The National Spasmodic Torticollis Association is a non profit organization dedicated to providing information and support on Spasmodic Torticollis (more commonly referred to as cervical dystonia). Helping patients is our top priority: most of our work involves providing information, answering questions, helping with insurance and Medicare payment problems, and providing hope and moral support. We also work to educate the public and the medical community about Spasmodic Torticollis, advocate for patients’ rights, and support research aimed at understanding, treating, and ultimately curing this painful and debilitating neurological disorder.
- Website (www.cdtorticollis.org) and e-mail support (info@torticollis.org) - Quarterly magazine - Zoom Webinars - Medical advice from health care professionals on our Medical Advisory Board
National Spasmodic Torticollis Association 17151 Newhope Street, Suite 208 Fountain Valley, CA 92708
As a patient of Dr Duane for 30 years I was thankful for his attention to careful testing and treatment of Cervical Dystonia. He was the only doctor who was able to diagnose my condition after over 2 years of pain & muscle spasms that occurred after trauma to my neck and seeing doctor after doctor including, pain medicine specialist MD's, PT specialist and Physiatrists' & Chiropractors I am so grateful to have been a patient under his care and will always be thankful for his compassion and expertise in the field of movement disorders in Neurology and his persistence in helping his patients get the best care. This presentation shows just how much time and effort he has taken on his part to help his patients. Thank you, Dr Duane.
I was diagnosed with Spasmodic Torticollis, now known as Cervical Dystonia in 1994 It was onset in 1992 after trauma of frontal whiplash, I was treated by pain management MD's, PT of different modalities & Physiatrists, yet' nothing stopped the pulling and pain & worse was not knowing why I wasn't getting better. A physiatrist in AZ who after trying acupuncture and Hypnosis among many other regular PT treatments said he wanted me to see a Neurologist he knew that specialized in movement disorders. Finally, after many tests were completed, my neurologist diagnosed it as ST/CD onset from Trauma involving many more muscles than just typical CD. He began EMG guided Botulism Toxin A and I was getting some relief enough that I could at last have a better quality of life but these only lasted about 3 months and I would need repeated injections but as time passed the toxin was getting less effective & I joined NSTA then soon became a support group leader. Eventually my neurologist was able to try Bot B as I became immune to Bot-A, then I became immune to this as well. Trigger point injections were tried at the AZ Mayo clinic. This was also ineffective as it only gave relief of pain for 2 weeks. The only thing left after trying so many different types of treatments and meds was a fairly new longer 12-hour ER pain med combined with Diazepam tried. Finally, this combination worked. I could have a more normal quality of life & was able to over a few years to reduce the amount given while still keeping the pain & pulling under a reasonable management. I still had to learn what could trigger the spasms to get beyond even these meds: excess stress being one, handwriting for long periods, certain exercises in PT that caused more pain. I continued to be closely monitored by my neurologist & from time to time he would test to see if I still was immune to the toxins but unfortunately, I continued to be immune. I was fortunate that he was well known in the NSTA community as this group was so helpful for me to understand how others like myself handled their ST/CD . He was the best MD in helping me over the years. Now at 75 My neurologist is soon to retire & the pain med has become hard to get & not popular as some people sadly abused it or found it addictive. Thankfully I never had that problem, but I now am told I have to get off it as laws were passed to restrict it as still this ST/CD is a rare disorder and still often misdiagnosed or not diagnosed at all I am tapering under supervision of my Primary. As I taper the pain is once again limiting my quality of life. It is good to know that This MD Deepmala Nandanwar is getting videos such as this one out as maybe it will help more people who suffer from this "Pain with Cervical Dystonia" I hope it will help more MD's & patients learn more about this condition & how it affects those who have it. I am grateful that RU-vid has made it available to the public. Maybe one day there will be a true cure & understanding of ST/CD
Diagnosed with Spasmatic Torticollis in 1987. Botox helped with my spams but not the pain I am now immune to it myobloc did not help at all and made it very hard to swallow. I do work full time it’s not easy but I am on my own and would loose everything if I went on disability, PA system. Pain is there everyday all day. Massage helps somewhat and use a heating pad. Depression and anxiety are definitely a part of my life. I take Diazepam daily, baclofen never helped me. I keep pushing on but one thing I know for sure is there are many who are worse than myself. This condition needs to be recognized like other major medical conditions.
I know lot about. That. Car accident. Or. Chiropractor appointment cause. Dystonia. So. India and. Usa now. Theh start manipulation. Treatment. They damage neck. So. Aware of. Chiropractor. God watch . That only place. Pain come from. I do have. By chiropractor. I visit for lower back little pain. Chiropractor manipulate. Entire. Spine. Neck back. Now. Dystonia. Chronia pain. But not treatment anywhere in world 🌍. I take. Baclafan. Neurontin. Botox INJECTION. . not real cure. Carefull. Chiropractor 😊
Let everyone know. Do not go chiropractor. They damage my spine and neck. As well so many others. 😮. Baclfan help. Genapetin help. Chiropractor do inside othet injury 🩸🩸🩸🩸. Chiropractor damage. Make more spasm on neck and lower back. Person go for little pain. Chiropractor damage futher. That convert in cervical dystonia. Yes
Cervical. Dystonia problem come from chiropractor treatment. Or may sever car accident. So care full go with chiropractor. Than manipulate spine and neck loose real curve. Chiropractor not medical field. Botox only help. But. Cervical dystonia not cure. How many injections human take. Jusy. Not go chiropractor. Chiropractor are liable for that problem
Thank you so much for sharing this information. I have been on this journey since being a young adult. This is a different way to look at maybe finding relief. God bless you.
