I have been recovering from CM1 decompression surgery for over the past 2 years and nothing has improved.I have pain and pressure In my neck constantly, am always dizzy, my coordination is off and I have chronic muscle spasms. No further testing or dr. visits have offered any help and it is hard to live like this. I can’t do the things with my son I’d like to and his mother left me because the cognitive changes I experienced were too much for her to cope with. I feel horrible because of how this illness has destroyed the lives of people I greatly care about. For the time being she is still letting me live with her and our son since my doctors have said I am unable to work and until I get my disability. Has anyone else had any experience with disability for CM? I have been in the application process for a year and a half and now I am waiting for my court date to get it all settled.
Hi, I had my op 3 years ago. I have found that I have to take extreme care of my neck. No picking up of anything weighing more than about 2 bottles of milk. No extreme or exaggerated neck movement etc. I also have to get enough sleep. Any alcohol will increase pressure in head. Emotional conversations or excessive talking too will increase pressure. I was boarded from teaching many years ago but improved so much I could return to teaching about 11 years ago. This year I had to cut back again so I only teach art 3 days a week. Much better. Seems it all depends on how carefully we look after our selves. What does help tremendously is the radio therapy rhyzotomy I have now and then. Hang in.
Did your surgeon open the dura during your decompression? Have you had a CINE MRI post-op to make sure the surgery was successful? I really think you should pursue this with your doctor and if he’s no help find a new ns who specializes in chiari!
Epitomosity, I am so, so sorry you are going through this. You are not alone in dealing with these symptoms post op, though. I have a few questions and some suggestions for you.
First, As Anglyn asked, did you have the dura opened? Did you get a metal plate placed to the back of your head? If no to either of questions you may be suffering from an inadequate decompression, or from the build up of scarring at your surgical site. Some people without a plate get so much scar tissue built up it causes crowding at the base of the skull all over again. If you are not getting help from your current NS, then research out another one to get a fresh pair if eyes on your brain. There are other things than can go wrong after decompression that can be successfully treated or at least mediated.
Second, have you ever been screened for Ehlers Danlos Syndrome? This is very pertinent because us EDS patients(very common among chiarians) also develop CRANIO CERVICAL INSTABILITY. The EDS causes the ligaments in our neck and head to become lax and stretchy, allowing abnormal movement of the joints they are in place to protect. This abnormal movement can cause compression of the spinal cord, brain stem, And medulla. These symptoms mimic Chiari symptoms. Cranio cervical instability is fixed surgically with a fusion. Many of us have been through 1 or more decompressions to find out that another surgery is needed to fix the instabilities, myself included.
EHLers Danlos Syndrome /hypermobility can be diagnosed with the Brighton Criteria (you can test yourself)but keep in mind that not every EDS symptom is present with an EDS positive person. For example, my joints are hypermobile and I have IBS but I do not have the doughy/stretch skin.
Finding a surgeon who will diagnose cranio cervical instability can be as challenging as finding a true Chiari specialist, but they are out there! Here is my short list (certainly there are others I’m not aware of) of docs who I believe routinely check for and fixCCI with their Chiari patients:
F Henderson, MD
Rosner, NC
Frim ,IL
Theodore, AZ
Jimenez, ???
The Chiari institute, NY
This is a video about CCI with Dr Henderson
CSFinfo.org
Scroll to videos
Scroll to metropolitan area
Scroll to cranio cervical instability/ complex Chiari patient/ or EDS and Chiari
It is not your fault that you are having cognitive issues, and I’m so sorry to hear about your home situation. Please don’t give up hope, though. Many people continue on with their journey even after decompression. A diagnosis of Chiari is not usually a quick-fix situation and takes perseverance.
Sending positive thoughts, prayers, and a computer hug,
Jenn
I was reading your response and I am currently under the care of Dr Frim . I have surgery scheduled for May 13th. Him and his appear to be very thorough and he does about about 50 of these surgeries a year on children and adults
Thank you for the extra information. I did have the duraplasty but no plate, they used the outer lining of a cow heart. I have never heard of EDS before and that’s something I will discuss with my doctors. My current NS doesn’t seem to take my case serioudly, it’s because of him I had unchecked cranial meningitis post-op due to a major CSF leak that he said was nothing. My area got a new NS that I want to pursue for more information. Thank you for all the support.