Chiari Entry No. 5 Feb. 17th, 2008
Hello again. It is Feb. 17th (Tristan’s Birthday). I have visited the Cleveland Clinic and I am kind of confused. Dr. Luciano seems to want to attribute all of my symptoms to sleep deprivation. He thinks that I may have sleep apnea. If I have Central sleep apnea then it is Chiari related. However if my sleep habits are not related to sleep apnea then what is it? They do not want to do surgery as of yet but want me to do a 6 month follow up MRI and sleep studies in between. I have been taking the Imipramine now for a month. My sleep habits have improved from this but I still have the other symptoms. I guess the headache is a little better too. I am supplementing with narcotics for pain only when needed. The question is this. Is the imipramine only helping me sleep or is it doing it’s job by acting on the pain receptors and such? What to do now?
University of Virginia wants to see me for surgical consultation on Feb. 25th. They actually express a desire to do surgery. I know that Dr. Oldfield is a leader in the Chiari field but there is the opinion of Dr. Luciano at Cleveland to consider.
What I know: This may/probably get worse. Worse means; more and worse headaches, more balance issues, swallowing problems, speech effected and I will eventually develop a syrnx (which sucks). The syrnx will not just go away and the only real treatment for it is decompression surgery. Sometimes this all stabilizes out and does not get worse other than the syrnx.
Options: Continue the way I am and see what happens with the sleep study. Search for other treatment options such as medications. Suck it up and do the surgery with the chance of no change or worsening post surgery.
Right now I am going to listen to Dr. Oldfield’s suggestions and ask a lot of questions. Then I will revisit this page. So off to bed with me.