Connect
← Return to Cervical dystonia (Spasmodic Torticollis): Looking for support
Discussion
Cervical dystonia (Spasmodic Torticollis): Looking for support
Spine Health | Last Active: Jan 13, 2022 | Replies (28)Comment receiving replies
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
Replies to "This is great to hear. I myself suffer from cervical dystonia. I’m in with a movement..."
Connect
@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