I tried the Botox shots for my cervical dystonia and they did seem to help. I'm not able to take any of the pain medications so I can't address those problems. My problem is in finding a neurologist who is interested in helping. Most of them just have an attitude of "there's nothing we can do". Please let me know if you decide to do the Botox and how it works for you. Good luck.
@vicky9, @crepass. and all...My son is on 100% disability for 20 years, developed cervical dystonia at age 35. He has lost the important years of his life, suffered immensely, and lives an isolated, painful, lonely life. I help him as I can.
It took me so long and hard searching to find someone qualified to diagnose his problems. He is now, finally, seeing an internationally known leader in the Movement Disorder field of Neurology at Mayo Clinic Florida. It's a gift from above!
This wonderful doctor is caring, understands this and all movement disorders He truly understands my son's issues, he knows exactly where to give the shots, how much Botox to deliver with each, My son tells me this doctor is the best of several who've given him botox shots. He thinks it's miraculous. The help he gets from these treatments is helping him so much. He was on all the opioid meds for many years. With no diagnosis, the docs often thought he was a druggie. He's not. He's in severe pain and couldn't get help for years. I've fought long and hard to get him to this point
He also now, for 2 years, has a morphine pump, with dilaudid. It has taken most of the pain and gotten it under some degree of control, except the shoulder/neck/arm pain that Botox helps.
His third leg of help is medical marijuana. He uses MM daily, vapes, and also the CBD/THC lotion. I use it to help relieve pain in my hands, feets, legs, and back. Arthritis pain, fibro, and sarcoid pain. It is amazing. I also used it on a horrible rash/blistering on my body and it instantly stopped the pain and led to healing. It's amazing stuff.
Find a Movement Disorder specialist, neurology. This is the only doctor who can properly diagnose and treat cervical dystonia. He got the pump from his pain clinic and can now add a boost 4-5 times daily if needed. which probably save his sanity, as he can control the Dilaudid based on the pain using a battery-operated device to click and add med.
It's a combinaltion of treatments developed for the patient's specific needs. I recommend a major clinic or research center, like Mayo Clinic. This doctor treats patients from all over the world. He has conducted years of research and is well known for his findings in movement. He treats me for Parkinson's symptoms, well.
I hope this information has helped and will help you find peace. This is a horrid disorder and very difficult to diagnose and treat effectively. After many years of pain and mistreatment, he is finally finding some relief, from his Mayo doctor.
Blessings and may your find help and peace.
elizabeth
@vicky9, @crepass. and all...My son is on 100% disability for 20 years, developed cervical dystonia at age 35. He has lost the important years of his life, suffered immensely, and lives an isolated, painful, lonely life. I help him as I can.
It took me so long and hard searching to find someone qualified to diagnose his problems. He is now, finally, seeing an internationally known leader in the Movement Disorder field of Neurology at Mayo Clinic Florida. It's a gift from above!
This wonderful doctor is caring, understands this and all movement disorders He truly understands my son's issues, he knows exactly where to give the shots, how much Botox to deliver with each, My son tells me this doctor is the best of several who've given him botox shots. He thinks it's miraculous. The help he gets from these treatments is helping him so much. He was on all the opioid meds for many years. With no diagnosis, the docs often thought he was a druggie. He's not. He's in severe pain and couldn't get help for years. I've fought long and hard to get him to this point
He also now, for 2 years, has a morphine pump, with dilaudid. It has taken most of the pain and gotten it under some degree of control, except the shoulder/neck/arm pain that Botox helps.
His third leg of help is medical marijuana. He uses MM daily, vapes, and also the CBD/THC lotion. I use it to help relieve pain in my hands, feets, legs, and back. Arthritis pain, fibro, and sarcoid pain. It is amazing. I also used it on a horrible rash/blistering on my body and it instantly stopped the pain and led to healing. It's amazing stuff.
Find a Movement Disorder specialist, neurology. This is the only doctor who can properly diagnose and treat cervical dystonia. He got the pump from his pain clinic and can now add a boost 4-5 times daily if needed. which probably save his sanity, as he can control the Dilaudid based on the pain using a battery-operated device to click and add med.
It's a combinaltion of treatments developed for the patient's specific needs. I recommend a major clinic or research center, like Mayo Clinic. This doctor treats patients from all over the world. He has conducted years of research and is well known for his findings in movement. He treats me for Parkinson's symptoms, well.
