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Torticollis

Question:

What treatment did you receive for your torticollis? Submit Your Comment

Comment from: Annie, 65-74 Female (Patient) Published: July 30

I have Botox injections from a neurologist for torticollis. I have a good success with it although the last lot of treatment has not been as quick to work.

Comment from: Hambrock 7, 55-64 Female (Patient) Published: April 27

I am 60 years old now, for 40 years I have suffered with torticollis, and Botox never worked for me. The only thing that helped was clonazepam and now my doctors are going to take that away from me at 60 years old. I don't know what options I have to fight this, it's the only thing for relief that I had.

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: Donna Lea, 55-64 Female (Patient) Published: October 30

I took Advil for torticollis.

Comment from: Hopeful in New Mex., 75 or over Female (Patient) Published: September 05

I got a lecture regarding the safety of Tylenol, which I know affects me badly. No advice regarding using ice or warm compresses, which I had been using for my torticollis with good results. I have experienced some ear symptoms and headache, but the doctor didn't address those. I have cervical and degenerative spine problems, but have refused surgery because I know that's not the answer. I'm going to use everything I can, that doesn't involve radical conventional medicine. I'm a nurse, and I will figure this out.

Comment from: Rishi, 45-54 Female (Caregiver) Published: May 15

My mother who is currently around 50 years old suffered from torticollis for the last four years. We tried all the therapy that we could find ranging from acupressure, naturopathy, physiotherapy, yoga, and allopathy but none of them worked. The only option left was Botox treatment, but my mother was adamant that she wouldn't take that treatment. Years passed by without any significant improvement, then we contacted a homeopathy doctor as we had run out of all options. He only superficially examined my mother's condition and then gave a couple of homeopathy medicines with instructed dosage. It was amazing and her condition improved dramatically within a week and she is now fully recovered (she does need to take regular medication from him).

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!

Comment from: jimbadneck04, 55-64 Male (Patient) Published: December 30

I was diagnosed about 10 years ago with torticollis. I take alprazolam for it. The Botox does nothing, can't stretch it. If I go to sleep for 2 minutes it goes away till I wake up. I have had it so long that the area on the left side of my neck to the top side over my ear is always tender. I would do anything to get rid of it. If anyone knows of an electronic hat that would disrupt my brain to allow the spasm to be interrupted, I would gladly be a test patient.

Comment from: hopeful, 45-54 Female (Patient) Published: October 29

I have had torticollis for 4 years now. I tried baclofen, Valium, and Artane. Currently I am on Roxicodone for the pain and Soma (helping less and less). I had cervical fusion for herniation. Bad move. Now it is more difficult to get injections due to metal plate in the neck. I have been going to pain management doctor every month for 2 years. I had acupuncture, physical therapy (made it worse), 3 neurologists, and today I'm going to the fourth. Last Botox did absolutely nothing but empty my wallet. Insurance won't cover! I am willing to try again out of desperation. I am starting to have difficulty swallowing. I feel pressure on my esophagus. I am a registered nurse and single parent and I need to work. Wish me luck. And good luck to all of you.

Comment from: raymond, 75 or over Male (Caregiver) Published: August 25

For infrequent episodes of painful torticollis, a short 5 day course of oral prednisone (20 mg 3 times daily, tapered rapidly and decrementally to 5 mg 3 times daily, before stopping has been effective.

Comment from: Inge, 75 or over Female (Patient) Published: July 22

I have had torticollis on and off since I was about 18 years old, I found the only treatment for me was a visit to my chiropractor. My family doctor only wanted to clear it by giving me pain killers, which to me is not a solution, only a Band-Aid. I will be heading off to my chiropractor on Monday as the weekend is here, I unfortunately woke up this morning only to find I had it again. Happy to say it has been some years since I have had it. My answer to anybody with it is try a chiropractor.

Comment from: Rhi, 25-34 Female (Patient) Published: May 11

I went into the hospital not being able to lift my head off my shoulder. I was in agony and I tried to force my head up in a hot shower and honestly thought I had broken my neck. The doctor told me it was acute wry neck (torticollis), that there was nothing they could do, sent me home with some tramadol and a one-page printout on acute wry neck.

Comment from: cle321, 25-34 Female (Patient) Published: April 07

My case of torticollis was caused by a chiropractic adjustment. During a neck adjustment, my chiropractor ripped my sternomastoid muscle which threw my entire right side into havoc. I rushed myself to the emergency room when I lost all neck mobility where they prescribed steroids, anti-inflammatory medicine, muscle relaxers and a pain medicine. After several weeks of medicinal treatment and physical therapy, I finally have relief. I will never go to a chiropractor again.

