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)