Todd Bacon
My husband was diagonised with arnold chiari about 3 years ago,after many many years af wonderment of what all his problems were from. He had the surgery to relieve the pressure , cutting off some of the stem . He had so many problems prior to this that thwy did other surgeries thinking is was this and that, then finaally at age 36 thewy did a MRI and found this. Anyhow he is still suffering with so much pain and breathing problems, anxiety, derpression and related problems. mostly the pain is so intense with severe headaches that are unbearable , keepoing him fatigued alot whissh lets him down and out alot he is beside himself. We are trying to find ways to manage the pain, they just turned him down for the pump here in this little town hospital. The surgeon who did the surgery said he cured the disease so we feel that is the reason he won't put it in. We have an appt. with a doctor at John Hopkins but we need to find out how to deal with the pain, he is on a high dose of oxycontin presently but that does not touch the pain many days how does everyone deal with the pain, and have you seen many of the symptoms coming back. A specialist in Pittsburgh told us he had the pressure for so long that the surgery just took care of the presure , like setting a bowling ball on carpet for 36 years, is still left a mark. Is ther amyone out there that was not diagonised till later in life with many problems still occurring, he is at his wits end, we are trying to find anyone , doctor to help us to have a somewhat normal life. Please gives some insight to give us hope and encouragement.Thanks and we hope all is going well for others with this rare disease!!! Missy and Todd