I hope this information has helped and will help you find peace. This is a horrid disorder and very difficult to diagnose and treat effectively. After many years of pain and mistreatment, he is finally finding some relief, from his Mayo doctor.
Blessings and may your find help and peace.
elizabeth
Thanks Elizabeth, so much helpful information. I am glad your son have found help through Mayo doctors, I am new on this journey and have no pain so far. My tremors are still somewhat controllable except in stressful situations. I will get first Botox txs in January. It is good to know that there is a close Mayo doctor in Florida if I need help.
I tried the Botox shots for my cervical dystonia and they did seem to help. I'm not able to take any of the pain medications so I can't address those problems. My problem is in finding a neurologist who is interested in helping. Most of them just have an attitude of "there's nothing we can do". Please let me know if you decide to do the Botox and how it works for you. Good luck.
Thanks Elizabeth, so much helpful information. I am glad your son have found help through Mayo doctors, I am new on this journey and have no pain so far. My tremors are still somewhat controllable except in stressful situations. I will get first Botox txs in January. It is good to know that there is a close Mayo doctor in Florida if I need help.
@creoass and all...Is your present doctor who will give you the botox shots a neurologist? movement disorder specialty in neurology? If your illness progresses and the shots don't seem to help, suggest you look for the sub-specialty of a movement disorder physician. It has made an enormous improvement in my son's care.
He finds great help from good massage therapy as well, to loosen the tightening muscles. The doctor has referred him for acupuncture.
The integrated services are helpful for him.
blessings as you get the help for health! elizabeth
@vicky9, @crepass. and all...My son is on 100% disability for 20 years, developed cervical dystonia at age 35. He has lost the important years of his life, suffered immensely, and lives an isolated, painful, lonely life. I help him as I can.
It took me so long and hard searching to find someone qualified to diagnose his problems. He is now, finally, seeing an internationally known leader in the Movement Disorder field of Neurology at Mayo Clinic Florida. It's a gift from above!
This wonderful doctor is caring, understands this and all movement disorders He truly understands my son's issues, he knows exactly where to give the shots, how much Botox to deliver with each, My son tells me this doctor is the best of several who've given him botox shots. He thinks it's miraculous. The help he gets from these treatments is helping him so much. He was on all the opioid meds for many years. With no diagnosis, the docs often thought he was a druggie. He's not. He's in severe pain and couldn't get help for years. I've fought long and hard to get him to this point
He also now, for 2 years, has a morphine pump, with dilaudid. It has taken most of the pain and gotten it under some degree of control, except the shoulder/neck/arm pain that Botox helps.
His third leg of help is medical marijuana. He uses MM daily, vapes, and also the CBD/THC lotion. I use it to help relieve pain in my hands, feets, legs, and back. Arthritis pain, fibro, and sarcoid pain. It is amazing. I also used it on a horrible rash/blistering on my body and it instantly stopped the pain and led to healing. It's amazing stuff.
Find a Movement Disorder specialist, neurology. This is the only doctor who can properly diagnose and treat cervical dystonia. He got the pump from his pain clinic and can now add a boost 4-5 times daily if needed. which probably save his sanity, as he can control the Dilaudid based on the pain using a battery-operated device to click and add med.
It's a combinaltion of treatments developed for the patient's specific needs. I recommend a major clinic or research center, like Mayo Clinic. This doctor treats patients from all over the world. He has conducted years of research and is well known for his findings in movement. He treats me for Parkinson's symptoms, well.
I hope this information has helped and will help you find peace. This is a horrid disorder and very difficult to diagnose and treat effectively. After many years of pain and mistreatment, he is finally finding some relief, from his Mayo doctor.
Blessings and may your find help and peace.
