We’ve been quiet in the craziness this past week. But just got the call from our pediatric neurologist. KTR’s MRI showed a clear cause. There is a blood vessel looped around the nerve.
First, I have to say thank you to this site and to everyone who has worked so hard to raise awareness of TN. KTR had her first attack on July 14th. We talked to the dentist on 7/14, then her pediatrician on 7/19 and again on 7/23 because by then I had found this site and others that so clearly matched her pain. I returned on 7/23 because armed with this info I just something more was going on that migraines, and strongly suspected TN, so I pushed for more. We saw the ENT on 7/24, pediatric neurologist on 7/27, had an MRI on 7/30.
And now on 8/3 we know clearly that a blood vessel is looped around the nerve. The pediatric neurologist has seen this so rarely that he has already forwarded KTR’s scans to the head of Neurosurgery at Children’s in DC (we are in N.VA…), who has already forwarded them on to a Dr. Goodrich at Albert Einstein College of Medicine in NY. Hopefully by Monday we will hear something back on what they believe the best course of action is for her given her young age.
I’ve read so many cases of people going years with no diagnosis, and I feel blessed to have gotten so far so quickly.
KTR is also on 150mg of Trileptal, 2x/day, and since being on it has only had one attack in the 7 days, and that was right after starting. So hopefully that will keep evy thing in check until we figure out what to do.
That all being said, please share any recommendations for hospitals & surgeons since it looks like this may go that way. I want to be sure to research our best options before letting someone cut into my baby’s brain.
I am glad to.hear there is such.a.clear indication.
MVD is a well researched and long documented procedure, and with clear indication of vascular compression, very good results. I hope you find a very and capable surgeon should you choose that route.
Given such a clear indication, i hope your led to a comfortable confident decision. I wont lie, the surgery is a bitch, but you rebound remarkably fast. Amazing.
Hi, you are not far from me. I wish I had a suggestion for a hospital or surgion but I don't. I'm so glad you were able to get a definitive answer so fast so you can get the best treatment for her. Keep us updated with the progress. She is in my thoughts and prayers that they will be able to successfully treat her and she can move on with her life being a normal kid.
From how's it's been described they don't actually cut into brain tissue. They move it aside to get to the nerve. I'm so glad things moved quickly for you and a cause has been found. Since it's so rare in children, there isn't a lot of information out there but what there is shows that surgery seems to go very well in the younger population. People in general seem to do better the sooner it is done but this is in studies in the normal age range. Here's a link to how it is actually done. I am so glad she is doing better!!!
I'm so happy for you. Reading this brought me tears of happiness. Now you have options. I believe that they'll suggest an MVD, unless the meds are controlling it so well that they'd rather wait a bit. Whatever the course of action, I wish you the very best. You're obviously an awesome mom and a smart woman. Keep us posted. We want to hear all about the success I know you'll have.
By the way, I think that this diagnosis happened so fast because YOU made it happen. She's unlucky to have such pain but soooo lucky to have you. I am so glad she hasn't had another attack since just after she started Trileptal and I love the comment you told the guy when he said that it would take 7-10 days to get the MRI. LOVE IT.