Hi all!

Frankly, I don't know if I'm supposed to be in this forum or not. My condition is so complex it confuses me sometimes!

Basically, I've got a hemi-vertebra (half formed vertebra, wedge-shaped) in my spine at T3. It didn't give me any problems in life until recently. That's when the right side of my neck started to go into spams because of the curvature of my spine that was caused by the half vertebra. I got an MRI and when I saw my neurologist she said it was torticollis. She gave me medication, but I am staying off them for as long as I can. She suggested botox, and now my spasms are getting worse so I'm wondering whether to go in for it.

My physiotherapist says the torticollis was bound to happen sometime in life. The thing with torticollis is that it's so rare, many doctors are unfamiliar with it, and in my case, even rare-er. Many doctors I've seen are often puzzled by the various symptoms I feel from time to time.

Anyone else with similar cases? Hope I didn't confuse anyone. Anyway... just wanted to share my story, and say hi!!

Welcome phoenixsong I am new here also. I have never heard of your condition but you did say it was rare. My doctors always tell me with my condition I am hard to treat. So welcome aboard

hi phoenixsong! welcome aboard, i hope someone here knows something regarding your condition. sorry to say i do not.

here to hoping your decision on treatment works out for you!

Hello phoenixsong87 and welcome to NeuroTalk.

My daughter was born with torticollis. She had Physical Therapy when she was an infant. She never had any more problems with it until her late teens, she once again did Physical Therapy (PT) which helped. She is now able to use what she learned in PT whenever the torticollis flares up.

Her doctor also gave her a muscle relaxant but I encourage her to try her PT exercises and heat first.

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

Check into the forum here, there should be a friend there to assist you:

http://neurotalk.psychcentral.com/forum22.html

There are great number of fellow members here to assist as possible. My thoughts and prayers are with you.

Again welcome, looking forward to seeing you around.

Darlene

Thanks everyone! Snoopy, may I ask how long did she undergo PT in her teens? I have since May, it has got better, but not completely, as in the tics still remain. My doc did give me muscle relaxants too, but I haven't touched them yet! Thanks for your response!

Hi phoenixsong87,

She had PT for 6 weeks. They also used a tens unit on her and did massage therapy, she felt the massage therapy was the most beneficial. Like you her torticollis is better but she still has problems...at times.

phoenixsong87, I don't know how bad your torticollis is but I watched (helplessly) as my daughter experienced non-stop spasms that were painful and kept her from sleeping. If this sounds like what you are dealing with try the muscle relaxant --- sometimes the muscle relaxant was the only thing that relieved her spasms, pain and let her sleep.

This happened about a year and a half ago, my daughter is almost 19 now.

I hope you find some relief