Guest guest Posted October 5, 2000 Report Share Posted October 5, 2000 My son Joe (who is 16 now) was diagnosed with ACM1 when he was 12 years old. His tonsils are at 3-5 cm and has not required surgery. His symptoms were severe debilitating headaches, nausea, vomiting. Our family physician treated him for migraines for about a year until the headaches got so bad that Joe was missing so much school. I finally called the family physician and asked that he run tests on Joe to find out about these headaches. Dr. Carvelli ordered an EEG and an MRI. The EEG showed abnormal brain activity, and if the MRI had come back clear then he would have looked into epilepsy in Joe. Unfortunately (?) Joe's MRI came back with ACM1. Joe was sent to a neurologist here in Erie (Dr. Negron, who is now retired) and treatment was begun. Dr. Negron started him on 200 mg of Tegretol XR and his dosage has been increased since then to 400 mg twice a day. The medication has been successful in eliminating the symptoms he was experiencing. Lately, though, we have noticed that Joe has become somewhat more clumsy (he has also had a tremendous growth spurt within the last 5 months, growing at least 3 more inches since the middle of June!). He had his 6 month checkup with Dr. Esper on Tuesday, and we let the doctor know about this clumsiness. Dr. Esper is now ordering another MRI to be compared with his last 3. He feels that it is possible that with Joe's growth spurt that the ACM1 may have worsened. So, we are waiting to have Joe's new MRI done and then we will know whether he will have to have the decompression surgery or not. His blood levels for his medication have been good and he hasn't had a change in his dosage for quite a while. Patti Erie, PA Quote Link to comment Share on other sites More sharing options...
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