To post my mri? I am recently diagnosed. It was an incidental finding on mri. I have a spontaneous csf leak from my nose that started right after I gave birth to my younger son… I am not experiencing symptoms but now that I know I have this I am becoming so paranoid…
At the risk of sounding ignorant, when you had a csf leak through your nose, what kind of leak are you refering to. Was it a lot of fluid all at once or was it just constantly watering? I have been having this sice I took a hard fall a few months back and am concerned it could be csf. My rihgt nostrile is constantly leaking. I always have a tissue on hand because if I don't get to it quick enough, it will come out of my nose! And that can be embarassing. Did't want to mention it to my doc because he probably thinjs im borderline nuts as it is, lol. Any advice would be much appreciated.
Alana Kay,
Please take a deep breath and try to stay calm. I deleted your film pic because it has your SSN on it. There was an issue where someone had their identity stolen on another group from their MRI Film.
I have seen worse herniations & would advise you to see a Chiari Experienced NS and discuss treatment options. I am almost 8 years post surgical & had a much worse herniation.
I was also terrified about my daughter possibly having a CM. Be concerned but don't panic. Chiari does run in some families but it has never been proven to be genetic. These are current studies being done on families with multiple family Members that have CM.
http://www.clinicaltrials.gov/ct2/show/NCT01060800?term=chiari+malformation&rank=9
http://www.clinicaltrials.gov/ct2/show/NCT00004738?term=chiari+malformation&rank=4
NS's & NL's are split that CM is genetic. I know beyond a shadow of doubt mine is not. Do not be upset when your children's pediatrician will not order a MRI to check your children for CM if they do not have any symptoms. "Family History" is not reason or a diagnosis that is ever approved. My daughter does not have CM either but it took me two years to get a definite answer. She had to have a neuro exam and MRI for another issue. I understand your terror and am so sorry. I am not trying to diminish your feelings in any way. Any Mother understands. I am just trying to give you some concrete information to start with. Definitely have them checked out by their pediatrician.
Video on Pediatric CM symptoms at bottom under "Learn More about CM" then Click on "What is Chiari Malformation"
Kristie....I had a CSF Leak in my mouth. It tastes like the saltiest brine you can ever imagine. Even saltier than ocean water. That's the fastest way to tell if your fluid is CSF. I know it sounds gross but, I would taste the fluid in a second if I thought I had a CSF Leak.
You both should try to be positive as possible. I know you are afraid, but it is not common for an adult Chiarian to die from Chiari. You really need to consult a good Chiari Experienced NS. We will be here for you . Please ask any questions or concerns or vent. We all definitely understand.
Tracy Z.
Abby our Head Moderator has lived with CM for many years and hasn't had surgery & doesn't plan to unless absolutely necessary. She keeps it monitored. It's not always easy for her. I would recommend not having surgery to everyone,unless the CM becomes life threatening (my personal opinion). You can send Abby a message and she will answer any question you might have. You will not meet a kinder lady.
I agree with getting your CSF Leak sealed. I did get Chemical Meningitis and it's not fun. Dr. Batzdorf is Great !!! You are in good hands.
Again, Please know we are here for you,
Tracy Z.
I’ve had a nose leak for awhile. Recently became aware of fluid leak. I think I have a hole somewhere. Sinus problems go way back. I have had irritation in mouth for months. I have to blow my nose all the time. Antibiods. Unaffective. Been off and on them for a year. Great. How many holes can one person have in there head. I am constantly peeing almost uncontrollably, drs. Are just pushing me out the door before They can even really explain my symptoms. Are they afraid that I’m a walking corps ( a waste of medical effort)
Kyle,
You really need a to grab a Dr. if you have to and make them listen. As Alanakay brought up you can get Meningitis from a CSF Leak. You need to have A MRI or CAT Scan to find your leak, so it can be sealed. I am so sorry. A lot of times when a Dr. doesn't understand something they just dismiss it. There are Great Dr's out there I promise. Please don't give up.
Tracy Z.
Ok, silly question. Other than leaking from the nose and blowing all the time, are there any other symptoms of this? My nose burns alot like I have inhaled chlorine. I haven't seen anything online that I can find so I just chalked it up to me being weird lol.