I am a recently diagnosed chiari malformation and syrinx patient. I presented with painful tingling in the extremities and groin area and some balance issues - no other symptoms. I have been initially diagnosed by an NI and then got a second opinion from an NS at Johns Hopkins in Baltimore. After a review of spinal and brain MRIs, and a neuro exam, I received the final "report" from my NS today. Syrinx is considered small (extends from cervical to mid-thoracic), it may or may not be related to the chiari (may be idiopathic), and may or may not be causing my symptoms. Surgery is not recommended. Symptoms do not appear degenerative (? I question this). Recommendation is yearly MRIs and medical management.
I am so overwhelmed with mixed feelings. I do not want surgery unless it is absolutely necessary. Yet I wonder about what the course of this malformation will be as the years go by. The NS did not feel my symptoms will be degenerative and yet I feel they are slowly worsening in frequency and intensity. My overall impression is that this condition is treated with great ambiguity - that makes me quite anxious.
I have read through so many other individuals whose symptoms sound much worse than my own, whose lives are disabled by this condition. I do not wish to minimize the pain of my own symptoms, however,and the fear that it will worsen.
Any thoughts or guidance would be greatly appreciated....
After reading your post, I think your NS is doing the correct thing by monitoring your CM. No one should have surgery unless their quality of life has been adversely affected. Many times post surgical symptoms are very bad. I wish I had the option of not having CM surgery. I wouldn't worry about future Chiari issues. You can see or contact your NS or NL regularly & get a MRI yearly to monitor your CM & it's progression or lack of. This is a positive outcome for you. I know you are anxious, but this is really a great treatment plan.
After reading your post, I think your NS is doing the correct thing by monitoring your CM. No one should have surgery unless their quality of life has been adversely affected. Many times post surgical symptoms are very bad. I wish I had the option of not having CM surgery. I wouldn't worry about future Chiari issues. You can see or contact your NS or NL regularly & get a MRI yearly to monitor your CM & it's progression or lack of. This is a positive outcome for you. I know you are anxious, but this is really a great treatment plan.
Thank you Tracy! Your encouraging words mean a great deal to me!
TracyZ said:
Hi Joy,
After reading your post, I think your NS is doing the correct thing by monitoring your CM. No one should have surgery unless their quality of life has been adversely affected. Many times post surgical symptoms are very bad. I wish I had the option of not having CM surgery. I wouldn't worry about future Chiari issues. You can see or contact your NS or NL regularly & get a MRI yearly to monitor your CM & it's progression or lack of. This is a positive outcome for you. I know you are anxious, but this is really a great treatment plan.
It's an opinion. They take a look at the MRI's (was one of those a Cine MRI?) and make the determination from all the data. It may or may not be progressive for you. We cannot know what the future hold for us.
You are going to be monitored and if there are any changes at any time they are a phone call away.
On the other hand, if you did not have a Cine MRI...I would get one. That is the one that tells the story.
No, but with your MRI, Neuro Exam & Symptoms a CINE MRI isn't warranted. I am positive if your NS or NL thought you were having CSF Blockage they would have scheduled one.