Help on syringomelia

My mom has had syringomelia since 1998 with a Chiari malformation and had a posterior decompression in 1998. the recent MRI done shows that that the right hypoglossal nerve is now affected and according to report the neuropathic symptoms around the mouth suggest a brain stem phenomnon which maybe an extension of syrinx into the brain. We are looking for some sort of relief for the burining senstation in the mouth and the heat buidup in the head. Common symptom are numbness, fluctuation in pressure, heat, loss of strength in right hand and leg. She has not complaint of pain but is concerned about the following

1. Excessive heat build up on the head (day or night....can physically feel it). sweats when this happens
2. Excessive secretion of fluid from mouth...saliva...what can be done
3. Stroke in the tongue (has moved to one side)..slur speech
4. Bitter feeling on teeth and tongue and lips get red......this is really causing discomfort. is there a solution
5. If she has difficulty in swallowing what does this mean and what must one do.
6. Is there any other patient with similar symtoms (symptoms), how are they managing.
7. She cannot get her sleep in the night
8. burning sensation on tongue and lips...what can be done

I would apprecaite any advice that can be given. Is there a patient in South Africa that i could contact or a doctor that deals with this condition in South africa.

[selmaS]

Hi...I know u r desperately  looking for answers for this issue, I feel u may get more posts within the chiari forum from others that also deal with syringomyelia...the syrinx depending on where it has developed and how large it is, and the nerves it is impinging can cause a sensation of burning and numbness and pain...since it is a neuro issue it is diff to treat...meds generally do not touch it....u do need to be seen by a dr that specializes in this area to see if the syrinx is large enuff to shunt.

U will also want to know if u also have chiari malformation as the 2 can coexist.Many times, dealing with the the chiari herniation can help the syrinx shrink...it may not however reduce some symptoms , u need to know if ne nerve damage was sustained.

Please try to contact a true chiari specialist in order to help with this .

I pray u find ur answers
"selma"