Children with Trigeminal Neuralgia

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Comment by tp416 on October 31, 2011 at 5:51am

I'm desperately looking for some direction here!  My daughter has a second appt. with her neurosurgeon in two weeks and he will be looking at surgery.  Her MRI shows a "deep compression of the tn nerve" due to the trauma of a horrible middle and outer ear infection.  My daughter, 16 years old, has researched all of the available treatments (as have I), and she is very interested in the MVD which the doc recommended the first time we saw him.  At that visit, 6 weeks ago, he switched her med to Tegretal.  It has helped decrease the number of episodes a day (from about 60 to about 10), and definitely decreased the length of each episode (from about 2-3 minutes down to 30-60 seconds).  However, the side effects are horrendous!  She can barely keep her thoughts together and has very little quality of life at this point!  She has not been able to attend school for 6 weeks and pretty much just sleeps and lays on the couch-waiting for the next attack.  Any info from other parents would be much appreciated!

Comment by Ally Castellano on October 14, 2011 at 6:07pm

Michelle,

Please keep me posted. It breaks my heart to hear that her pain is back : (

Comment by Michelle Schrieber on October 13, 2011 at 5:36pm

I got the dreaded call from school today, "mommy its back my cheek hurts" .....there is no greater pain than hearing those words...they cut through my heart like a knife. First diagnosed when she was 8....she is now 14. This is the longest remission she has ever had just over14 months! The panic we feel over the fear of its return is almost unbearable. Please God I pray calm her nerve and spare my girl of this horrific pain.

Comment by Laurin on September 5, 2011 at 6:28pm

I don't have the copies of the three MRI tests yet - they might show it, but none of the five neurosurgeons was looking at that.  I would like to know this too!  We have found the neurologists/neurosurgeons, although very professional in their fields, to either admit to no knowledge of this area, or to discount it altogether.

Comment by k_cook36 on September 5, 2011 at 5:32pm

Laurin... wondering if any other testing your son had, xray, or ct scan /mri showed that his atlas vertebrae was tilted????

 

Comment by Laurin on September 5, 2011 at 5:08pm

k cook36 - I am the mom who took my son to the Upper Cervical Chiropractic.  His name is GeorgePaul.  We were SO skeptical about any type of chiropractic anything - but this is different.  There is no jerking, pulling or twisting.  It is a gentle nudge to the top bone (atlas) of your spine.  The NUCCA technique also uses xrays both pre and post correction to show the change.  We are in California and Dr. Flory has a website (atlasspinalcare.com) that has some good information on it even if you don't live here.  We are convinced that GP's pain has not returned because of his treatment there.  He has been pain free since June 19.  This is worth a shot.    www.nucca.org     and      www.upcspine.com   are two websites that may help you as well.  I hope this helps!!   Laurin

Comment by Lily's Mommy on September 5, 2011 at 4:04pm

There is going to be a study released sometime soon, I hope. Dr. Ben Carson did a study with my daughter and other children in it. Lily is the youngest dianosed and treated. I looked into the chiropractic care as well. Knowing what I know now, I wouldn't do it. But, nothing ventured, nothing gained. I talked to several people in chiropractic care, doctors and people that have tried it as well. Lily was 18 months old when she began to show signs of bilateral TN. If you need help with anything, please let me or Kim Armour know.

Comment by k_cook36 on September 5, 2011 at 3:50pm

So it's been a while since I posted.  We have seen a pedi neurologist at Boston Children's and a neuroimmunologist as well.  Noah had a spot on his right thalamus that they found on his MRI.  Scared the hell out of us because  you can't mess with or touch the thalamus. But the neuroimmunologist believes it's been there since birth and it has no blood flow and is inactive and does not believe that is what's causing his pain.  Noah continues to have the pain only during strenuous physical activity.  The neurologists can't seem to find any literature of a child having this type of TN anywhere.  Because it is only intermittent.  He can have it twice a day for days, but then go a week without having it.  I am blessed that it is intermittent after reading some of the posts from the parents here.  It breaks my heart what some of you and your children are going through.  So right now we just wait to see if it goes away or gets better or worse as he grows and then treat the pain then as it's not interfering with daily living.  Upper cervical chiropractic treatment has come up from someone else saying their son had it done and it has taken the pain away.  I am wondering if anyone else has done this here? Or if anyone has had a chiropractic adjustment on their ears?  I'm thinking about looking into it.  I'm not a huge chiropractor fan but figure it might be worth a shot?

Comment by Lily's Mommy on June 12, 2011 at 6:02pm

The support is here! We completely get where you are coming from. Overwhelming felt like a small word to describe what we feel as parents. You are not alone, though it may feel like it at times. We are here. Don't hesitate to send Kim or I a message. My daughter was diagnosed with bilateral TN. She has had it since about the age of 18 months, possibly younger.

Comment by k_cook36 on June 11, 2011 at 7:13am

So I have noticed my son's TN is always and only positional.  His arms are up and his neck is bent, like when pitching in baseball. This is only when it happens.  Anyone else have this?? 

 

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