1. Is surgery the only answer in treating Chiari/Syringomyelia, or are any drugs effective in doing this?
As far as I know surgery is the only control for Chiari/Syringomyelia. Chiari/Syringomyelia is a supremely surgical disease. Drugs may of course, be useful in controlling some aspects of it, such as pain, but the nervous system damage, the CSF secretion and its accumulation are all not amenable to drug control.
2. Does Chiari/Syringomyelia alone always eventually kill and if so, in what way? Has Chiari/Syringomyelia alone ever been entered on a death certificate to your knowledge?
Chiari/Syringomyelia certainly can kill people whether it is right to call it Chiari/Syringomyelia alone I am not sure. What happens of course is that people get other illnesses and if for example someone gets pneumonia when they have weak muscles, a deformed chest and paralysis of the diaphragm, then they are more likely to die of that pneumonia than a person with normal muscles and a normal chest. The same goes for any other sort of illness that might affect a Chiari/Syringomyelic patient for instance, having meningitis, Parkinson's disease, a road accident a stroke or a heart attack.
3. When a patient has other pains or problems, how does the GP know whether it is related to Chiari/Syringomyelia or whether it is totally independent and a seperate problem?
4. What if anything would you suggest by way of pain control?
The pain of Chiari/Syringomyelia is one of the most wretched problems. I don't think that there is any specific remedy that is better in Chiari/Syringomyelia than in other conditions. I get the impression that pain in Syringomyelia is more troublesome than most other forms. Doctors may tend to favour drugs with a central as
opposed to a peripheral action and therefore NSAID'S such as Ibuprofen, and Indomethacin are perhaps of less use than Amitriptilene or Carbamazapine. The plain fact of the matter is that when pain is bad enough to send a patient to the doctors, the doctors are usually unable to usefully treat it and the only drugs that will really control it with any certainty are Morphia derivatives which of course have the disadvantage of being addictive.
5.Why does the pain connected with Chiari/Syringomyelia sometimes seem to move around the body?
It is because the spinal cord is affected in different parts at different times. If the disease progresses upwards beyond a paraplegia for instance it is not unusual for a zone of pain to go up the trunk and into the arm to be followed by numbness. This may happen quickly. It may happen in jumps and starts, particularly associated with coughing. It tracks the upper end of the syrinx very neatly and correlation is always exact between the level involved and the side and the appearances on the MRI scan.
6. Why do there seem to be 'flare ups' of pain and sensation changes, which then settle again for a while?
Almost all disease processes are prone to flare ups?. The syrinx cavities are able to heal. The filling mechanisms are probably related to exercise. When a patient has a bad attack of pain they may go to bed or take a rest of some kind and they may go into remission through the change in the filling. This is really not understood. Since we don't understand exactly why the operations work, it is perhaps not surprising that we can't understand the nature of spontaneous remission. Total remission of Syringomyelia is possible; that is to say a patient may come into the clinic who was diagnosed as having Syringomyelia twenty years ago and on investigation they may be shown to have a flattened cord which has obviously healed up. There have been some doctors who say that because this occurs, patients should await spontaneous cure. I can tell you that spontaneous cures in my clinic are less than 1% and although they are impressive, waiting for that 1% chance is improbably optimistic.
The above text was taken from the Summer 98 Issue of the A.N.T.S. Magazine, and was written by;
The Late Bernard Williams.