I haven't been able to find an answer but I was diagnosed and sold there was no syrinx 3 years ago. I haven't seen a doctor in two years but I am feeling much worse these days and when I looked up some of my "new symptoms" it seemed like they fell more under the chiari with SM symptoms. So my question is could I have developed SM even if I was diagnosed without it? Or can the chiari suddenly cause you to feel way worse than before? I am paying out of pocket but would like to ask my PC doctor to order an MRI but I'm not sure what needs to be scanned? I am new here with lots of questions and have let myself get really down about it all so any answers or advice is greatly appreciated.
your chiari can get worse over time, doesnt necessairly mean you have developed a SM.
do you see a neurologist?, If not you may want to find one who is knowledgeable in Chiari
i think it may be time for another MRI for head and neck.
Thanks Lisa. I do not currently see any doctors, I lost my job, medical insurance and had to move because of my frequent doctor visits and side effects to the meds I was on in 2009 and have not seen Dr since. I have been looking for a neuro in my current area that has real experience without any luck. I'm crossing my fingers my PC will understand and care enough to help when I see him next week (I've never met him before). I'm running out of patients and am becoming very irritable because the really bad pain is lasting longer and will keep me in bed for days without sleep.
Hi Lori,
Yes and yes.....you can develope a SM after your initial diagnosis of CM. Especially since your diagnosis was three years ago. Your CM symptoms can also become worse over time. I know how awful it is to feel horrible then to have to worry about no insurance on top of that. I am so sorry. A lot of Medical providers will give you a discount and workout a payment plan or since you are not working you might be eligiable for Medicaid or Medicare if you are determined disabled. Please ask us as many questions that you have. I wish I could help more.
I hope things get better,
Tracy Z.
Since you lost your job and have do not have insurance you should try going to your local assistance office. You may qualify for medicaid or other programs. Good luck! I hope you get answers soon.
Lori,
Everyone has given you great advice:) The only thing I can think to add…Have you had a full spine MRI? If not, you should. I have Chiari and Syringomyelia (syrinx), so if you have questions I would be happy to share my experiences. I haven’t lost my job yet, but I have had my hours drastically cut. I use to work 70 hours a week and now I’m lucky to make it through 15 hours a week. I had to move back in with my mom, because of all the medical bills. I agree that you should look into getting assistance for your medical. Being diagnosed with Chiari can be overwhelming and the lack of knowledge by many can be very frustrating, to say the least. We understand what you’re going through and we’ll be here for you in any way we can. Like I said before, you are NOT alone.
Crystal
Wether it's worse symptoms or SM, Something is definitely worse I'm just not sure what it is. Thank you so much, I wish for the past few years I would have known there were people out there that I could talk to.. That wouldn't just look at me like I'm crazy. I am sorry you all have to deal with it too, I hate thinking there are people out there feeling like me or even worse off. .
As far as medical assistance I talked with the Medicaid people and apparently here in Texas they only offer it for children and pregnant females. I'm not aware of any other programs.
I had a brain and cervical MRI with and without contrast and I know I have had some of my spine scanned, I can't remember if it was all of it now.. I can't find any MRI's of my spine in the medical records I have access to.Do I need an MRI of my whole spine? I am planning to go to this PC doctor and ask him for MRI's, medications and referrals and hope to find some answers.
Lori Del-- i did some quick surfing and thought these might be useful to you---
or atleast something for you to check into----
check to see if you fit the requirements
http://www.hhsc.state.tx.us/hhsc_projects/abj/Council.shtml
scroll down to perscrption assistance
http://www.texashealthoptions.com/cp/health.html
Programs in Texas
http://www.needymeds.org/local_programs.taf?_function=list&state=tx
Neat! I will have a look, I am always bad at finding what I want on the internet.. I mean it took years for me to find this site ;) I appreciate your help!
no prob hope they are helpful links to you
lisa