elizabeth
This is great to hear. I myself suffer from cervical dystonia. I’m in with a movement specialist. Rescently my injection dr has left so I will need to find a new one. I see the pain clinic dr once a month and I’m in Vicodin and also rescently use medical marijuana for pain. The pain in my arms is getting unbearable. I’ve been not working the last 2 years however was diagnosed 5 years ago. I’m not sure how much more I can take. I’ve also been suffering with headaches and tremors
This is great to hear. I myself suffer from cervical dystonia. I’m in with a movement specialist. Rescently my injection dr has left so I will need to find a new one. I see the pain clinic dr once a month and I’m in Vicodin and also rescently use medical marijuana for pain. The pain in my arms is getting unbearable. I’ve been not working the last 2 years however was diagnosed 5 years ago. I’m not sure how much more I can take. I’ve also been suffering with headaches and tremors
@agresham123 and all...My son's previous neurologist was a movement disorder specialist and gave him botox for a few years. She left to go to Cleveland, maybe the clinic, don't know. But, it was a terrible disruption. It took months to get another doctor in the group to give him the shots. She didn't do them the same as the previous doctor and he got little help from them. Once the doctor canceled due to something personal and he couldn't get an appt with another doctor since they hadn't seen him before. Talk about a room of craziness....it made life for us a horror. It was months past his 3 month time between his botox shots, months late getting the shots, when I got him into this wonderful Mayo situation. I can not emphasize how important to have a more stable situation with no interruptions and use multiple procedures for pain control.
We will visit with his neurologist soon and discuss any other possible treatment Is he a candidate for deep brain stimulation? For cutting the nerve that runs to his shoulder and arm, 24/7 pain and can't use his arm now, He told the doctors years ago he was willing to lose the use of the arm to stop the pain. Now, apparently, it is done when necessary.
it is absolutely necessary for your to have open and honest discussions with your doctor. If possible, it helps to have someone advocate with you/for you, as I have done for my son. I'm now 74, have multiple health issues and he's a 53-year-old adult who needs to make his own decisions. I can see where he is now, with the pain pump, MM, botox and acupuncture, and massage regularly, we have a decent system going. But, it only takes one something to screw it all up and set him back terribly. So, it's primary to have a team working with you, all who know your history and issues well, and will work to make your life tolerable.
I hope you can get that kind of help. Get your team working with you and do whatever you must to survive, to get the best possible outcome. I'm so sorry you have this life. It's not good, but when you find the right doctor to lead the team, you will get help. Blessings on this crazy painful journey. elizabeth
Does anyone have or know of someone who has cervical dystonia? I have had this since 2012, and I am always looking for anything that helps with the pain and spasming muscles.
Does anyone have or know of someone who has cervical dystonia? I have had this since 2012, and I am always looking for anything that helps with the pain and spasming muscles.
Hello @armor2 and welcome to Connect. I wanted to help get you familiar with how to search for discussions. At the top of the screen, there is a search bar where you can type in a topic. I found 2 discussions on cervical dystonia in the Spine Health group where other members are sharing their experiences.
To find the spine group you can scroll through the list of groups or click this link.
Connect
Connect
Like
Helpful
Hug
@vicky9, @crepass. and all...My son is on 100% disability for 20 years, developed cervical dystonia at age 35. He has lost the important years of his life, suffered immensely, and lives an isolated, painful, lonely life. I help him as I can.
It took me so long and hard searching to find someone qualified to diagnose his problems. He is now, finally, seeing an internationally known leader in the Movement Disorder field of Neurology at Mayo Clinic Florida. It's a gift from above!
This wonderful doctor is caring, understands this and all movement disorders He truly understands my son's issues, he knows exactly where to give the shots, how much Botox to deliver with each, My son tells me this doctor is the best of several who've given him botox shots. He thinks it's miraculous. The help he gets from these treatments is helping him so much. He was on all the opioid meds for many years. With no diagnosis, the docs often thought he was a druggie. He's not. He's in severe pain and couldn't get help for years. I've fought long and hard to get him to this point
He also now, for 2 years, has a morphine pump, with dilaudid. It has taken most of the pain and gotten it under some degree of control, except the shoulder/neck/arm pain that Botox helps.
His third leg of help is medical marijuana. He uses MM daily, vapes, and also the CBD/THC lotion. I use it to help relieve pain in my hands, feets, legs, and back. Arthritis pain, fibro, and sarcoid pain. It is amazing. I also used it on a horrible rash/blistering on my body and it instantly stopped the pain and led to healing. It's amazing stuff.
Find a Movement Disorder specialist, neurology. This is the only doctor who can properly diagnose and treat cervical dystonia. He got the pump from his pain clinic and can now add a boost 4-5 times daily if needed. which probably save his sanity, as he can control the Dilaudid based on the pain using a battery-operated device to click and add med.
It's a combinaltion of treatments developed for the patient's specific needs. I recommend a major clinic or research center, like Mayo Clinic. This doctor treats patients from all over the world. He has conducted years of research and is well known for his findings in movement. He treats me for Parkinson's symptoms, well.
