Newly Diagnosed after 16 mo

I am new to this sight. I was in a car accident June 2012. I was in the middle back seat of my husbands SUV going 55 MPH sitting between my mother and 3 yr old grandson. My husband was driving and my mothers boyfriend was in the front seat. I truck ran out in front of us and we had no time to break , just swerve. All I remember was seeing the truck and looking toward my grandson trying to hold the car seat. I woke up when someone said the car was on fire. I went by ambulance to the hospital.

I had head pain and face pain the next day and went back to the hospital. I have been on medication for Post concussion syndrome and have had 2 teeth pulled. My Dr. told me I might have "pissed off a cranial nerve," and sent me for a MRI. I came back negative. Ever since I have been uncer Doctors and neurologists care and been suffering. I also have been having stomach issues and circulatory issues, my right leg swells and sometimes my face swells. My digestive system is slowed down and is taking 2x the amount of time to digest food.

I do not know if the medications are affecting this, or if it is neuro related.

I have been on amitriptyline, topamax, and imatrex for migraines.

I found skull base institute and did a over the phone consult and was sent for a MRI-MRA and my results were positive. I have Right Sided Trigeminal Neuralgia and Left Sided Trigeminal Neuralgia.

The report also said I have "aneurysmal dilatation of the intracranial vessel", I have no idea what this means!!!!

The Dr. said I am a candidate for surgery. The Right side is the side that bothers me the most, the left side is mostly burning. My concern is if I only get one side done and then still have middle facial pain... I also want to know what the heck the above is in the report. My husband does not want me to have surgery, but I can not deal with this pain any longer. The first MRI never showed it because it was not sensitive enough and not the right type of MRI.

I am a new ER nurse. I was in my last semester of nursing school when this accident happened, I was actually looking down at my flashcards, studying for a test when my moms boyfriend yelled,"look out" and I looked up.

I have been reading your stories and am so blessed to find this site, to know I am not alone. Thank you so much for this site and for all of you taking the time to be here and having the courage to be so strong. I know how bad it hurts to be in pain every day, I get it. I know God gave this to me, so I know to have true compassion to my patients, as I too experience pain.

Hi Nursemomma, check out the link above…it’s fairly easy to read and explains what “aneurysmal dilatation of the intracranial vessel” is. If you look at the treatment page if shows images. Based on what I read I would ask the doctor 'what surgery?" Is the surgery treatment for the aneurysm or is it MVD for trigeminal neuralgia? Is it the injury that caused the aneurysm? If the aneurysm is dealt with will the TN pain go away?

I’m not a doctor, but I would ask for clarification and an explanation of your report from the skull base institute or your doctor.

Welcome to LwTN, I sure hope you get some answers so you can make an informed decision going forward for treatment.

(( hugs )) Mimi

Can you get to Baltimore or Michigan?

I have had MVD 2 years ago, no pain. With dr. Ken Casey. The most experienced in TN MVD.!, Michigan .

DR LIM at Johns Hopkins , Baltimore, younger and closer to you but gets high marks and is a very good MVD surgeon.

You ONLY want to find the best surgeon and get a consult… They will guide you!

Get your current doctor to call you In. Lidocaine patches for face.

Tell hubby that you want to have less or no pain! It is a cranial surgery, not a brain surgery. Usually 2 days in the hospital, then stay in bed for a couple of weeks.

Of course you would have to do this twice… Start with whatever a best surgeon thinks.

Keep posting!

Thank you both for your comments. I just saw them tonight. I can go anywhere I need to. I am learning as much as I can about TN. I found out I do not have an aneurysm. The MRI-MRA showed vessels compressing both my trigeminal nerves. So the lidocaine patches I wear on my face? Can you wear them when you are out in public or work? I will ask and give it a whirl.