Sorry this happened, KL. I'm sure it certainly is frightening. You don't need more stuff!

Nemsmom, I have almost complete remission of the feet curling into C spasms by taking 1000 mg of magnesium per day. There are other things i take too but the mag was the most important and was advised by a neurologist. If I don't take it I will revert to that type of spasm, always.

Neuro is aware of severe stiffness in AM. That's why he wants the baclofen pump inserted asap. Which for me wont be until medicare kicks in. I haven't had any baclofen injections into my spine. NOONE will be injecting anything into my spine while Im awake again. LPs are bad enough. I swore never again. I'll put up with the stiffness and pain until I can have the pump put in. It may sound crazy to a lot of you's but I have never had a good LP. They were both very HORRIBLE experiences for me.

The intrathecal injections are not as bad or as likely to cause the same problems as a spinal tap because they aren't removing CSF. Although the proceedure is the same, once they have drawn out a little CSF to make sure that they are in, they use the same syringe/needle, with a bit of the CSF in it to inject the Baclofen.

I've never had a reaction to the intrathecal injections like one gets with the spinal tap. The only problem I've ever had was too much muscle relaxation following the injection. Until that happened, I hadn't realized how much I rely on the spasticity to get around. When the Baclofen injection decreased the spasticity too much, the legs were too weak to support my body weight for a few hours.

The other alternative if you do choose to have it, (and you will need to have it as a test before they will put in a pump), is to see if they will allow a radiologist to do it under fluoroscope (A form of X-ray).

For certain, if you've had problems with the spinal taps and require another one, ask for them to do it this way because then they can see exactly where they are placing the needle; so no chance of a "bad poke".

With love, Erika

you gave aperfect description of ADult or Spasmodic Torticollis. Essentially the neck/head doesn't move for a while (like when sleeping) and some muscles go into an intence spasm.

Making it move gently can relieve(some people can be also be low in magnesium, sodium etc which can cause spasms). Heat and gentle forced but sustained movement seem to work best, as does adjusting your sleeping position. Stress, overworking the shoulders &/or neck or not moving during sleep {or all above} can easily lead to torticollis.

Mine was relieved greatly by buying new pillows and fixing my electrolyte levels (they were out of wack). Every time I slept on my new & expensive "memory foam" pillow I would wake up to intense pain and a stuck head. Turns out the new pillows made me sleep more still - and it made my tired old body move very little at night - thus the neck would go into spasm overnight.

Whatever your issue- it is no fun, to say the least! Good luck and relief soon!!

Jane- thank you for that info!
ANN