My husband is 56 & was just Dxd with CM1. It seems like after he had some spinal leaks these weird symptoms started happening. We went to the hospital with a horrible head ache thinking he was having a spinal fluid leak again. He's had 11 back surgeries where they go in the front & next day go in the back to work on both sides of the spine & got new disc but never seemed to stay together. After MRI, CT & mylogram , instead of telling us they are going to fix his back, the Dr said he needed brain surgery for Chiari Malformation! WOW! We weren't expecting that! After we got home it seems like he got every symptom on the Chiari list for about a week or 2 then started easing up. He had the horrible headache, ringing in ears, clumsy coordination like he was walking on a jon boat on a lake, pain between shoulder blades & neck, sensitivity to light, & seeing weird shapes & floaters in his eyes. There were more but those I can think of at the top of my head How do you think you got Chiari? The Dr told him this as he was discharging us from hospital in Feb. He wanted test before we come to his office. Cine Flow MRI & EMG so we are finally going to see him this monday May 21st. We don't know what to do but my husband isn't anxious to get the back of his skull cut off! Do they put it back ever?? Any info is appreciated.. Jeri Benjamin
I’m so sorry your husband has to go through this:( My Chiari/Syringomyelia pain and symptoms started after I was rearended in July 2007…I was 28 at the time. I had NO pain or other symptoms prior to the accident. Could your husband’s symptoms have been brought on by trauma? I don’t have personal experience with the surgery…Mine is scheduled for June 28th. I do know that they don’t put the piece of skull back, because the point of the surgery is to make more room to allow the CSF to flow…Many Neurosurgeons put in a metal plate to protect the brain. Do you know if his NS is experienced with Chiari? If not, I would recommend getting a 2nd opinion with a Specialist. There are lists of patient recommended doctors…You can find links on our resources and doctors page. Also, has he had a full spine MRI to check for a syrinx? I’m glad that the NS requested a CINE MRI…This shows that he has at least some knowledge about Chiari. I hope your husband gets the care he needs and starts to feel better soon! Please keep us posted and let us know how his appointment goes. You will both be in my prayers.
Hey Crystal, thanks for the reponse. This NS says he’s treated Chiari pts & was duing surgery on a Chiari pt in Feb. when we were discharged from the hospital. It’s so crazy. The Dr’s PA came in & told us Dennis has Chiari & needs surgery 5 minutes before she discharged us with a list of test to get done so we haven’t talked to Dr about it since then so we’re going to bombard him with questions! I’ll try to find that list of Drs & see if there’s one in Nashville & maybe at least get a 2nd opinion. I don’t even know if the MRI was his whole spine but I think it was just his brain. A previous MRI. Did show he has adhesive Arachnoiditis ? In his lower back. From what I read, there is nothing that can be done about it but I think I read someone on here has that too. Dennis blew out his back jerking on a transmission working undercover for FBI. Drs wanted him to have surgery but he kept working then 3 years later when targets were arrested Drs told him it was too late to fix his back & a wheelchair & walker was in his future. We found an Ortho Dr I’m
Nashville that operated & put 3 new artificial disc in so I guess somewhere in there is trauma. Been pretty traumatic
c to us anyway. Lol
Crystal said:
I’m so sorry your husband has to go through this:( My Chiari/Syringomyelia pain and symptoms started after I was rearended in July 2007…I was 28 at the time. I had NO pain or other symptoms prior to the accident. Could your husband’s symptoms have been brought on by trauma? I don’t have personal experience with the surgery…Mine is scheduled for June 28th. I do know that they don’t put the piece of skull back, because the point of the surgery is to make more room to allow the CSF to flow…Many Neurosurgeons put in a metal plate to protect the brain. Do you know if his NS is experienced with Chiari? If not, I would recommend getting a 2nd opinion with a Specialist. There are lists of patient recommended doctors…You can find links on our resources and doctors page. Also, has he had a full spine MRI to check for a syrinx? I’m glad that the NS requested a CINE MRI…This shows that he has at least some knowledge about Chiari. I hope your husband gets the care he needs and starts to feel better soon! Please keep us posted and let us know how his appointment goes. You will both be in my prayers.
You’re very welcome:) Wow…Your husband has had quite an exciting life! I’m so sorry he has to go through this…It sounds like he’s already been through so much:( I hope he finds a great doctor and gets the care he needs and deserves soon:) Please keep me posted.