I finally had my flow study done and I did exactly what they tell you not to do - I read the reports and looked at the images. My follow up appointment is in a couple of weeks, but I am trying to gather as much information as I can to compile my questions.
Has anyone here had a 'markedly reduced flow of CSF in the posterior one half" or something similiar and if so what was the prognosis? It looks like I am syrinx free (Yeah!) but I may have two bulging discs.
I am a planner when it comes to chaos, so I am trying to control the only thing I can when it comes to this - knowledge.
I'm open to surgery if it's recommended. I want to become the person I was three years ago. I KNOW that I won't be that person heavily medicated and I will never be able to work with children again without the surgery. I know it isn't a guarantee, but maybe is a better option than NO in my opinion.
I am so thankful for this board because without it, I wouldn't have started researching Chiari! It amazes me what the dr's will ignore in order to treat symptoms.
You and I sound a lot a like! I too like to control my chaos, it may sound strange to those outside our heads but it makes sense to us! I have 5 kids and it’s the only way it works for me. I have only had mild symptoms since I was diagnosed 11 years ago. But over the last year I have declined rapidly and my flow study was awful! I have no flow in any position anymore at all, needless to say I am having a Posterior Decompression without Duraplasty on Wednesday. I am herniated well past C-1 almost to C-2. My NS said if I do not have surgery soon I have an 80% chance of being paralyzed from C-1 down. So best advice I can give is do what you are doing, tons of research but take it all in with a grain of salt bc all people are different. And ask your NS as many questions as you need to feel satisfied with your choice. And the right choice for you and your life will come about. I fought having the surgery bc well with 5 active kids and me being an active person, putting all that on hold to recover seemed crazy but being paralyzed seemed even more crazy to me. So short term sacrafice for a long term goal! Good luck to you!
And good luck to you! My 2 kids keep me very active, well they did, quite frankly my inability to run around and play with them is my biggest issue. Especially as the nice weather comes back.
Keep us posted on how it goes!
aajamom said:
You and I sound a lot a like! I too like to control my chaos, it may sound strange to those outside our heads but it makes sense to us! I have 5 kids and it's the only way it works for me. I have only had mild symptoms since I was diagnosed 11 years ago. But over the last year I have declined rapidly and my flow study was awful! I have no flow in any position anymore at all, needless to say I am having a Posterior Decompression without Duraplasty on Wednesday. I am herniated well past C-1 almost to C-2. My NS said if I do not have surgery soon I have an 80% chance of being paralyzed from C-1 down. So best advice I can give is do what you are doing, tons of research but take it all in with a grain of salt bc all people are different. And ask your NS as many questions as you need to feel satisfied with your choice. And the right choice for you and your life will come about. I fought having the surgery bc well with 5 active kids and me being an active person, putting all that on hold to recover seemed crazy but being paralyzed seemed even more crazy to me. So short term sacrafice for a long term goal! Good luck to you!