, have you been checked for this ?
Barbara
(UK)

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Posted: 17 February 2014 07:07 AM   [ Ignore ]   [ # 7 ]  
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I have looked at the Grabb-Oakes measurement (which may be wrong if my scaling is wrong!) but it gives you an idea.

If you look carefully at the brainstem, you can see an impression of the odontoid, I have put a thin red line on for your guidance.
Barbara
(UK)

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Posted: 17 February 2014 07:25 AM   [ Ignore ]   [ # 8 ]  
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You may find some more useful information in the post I made showing my head MRI annotated and the subsequent posts talking about possible treatments.

http://prettyill.com/forums/viewthread/712/

Barbara
(UK)

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Posted: 17 February 2014 07:35 AM   [ Ignore ]   [ # 9 ]  
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Is surgery the only option for relief?  Are there operations where they just remove the pannus from the odontoid?  The pressure in my neck is killing me.  I can hear trapped csf as it gets released sometimes.  The doctors think I am crazy.  I am obese.  But when this all started I was perfectly thin and super active.  I have been asking doctors,chiropractors, massage therapist, acupuncurist, etc. to help me for 15 years.  Nothing they have suggested has ever helped.  Some of it has progressed my symptoms.  They all think I have Fibromyalgia.  Thank you for your time and your opinion.
I have suspected I have basilar impression and chiari.

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Posted: 17 February 2014 08:11 AM   [ Ignore ]   [ # 10 ]  
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Hi,
Of course surgery is one option. I haven’t had surgery, I had a head and neck injury in 2002, here in the UK I have been unable to get surgery, instead they are using the ‘conservative’ treatment of a Philadelphia Collar (and for a few years a body brace) 24/7, it seems extremely cumbersome at first because it puts your head back in it’s rightful place (instead of hung forwards!) for maximum CSF flow (which of course your body isn’t used to!) but eventually you get used to it and as your symptoms improve, you’re GLAD of it. I don’t even notice it now.

The thing is with the pannus, that’s your bodies defence, if anything needs removing it would be the rogue part of the odontoid but even then, without stability, your efforts are futile, you need to work on keeping it stable.

Without a doubt you need a collar, not a soft collar either, as this doesn’t support your head, the best collar I’ve found is a philadelphia collar (but you do need to wash it daily and wear liners, for comfort!).

Also ensure you get Vitamin C regularly throughout the day, and make sure you eat sufficient protein everyday because without either of these, your body will struggle to make collagen. You need your body to make the best collagen it can, to produce strong ligaments at the cranio-cervical junction because your head is held on by ligaments, there’s no bones holding it.

If you have bone pain, get your vitamin D levels checked, a supplement can make all the difference. Massage helps me with the body pain but the collar severely reduced my overnight body pain.  An epsom salt bath helps your body replenish Magnesium, which eases the muscle pain. If you get leg pain in bed, make sure you keep your legs 6” lower than your bottom.

If you have energy issues you are probably B Vitamin deficient too, a supplement of these helps, even if you eat well, as often our gut issues hinder absorption.

Don’t forget, try raising the head of your bed, or sleep sitting up.
Let me know how you go on
Barbara
(UK)

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Posted: 17 February 2014 08:21 AM   [ Ignore ]   [ # 11 ]  
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ttpookinz - 17 February 2014 07:35 AM

  They all think I have Fibromyalgia.  Thank you for your time and your opinion.
I have suspected I have basilar impression and chiari.

Have you checked out the symptoms checker which compares Fibromyalgia, Chiari and Spinal cord compression, at

http://www.nfra.net/Symchart.htm

This is what allerted me to the possible chiari involvement, years ago.

 

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Posted: 17 February 2014 12:59 PM   [ Ignore ]   [ # 12 ]  
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Do you have Chiari Malformation as an official diagnosis?  Do you think I would qualify for at least Chiari 0?  I read some of your other posts. They are so informative.  Thanks for being so giving with your time and opinions.  I tried magnesium supplements, oils and baths about 2 years ago along with some natural antibiotics like colloidal silver and grapefruit seed extract.  It almost killed me.  I released so much toxins that I developed some kind of kidney stone and amazingly large tonsil stones.  How do you clean your lymph system?