Comment from: michelle, 35-44 Female (Patient) Published: March 31

About 2 years ago I noticed my head would turn to the right. I figured it would just go away, but instead it got a lot worse! Now my head locks to the right and it is very painful. I researched my symptoms online and discovered it to be torticollis. I don't have insurance so I went to the local clinic and was prescribed Flexeril and tramadol. The medications stopped working pretty quickly. I tried a heating pad and it made the pain worse. I can only relieve the pain with ice. My heart goes out to anyone who lives with this painful disease.

Comment from: lyndabyrd, 55-64 Female (Patient) Published: July 29

I woke up one morning with acute pain in my neck that traveled through my shoulder and then down my arm. The doctor gave me a shot for inflammation, and then prescribed meds for inflammation, Valium, and Vicodin. It's helping the torticollis, but rough on my stomach.

Comment from: Parker, 65-74 Female (Patient) Published: June 06

I have had chronic spasmodic torticollis for 11 years. I have had Botox injections every three months for the past 10 years. I don't feel that my condition is improving at all. My quality of life is decreasing and I wonder sometimes if it is worth it all. Life in constant pain is questionable. Quality vs quality. I have had to give up my career and this depresses me so much. I am becoming reclusive as the pain gets worse when I go out; even to do the groceries. I get so tense that I feel like I am choking. I am wondering if life is worth it.

Comment from: MaryH123, 35-44 Female (Patient) Published: November 21

I had surgery for torticollis when I was 12 and eventually my muscle basically grew back I guess. I hate that I cannot find much information on it.

Comment from: MesaLinda, 55-64 Female (Patient) Published: July 29

I saw a nurse practitioner in a pain medical management office where I go due to severe back pain relating to scoliosis, DJD (degenerative joint disease), and several other spine conditions. She reduced my pain medicines and took my hand and prayed out loud for me! I go to a doctor for science, not religion! The office ladies told me I won't be seeing her on my next visit. I had been suffering with this condition for almost a month at that time. She didn't even name it. I ended up going to an urgent care after a few more weeks of intolerable pain. I am already on a muscle relaxer and 2 pain medicines and was bed bound due to torticollis. I was told by urgent care to stretch my neck and if it hurt I was doing it right. I wasn't even shown how to do stretches correctly. My chiropractor didn't even give it a name or prognosis other than, 'you are a mess!' Where have all the good doctors gone! I certainly hope others have better luck than I am having. I can't drive because I can't turn my head. It even hurts to brush my hair. Being a retired nurse I have lost faith in the medical system, especially if you are on Medicare.

Comment from: ST Patient, 55-64 Female (Patient) Published: June 19

I have had torticollis for about 40 years. I want to say please see a neurologist who specializes in movement disorders. It is considered a rare disease and most neurologists have no experience in treating it. General practice era do not treat it. There are resources on the internet and organizations that can offer much guidance.

Comment from: Mieya, 25-34 Female (Patient) Published: February 16

I am born with twisted neck. I am 29 years old now. I have not taken any medicine or treatment for it.

Comment from: Ken, 55-64 Male (Patient) Published: December 16

I was diagnosed with torticollis four years ago. Unlike many of the other contributors I have no pain and no real restriction of movement. My head is just continually turned to the right and up. I have had Botox treatments for a few years. They have not helped with the symptoms. I have seen a chiropractor several times. They can effect or even eliminate the symptoms, but it only lasts for 8 to 10 hours. It takes a conscious effort for me to straighten my head. Everyone asks, “What's wrong with your neck?”

Comment from: Leo, Male (Patient) Published: December 02

I've been suffering with torticollis for almost seven years. I started to get Botox injections for the last two years. It helps but I still have pain burning sensation in my right side and my neck and back. Sometimes I couldn't go to the stores because people would look at me all crazy and ask me what's wrong with your neck and that would trigger to more twisting of my neck.

Comment from: dlm412, 55-64 Female (Patient) Published: August 01

I've received Botox shots every 3 months for 15 years. I still get some relief from the Botox but not like I did early on. I get 400 units at a time. I have muscle spasms and jerks along with turning of the head. Sometimes I wonder how I can deal with this for the rest of my life. Twice the shots were given too close to the throat and I would choke on my saliva. I lived on baby food for weeks. I take Flexeril at night and Cymbalta in the morning but nothing really helps.

Comment from: Tortie, 45-54 Female (Patient) Published: June 19

I have had torticollis. I have had it for 28 years. At first, I could hardly walk, sleep or sit. I had much pain and I felt like a freak because of the way I appeared. I started Botox injections, which I have been getting about every 3 months for about 10 years. It seemed to help quite well; gone are the days of slumping in chairs and holding my head up with my hand.

Comment from: Freak, 55-64 Female (Patient) Published: May 22

I have had torticollis for over 6 years. Treatment started with steroid, then Botox injections in the neck. This treatment did not work. Have also tried muscle relaxants and tramadol to no avail. I even had surgery to correct twisting along with the herniated cervical discs. My vertebrae do not grind on each other, but I still have pain and twisting. I am so tired of people asking me what's wrong with my neck.

