can anyone point me in the right direction

[Barbara]

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)

[Dr. Diana]

I have an appt. with a neurosurgeon. Do you have any advice?

ttpookinz, I am leading a charge toward ruling out any possibility of medical management prior to considering surgery. My MRI didn’t look that dissimilar from yours, and I was wearing a hard collar most of the time for almost 2 years. Ugh. I couldn’t even turn my head (or my eyes, often) without feeling as if I was passing out. Horrifying. It can be hard to judge from these “flat” images just how much CSF is passing through that canal between your odontoid and your spinal cord. And am I right that you don’t have an MRI of your head to show us? That can be hugely helpful. Many of us develop high intracranial pressure and the fluid collects above the brain (visible on MRI). Did you fill out a symptoms checklist? That can help us figure out what is going on. My son and I were told to have numerous surgeries: neck fusions for CCI, Chiari surgery for Chiari zero, and even brain shunts. We were miserable, but I felt that something was being missed because we both got so much worse with viruses. Surgery is permanent and I hear the horror stories of non-healing and endless pain in many of us. We opted for a Diamox trial which eliminated our symptoms OVERNIGHT. I had gotten to the point where I could not even hold up my own head! And a PILL reversed it?! It took off just enough CSF fluid to allow my brain to float easier, it took off some fluid pressure on the brain stem, and my son and I (and my daughter, who also takes Diamox) remain surgery free today. If the odontoid is not stable, does that mean it can move forward and allow the CSF to pass through easier? Maybe. I went through so much research about removing the pannus, etc about 10 years ago! None of it was necessary, fortunately. Once, when studying “normal MRI’s”, I came across one that many of us would call CCI. The patient was asymptomatic. Amazing, I thought. Perhaps we are studying the clivo-axial angle TOO closely? Perhaps it can change? I think it would be unconscionable for a surgeon to diagnose CCI and recommend surgery prior to a trial with Diamox (or other meds to lower CSF production). It is too successful in too many of us! Just my two cents, my friend. 😉 Gentle hugs…

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