Severe dystonia

Hi, newbie here. Okay so I wonder if anyone has any ideas that could help me. I suffer from very severe cervical dystonia (retrocollis and torticollis), so severe that I have been totally bedbound for four months. I cannot walk or sit, cannot do the simplest things such as seeing to personal hygiene. If I try to stand up, my entire upper body gets twisted, and my neck is so twisted that my face is facing the ceiling. I cannot swallow properly and when standing up, I have breathing difficulties. The pain is horrendous. So a really extreme case. Before I became bedbound, I tried physiotherapy, osteopathic treatment and chiropractic treatment, made no difference.

The neurologist tried Botox injections but of course, the dystonia being so severe, it made no difference. She is refusing to refer me for an operation (selective peripheral denervation). I cannot change neurologist as I’m in the UK. She has however referred me for a second opinion but has made my condition out to be “just a minor inconvenience”, resulting from which the hospital I’ve been referred to have put me to the back of the waiting list and that means I can expect to wait a year or two just to be seen.

I have tried begging her to refer me for surgery, she got very upset, shouted at me and accused me of “not appreciating that she was seeing me at all”, and continues to refuse. I told her that I will loose job and home if I cannot go back to work soon, only got a mouthful of abuse from her as a reply. It was shocking, all the more so since I cannot walk away from such situations. Sadly such an attitude from doctors is very common here in the UK. I remain totally helpless in bed, with no one to help. It’s an unbearable situation.

Bit more info - I also got severe scoliosis, which has never been treated as doctors here just tell me “tough, live with it, take painkillers”. Disc bulge at C4 and C5. Scoliosis has never prevented me from doing normal everyday activities, I was perfectly fit and very active until last year and since then very rapidly declined with the dystonia. Neurologist refuses to refer me for a brain scan, which should be the first thing to do as this condition can be brought on by a brain tumor. So I don’t know if I got a brain tumor.

Just wonder if anyone has any ideas what to do or knows of anything that can help. I’ll put this under “neck pain” but it’s obviously far more than just a bit of neck pain, can’t find a more suitable category though.

Bob or Brad, could TENS help her?

My heart goes out to you. It sounds horrific. Just looked it up on Wikipedia, seems there’s next to nothing that traditional medicine can offer.
I have nothing remotely so serious, just a back muscle that goes into spasm, which is now a chronic state after some years with it as a sporadic problem.
What has worked for me is acupuncture. Even if it can’t always cure, it can relax muscles for a while, or relax the mind to give temporary relief at least. I’m now too far away from my regular acupuncturist, but last week I was treated by someone local who practices shiatsu and Dien Chan, or ‘facial reflexology’. It’s a kind of Vietnamese acupuncture that works by pressing on points on the face that correspond with organs and parts of the body. I can safely say that my affected muscle is no longer as stiff as wood: a true breakthrough. It still starts hurting if I bend the wrong way, but recovery is fast with a short rest, or a massage with a massage tool. I’m feeling hopeful again, especially as I can now treat the problem myself by applying pressure to the sides of my nose. I have also bought CBD oil to try. It is supposed to be effective for muscle pain and spasms. Also comes in a salve form. That might help.
But please consider trying acupuncture.
I wish you great strength and courage!