Comment from: emz, 35-44 Female (Patient) Published: May 20

I was diagnosed with this today and I was in such agony it got to the point that I couldn't walk without crying in pain. I was given small amounts of diazepam, codeine phosphate, and tramadol.

Comment from: cicikelley, 45-54 Female (Patient) Published: February 04

Over a year of trigger injections in neck & shoulder every 3 to 4 weeks...ongoing spasms and radiating pain in jaw, arm, and back...so tired of it.

Published: January 15

My mom has had this for years, she has had the Botox injections before but had to stop them because she has no insurance and they are expensive.

Comment from: vichow, 0-2 Male Published: November 27

I know of an extreme case of torticollis in a ten month old that had suffered from birth. One visit to a chiropractor corrected the severe condition and allowed the baby and parents to have a normal life. Up until this time, the baby could not sleep lying down and the mother could not breast feed the child without being in an awkward position.

Comment from: 55-64 Female (Patient) Published: July 12

I was prescribed a muscle relaxant flexeril and then finished off the last bit of pain with a couple of days of Celebrex...after two and a half weeks of pain... relief!

Comment from: turtle, 75 or over Male (Patient) Published: April 10

I have had about 20 adjustments and my extremely stiff and sore neck does not seem to be getting better. They are very, very painful adjustments. I have had this condition now for about six weeks. I think it was caused by a fall I took about two months ago, which ended in a forward roll. I am more than 75 years of age and otherwise in good health.

Comment from: tooskinny, 35-44 Male (Patient) Published: February 27

My chiropractor got me fixed up. I wonder why chiros weren't listed under treatments. Sure was worth it for me.

Comment from: Tina, 45-54 Female (Patient) Published: December 27

I have spasmodic torticollis, dysphasia and tremor. I've been treated with Botox in both vocals and shoulder. Now I just take Valium, for Tremor and Vicodin and massage therapy for pain. Nothing really works but it does ease me thru my work day.

Comment from: sana, Female Published: December 13

I got a valium injection.

Comment from: Terry, 45-54 Female (Patient) Published: October 31

What helped me was my CHIROPRACTOR!

Comment from: bob sacamono, 45-54 Male Published: August 12

I received Botox injections for over eight years without any side effects. This past May I received Botox injections and I developed dysphagia. It got so bad that I could not swallow my own saliva. When I would swallow my saliva would go down my windpipe. A PEG tube was inserted so that I could feed myself. I don't think I have been more afraid in my life. I had to feed myself through a tube for one and half months. The effects of the Botox have worn off almost completely in the last 2 months. Be forewarned that this be can a serious side effect. Botox has relieved the chronic pain I had for years, but now some alternative needs to be found because I am not going to be injected for some time.

Comment from: meesha, 55-64 Female (Patient) Published: February 28

I was given 1 shot of Medrol, and a shot of Lidocaine in the shoulder. I was prescribed Soma as a muscle relaxant, and I felt great the next day. I did use ice and heat after the shots.

Comment from: Bhicks123, 45-54 Male (Patient) Published: July 20

I was treated with Diazepam 5MG for my torticollis; cold and hot packs. Flexibility improved daily, but the use of an air travel neck pillow seem to provide additional relief. I utilized Ibuprofen along with the Diazepam. Chest tightness seems to accompany my neck pain and lack of range of motion.

REFERENCES:

"Congenital Torticollis." WebMD.com. July 21, 2011. <https://www.webmd.com/parenting/baby/tc/congenital-torticollis-topic-overview>.

Freed, Susan Scott, and Colleen Coulter-O'Berry. "Identification and Treatment of Congenital Muscular Torticollis in Infants." American Academy of Orthotists & Prosthetists. <http://www.oandp.org/jpo/library/2004_04S_018.asp>.

Herman, M.J. "Torticollis in Infants and Children: Common and Unusual Causes." Instr Course Lect. 55 (2006): 647-653. <http://www.ncbi.nlm.nih.gov/pubmed/16958498>.

Kruer, Michael C. "Torticollis." Medscape.com. Nov. 18, 2015. <http://emedicine.medscape.com/article/1152543-overview>.

Macias, Charles G., and Vanthaya Gan. "Congenital muscular torticollis: Management and prognosis." UpToDate.com. January 2016. <http://www.uptodate.com/contents/congenital-muscular-torticollis-management-and-prognosis?source=preview&language=en-US&anchor=H22046594&selectedTitle=2~150#H22046594>.

Tao, Kevin. "Acute Torticollis." Medscape.com. Oct. 15, 2015. <http://emedicine.medscape.com/article/794191-overview>.

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