I hope this information has helped and will help you find peace. This is a horrid disorder and very difficult to diagnose and treat effectively. After many years of pain and mistreatment, he is finally finding some relief, from his Mayo doctor.
Blessings and may your find help and peace.
elizabeth
-
Like -
Helpful -
Hug
1 ReactionThanks Elizabeth, so much helpful information. I am glad your son have found help through Mayo doctors, I am new on this journey and have no pain so far. My tremors are still somewhat controllable except in stressful situations. I will get first Botox txs in January. It is good to know that there is a close Mayo doctor in Florida if I need help.
-
Like -
Helpful -
Hug
1 ReactionI will let you know how it goes. Thank you for responding.
@creoass and all...Is your present doctor who will give you the botox shots a neurologist? movement disorder specialty in neurology? If your illness progresses and the shots don't seem to help, suggest you look for the sub-specialty of a movement disorder physician. It has made an enormous improvement in my son's care.
He finds great help from good massage therapy as well, to loosen the tightening muscles. The doctor has referred him for acupuncture.
The integrated services are helpful for him.
blessings as you get the help for health! elizabeth
-
Like -
Helpful -
Hug
1 ReactionThis is great to hear. I myself suffer from cervical dystonia. I’m in with a movement specialist. Rescently my injection dr has left so I will need to find a new one. I see the pain clinic dr once a month and I’m in Vicodin and also rescently use medical marijuana for pain. The pain in my arms is getting unbearable. I’ve been not working the last 2 years however was diagnosed 5 years ago. I’m not sure how much more I can take. I’ve also been suffering with headaches and tremors
-
Like -
Helpful -
Hug
2 Reactions@agresham123 and all...My son's previous neurologist was a movement disorder specialist and gave him botox for a few years. She left to go to Cleveland, maybe the clinic, don't know. But, it was a terrible disruption. It took months to get another doctor in the group to give him the shots. She didn't do them the same as the previous doctor and he got little help from them. Once the doctor canceled due to something personal and he couldn't get an appt with another doctor since they hadn't seen him before. Talk about a room of craziness....it made life for us a horror. It was months past his 3 month time between his botox shots, months late getting the shots, when I got him into this wonderful Mayo situation. I can not emphasize how important to have a more stable situation with no interruptions and use multiple procedures for pain control.
We will visit with his neurologist soon and discuss any other possible treatment Is he a candidate for deep brain stimulation? For cutting the nerve that runs to his shoulder and arm, 24/7 pain and can't use his arm now, He told the doctors years ago he was willing to lose the use of the arm to stop the pain. Now, apparently, it is done when necessary.
it is absolutely necessary for your to have open and honest discussions with your doctor. If possible, it helps to have someone advocate with you/for you, as I have done for my son. I'm now 74, have multiple health issues and he's a 53-year-old adult who needs to make his own decisions. I can see where he is now, with the pain pump, MM, botox and acupuncture, and massage regularly, we have a decent system going. But, it only takes one something to screw it all up and set him back terribly. So, it's primary to have a team working with you, all who know your history and issues well, and will work to make your life tolerable.
I hope you can get that kind of help. Get your team working with you and do whatever you must to survive, to get the best possible outcome. I'm so sorry you have this life. It's not good, but when you find the right doctor to lead the team, you will get help. Blessings on this crazy painful journey. elizabeth
-
Like -
Helpful -
Hug
2 ReactionsDoes anyone have or know of someone who has cervical dystonia? I have had this since 2012, and I am always looking for anything that helps with the pain and spasming muscles.
Hello @armor2 and welcome to Connect. I wanted to help get you familiar with how to search for discussions. At the top of the screen, there is a search bar where you can type in a topic. I found 2 discussions on cervical dystonia in the Spine Health group where other members are sharing their experiences.
https://connect.mayoclinic.org/group/spine-health/To find the spine group you can scroll through the list of groups or click this link.
You can find these discussions at these links.
https://connect.mayoclinic.org/discussion/spasmodic-torticollis/
https://connect.mayoclinic.org/discussion/kaia-hi-kaja-this-is-kevin-kelley-just-read-your-post-on/
Do you have a doctor or physical therapist helping you with treatment?
-
Like -
Helpful -
Hug
3 Reactions