Spasmodic Toticollis Cervical Dystonia and Botox

[spinceara]

interesting

[PearlnotBill]

this isn't very accurate fyi

[Sojacheerleader]

1:44 :(

[stopthemud]

The doctor at the government run hospital in Maryland experimented on me for one year. I was given virtually no information on the side effects of the drug. There was no "standard of care,' no 'expectation setting,' no follow up, and no cared how i felt during the intervening periods. There was only a curt "hurry up i have other patients to see. Get a promise for a standard of care as describe in "The Dystonia Patient." I will avoid medical learning clinics and see real doctors.

[Angelfirebeat]

I recieved botox treatments for about a year and have experienced respiratorial problems such as, can't run more than 150m without messing up my breath , feels like I have extra air in the lungs I can't get rid of :( .

The doctors just informed me of short term side effects , such as , heavy head , feeling dizzy, disorientation .

I stopped the treatments and just feel better knowing Im not poisening by body with a drug that provoces other difficulties , I think I have enough as is already is.

[bsunshinez]

Botox helped my cervical dystonia but I am fearful that is caused respiratory/cough/cold symptoms the last two times I received the injections. Is there anyone else who has had that problem? I am due for my next injections at Mayo and wondering if I wil get sick again. Any information will be helpful!

[bcvcv]

Hi, I have had 2 lots of botox injections for cervical dystonia,the 1st time i got the flue, the 2nd time i did;nt ,my neuologist weakend the 2nd dose and gave me 11 injections in my neck,,i have side effects of very weak neck and my head feels very heavy,how about you do you have any 0f these symptoms,cheers.

[bsunshinez]

Is there anyone out there who has had a serious respiratory infection/cough/cold develop after botox injections for cervical dystonia? I believe that the last two times I had the injections they produced these symptoms. I am due to get the injections again and we will see if the adverse reactions are from the botox or not. Any help will be appreciated. Mayo Clinic neurologist are wonderful but have not seen these reactions.????

[Draziom203]

@bsunshinez Botox can cause pnumonia, bronchitus, pulmonary infection etc. It is a poison and has many side effects like every medication. You must be careful and also outweigh risks vs benefits.

[ShakeyAmy]

i had botox treatment for over a yr then tried the baclofen oral. the highest dose did little but i qualified for the trial which they do before the pump. i got the pump one year ago and was able to manage my dystonia/cd/and tremors by doing little phy activity and sleeping alot. the pump has helped with head to toe muscle spasms "storms" but cd has gotten worse and out of all my symptoms the neck pain is unbearable. i went 4 botox today and hope tomorrow will be better.fight for a cure!

[bsjsesaz]

Neurologists tell CD patients not to see chiropractors. I did see one, ignoring doctor's orders and his manipulation made things worse. I would warn people to speak with a much more educated "neurologist" and speak with him/her regarding treatment. Also there is a link between being of Jewish descent and dystonia.

[swederland2002]

You guys should go to a Chiropractor that is an "Upper Cervical" Chiropractor. Im in Chiro school and just reviewed a journal about some patients that were treated with the Palmer Upper Cervical technique and all of them had substantial improvement. Your "average" Chiropractor on the street corner may be able to help you but one that specializes in the upper cervical has a much greater chance. The body is designed to heal itself.

[kathrynkmarie]

Chiropractors may be very helpful but not for my CD. You may want to do some research on CD. It is a Central Nervous System Disorder. The brain tells the muscles to constantly spasm. I had symptoms for 5 years without being diagnosed,I was beginning to think I was crazy. I tried PT,chiropractors, massages. Just started botox - which has provided some relief. This is something that may feel better but there is nothing to "heal"!!

[Draziom203]

@kathrynkmarie Did your CD cause you headaches or muscle spasms in your head?.

[MissMeowsic]

I have had torticollis for years and tried everything and several chiropractors. Many times they could not manipulate the neck because the muscles are so tight they would have to peel me off the ceiling. I thought of chiropractic or pain management as a temporary cure for a permanent problem.

[MissMeowsic]

I finally had a cervical fusion on 3 levels and dissection for bone spurs, stenosis, chronic spondylosis and radiating nerve pain down my arm. I also have arthrtits which I know can never be eliminated. I will never go to another chiro for my neck because of what I know now.

[MissMeowsic]

The bones and the anatomy of the neck are very delicate and should not be twisted and manipulated the way chiropractors do. I believe it's dangerous and can cause a stroke or what if the patient has existing bone spurs and imagine what those bone spurs do to the tissues surrounding them when twisted or violently jerked by a chiropractor? I feel some dystonia returning 3 years after my surgery so it has been in remission, but I have found acunpuncture to be very helpful.

[laxbro4]

I have CD too. It's only been 2 years and I'm afraid it will get worse. I hear it plateaus at 5 years. Botox helps but it's expensive and it wears off. What do you think of taking Baclofen?

[LOCInumber1fan]

Botox does not work for everyone, but if there is anyone out there who has cervical dystonia, PLEASE TRY BOTOX. Even if it doesn't work the first time, TRY AGAIN. Get an neurologist who has treated dystonia patients before. Depending on which muscles are injected, the doctor may have to tweak the dosage of BOTOX; sometimes it takes a few times until the EXACT muscles are injected (trial and error), but IT IS WORTH IT!

[LOCInumber1fan]

I have cervical dystonia. My neck was stuck in one position, and it was so embarassing. People came up to me and asked me, "What's wrong with you?" People are so rude...

My dystonia is better now because of getting Botox injections in my neck. I don't know what I would do without Botox.