Hello, thank you for sharing. You may have mentioned in the video but i don’t think i heard what test did you get, Xray, CT ect.. to determine that you nasal septum was off?
This video is the best on u tube 💯I felt the stretch in many angles I’m trying to fix my tilted head to the left where my chin goes to the right . Thank you so much this helped me immensely ❤❤❤❤❤❤🎉🎉🎉🎉💯
I went to Dr. Demerjian -- his mouthguard improved my symptoms by 50% (I wasn't able to go back for follow-up treatment at the time though). I'm hoping I can go back for further treatment at some point.
Can we please have a zoom meeting? I have diagnosed cervical dystonia and having some research lately… can I please message you on any communication app?
Hi there! You can email Ken directly at KPrice4000@aol.com. He is happy to answer any questions about his experience with ST and how you can determine if yours may have similar characteristics.
I was diagnosed with spastic Torticollis lateral and cervical dystonia last year. I notice the change in my neck about 7 years ago. Never got an answer till recently. The only thing that started new which is possible why they knew was this mild head jerk. I was reading the progress is 5 years? What exactly does that mean? If my curve was 7 years old will it get worst? I’m I pass that and no hoping I get back to normal with the Botox. Or does that mean the head jerk will get worst for 5 years? I’m so confused. If someone can clarify this for me would be great. Thanks.
In general if the treatments are 90 or more days apart, patients continue to get help with their symptoms. But patient feel the extent of benefit varies somewhat treatment to treatment. This may not identical treatment each time as to exact injection site and strength per. Vial can vary slightly as it is a biological not yet pure chemical product. Drake D Duane, NS, MD Scottsdale, AZ
Dude thank you. I have Tourette’s and my neck tics. Last night it caused instant spasms and pain and i was diagnosed with Torticollis. This helped alot
I have CD and just found this video too!! These look pretty good but what I learned is that using a heating pad or doing these after a hot shower helps to get a better stretch. Much more effective with heat first.
Hi Lanos. The key to these exercises is to listen to your body. Exercising to the point where you are in pain while performing them or will be in pain afterward because you over exerted yourself is not recommended. Start off slow doing a couple of sets of 10 with a break in between. Don't stretch to the point of experiencing pain but you want to get to the point where you can feel a slight pull of the muscles that are being stretched. Give those muscles a day to relax and recuperate and do another set of exercises that focus on other muscles. Then give them a day to relax and move on to the next until you have completed all exercises and then repeat the sets again. Remember to listen to your body and if you are feeling discomfort during or after the exercise, back off a bit on the stretch then slowly progress as you continue the rotation of sets. Baby steps is the key! :)
NEXT SATURDAY! Exploring Music & Movement as a Path to Feeling Better - NIA Webinar Part 2 Saturday, June 25th at 10 a.m. Pacific time Enjoy a Nia Moving to Heal experience using music and gentle movement as medicine We’ll share a quick review + Q/A from your experience of our Part 1 session. Next, pull up that comfy chair and again enjoy a 30 minute movement experience designed to quiet your mind, relax and balance your physical body, inspire a smile and raise your spirits. There will be an opportunity to share your experience afterwards, should you desire. To Register, go to the following link us02web.zoom.us/webinar/register/WN_JRX4XuI0Rv-LcTHeNDdwbg
Sir how can I do this treatment at home.... I am having torticollis at left side I am 20 yr old since childhood havit this.... But due to lack of awareness got no treatment
Hi Doctor, After doing these very good exercises can I expect a good level of improvement after some weeks? Is it possible that I could get total relief from my problem by continuing the exercises over time? Jimmy.
Gracias tengo desde el 2004 con esto y fui sanada con botox y masajes .... por 5 años en tratamiento y paré todo por 10 años estuve normal ,pero este 2020 a regresado Pero no he podido regresar a un nuevo tratamiento por miedo a esta pandemia. Muy buen ejercicio y si tienes a alguien que te ayude con los ejercicios serán más beneficioso
We have spoken to many people who did not know that they had a slight head shake or that they were unable to hold their head centered. It was family or a friend that noticed this and brought it to their attention.
We hope that you are able to find a treatment with the movement disorder Neurologist you are currently seeing. If you have any questions about spasmodic torticollis/cervical dystonia, please email us at info@torticollis.org
He performed DBS on my dad for Parkinson's. This man is a wonderful surgeon and he is changing my dad's life. For the first time in almost eight years my dad is going to feel good again. I can't thank him enough. It's this doctor and GOD coming together to heal! God bless Devin Binder.
