Meds: Can anyone recommend an alternative to Zanaflex (Zanaflex really works for me, but I can't deal with the side effects) for muscle spasticity caused by the nerve injuries? (Valium/benzos totally works for this, but apparently it's strongly disfavored now because of the side effects of chronic use. And because you have to keep upping the dose.)

Muscle relaxers like Flexiril & Skelaxin don't work well for me, and wipe me out. Lyrica and Neurontin (which I took for years for the neuropathy) work fairly well on symptoms, but, as with the Zanaflex, I'm finally decided I can't deal with the side effects.

I have been doing a rotation schedule of a benzo one day, a narcotic the next day, and a flexeril or skelaxin the next, which means I'm able to keep the doses low (I don't build up too much of a tolerance since I rotate), and I mostly have the pain under control and can function day-to-day. But, frankly, I would still like to have a lot less pain and a lot more function. I also get these awful headaches that are like migraines, but (I'm told) are caused by the TOS.

They can inject botox into all the spastic muscles, but it is really expensive (I pay $600 for the medication each procedure, and it has to be CT-guided, and it has to be re-done in 3 procedures every 3-6 months. It's about 6,000 a year to manage it this way, plus the risk they'll inject the wrong structure and damage something). So I'm trying to minimize how much I rely on Botox.

Anyway, I'm looking for thoughts on new meds to try, and would love any suggestions.

Dr. Ahn: Also, does anyone have any thoughts they'd be willing to share on Dr. Ahn? I saw a very positive story here, but also a very negative comment, and now I'm a bit concerned. I see Ahn tomorrow for a consult.

[I have neurogenic and venous TOS (confirmed by MRNs), I've had it for ten years, and I'm contemplating surgery. I have pretty major functional limitations.]

Thanks in advance for any thoughts! My appointment is tomorrow.