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Posted: 17 February 2014 03:10 PM   [ Ignore ]   [ # 13 ]  
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After fighting with this lot for 6 years, in 2008 I flew across the Atlantic to The Chiari Institute in New York, as I believed I had found a man who really understood the problems I was suffering. He was a great educator and I watched all of his videos before going across. His name was Dr Bolognese, I have deep respect for this man, despite any bad press he has received in recent years. He has helped thousands, there are bound to be the odd few that haven’t enjoyed the same amount of success but overall he has done much good in this world, where others turned their backs.

He diagnosed me with ‘Brain Compression’.  His colleague Dr Milhorat carried out further testing (invasive cervical traction - NOT to be recommended!) and diagnosed ‘Post-Traumatic Cranio-Cervical Instability’ but I didn’t qualify for the Chiari diagnosis, as my cerebellar tonsils weren’t herniated by 5mm, so I was told they were ‘low-lying’. Dr Nishikawa, the morphometrics man, was very helpful too with his measurements and when I put my hypothesis to him, that I thought my brainstem was being pincered between my odontoid and opisthion, he looked at it and he thought it also.

Here in the UK I consulted with Dr Raymond Perrin, after reading his book (available on Amazon) and after listening to Dr Diana (and reading her book!) about the involvement of CSF drainage. I’d wake up with hands resembling boxing gloves, they were swollen and I knew I needed some kind of lymphatic drainage (and help with the chronic fatigue I had developed).  So I started The Perrin Technique, initially at his clinic in Manchester but also carrying out drainage massage and exercises at home. It has helped both with swelling and energy levels.

You can watch 6 videos about Dr Perrin’s approach at:-
http://www.youtube.com/watch?v=_qVMTMdVS_s

Barbara
(UK)

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Posted: 20 February 2014 06:17 PM   [ Ignore ]   [ # 14 ]  
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I have an appt. with a neurosurgeon.  Do you have any advice?

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Posted: 20 February 2014 09:01 PM   [ Ignore ]   [ # 15 ]  
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Hi
First I think you need to know the whole picture, so if you can, try and get MRI’s of at least Head & Neck and, if possible lower down the spine if you are having bladder, or leg issues. Once you know what you are dealing with, then you can weigh up your options.

Although surgery may be one option, unless it’s life (or mobility) threatening, it has to be the last option, as it is not without serious risk. See what improvements to your condition you can bring about first. That’s how it will help if you know the whole picture, for instance:-

*    Do you have excess Cerebro Spinal Fluid above the brain ? - needing something to reduce production of CSF, like Diamox.
*    How is your Pituitary, do you have an Empty Sella, or a Partially Empty Sella ? - do you need supporting hormones of any kind, (Growth Hormone, Thyroid hormone, etc).
*    Are you Magnesium deficient at cell level (blood test is inadequate) - needing Magnesium supplement. Magnesium may help reduce the excess CSF fluid too.
*    Are you B Vitamin deficient, as this can add to the excess CSF problem

Having said that, if you do have cranio-cervical instability, immobilising the head neck junction is imperative, to avoid further deterioration, so you will certainly need a substantial collar (soft collars are no good, they help the neck but only aggravate the cranio-cervical junction) and you’ll probably need a body brace too - to make sure you don’t move it.  The trouble is you feel no pain when you move it, so you don’t realise the damage it’s doing. Of all the collars and braces I’ve tried, the Philadelphia is the most efficient.  This method in itself may be sufficient to allow the joint to strengthen over time, thus avoiding surgery.

An important point here is, if fixation surgery is required, then they will not be able to do it if your bones are not strong, so you will need maybe:
*    Dexa Scan to test the state of your bone
*    Vit D test and probably Vit D supplementation for some time to help build stronger bone.

On your MRI’s, I would also enquire, what is the state of your Internal Jugular Veins, does either side look engorged, this could be a sign of problems. Some people have problems with laying down (as well as standing up!) like myself.  This could be due to the fact that when you are laid down your head drains via the Internal Jugular Veins, if one is not working properly, you have a problem.  However, if you sleep sitting up the head drains via a different route.

Ask the neurosurgeon to quantify his experience in the particular type of surgery he recommends.
Find out the outcomes of his previous patients, needing this requirement.
Hope some of this is useful.
Barbara
(UK)

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