United Brachial Plexus Network, Inc.

Thanks for the info Francine, I'm definately going to speak to him about it and research it more myself. We're still hoping we won't have to go down that road, but I want to have all the info in case we do. We really respect our neurologist opinion and he already stated that we'd have to get a script from TCH if we wanted that type of treatment down the road. I want to research and learn why he doesn't recommend. Thanks for the link. Hope your family has a blessed holiday season.
Cindy

Hi, Jenny. Our daughter, Nicole, used TES also for about 5 months prior to her recent surgery at TCH. When she's done wearing her post-op splint, then we will begin using it again. We noticed Nicole bending her arm more after she started using it, but in our case too it is hard to determine exactly how much of her progress was due specifically to TES at the time (could've been any combination of primary surgery, Mod Quad, PT/OT/Aqua PT/TES, etc. etc.). I personally think it contributed to her progress, but again I couldn't say to what degree. If you decide to do the rent to own option that Karen mentioned, I would like to give you a tip on getting the insurance company to approve the unit. Have the therapist who gets you set up on TES do video evaluations in the beginning and every 3-6 months with the minutes and seconds appearing on the video. This is included in Nicole's estim evaluation and can help prove to them the increased fluidity of movement that Francine and Karen discussed. So, even if your son doesn't gain a new movement from TES, then you could show the insurance co. how much more efficiently he performs a particular movement. As far as what info. to include upfront, our dr. letter had essentially the same info. as Maia's letter b/c we see the same BP Specialist and have the same insurance co. so I can't help you further in that area. I do know people here have appealed the use of TES and have gotten the decision overturned. If I remember correctly, one person I can think of who won an appeal for TES is Jennifer, who has a support group in Chicago. You can contact her at Chicagobisupport@aol.com and can visit the website at http://www.allantro.net/bisupport. I don't normally post other people's email addresses, but since she has a website & the addy is on the site, I don't think she'll mind. I hope this helps. -Tina

Cindy, I was just wondering, would you be able to use a script from TCH or would your insurance require you to get one from a local dr? Also, I'd be interested in hearing about what info. you come up with in your research. Thanks! -Tina (rosesmom315@juno.com)

I'm going to ask Elizabeth's daytime e-stim physician (who was at the Ohio Awareness picnic in October) for suggestions for written documentation about e-stim. I know she has quite a few articles and journals upon which she bases her treatment. She is very current in the latest e-stim stuff...although she doesn't use nighttime e-stim. We go through Mayatek for that.

I will ask my daughter's daytime e-stim physician about this "numbness" mentioned by your neurologist. We haven't seen any negative results of e-stim...only more fluidity of movement and strength.

One thing I do notice after a 15 treatment set at a minimum level is that Elizabeth gets a real burst of function once the treatment is over. Before a session, for example, if I have her throw a ball with her affected arm, she throws it with her arm out to the side...she cannot lift it over her shoulder with her hand/ball by the ear. However, following a treatment, she can bring her hand up and throw the ball "normally" (for a 3 year old anyway!)...as well as her unaffected arm. As I see it, it allows her to use her muscles/exercise her arm much more efficiently.
We focus on her biceps because that is her weak point.

Our neurologist will try to appeal for us first. He will contact the certified therapist for articles and other information.

If that fail, I am thinking about working with a patient advocate as Mary did. I will find more information about that.

Thank you for all your ideas.

Jenny

Mary,

I'd like to ask you about hiring a patient advocate to deal with the insurance company about getting the TES unit approval. Our neurologist will first try to appeal for us.

If that does not work, I need to seek some help from the patient advocates. Could you email me about the process, how does it work, etc? Prior to this, I do not know anything about the patient advocate services.

Please email me after the holidays, I know you must be busy.

Have a wonderful Christmas!

Jenny
jhuang@columbus.rr.com

please email me info about appealing your insurance company's decision. We are in your same shoes.
CyndiKK@yahoo.com