I’m an Internet geek and a research type, and since I live in CT I’m fairly close to NYC and Boston. So, I have good access to the latest therapies and also have some luck on my side. Well, except for the big bleed, aneurysm, and AVM of course LOL. Anyway, I have tried out the Walkaide device, liked it, but purchased and used the Bioness L300 since summer 2007, and used botox shots for spasticity from summer of 2006 - april of this year. I haven’t used botox since then b/c the spasticity went from mild and annoying to very minor and so far haven’t needed it.
So, wanted to brain dump some info for anyone interested in the latest treatments. Email me at ■■■■■■■■■■■■■■■■■■■■■■ or via this site if you need any help on the process or specific info. I find neurologists STILL don’t have much info and no neurologist here is up-to-date on the latest stuff, which continues to surprise me. In the northeast the best neuro rehab hosptitals are Boston - Spaulding Hospital; Cornel-weil in NYC and both use the bioness and probably do the botox. Top neuro-rehab hosptials seem to use high tech devices but also starting to be more available. I bought my L300 for home use and set it up at Cornell-weil in NYC. Haven’t had to update the settings, and haven’t used it much in the last yr, but need to redo the settings due to improvements and it’s now pretty close to me (w/in 30 minutes) which is good.
I also find the website foxnews.com, health section under neurology has great articles. They did a story on me using the device but the link doesn’t work anymore, will post if they respond to my email (I never got a copy of it myself :-).
Here’s an article on the off-label successful use of botox for spasticity. I found Dr. Feingold close to my area, but I’m guessing the best bet is to go through the contact info at botox. com to find a local physiatrist or neurologist who does botox for spasticity. It made my life SOO much easier because it essentially ‘turned off’ my spasticity for 3- 3 1/2 months per treatment so I could exercise, walk and get better. I stopped in april because b/w the botox treatments, the Bioness L300 and working out, it wasn’t so bad anymore though I do have to stretch a ton.
Bioness And Walkaide
Now, Bioness and Walkaide are in the same family of new technology called FES devices (functional electronic stimulation). Both are non-painful, light electric stimulation, wireless, and are placed on the shin and the signal is customized so that it ‘activates’ your shin nerve during your walking to either correct or improve your walking capability.
Though not everyone can use, it works both immediately and may provide long-term improvement to reduce or eliminate your walking (gait ) issues. For purchase, both offere 1 yr 0% financing at the time. In 2007, neither was covered under insurance. Now, some do, some don’t. Both have medicare approval which SHOULD incease the chances insurance covers all or part of it. But both companies will walk you through to find out. Here’s a listing overview including both products from stroke.org
Locally, you can try out both the walkaide and the Bioness at local orthotic. For Bioness, go to their website. I found calling them gave me better info than the website, but that’s probably not true anymore. The Bioness websitehas 'getting started and find a facility. You can go to youtube, type in bioness and see some good stories about it.
I paid lots of money for both treatments b/c they were new and just not covered. In april, my botox was covered completely and previously I paid 20% of the botox cost which was $200-400 per. yikes! Bioess wa $6K, walkaide was $4.5K. Both are much more likely to be covered than even a yr ago, though insurance may still be hit or miss. Feel free to ask me any questions, and I’m happy to point you to any web resources. The Bioness H200 is essentially the same as the L300 except for the hand. Both these and the walkaide increase the circulation in the area, should decrease spasticity in the areas, and hopefully help to retrain the brain to reuse the affected area over time. Anyway, these are starting points for those interested.
Both therapies have made dramatic improvements in my life, and I just want to make sure I spread the word on what’s out there. I just saw my neurologist a few months ago and had to explain what the L300 was since he’s still not familiar with it).
There’s much more to them, including precautions and concerns such as with seizures (although 3 neurologist told me they’re not concerned about any seizure risk). Feel free to email me any Q’s via here or at ■■■■■■■■■■■■■■■■■■■■■■. Best of luck to all!