Viewer Comments: Torticollis - Treatment

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Torticollis - Treatment

What treatment did you receive for your torticollis?

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Comment from: ela, 0-2 Female (Caregiver) Published: December 07

I am a mother of a 2 year old boy. He suffers from torticollis since birth. He undergoes therapy already, yet no improvement. We have sought help from several doctors. We were confused from which specialist we should seek for an advice. A certain doctor referred us to a neurologist. She wants my baby to undergo CT scan. As parents we are still hesitant to do it in his young age. We asked if it is ok to apply TOT collar but they told us it is not needed. Until now there is no improvement. He still suffers from it.

Comment from: Shay_1, 45-54 Female (Patient) Published: June 22

My torticollis journey started about 6 years ago. I didn't know what was going on with my neck. All I knew was that it wanted to turn and it was difficult to keep it straight. Well, this was also the beginning to an issue with anxiety. I was so anxious at work that this was happening, I left work and went straight to urgent care. I was given a prescription for Ativan. So now I am dealing with anxiety and neck pain. It took a little over a year to get correctly diagnosed but in that time I was given different pain/anxiety medications. I was also now dealing with depression as my activity level greatly decreased and I gained about 40 lb and basically just tried to get through my work day so I could go home to rest. I was correctly diagnosed when I was sent to the pain specialist to get a cortisone shot. I think it might have been maybe 10 minutes into the doctor visit and he said I don't need cortisone, I need Botox, and I finally had an answer. It was bittersweet but I was happy to finally get some relief from the pain. I started Botox injections and went every 3 months with relief until I couldn't afford it anymore. It has been about 1 1/2 years since my last injection. I'm feeling like I may need to go see the pain doctor soon as my neck is starting to feel tight and I've had some headaches. I can relate to a lot of you out there that are suffering from torticollis.

Comment from: 65-74 Female (Patient) Published: June 13

I have had a tilt in my head for a few years, but it wasn't painful until about 2 years ago. I was in so much pain, I thought it was a brain tumor and the only way to make it through the workday was to close the office door and lay flat on the floor. Between my original general physician (GP) and the pain management place he sent me, I had an epidural, trigger point injections and a series of pain medications that made me sleepy, unable to focus and I just didn't feel like myself. Four months in I got a torticollis prescription, started having Botox injections and eventually found a physical therapist who had experience with torticollis and a GP who listened. After a year of struggling through the medications and the search for help, I've retired from 25 years in a stressful job. The Botox, Cymbalta and meloxicam are handling the pain, and about a year of physical therapy has given me enough flexibility to turn my head far enough to see over both shoulders. I still have difficulty walking long distances because the tilt on my head hurts my back, but life is manageable again. I never experienced real pain before torticollis.

Comment from: Joy, 55-64 Female (Patient) Published: February 16

I have had torticollis for the past 10 years. I have tried every treatment from acupuncture, chiropractic, Chinese herbal medicine, and massage but nothing has worked. I am on Botox injections every three months which do help to a certain extent. Sometimes the pain is unbearable. I take Paxam and an antidepressant. Sometimes I feel like I cannot keep going with this pain. Lately I have seen an exercise physiologist which has really helped. I noticed that if I keep moving it does help, and also lying down helps. I get very stressed when I have to go out and my neck muscles tighten up. I am trying meditation, but I wonder how much longer I can keep going like this. Everything makes me so tired.

Comment from: Mike, 55-64 Male (Patient) Published: February 16

My torticollis started at age 48 to 49, and I have been receiving Botox/Xeomin, now for over 8 years along with diazepam. I was started on baclofen and titrated up to a very high level by a neurologist, and after I finally made him understand it was making it worse, he started weaning me off of it, a long process! I also went through a bout of osteomyelitis and endocarditis, and hospitalized for 2 1/2 weeks. After that was over with, my primary care physician (PCP) prescribed Lortab and I managed with those for 4 or 5 years, until they stopped prescribing them. All this time, I kept receiving the injections. I would get some relief, depending on my activity, which makes the situation or battle much worse, I'm sure you know what I am referring to. I switched PCPs, simply because he told me in my 1st meeting with him, he would not write Lortab, nor would he write Ambien, which I have been taking now for several years. My new PCP wrote me the replacement for Lortab, which did no good at all. I finally got in to a pain doctor. This guy had me on so many drugs, I haven't felt this bad since before and during my torticollis, he was giving me several different opioids and I could get no relief. I have switched pain doctors and this guy has had me on 45 mg ER morphine and 1200 mcg fentanyl daily. I had great pain relief in the beginning. It depends on a daily basis when I go see him, I might get chided like a small child or treated like a drug addict, sometimes I am not even seen by the doctor. Since I have been on SSI, I am now being made to go on Medicare, which my pain doctor will not take. I am now, as I painfully type this, tapering off of this very powerful drug dependency, and I hope I will get through it and I will be able to still function as I have. Maybe I can better direct the neurologist with the Xeomin injections. I am hoping I might feel better overall, just getting off of those drugs. I know I will still have a very painful neck, but I have to get away from these pain people!


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Patient Comments & Reviews

The eMedicineHealth doctors ask about Torticollis:

Torticollis - Stretches

What stretches have you tried to alleviate your torticollis?

Torticollis - Causes

What was the cause of your torticollis?

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